Harlie's pacemaker surgery is scheduled for Tuesday, March 13th. At first we were going to have it done here at MCV. But, I just felt this... feeling in the pit of my stomach. It's not that I don't like MCV, because I do. I truly believe it is the BEST hospital here in Richmond for kids. Period.
But, she's had all of her heart surgeries in DC. And they have a CICU (cardiac intensive care unit). And when I thought about deviating from the "norm", I felt like I was holding my breath. And if we go to DC, that's that, and it's normal and all of a sudden, I don't feel like I'm holding my breath anymore. I just don't want to have to think about it. I have enough I'm thinking about already.
Odds are, it will be a relatively simple surgery. She already has the pacemaker leads installed in/on her heart, so it should be easy to hook up the battery device to the wires. If they go to hook it up (don't you love my technical terms?) and it doesn't work, then they have to do a lower sternotomy and reattach the leads to her heart. But, of course, they won't know till they get in there.
I don't know... you'd think by now (this will be her 21st surgery, I believe) we'd be all old hat and all. But, honestly, some if it scares me more now than it did before. If I'm being truthful - I'm terrified that the second we become complacent with her having surgery, especially if it is a "minor" one in comparison, something horrible will happen.
And as Tom and I sat down to look at our calendars, he doesn't think he can make it to DC for this surgery. He's really busy at work right now (thank God for that!) and he doesn't think he can get away. And I distinctly remember a time when Harlie was having a simple OUT PATIENT procedure and she almost died. He wasn't there. What if? How would I have called him and told him that over the phone?
I know I shouldn't do this - but I can't help but think of the average set of parents and think that both the mom and the dad would be at this kind of surgery for their kid. But, Harlie's just had so many. It's simply not possible for Tom to take that kind of time off from work. And everything about that makes me sad. I can't believe how much she's been through. And we're not even close to being done.
Not even close.
When are we going to get to a place in her life that she can just live her life? Between all her hospitalizations, surgeries, therapies, doctor's appointments, etc. how is she still cooperating at all?
Quite frankly, I'm tired. I AM TIRED! I helped sort like a GAZILLION Girl Scout cookies today in a cold warehouse with wet shoes. It rained all day today and my tennis shoes got wet on the way in and that has to be one of the most annoying feelings in the world - to have cold, wet feet. Ew. Then I had to run to school to relieve Harlie's nurse who leaves at 12:30. Then I went to my friend Lynda's house to switch cars (too long of a story). Then I came home to find Murphy home (when he was supposed to be at school with his running club). So, I rushed him back to school for that (but not before I changed my wet shoes and socks, which instantly made me happier). Then I had to put the seats back in the van (had to make room for cookies). Then I took the kids to go and pick up Murphy. Then I came home and returned the call from DC Children's and scheduled Harlie's pacemaker surgery. I haven't run or done any exercise since the 10 miles I ran on Sunday, and I'm supposed to run 12 this Sunday and I didn't even want to walk to Murphy's school today!
And if I'm so tired, what about HER? She's only five. I bet she's pretty tired, too.
I don't want to take her to Therapy Thursday tomorrow. And she has another follow-up appointment with her ortho surgeon next week about her spinal fusion. In Northern VA, of course. And you know what? I'm not taking her. I'm rescheduling it. Sorry, Doc, but her spinal issues are no longer at the top of our priority list. Sorry, but we have to move on. And how much school can this girl miss? Geez.
Oh! I want to tell you about yesterday! Yesterday morning Cooper woke up bright and early at 5:30am like usual (I truly DO live in paradise!) and was in his normal good, energetic yet cuddly mood. And then he threw up in our bed. On Tom's side, of course. hehe Of course he wasn't there because he goes to the gym at 5am. Lucky ass.
Then I have all the kids downstairs and sitting at the kitchen table. Cooper asks for cereal. Then proceeds to throw up all over the kitchen table and in his bowl of dry frosted mini wheats. And you know what he said afterwards? "Mommy, will you dry my cereal?" "Mommy, I want dry cereal." Sure, honey. Would you mind if I cleaned up the barf on the kitchen table first? And I'm not going to dry your cereal, I'm just going to get you a whole new bowl of cereal, okay? And so much for my Adrenaline class that morning.
Rush, rush, rush everyone out the door. Tom and Murphy walk to school, me, Terri, Harlie and Cooper get in the car. I grab a bowl, just in case Cooper gets sick again. I leave a perfectly fine school located approximately 2 minutes from my home to drive to a different school 10 minutes away. I think I may be getting a wee bit bitter about that. We got to school, dropped off Terri and Harlie and then I head back home. Just as soon as I got on the interstate, Cooper threw up all over himself. I tried to give him the bowl, but he just didn't get it. He threw the bowl to the side and continued to throw up everywhere. Then, through tears he said, "Mommy, I need a wipe." I tried so hard not to laugh. A WIPE? Oh, honey, you need more than A wipe, you need a hose.
Got home and ran inside to get some gloves. Got him out of his car seat and stripped him of his yucky clothes and threw them, along with his car seat cover, in the wash. Despite him clearly feeling crappy, he continued to run and jump and play as if nothing was amiss. Really? I'm sorry, but if you're going to yak, you should have to stay in one place. Simple rules, Buddy.
He threw up another two times after we got home. But I caught it with the bowl. Even though he kept on trying to push the bowl away. I still caught it. Success!
Then he asked for frosted mini wheats again. He ate two bowls, drank some Propel and has been fine ever since. Thankfully. He is a funny little dude. And some good news to report - he's starting to go pee pee on the potty! Woohoo!!!
Okay, I feel better now.
Thanks for listening!
~Christy
Wednesday, February 29, 2012
Monday, February 27, 2012
Boston and their Surgical Plan
For a quick trip, it sure felt long!
Harlie loved the plane ride. Once she saw the tray table come down, she couldn't stop playing with it. She sure wore that poor thing out! Luckily no one was in the seat in front of her. She tried to watch the tv and a movie on the iPad, but the headphones were not staying on her head. And when we put the headphones over her hearing aid, it gave us feedback and buzzed. We'll have to figure out something for her for next time.
And yes, there will be a next time.
After we got into Boston, we checked into our hotel. We got an early check-in (we arrived at 9am) so we could put our luggage down and head on over across the street to the New England Aquarium. We could see it from our hotel room. A HUGE thank you to our wonderful neighbors, John and Jackie for providing the hotel (and a wonderful surprise dessert - chocolate covered strawberries, champagne, cookies and milk!). They are so good to us! We are so blessed to have so many wonderful people supporting us!
The aquarium was really nice. But it was "vacation week" for the kids up there, so it was crowded! After about an hour and a half, she was done. I didn't think she had walked that much. But, I think the crowd got to her. And we did wake her up before 4:30am, so I guess that's to be expected. We took her into the gift shop to see if she wanted anything. She picked up a few things and examined them, but put them back. Then she saw this fish...
went and grabbed it, and sat in her stroller and that was that. No more looking - she was done. We were very surprised considering it's a plush toy (not always been her thing). But, she must be coming around. She didn't let go of it the whole time we were gone.
After the aquarium we went and had lunch. Then we headed over to the Children's Hospital. We got to meet a mom who I'm friends with on Facebook. Her daughter has Goldenhar Syndrome, too. She lives up there and she had her daughter and son with her. They were there for something else and came to the craniofacial clinic to meet us. So, that was really nice. Thanks, Tanya!
After only a few minutes in the waiting room they called us back and took us straight into a conference room where there were about four doctors already sitting. Already sitting!!! Harlie's CT scan images were already up on two large flat screen tvs on the wall. After introductions, more docs came into the room, until there were ten total. Harlie was unfazed and found some tongue depressors to play with while we started discussing her future surgical options.
Overall, we were very pleased. Dr. Bonnie Padwa spoke first. She said, "You came here for a second opinion and that's what we're going to give you - you might not like everything you hear."
No prob, we can handle it.
The only thing that she said that was weird is that the term "Goldenhar Syndrome" is an outdated term. They call it Hemifacial Microsomia. But, in Harlie's case you'd have to add a whole bunch of other stuff to that. Personally, I don't really care what it's called. We're well aware of the issues and are addressing them, so whatever you call it, it doesn't really matter. The only thing that Goldenar does vs. hemifacial microsomia, is that it's a hell of a lot easier to say when explaining it to family and friends. Here are some things interesting things about it:
At the current time, no specific gene has been identified that causes this condition, and it is very rare for someone with hemifacial microsomia to pass the trait on to his or her children. The exact cause of this condition remains unknown but there is some experimental evidence published many years ago suggested that if a small blood vessel ruptures near the developing ear in mice, before they are born, after birth they appear to have hemifacial microsomia. More likely, this condition results from an impaired flow of cells (called neural crest cells), which arise next to the spinal cord, and migrate to the face to form the facial skeleton; if not enough of these cells are able to successfully migrate to their intended location, that side of the face ends up being smaller.
Children with hemifacial microsomia have a smaller face on the side that is affected. Parents usually note that the corner of the mouth is higher on this side and that the chin does not exactly line up in the middle of the face. The lower jaw (mandible) is flatter and shorter, and the ear is either smaller or not formed at all (microtia). The jaw joint (TMJ) may be small or even completely absent. Some children will have a cleft extending off the side of the mouth (called macrostomia), making the mouth opening larger. Some children will have weakness of the muscles on the affected side of the face. The child's right side is more likely to be affected than the left (2:1), and up to 25% of cases are bilateral (Bifacial Microsomia). Some children are very mildly affected, and others are significantly affected. Intelligence and development are normal.
Harlie's right side is definitely the more affected side in terms of her jaw. However, it's her left ear that's missing. I do think something is different about her mouth opening. And it's something that we've discussed with her previous plastic surgeon. He thought that her mouth was more open on the right, which you can see if you know what you're looking for. But it's the muscles on her left side that are more weak. When she smiles, she can't bring up the left side of her mouth like her right.
And she does have a dermoid on her left eyeball. I think she has one on the right, too, but it is covered up by the skin around her eye, since that eye closed properly. You can only see the one on the left because it is exposed. I'm sure that dermoid is bigger than the one on the right, which probably prevented her left eye from closing. And she does have fusion in her cervical spine area.
Anyway, Dr. Padwa went on to explain what they think would be the best option to get Harlie's jaw more functional. They would do a fibula flap reconstruction. They would take bone from her fibula (shave it from the side), along with vascular tissue around it, and then implant it into the right side of her face.
Because they are transplanting the vascular tissue, and reattaching the blood vessels to vessels in her face, the bone will live and stay in place. Her previous two jaw reconstructions were done just using bone (from her skull) with no vascular tissue, and of course, one of the grafts did not survive and had to be removed two months later (on the right side).
Here are the positives:
1. No craniotomy!!! The past two reconstructions were done by using bone from her skull, which meant they had to cut her head from ear to ear. That was awful. For many reasons. And definitely made the recovery much more difficult. It also made for more swelling and bruising of her face. Plus, it very negatively affected her hair style! So, all that would not be an issue this time around. Woohoo!!!!
2. No wires!! If her jaw is wired for recovery, it would only be wired for a few days and she would not come home with them. So, no jaw wired shut! For 9 weeks like the previous two reconstructions! Woohoo!!!
3. No cutting of her jaw!! They would take the bone from her fibula and put it over what's already there. First, Dr. Padwa would put the jaw in the desired position, so her teeth line up, and then they would secure the bone in place with plates and screws. All of this means for less swelling and bruising and no black eyes swollen shut. Woohoo!
4. Her hospital stay would depend on how she does, of course. But, they think it would be about 7 to 10 days.
5. They said they could fix her left eye at the same time. This would mean an additional two surgeons, but they said they can arrange it. I wonder what fixing her eye will do to her appearance. I think that's one thing that kids notice first and I believe they find it unsettling. Let's face it, the eyeball is kinda gross. So, seeing more of it is a little weird. It's both exciting, and scary, to think of what she's going to look like after all this work. I don't think I'll ever get used to her face having to change so quickly due to plastic surgery. It's quite difficult to experience, and explain.
Here are the risks:
1. Ankylosis - the stiffening or immobility of a joint resulting from disease, trauma, surgery or bone fusion. They are 100% confident that the bone will take and will live after surgery. Sometimes it takes too well and overtakes the joint of the jaw. They will measure the opening ability of her mouth every day and see if the number decreases. If it does, he'll have to go back in and adjust things. I should probably know more details than "adjust things", but I don't. The bottom line is that the risk of ankylosis cannot prevent us from doing this surgery. So, we'll just have to cross our fingers that it doesn't happen, and if it does, deal with it then.
2. Facial nerves. Since her face didn't form normally, one cannot assume that everything is where it normally is under the skin. So there is a risk of hurting facial nerves causing paralysis. I believe he said that he will be going under the nerves and that most of the time the damage to the nerves is temporary and in time, they get better.
3. The normal risks that are present anytime one (especially Harlie) undergoes surgery. This has no impact on our decision whatsoever, as we cannot do anything about it. This is not a voluntary surgery and it is in no way cosmetic. It is to gain function and a better quality of life. Therefore, we must proceed forward. And it doesn't hurt that Children's Hospital Boston is listed as the number 1 ranked children's hospital for cardiology and heart surgery. So, our biggest worry gets some comfort.
So, as you can see, the decision is a relatively easy one. Notice that I said risks vs. negatives. There really are no negatives to the surgical plan that we can see at this time. But there are some negatives to choosing Boston for surgery:
1. Distance. It is 550 miles away (about a 10-hour drive). We flew Jet Blue and it took us one hour to get there, and one and a half hours to get back (headwind). It's guessed that we will have to go up there at least five times, bare minimum, relating to this surgery - if all goes well. And that's also assuming that we can get a lot of the tests needed prior to surgery, here locally and have them sent up.
2. Money. It is out of our network for insurance, which changes things drastically. And they are not enrolled in Virginia Medicaid. They are only enrolled in neighboring state's programs. After paying the deductible, our insurance will pay 70% and we pay 30%. But then the hospital has the right to balance bill us, which means whatever insurance did not pay the hospitals/doctors, they could bill us for that amount. Pretty scary when you think that this will total in the hundreds of thousands when it is all said and done. Clearly, we will have to study our insurance plan more closely. And this week I will call the hospital and ask them about any plans or programs they have for people in our position. People come from all over, so we are certainly not the first to be in this position. So, we'll see.
This quick trip was super expensive, but we learned a lot, so we'll be able to be smarter next time. I hope.
After talking in the conference room with all the docs, Dr. Labow showed up at the end of the meeting. He is the surgeon that would take the bone from her leg and place it in her face. Since we had more details to go over, we met with him separately and spent some time going into more detail.
He looked at her leg and said she had enough leg to be able to get what he needed and she had a great pulse, so that means her vascular tissue is good and strong.
He examined the right side of her face closely. After that he asked me about her history with vascular access from her neck. I told him that they have had to gain access through her jugular numerous times before because her femoral veins (in her legs) are shot/scarred (from so many heart caths and surgeries). I told him that I thought it had always been done on her right side (if memory serves) because she has two... (and I snapped my fingers as I was trying desperately to remember the name of what I was trying to say)... superior vena cavas! That's it! And he got this look on his face and said, "Oh does she now?" And then he turned to her and said something like, well aren't you a little creation or challenge or something like that.
Here's a diagram so you can see where the SVC is:
The SVC carries the deoxygenated blood from the upper half of the body back to the heart. It is one big vein, as you can see. Harlie has two small SVCs instead. I'll have to dig up some of her diagrams that the surgeon and cardiologists drew so I can remind myself what her SVCs looks like.
I have no idea how this ties into everything. But, I can tell you that he felt for a pulse on her right side and could not find one. And considering he needs to connect the vascular tissue from her leg to blood vessels in her face, this is a concern. So, he said that they are going to need a CT scan with contrast so they can see what's available and where it's located before they go digging around in there (so he doesn't hurt facial nerves, etc.).
They also want molds of her teeth. Oh, and speaking of her teeth, one of the docs was a dentist and he examined her mouth.
She really was unbelievably cooperative. I can't believe she wasn't all shy acting in front of all those white coats! I really wish I could have taken a picture of all of them sitting there at the table. I am really surprised I wasn't more nervous talking - but I guess when you're thrown in there isn't time. Plus, I do happen to know what I'm talking about when it comes to her. The first thing Dr. Padwa asked when we sat down was, "So, how's she doing?" I tried to stick to what was pertinent to them.
Anyway Dr. Shusterman (the dentist) said that her teeth looked good, considering. No cavities! But I know that's because she's never had anything sticky and sweet (like fruit snacks, etc.). Her molars are coming in outward toward her cheeks because there's just no room to come straight up like they're supposed to.
Dr. Padwa said that their practice would not have operated on her so young (her first jaw reconstruction was at 20 months old) because they just don't believe there is enough bone yet. And she said the sooner you start jaw surgeries, the more you end up having to do over the long term. She will have to continue to have jaw surgeries since her mandible will not be able to keep up with the growth of the rest of her face. She mentioned distraction for potential future procedures. I won't get into that now, but I've been trying to avoid that for years. It hurts to think we might not be able to avoid it in the future. But, we'll just have to cross that bridge later.
Oh, when she asked me, "Her first jaw surgery was at 20 months, right?" And I couldn't remember really. So, I asked her if she had my medical summary in our file. She pulled it out and it had highlighted parts all through it - so I knew they had studied it. Which, I think is really good. Wow. Doctors who study the charts before asking 20 questions? Impressive!
Dr. Meara was the one who asked about her eye. I told him that I just had not been able to research surgeons yet. It hasn't made it to the top of my priority list. Which is funny considering I wanted her eye fixed before ever bringing her home! But then she couldn't even close it at all - which was really freaky. But, we got used to it and eventually she got strong enough to close it and blink it and all that good stuff. So, it's really not been a priority. That's when he said they could take care of it at the same time. Bonus!
Okay, this has been FAR too long. I will write more about the trip and post pictures in the next post.
Thanks for all your support!
~Christy
Harlie loved the plane ride. Once she saw the tray table come down, she couldn't stop playing with it. She sure wore that poor thing out! Luckily no one was in the seat in front of her. She tried to watch the tv and a movie on the iPad, but the headphones were not staying on her head. And when we put the headphones over her hearing aid, it gave us feedback and buzzed. We'll have to figure out something for her for next time.
And yes, there will be a next time.
After we got into Boston, we checked into our hotel. We got an early check-in (we arrived at 9am) so we could put our luggage down and head on over across the street to the New England Aquarium. We could see it from our hotel room. A HUGE thank you to our wonderful neighbors, John and Jackie for providing the hotel (and a wonderful surprise dessert - chocolate covered strawberries, champagne, cookies and milk!). They are so good to us! We are so blessed to have so many wonderful people supporting us!
The aquarium was really nice. But it was "vacation week" for the kids up there, so it was crowded! After about an hour and a half, she was done. I didn't think she had walked that much. But, I think the crowd got to her. And we did wake her up before 4:30am, so I guess that's to be expected. We took her into the gift shop to see if she wanted anything. She picked up a few things and examined them, but put them back. Then she saw this fish...
went and grabbed it, and sat in her stroller and that was that. No more looking - she was done. We were very surprised considering it's a plush toy (not always been her thing). But, she must be coming around. She didn't let go of it the whole time we were gone.
After the aquarium we went and had lunch. Then we headed over to the Children's Hospital. We got to meet a mom who I'm friends with on Facebook. Her daughter has Goldenhar Syndrome, too. She lives up there and she had her daughter and son with her. They were there for something else and came to the craniofacial clinic to meet us. So, that was really nice. Thanks, Tanya!
After only a few minutes in the waiting room they called us back and took us straight into a conference room where there were about four doctors already sitting. Already sitting!!! Harlie's CT scan images were already up on two large flat screen tvs on the wall. After introductions, more docs came into the room, until there were ten total. Harlie was unfazed and found some tongue depressors to play with while we started discussing her future surgical options.
Overall, we were very pleased. Dr. Bonnie Padwa spoke first. She said, "You came here for a second opinion and that's what we're going to give you - you might not like everything you hear."
No prob, we can handle it.
The only thing that she said that was weird is that the term "Goldenhar Syndrome" is an outdated term. They call it Hemifacial Microsomia. But, in Harlie's case you'd have to add a whole bunch of other stuff to that. Personally, I don't really care what it's called. We're well aware of the issues and are addressing them, so whatever you call it, it doesn't really matter. The only thing that Goldenar does vs. hemifacial microsomia, is that it's a hell of a lot easier to say when explaining it to family and friends. Here are some things interesting things about it:
At the current time, no specific gene has been identified that causes this condition, and it is very rare for someone with hemifacial microsomia to pass the trait on to his or her children. The exact cause of this condition remains unknown but there is some experimental evidence published many years ago suggested that if a small blood vessel ruptures near the developing ear in mice, before they are born, after birth they appear to have hemifacial microsomia. More likely, this condition results from an impaired flow of cells (called neural crest cells), which arise next to the spinal cord, and migrate to the face to form the facial skeleton; if not enough of these cells are able to successfully migrate to their intended location, that side of the face ends up being smaller.
Children with hemifacial microsomia have a smaller face on the side that is affected. Parents usually note that the corner of the mouth is higher on this side and that the chin does not exactly line up in the middle of the face. The lower jaw (mandible) is flatter and shorter, and the ear is either smaller or not formed at all (microtia). The jaw joint (TMJ) may be small or even completely absent. Some children will have a cleft extending off the side of the mouth (called macrostomia), making the mouth opening larger. Some children will have weakness of the muscles on the affected side of the face. The child's right side is more likely to be affected than the left (2:1), and up to 25% of cases are bilateral (Bifacial Microsomia). Some children are very mildly affected, and others are significantly affected. Intelligence and development are normal.
If a child has a bump, or benign tumor of the eyeball, called an "epibulbar dermoid", then your child may have Goldenhar variant, which may be considered another type of hemifacial microsomia. Children with Goldenhar frequently have fusions of some of the vertebrae (spine) in the neck; however, this almost never requires any treatment.
And she does have a dermoid on her left eyeball. I think she has one on the right, too, but it is covered up by the skin around her eye, since that eye closed properly. You can only see the one on the left because it is exposed. I'm sure that dermoid is bigger than the one on the right, which probably prevented her left eye from closing. And she does have fusion in her cervical spine area.
Anyway, Dr. Padwa went on to explain what they think would be the best option to get Harlie's jaw more functional. They would do a fibula flap reconstruction. They would take bone from her fibula (shave it from the side), along with vascular tissue around it, and then implant it into the right side of her face.
Because they are transplanting the vascular tissue, and reattaching the blood vessels to vessels in her face, the bone will live and stay in place. Her previous two jaw reconstructions were done just using bone (from her skull) with no vascular tissue, and of course, one of the grafts did not survive and had to be removed two months later (on the right side).
Here are the positives:
1. No craniotomy!!! The past two reconstructions were done by using bone from her skull, which meant they had to cut her head from ear to ear. That was awful. For many reasons. And definitely made the recovery much more difficult. It also made for more swelling and bruising of her face. Plus, it very negatively affected her hair style! So, all that would not be an issue this time around. Woohoo!!!!
2. No wires!! If her jaw is wired for recovery, it would only be wired for a few days and she would not come home with them. So, no jaw wired shut! For 9 weeks like the previous two reconstructions! Woohoo!!!
3. No cutting of her jaw!! They would take the bone from her fibula and put it over what's already there. First, Dr. Padwa would put the jaw in the desired position, so her teeth line up, and then they would secure the bone in place with plates and screws. All of this means for less swelling and bruising and no black eyes swollen shut. Woohoo!
4. Her hospital stay would depend on how she does, of course. But, they think it would be about 7 to 10 days.
5. They said they could fix her left eye at the same time. This would mean an additional two surgeons, but they said they can arrange it. I wonder what fixing her eye will do to her appearance. I think that's one thing that kids notice first and I believe they find it unsettling. Let's face it, the eyeball is kinda gross. So, seeing more of it is a little weird. It's both exciting, and scary, to think of what she's going to look like after all this work. I don't think I'll ever get used to her face having to change so quickly due to plastic surgery. It's quite difficult to experience, and explain.
Here are the risks:
1. Ankylosis - the stiffening or immobility of a joint resulting from disease, trauma, surgery or bone fusion. They are 100% confident that the bone will take and will live after surgery. Sometimes it takes too well and overtakes the joint of the jaw. They will measure the opening ability of her mouth every day and see if the number decreases. If it does, he'll have to go back in and adjust things. I should probably know more details than "adjust things", but I don't. The bottom line is that the risk of ankylosis cannot prevent us from doing this surgery. So, we'll just have to cross our fingers that it doesn't happen, and if it does, deal with it then.
2. Facial nerves. Since her face didn't form normally, one cannot assume that everything is where it normally is under the skin. So there is a risk of hurting facial nerves causing paralysis. I believe he said that he will be going under the nerves and that most of the time the damage to the nerves is temporary and in time, they get better.
3. The normal risks that are present anytime one (especially Harlie) undergoes surgery. This has no impact on our decision whatsoever, as we cannot do anything about it. This is not a voluntary surgery and it is in no way cosmetic. It is to gain function and a better quality of life. Therefore, we must proceed forward. And it doesn't hurt that Children's Hospital Boston is listed as the number 1 ranked children's hospital for cardiology and heart surgery. So, our biggest worry gets some comfort.
So, as you can see, the decision is a relatively easy one. Notice that I said risks vs. negatives. There really are no negatives to the surgical plan that we can see at this time. But there are some negatives to choosing Boston for surgery:
1. Distance. It is 550 miles away (about a 10-hour drive). We flew Jet Blue and it took us one hour to get there, and one and a half hours to get back (headwind). It's guessed that we will have to go up there at least five times, bare minimum, relating to this surgery - if all goes well. And that's also assuming that we can get a lot of the tests needed prior to surgery, here locally and have them sent up.
2. Money. It is out of our network for insurance, which changes things drastically. And they are not enrolled in Virginia Medicaid. They are only enrolled in neighboring state's programs. After paying the deductible, our insurance will pay 70% and we pay 30%. But then the hospital has the right to balance bill us, which means whatever insurance did not pay the hospitals/doctors, they could bill us for that amount. Pretty scary when you think that this will total in the hundreds of thousands when it is all said and done. Clearly, we will have to study our insurance plan more closely. And this week I will call the hospital and ask them about any plans or programs they have for people in our position. People come from all over, so we are certainly not the first to be in this position. So, we'll see.
This quick trip was super expensive, but we learned a lot, so we'll be able to be smarter next time. I hope.
After talking in the conference room with all the docs, Dr. Labow showed up at the end of the meeting. He is the surgeon that would take the bone from her leg and place it in her face. Since we had more details to go over, we met with him separately and spent some time going into more detail.
He looked at her leg and said she had enough leg to be able to get what he needed and she had a great pulse, so that means her vascular tissue is good and strong.
He examined the right side of her face closely. After that he asked me about her history with vascular access from her neck. I told him that they have had to gain access through her jugular numerous times before because her femoral veins (in her legs) are shot/scarred (from so many heart caths and surgeries). I told him that I thought it had always been done on her right side (if memory serves) because she has two... (and I snapped my fingers as I was trying desperately to remember the name of what I was trying to say)... superior vena cavas! That's it! And he got this look on his face and said, "Oh does she now?" And then he turned to her and said something like, well aren't you a little creation or challenge or something like that.
Here's a diagram so you can see where the SVC is:
The SVC carries the deoxygenated blood from the upper half of the body back to the heart. It is one big vein, as you can see. Harlie has two small SVCs instead. I'll have to dig up some of her diagrams that the surgeon and cardiologists drew so I can remind myself what her SVCs looks like.
I have no idea how this ties into everything. But, I can tell you that he felt for a pulse on her right side and could not find one. And considering he needs to connect the vascular tissue from her leg to blood vessels in her face, this is a concern. So, he said that they are going to need a CT scan with contrast so they can see what's available and where it's located before they go digging around in there (so he doesn't hurt facial nerves, etc.).
They also want molds of her teeth. Oh, and speaking of her teeth, one of the docs was a dentist and he examined her mouth.
 |
 |
| Dr. Shusterman examining her teeth. |
She really was unbelievably cooperative. I can't believe she wasn't all shy acting in front of all those white coats! I really wish I could have taken a picture of all of them sitting there at the table. I am really surprised I wasn't more nervous talking - but I guess when you're thrown in there isn't time. Plus, I do happen to know what I'm talking about when it comes to her. The first thing Dr. Padwa asked when we sat down was, "So, how's she doing?" I tried to stick to what was pertinent to them.
Anyway Dr. Shusterman (the dentist) said that her teeth looked good, considering. No cavities! But I know that's because she's never had anything sticky and sweet (like fruit snacks, etc.). Her molars are coming in outward toward her cheeks because there's just no room to come straight up like they're supposed to.
Dr. Padwa said that their practice would not have operated on her so young (her first jaw reconstruction was at 20 months old) because they just don't believe there is enough bone yet. And she said the sooner you start jaw surgeries, the more you end up having to do over the long term. She will have to continue to have jaw surgeries since her mandible will not be able to keep up with the growth of the rest of her face. She mentioned distraction for potential future procedures. I won't get into that now, but I've been trying to avoid that for years. It hurts to think we might not be able to avoid it in the future. But, we'll just have to cross that bridge later.
Oh, when she asked me, "Her first jaw surgery was at 20 months, right?" And I couldn't remember really. So, I asked her if she had my medical summary in our file. She pulled it out and it had highlighted parts all through it - so I knew they had studied it. Which, I think is really good. Wow. Doctors who study the charts before asking 20 questions? Impressive!
Dr. Meara was the one who asked about her eye. I told him that I just had not been able to research surgeons yet. It hasn't made it to the top of my priority list. Which is funny considering I wanted her eye fixed before ever bringing her home! But then she couldn't even close it at all - which was really freaky. But, we got used to it and eventually she got strong enough to close it and blink it and all that good stuff. So, it's really not been a priority. That's when he said they could take care of it at the same time. Bonus!
Okay, this has been FAR too long. I will write more about the trip and post pictures in the next post.
Thanks for all your support!
~Christy
Sunday, February 26, 2012
Info coming soon
I'm still working on my post detailing our Boston trip and the information we got from the craniofacial team there. It's a lot to put into words - understandable and not-too-technical words, of course. So, I'm still working on it. I should have it finished and posted sometime before noon tomorrow.
Thank you!
~Christy
Thank you!
~Christy
Thursday, February 23, 2012
Headed to Boston
When I made this appointment months ago, it felt like forever away. And now it's tomorrow! Wowza!
We leave super early in the morning to fly to Boston. Harlie will probably get a big kick out of that. She's watched the Curious George show when they go to the airport and fly for vacation, like a million times. Tom asked her if she wanted to ride on a plane and she quickly said yeah, and then signed plane. We had to keep telling her, "tomorrow, tomorrow."
Then we'll take her to the Aquarium. We are really looking forward to that. She's going to love it! Then after all that fun, we'll head on over to the Children's Hospital of Boston for our appointment with their craniofacial clinic.
The coordinator called me yesterday and said, "Bad news..." Oh no! Then she went on to tell me that one of the doctors we were going to see had a family emergency and won't be there. So, someone else is going to step in for him. Whew. I was afraid she was going to say they had to cancel our entire appointment or something.
I am very interested to see what their opinion is on what should be done to get Harlie's jaw more functional. We're only looking for the ability to breathe without the trach, chew food and talk. That's it. I really don't think that's asking too much, do you?
I have so much more to share (shocker, I know!) but we have to get up so early tomorrow (like before 4 freaking am!) so I have to make this quick.
Feel free to send us some positive thoughts and prayers for safe travels!
Thank you so much!
~Christy xo
We leave super early in the morning to fly to Boston. Harlie will probably get a big kick out of that. She's watched the Curious George show when they go to the airport and fly for vacation, like a million times. Tom asked her if she wanted to ride on a plane and she quickly said yeah, and then signed plane. We had to keep telling her, "tomorrow, tomorrow."
Then we'll take her to the Aquarium. We are really looking forward to that. She's going to love it! Then after all that fun, we'll head on over to the Children's Hospital of Boston for our appointment with their craniofacial clinic.
The coordinator called me yesterday and said, "Bad news..." Oh no! Then she went on to tell me that one of the doctors we were going to see had a family emergency and won't be there. So, someone else is going to step in for him. Whew. I was afraid she was going to say they had to cancel our entire appointment or something.
I am very interested to see what their opinion is on what should be done to get Harlie's jaw more functional. We're only looking for the ability to breathe without the trach, chew food and talk. That's it. I really don't think that's asking too much, do you?
I have so much more to share (shocker, I know!) but we have to get up so early tomorrow (like before 4 freaking am!) so I have to make this quick.
Feel free to send us some positive thoughts and prayers for safe travels!
Thank you so much!
~Christy xo
Friday, February 17, 2012
I just have to make a quick call...
Another week, and no updates! Here's what's happened:
Harlie's BAHA (bone-anchored hearing aid):
I don't know if you remember, but we borrowed a BAHA from Harlie's audiologist to test it out and see if it helped. And it did. It worked so well that we kept it until she asked for it back. So, she ordered one for Harlie. It took a while for all the paperwork and authorizations to go though, of course. And we got it on Monday.
The aid sits on the bony area behind her left ear (her side with no hearing). So, she has an aid on each side. The soft band is so much nicer than the one that was on the loaner aid. The loaner one was velcro, which made it difficult to get it tight enough, without it being too tight. So, while she would ask for the BAHA at school (or say "yes" when asked if she wanted it) she could only wear it for a couple of hours at a time.
This one is adjustable by sliding it, so it's a lot easier to get it to a more comfortable fit. And I can tell because on Tuesday morning I put it on her before we left for school. I was thinking she might tolerate it for a few hours, at most. So, imagine my complete surprise when she came home and was STILL wearing it! Terri said she never messed with it or wanted to take it off. Wow! And I got an e-mail from her hearing impaired teacher that said she did awesome with her BAHA and that her eye contact was amazing while wearing it! Woohoo!!!
Of course I can't help but think we should have done this years ago. While I know that hindsight is 20/20, it is still hard to stop myself from thinking if only. Maybe she would be further along academically. She would definitely have been exposed to way more language. I know I shouldn't beat myself up. But, I would like it noted that I never really had any one lobby for a BAHA - even when she was young. Why didn't some doctor, nurse or therapist try to talk me into it? Tell me the benefits, the positives??? I don't know, maybe it was brought up. Maybe I didn't hear it. Maybe I had my hands full with life or death decisions. Grrrr.
Gotta shake it off and move on. She has one now and she clearly loves being able to hear more, or better or whatever she's getting out of it. It doesn't do much for her hair fashion, but I suppose hearing is more important. ;-)
Holter Monitor Results:
You might remember that last week Harlie had a Holter Monitor for one night. Well, the results are in and her lowest sustained heart rate was 38, highest was 79 and mean was 47. So, it is now confirmed that she does, in fact, need the pacemaker. :-( So, we are now looking at available dates to get that done.
While we don't need to rush to the ER because of it, I don't really want to wait, either. We have a couple options within the next two weeks. But I need to talk it over with Tom and we haven't had a chance yet. It's hard to focus when the kids are screaming and running around. So, we'll have to wait till after they go to bed.
What I did today:
So, one thing that's been on my to-do list for weeks (okay two months) is to make a phone call to Medicaid to see what our financial options are (if any) as far as going out of state for medical care. Plus, I was told that they reimburse for travel expenses (something I can't believe I've never investigated after all the freaking miles we've racked). I got a name and number of who to call several weeks ago. I've called numerous times, but there's always been a recording that said something about the mail box being full and to try back later. But, we're now exactly one week from traveling - so I've run out of time. So, I need to make more of an effort. Here's how it went (and my answer to why I've never done this before):
1. I called the number again, same message.
2. I searched their website and could not find what I needed, so I called the main number to the Dept. of Medical Assistance, went through the whole automated system and finally got to a place where I could press 0 for an operator. Finally I get a real person and I told her what I was looking for and she said she needed to transfer me to another department.
3. I got disconnected.
4. I called back. She gave me another number to call.
5. I called the number she gave me, just to hear a message that said, "Due to circumstances out of our control your call could not be completed at this time. Please try back later."
6. I called the main number again. Told her about the message. She said, with annoyance and attitude, "Well, ma'am, you just need to keep trying." One thing that always gets me is how parents get treated when we are already doing something we never wanted to do. I don't have to do this crap for my healthy kids. Did she think this was fun for me? Hell, at least she's getting paid! Not me. Nope I do this kind of crap for free - all the freaking time. For five freaking years. No bonus. No vacation time. So to try to make her realize that being nice is better I embellished a bit and said, "Look, I have a sick daughter and I'm just trying to get her the medical help she needs. I don't work there. I don't know this system. Can you please just help me?" Well, let me tell you, that changed her tune. She got real nice after that. She said that the number that I first tried (for weeks) is broken so she'll e-mail her and have her call me. So I asked for her e-mail address so I could do that myself. Which she gave me. And then told me to have a nice day.
7. I kept trying the second number she gave me. Gave up and called my Medicaid case worker (who is awesome and very good about returning my calls). I left a message.
8. I continued to try to get through to that number and I finally got through, got an automated system, went through that and finally got a real person. Yay! Gave her my info and she said, "I'm sorry, ma'am, I can see that you are her parent, but you are not listed as an authorized representative on her file. So, you need to call the Department of Social Services and ask for worker ID #_____, tell him or her that they need to list you as an authorized representative to speak on your daughter's behalf and then call me back and then I can talk to you."
9. After many deep breaths, I call the Department of Social Services and unbelievably, our social worker was there and available. She said, "WHAT?!? How old is your daughter?" I said, "Five." She said, "This is crazy! You aren't listed as an authorized representative because your child is under 18 and you are her PARENT!" She was slightly annoyed. She then apologized for it (even though it wasn't her fault) and then put me in there as a rep anyway. She was very nice and helpful. All was good again.
10. I called that number again, and started the process over. Luckily, I got a nice woman this time and she answered my questions. One - no, they cannot help us if a hospital in another state does not want to enroll in Virginia Medicaid. We're on our own with private insurance and having to pay out of network costs (I don't even want to think about that right now). Two - for travel reimbursement info, I need to call another number.
11. I called that number. Got a nice guy. I gave him my info and he plugged it into the computer. When I gave him my address, he said, "Oh, I used to live there." So, I said, "Where are you now?" (because I thought it was a local company) and he tells me some city in Virginia (can't remember now). Then he asks me where we're going for treatment. I give him the address in Boston. And I hear him plug it into his computer. Then he exclaims, "Wow! That's over 500 miles away!" Um, duh? Boston is in Massachusetts and you live in Virginia. Certainly you knew it was gonna be far, right? Anyway, so he says, "Oh, you have to call a different number for that, and all I have to say is good luck." Are you kidding me? I cannot help but think no amount of money is worth all this frustration and time. Oh, my precious time...
12. I called that number and got a recording that they were not available and to leave a message. So I left a message. I'm pretty sure I'm never going to get a call back.
13. I hear back from my Medicaid case worker. See? I told you she was good about calling me back. And she's always so helpful! So, she tells me what I need to do if we decide to have surgery there.
14. She calls me again to tell me that she investigated the travel reimbursement thing more. And that I need to get a letter of medical necessity from her local doctor and have him fax it to Dr. Adiele with DMAS so he can approve it and then forward to transportation. Okay. Got it.
By then, the kids were coming home from school and Cooper was waking up from his nap. There went my quiet time. And my ability to make any more phone calls. Okay, so my ability to make any more phone calls was probably more affected by the previous 14+.
So, on Monday, I'm going to have to make more phone calls. Awesome.
It occurs to me as I write this that I still have no idea what kind of reimbursement we could get - if any. Full price of plane tickets? I doubt it. But I'm in too far now to quit.
Thank you for all your support on my book deal. I can't tell you how much it means to me. Being able to talk to you through my blog has been a life-saver. Thank you for always being here for me!
Love,
Christy xo
Harlie's BAHA (bone-anchored hearing aid):
I don't know if you remember, but we borrowed a BAHA from Harlie's audiologist to test it out and see if it helped. And it did. It worked so well that we kept it until she asked for it back. So, she ordered one for Harlie. It took a while for all the paperwork and authorizations to go though, of course. And we got it on Monday.
The aid sits on the bony area behind her left ear (her side with no hearing). So, she has an aid on each side. The soft band is so much nicer than the one that was on the loaner aid. The loaner one was velcro, which made it difficult to get it tight enough, without it being too tight. So, while she would ask for the BAHA at school (or say "yes" when asked if she wanted it) she could only wear it for a couple of hours at a time.
This one is adjustable by sliding it, so it's a lot easier to get it to a more comfortable fit. And I can tell because on Tuesday morning I put it on her before we left for school. I was thinking she might tolerate it for a few hours, at most. So, imagine my complete surprise when she came home and was STILL wearing it! Terri said she never messed with it or wanted to take it off. Wow! And I got an e-mail from her hearing impaired teacher that said she did awesome with her BAHA and that her eye contact was amazing while wearing it! Woohoo!!!
Of course I can't help but think we should have done this years ago. While I know that hindsight is 20/20, it is still hard to stop myself from thinking if only. Maybe she would be further along academically. She would definitely have been exposed to way more language. I know I shouldn't beat myself up. But, I would like it noted that I never really had any one lobby for a BAHA - even when she was young. Why didn't some doctor, nurse or therapist try to talk me into it? Tell me the benefits, the positives??? I don't know, maybe it was brought up. Maybe I didn't hear it. Maybe I had my hands full with life or death decisions. Grrrr.
Gotta shake it off and move on. She has one now and she clearly loves being able to hear more, or better or whatever she's getting out of it. It doesn't do much for her hair fashion, but I suppose hearing is more important. ;-)
Holter Monitor Results:
You might remember that last week Harlie had a Holter Monitor for one night. Well, the results are in and her lowest sustained heart rate was 38, highest was 79 and mean was 47. So, it is now confirmed that she does, in fact, need the pacemaker. :-( So, we are now looking at available dates to get that done.
While we don't need to rush to the ER because of it, I don't really want to wait, either. We have a couple options within the next two weeks. But I need to talk it over with Tom and we haven't had a chance yet. It's hard to focus when the kids are screaming and running around. So, we'll have to wait till after they go to bed.
What I did today:
So, one thing that's been on my to-do list for weeks (okay two months) is to make a phone call to Medicaid to see what our financial options are (if any) as far as going out of state for medical care. Plus, I was told that they reimburse for travel expenses (something I can't believe I've never investigated after all the freaking miles we've racked). I got a name and number of who to call several weeks ago. I've called numerous times, but there's always been a recording that said something about the mail box being full and to try back later. But, we're now exactly one week from traveling - so I've run out of time. So, I need to make more of an effort. Here's how it went (and my answer to why I've never done this before):
1. I called the number again, same message.
2. I searched their website and could not find what I needed, so I called the main number to the Dept. of Medical Assistance, went through the whole automated system and finally got to a place where I could press 0 for an operator. Finally I get a real person and I told her what I was looking for and she said she needed to transfer me to another department.
3. I got disconnected.
4. I called back. She gave me another number to call.
5. I called the number she gave me, just to hear a message that said, "Due to circumstances out of our control your call could not be completed at this time. Please try back later."
6. I called the main number again. Told her about the message. She said, with annoyance and attitude, "Well, ma'am, you just need to keep trying." One thing that always gets me is how parents get treated when we are already doing something we never wanted to do. I don't have to do this crap for my healthy kids. Did she think this was fun for me? Hell, at least she's getting paid! Not me. Nope I do this kind of crap for free - all the freaking time. For five freaking years. No bonus. No vacation time. So to try to make her realize that being nice is better I embellished a bit and said, "Look, I have a sick daughter and I'm just trying to get her the medical help she needs. I don't work there. I don't know this system. Can you please just help me?" Well, let me tell you, that changed her tune. She got real nice after that. She said that the number that I first tried (for weeks) is broken so she'll e-mail her and have her call me. So I asked for her e-mail address so I could do that myself. Which she gave me. And then told me to have a nice day.
7. I kept trying the second number she gave me. Gave up and called my Medicaid case worker (who is awesome and very good about returning my calls). I left a message.
8. I continued to try to get through to that number and I finally got through, got an automated system, went through that and finally got a real person. Yay! Gave her my info and she said, "I'm sorry, ma'am, I can see that you are her parent, but you are not listed as an authorized representative on her file. So, you need to call the Department of Social Services and ask for worker ID #_____, tell him or her that they need to list you as an authorized representative to speak on your daughter's behalf and then call me back and then I can talk to you."
9. After many deep breaths, I call the Department of Social Services and unbelievably, our social worker was there and available. She said, "WHAT?!? How old is your daughter?" I said, "Five." She said, "This is crazy! You aren't listed as an authorized representative because your child is under 18 and you are her PARENT!" She was slightly annoyed. She then apologized for it (even though it wasn't her fault) and then put me in there as a rep anyway. She was very nice and helpful. All was good again.
10. I called that number again, and started the process over. Luckily, I got a nice woman this time and she answered my questions. One - no, they cannot help us if a hospital in another state does not want to enroll in Virginia Medicaid. We're on our own with private insurance and having to pay out of network costs (I don't even want to think about that right now). Two - for travel reimbursement info, I need to call another number.
11. I called that number. Got a nice guy. I gave him my info and he plugged it into the computer. When I gave him my address, he said, "Oh, I used to live there." So, I said, "Where are you now?" (because I thought it was a local company) and he tells me some city in Virginia (can't remember now). Then he asks me where we're going for treatment. I give him the address in Boston. And I hear him plug it into his computer. Then he exclaims, "Wow! That's over 500 miles away!" Um, duh? Boston is in Massachusetts and you live in Virginia. Certainly you knew it was gonna be far, right? Anyway, so he says, "Oh, you have to call a different number for that, and all I have to say is good luck." Are you kidding me? I cannot help but think no amount of money is worth all this frustration and time. Oh, my precious time...
12. I called that number and got a recording that they were not available and to leave a message. So I left a message. I'm pretty sure I'm never going to get a call back.
13. I hear back from my Medicaid case worker. See? I told you she was good about calling me back. And she's always so helpful! So, she tells me what I need to do if we decide to have surgery there.
14. She calls me again to tell me that she investigated the travel reimbursement thing more. And that I need to get a letter of medical necessity from her local doctor and have him fax it to Dr. Adiele with DMAS so he can approve it and then forward to transportation. Okay. Got it.
By then, the kids were coming home from school and Cooper was waking up from his nap. There went my quiet time. And my ability to make any more phone calls. Okay, so my ability to make any more phone calls was probably more affected by the previous 14+.
So, on Monday, I'm going to have to make more phone calls. Awesome.
It occurs to me as I write this that I still have no idea what kind of reimbursement we could get - if any. Full price of plane tickets? I doubt it. But I'm in too far now to quit.
On another note...
Thank you for all your support on my book deal. I can't tell you how much it means to me. Being able to talk to you through my blog has been a life-saver. Thank you for always being here for me!
Love,
Christy xo
Sunday, February 12, 2012
Exciting News!!!
Yes! I have something super exciting to tell you about! I really can't believe it myself.
For all of you who have said I should write a book - this goes out to you!
I'M WRITING A BOOK!!!
A REAL book! That will be ... gulp... PUBLISHED! And then sold! To people! (I hope.)
How freaking crazy is that?!?!?!
I was approached by an author (Andrew Spencer) who got my blog link from a friend (thanks, Niki!). He said that when he read it, he thought, "this should be a book." Crazy!
So, we met a couple of weeks ago to talk about it. A few days later he met with his publisher, then sent me this message:
Looks like we might should have another coffee date, given that you now OFFICIALLY have a book deal :-)
We met again last week to talk more details. We put an outline together, and once that is final, he will take it to the publisher. And if he's good with it, then we sign a contract. Crazy!
Just crazy!
The book will have more details about things I didn't really feel comfortable blogging about. The blog is a little intimate (at least it feels that way to me), which is why I left out some more private moments/thoughts/feelings, etc. It will also include some details from my pregnancy with her (which I've never written about). But, since it's a book - I will be more honest about that stuff and will include it. I mean, if you're going to put yourself out there, might as well put yourself out there!
So, during our meeting, Andrew tells me that the publisher will create a "sell sheet" to get the word out that the book is being written and is coming soon. And that's when it started to sink in. This might actually happen!
I'm keeping myself in check, though. I mean, I know that things don't always work out they way you want them to. Been there, done/doing that. So, I know that something could happen that could prevent this whole thing from materializing.
But, in the meantime, it's pretty exciting to think about.
So, that's my big news. And all the details I have so far. Now to find more time...
Thank you for all your support!
~Christy
For all of you who have said I should write a book - this goes out to you!
I'M WRITING A BOOK!!!
A REAL book! That will be ... gulp... PUBLISHED! And then sold! To people! (I hope.)
How freaking crazy is that?!?!?!
I was approached by an author (Andrew Spencer) who got my blog link from a friend (thanks, Niki!). He said that when he read it, he thought, "this should be a book." Crazy!
So, we met a couple of weeks ago to talk about it. A few days later he met with his publisher, then sent me this message:
Looks like we might should have another coffee date, given that you now OFFICIALLY have a book deal :-)
We met again last week to talk more details. We put an outline together, and once that is final, he will take it to the publisher. And if he's good with it, then we sign a contract. Crazy!
Just crazy!
The book will have more details about things I didn't really feel comfortable blogging about. The blog is a little intimate (at least it feels that way to me), which is why I left out some more private moments/thoughts/feelings, etc. It will also include some details from my pregnancy with her (which I've never written about). But, since it's a book - I will be more honest about that stuff and will include it. I mean, if you're going to put yourself out there, might as well put yourself out there!
So, during our meeting, Andrew tells me that the publisher will create a "sell sheet" to get the word out that the book is being written and is coming soon. And that's when it started to sink in. This might actually happen!
I'm keeping myself in check, though. I mean, I know that things don't always work out they way you want them to. Been there, done/doing that. So, I know that something could happen that could prevent this whole thing from materializing.
But, in the meantime, it's pretty exciting to think about.
So, that's my big news. And all the details I have so far. Now to find more time...
Thank you for all your support!
~Christy
Friday, February 10, 2012
Why Doesn't Harlie Like Stickers?
Because of this...
The Holter monitor came off this morning. Tom was the bad guy and yanked off the tape. I was the mean mommy who sat there and took this picture.
Tom said that one day we'll have to video it, so you can see, and maybe better experience, some of the fun things we get to do to her. I don't think that tape even sticks that bad to her skin, but it doesn't matter. She clearly has memories of similar experiences with worse tape and more sensitive skin (like post heart surgery, or any kind of surgery, really). It's really quite awful.
But, it's over for now. And she went to school seemingly happy, albeit late.
Today is "bear day" at school. (Insert scared face here.) But she got to take her own bear, so that's better. (Insert relieved face here.) She chose a white bear that lights up on the inside. It was a gift to her many years ago (she was six months old) from a very nice person who visited us while she was in the hospital for her first Easter. And she actually likes it.
Okay, more later!
Thanks!
~Christy
The Holter monitor came off this morning. Tom was the bad guy and yanked off the tape. I was the mean mommy who sat there and took this picture.
Tom said that one day we'll have to video it, so you can see, and maybe better experience, some of the fun things we get to do to her. I don't think that tape even sticks that bad to her skin, but it doesn't matter. She clearly has memories of similar experiences with worse tape and more sensitive skin (like post heart surgery, or any kind of surgery, really). It's really quite awful.
But, it's over for now. And she went to school seemingly happy, albeit late.
Today is "bear day" at school. (Insert scared face here.) But she got to take her own bear, so that's better. (Insert relieved face here.) She chose a white bear that lights up on the inside. It was a gift to her many years ago (she was six months old) from a very nice person who visited us while she was in the hospital for her first Easter. And she actually likes it.
Okay, more later!
Thanks!
~Christy
Thursday, February 9, 2012
Cardiology Appointment
Harlie had a bit of a rough day today. I picked her up from school around 12:45 and went to her speech therapy appointment at 1pm. After that, we went to her cardiology appointment with one of my favorite doctors - Dr. Gullquist. Here's the skinny on my concerns:
Higher oxygen saturation levels: Her sats are higher now than ever before, which is wonderful! She's lived in some pretty low numbers (60s and 70s) and is now living in the high 80s and low 90s. In the many conversations I've had with her doctors, this usually meant that if her numbers were higher, that meant that they could close her fenestration.
I will simplify the explanation to this: during her last heart surgery (called the Fontan) they created a hole (fenestration) in the connection that carries the blood from her body to her lungs for the blood to escape during higher pressures. If her sats were low, that meant that her pressures were high enough that the blood had to escape through the hole. As the pressures decrease, the blood passes the hole and does not need to escape, causing better oxygen saturation levels. I think the normal thought was that then you close the hole and all is well.
However, it is not that easy. Here is what I understand... leaving the fenestration open (as it is now) carries a low risk of the patient having a stroke. Performing the actual procedure of closing the fenestration and for the next six months after - carries an even higher risk of the patient having a stroke. And, because of that, they have to really thin the blood even more than it is now.
Plus, they think that in a failing Fontan (which is what will eventually happen, requiring a heart transplant) that if the fenestration is closed the patient gets sicker, faster. And if left open, the patient essentially buys a little more time to get a heart transplant. I'm not saying that if closed they can't get a transplant, but I think the window of opportunity is shortened.
The reasons to close the fenestration are: 1) if the patient wants to exercise more. So, if she wanted to run, for example, her sats would go down pretty quickly. The heart and lungs just can't keep up with the oxygen demands, requiring rest times. And 2) I can't really remember. Maybe it was to raise the sats a little? But, I told him that I saw 94 on her monitor the other day and he said that's about as good as they are going to get - even if we close her fenestration.
So, I really don't see any reason to close it. I'd rather go with the smaller chances of a stroke and a bigger window of opportunity to get her a new heart one day. I suppose if she ever does want to run or exercise we can revisit the situation then. Things are always changing and developing in the medical field, so who knows what they will learn in the next 5 to 10 years that might change our decision. And things are always changing with Harlie, too. So, we'll revisit this later if need be.
Low heart rate at night: Over the years her heart rate has been dipping lower and lower at night. I haven't really been that concerned because I know she has second degree heart block, so her heart doesn't beat at a normal rhythm - it will have longer pauses between beats on occasion, which makes the monitor indicate a lower beats per minute number.
This was expected to happen eventually, which is why her surgeon placed pacemaker leads in/around her heart during her first heart surgery at just four days old. So, she's sporting a Holter monitor for the night to see what's going on. I am pretty sure that she won't dip down to her lower heart rates tonight, just so she can make me look like an idiot.
However, if it is true that she is dipping down to lower heart rates than desirable, we will need to go on ahead and get her pacemaker hooked up and working. Everything is ready to go, they just need to install the battery device in her abdomen area and hook it up to the wires. I'll discuss the ins and outs of that when the time comes.
Bony protrusion to the right of her sternum: I recently noticed that she has a bony growth just to the right of her sternum. Since they cut the sternum for open heart surgery and then use wires to put it back together, the bone can just heal over the wires like that. I knew that this could happen. But, I really thought we were in the clear. It's been a year and a half since her last surgery after all. So, we do nothing for a long time until we think it needs to be fixed. Then they can shave the bone down.
When I noticed it, I automatically assumed that's what it was and so I wasn't worried. But, then today someone made me wonder if it was something more. Or different. Then I thought, "what if?" And then I thought, "what if I miss something big one day because my perspective of what's important is so skewed now?" Eh, that's just a bony sternum, not a mass of something deadly. Eh, that's just a screw coming out of her jaw, no biggie. Oh, her sats are 70? Whatever, they've been worse, I'll just give her some oxygen. Eh, her heart rate is 35? Whatev, I'll just lower the alarm setting so it doesn't wake me in the night.
I will say that I decided I will have to get CPR certified soon. Couldn't hurt.
She had an echo done (ultrasound of the heart) to check things out. She has a mild leak in there. It's still there, and still mild today. So, that's good. I don't ask anything about it, really. Because I'll deal with that problem should it ever arise. That's what yearly check ups are for, right? So, you know how they do an ultrasound with the wand (or whatever they call it) and the gel? Well, it doesn't hurt. But, try telling Harlie that! WHEW! She HATES getting an echo done. I tried to reason with her, but she would have none of that. I finally had to just hold her hands. I did manage to get her to hold my phone so she could play Angry Birds or something. Holding the phone did get her to calm down a little for a bit, but she wouldn't play it.
So, then Beverly (who did the echo) had to put the Holter monitor on her. Oh boy. That was torture. It's just a bunch of leads stuck to her chest. With wires attached to the leads. And then taped to her skin. What's the big deal? The wires are plugged into a reader and she wears the reader around her neck/shoulder. Oh, did she cry! After the monitor was in place, I tried to put her dress back on. She didn't want any part of that. If the dress went over the monitor, then that meant she had to leave with it on. And she was not happy about that! It was a long struggle to get the dress on her. I finally bribed her with the promise a Curious George DVD in the car and movies at home.
Once the dress was on, and the monitor went over her shoulder, she has not let it go.
I think she's afraid someone will tug on the wires or something, so she's keeping it close to her. Although I did manage to get a smile out of her...
When it was time to go to bed, she would NOT - I repeat NOT - let us take off her dress. So, she's sleeping in it.
The monitor can come off in the morning. I am so glad she doesn't have to wear it to school. But, I am not looking forward to removing it! I will have to see if I can get Terri to do the dirty work for me. I'm pretty sure she's going to be late to school.
Oh, and I just had to go upstairs and lower the alarm setting on her pulse ox. We set it to alarm at 40 or below. And it alarmed enough times that I had to change it to alarm at 35 or lower. So, maybe it will be indicative of what's been going on after all. I have to run the Holter monitor back to MCV tomorrow and he said he'll let me know the results early next week.
So, that's it for tonight. I have way more to blog about and I'm really hoping I can do that this weekend. Brandy is coming over this weekend to help out, so I think I'm going to skip over to the library to get some peace and quiet with my computer during the DAY so I don't have to miss out on sleep.
Thanks!
~Christy
Higher oxygen saturation levels: Her sats are higher now than ever before, which is wonderful! She's lived in some pretty low numbers (60s and 70s) and is now living in the high 80s and low 90s. In the many conversations I've had with her doctors, this usually meant that if her numbers were higher, that meant that they could close her fenestration.
I will simplify the explanation to this: during her last heart surgery (called the Fontan) they created a hole (fenestration) in the connection that carries the blood from her body to her lungs for the blood to escape during higher pressures. If her sats were low, that meant that her pressures were high enough that the blood had to escape through the hole. As the pressures decrease, the blood passes the hole and does not need to escape, causing better oxygen saturation levels. I think the normal thought was that then you close the hole and all is well.
However, it is not that easy. Here is what I understand... leaving the fenestration open (as it is now) carries a low risk of the patient having a stroke. Performing the actual procedure of closing the fenestration and for the next six months after - carries an even higher risk of the patient having a stroke. And, because of that, they have to really thin the blood even more than it is now.
Plus, they think that in a failing Fontan (which is what will eventually happen, requiring a heart transplant) that if the fenestration is closed the patient gets sicker, faster. And if left open, the patient essentially buys a little more time to get a heart transplant. I'm not saying that if closed they can't get a transplant, but I think the window of opportunity is shortened.
The reasons to close the fenestration are: 1) if the patient wants to exercise more. So, if she wanted to run, for example, her sats would go down pretty quickly. The heart and lungs just can't keep up with the oxygen demands, requiring rest times. And 2) I can't really remember. Maybe it was to raise the sats a little? But, I told him that I saw 94 on her monitor the other day and he said that's about as good as they are going to get - even if we close her fenestration.
So, I really don't see any reason to close it. I'd rather go with the smaller chances of a stroke and a bigger window of opportunity to get her a new heart one day. I suppose if she ever does want to run or exercise we can revisit the situation then. Things are always changing and developing in the medical field, so who knows what they will learn in the next 5 to 10 years that might change our decision. And things are always changing with Harlie, too. So, we'll revisit this later if need be.
Low heart rate at night: Over the years her heart rate has been dipping lower and lower at night. I haven't really been that concerned because I know she has second degree heart block, so her heart doesn't beat at a normal rhythm - it will have longer pauses between beats on occasion, which makes the monitor indicate a lower beats per minute number.
This was expected to happen eventually, which is why her surgeon placed pacemaker leads in/around her heart during her first heart surgery at just four days old. So, she's sporting a Holter monitor for the night to see what's going on. I am pretty sure that she won't dip down to her lower heart rates tonight, just so she can make me look like an idiot.
However, if it is true that she is dipping down to lower heart rates than desirable, we will need to go on ahead and get her pacemaker hooked up and working. Everything is ready to go, they just need to install the battery device in her abdomen area and hook it up to the wires. I'll discuss the ins and outs of that when the time comes.
Bony protrusion to the right of her sternum: I recently noticed that she has a bony growth just to the right of her sternum. Since they cut the sternum for open heart surgery and then use wires to put it back together, the bone can just heal over the wires like that. I knew that this could happen. But, I really thought we were in the clear. It's been a year and a half since her last surgery after all. So, we do nothing for a long time until we think it needs to be fixed. Then they can shave the bone down.
When I noticed it, I automatically assumed that's what it was and so I wasn't worried. But, then today someone made me wonder if it was something more. Or different. Then I thought, "what if?" And then I thought, "what if I miss something big one day because my perspective of what's important is so skewed now?" Eh, that's just a bony sternum, not a mass of something deadly. Eh, that's just a screw coming out of her jaw, no biggie. Oh, her sats are 70? Whatever, they've been worse, I'll just give her some oxygen. Eh, her heart rate is 35? Whatev, I'll just lower the alarm setting so it doesn't wake me in the night.
I will say that I decided I will have to get CPR certified soon. Couldn't hurt.
She had an echo done (ultrasound of the heart) to check things out. She has a mild leak in there. It's still there, and still mild today. So, that's good. I don't ask anything about it, really. Because I'll deal with that problem should it ever arise. That's what yearly check ups are for, right? So, you know how they do an ultrasound with the wand (or whatever they call it) and the gel? Well, it doesn't hurt. But, try telling Harlie that! WHEW! She HATES getting an echo done. I tried to reason with her, but she would have none of that. I finally had to just hold her hands. I did manage to get her to hold my phone so she could play Angry Birds or something. Holding the phone did get her to calm down a little for a bit, but she wouldn't play it.
So, then Beverly (who did the echo) had to put the Holter monitor on her. Oh boy. That was torture. It's just a bunch of leads stuck to her chest. With wires attached to the leads. And then taped to her skin. What's the big deal? The wires are plugged into a reader and she wears the reader around her neck/shoulder. Oh, did she cry! After the monitor was in place, I tried to put her dress back on. She didn't want any part of that. If the dress went over the monitor, then that meant she had to leave with it on. And she was not happy about that! It was a long struggle to get the dress on her. I finally bribed her with the promise a Curious George DVD in the car and movies at home.
Once the dress was on, and the monitor went over her shoulder, she has not let it go.
I think she's afraid someone will tug on the wires or something, so she's keeping it close to her. Although I did manage to get a smile out of her...
When it was time to go to bed, she would NOT - I repeat NOT - let us take off her dress. So, she's sleeping in it.
The monitor can come off in the morning. I am so glad she doesn't have to wear it to school. But, I am not looking forward to removing it! I will have to see if I can get Terri to do the dirty work for me. I'm pretty sure she's going to be late to school.
Oh, and I just had to go upstairs and lower the alarm setting on her pulse ox. We set it to alarm at 40 or below. And it alarmed enough times that I had to change it to alarm at 35 or lower. So, maybe it will be indicative of what's been going on after all. I have to run the Holter monitor back to MCV tomorrow and he said he'll let me know the results early next week.
So, that's it for tonight. I have way more to blog about and I'm really hoping I can do that this weekend. Brandy is coming over this weekend to help out, so I think I'm going to skip over to the library to get some peace and quiet with my computer during the DAY so I don't have to miss out on sleep.
Thanks!
~Christy
Wednesday, February 8, 2012
Cardiology tomorrow...
Tomorrow is Therapy Thursday. But, no longer hyped. Thank God.
She'll still have her speech therapy with Delisa who works with her communication device. But, that will be it for therapy. Because after that we are heading to MCV to see her cardiologist. Here are the issues I want to talk over with him:
Her sats are GREAT! The other day I saw 94 on her pulse ox machine and that is the highest number I've ever seen! Her new norm seems to be in the high 80s/low 90s. I'm wondering if this means that we can talk about closing her fenestration. I'll explain that after I talk to him so that it makes more sense.
Her heart rate is really dipping at night. She sleeps with a pulse ox probe on her toe, which is hooked up to a monitor (reads her oxygen saturations and heart rate). For years the low alarm setting for her heart rate was 50. Then after time, we had to reduce it to 45. Then 40. And now 35. She's had a Holter monitor reading done several times, and they have always said she looks good, so I haven't worried about it.
But, 35 seems pretty low to me. So, I'm going to ask him about that.
Her sternum has always looked great. Especially considering it's been opened four times in three years. But recently I noticed that it is starting to bulge outwards. I knew this could happen, I just didn't know it could happen 1.5 years after her last surgery. So, I just want to ask him about that. I really hope it doesn't get much worse. Oh, just saying that makes me nervous. I've had that hope before...
Plus, it's been a year since her last check-up. So, it's time to see him anyway. I'll let you know how it goes.
Thanks!
~Christy
She'll still have her speech therapy with Delisa who works with her communication device. But, that will be it for therapy. Because after that we are heading to MCV to see her cardiologist. Here are the issues I want to talk over with him:
Her sats are GREAT! The other day I saw 94 on her pulse ox machine and that is the highest number I've ever seen! Her new norm seems to be in the high 80s/low 90s. I'm wondering if this means that we can talk about closing her fenestration. I'll explain that after I talk to him so that it makes more sense.
Her heart rate is really dipping at night. She sleeps with a pulse ox probe on her toe, which is hooked up to a monitor (reads her oxygen saturations and heart rate). For years the low alarm setting for her heart rate was 50. Then after time, we had to reduce it to 45. Then 40. And now 35. She's had a Holter monitor reading done several times, and they have always said she looks good, so I haven't worried about it.
But, 35 seems pretty low to me. So, I'm going to ask him about that.
Her sternum has always looked great. Especially considering it's been opened four times in three years. But recently I noticed that it is starting to bulge outwards. I knew this could happen, I just didn't know it could happen 1.5 years after her last surgery. So, I just want to ask him about that. I really hope it doesn't get much worse. Oh, just saying that makes me nervous. I've had that hope before...
Plus, it's been a year since her last check-up. So, it's time to see him anyway. I'll let you know how it goes.
Thanks!
~Christy
Friday, February 3, 2012
So, guess where I am...
At school, of course! And I couldn't be happier.
I wish.
Harlie's happy and healthy and glad to be here. And I am thankful. I really don't want to complain. I don't! But no mom should go with her kindergartener to school every day. Period.
And I have a job. A whole list of duties and responsibilities I need to work on every day. And when those things aren't done, it makes our evening more stressful. It just creates a negative chain reaction, that we simply don't need.
The mornings would be so much better if Harlie could feed herself her own breakfast. And then that makes me think that maybe I should bring self-feeding back to the top of our priority list. But, I just can't do that right now. One, there's no more room at the top of the list. Two, there's a part of me that says that would negatively impact her progress in having refusal-free meals (which we are still immensely enjoying). I just don't think I could push her right now. And the only thing that's telling me that is my gut. And I don't know how much I can trust that. Because the reality is that working on self-feeding will be very time consuming. And we simply don't have any more time. None!
So, yesterday was our first new and hyped-up Therapy Thursday. And it sucked. I knew after the first therapy session that it wasn't going to work.
First of all, I'm freaking tired. I feel like a wimp saying that. But, I haven't been able to stop for a second all week. Plus, I did my Adrenaline class on Tuesday (my last day of "freedom") and it kicked my ass. Seriously. Since the new year I really feel like he's amped up the difficulty. Plus, I had done virtually nothing for almost two weeks (since the sickness period in our home). So, it was a shock to say the least. My body is still reminding me that it's pissed. Oh, and that I'm 40. Shut it, body! I didn't ask you!
So, we were supposed to leave around 12:30 to go to our first therapy session - ST with Delisa (to work on the communication device). But, the class had C.O.W.s (computers on wheels - when they bring laptops into the classroom) and the work was really good stuff.
The teacher had them make a "movie" about measurements using Keynote on Mac. There were six slides. And they had to do something on each slide. One slide they had to put the balls in order from smallest to largest. On another they had to put animals in order from lightest to heaviest (I thought for sure she would struggle with that one). Then they had to put people in order from shortest to tallest. Then they had to measure an elephant and a turtle by dragging paperclips to measure how tall they were in paperclips. I was so proud to see that she could do all of those without any problem!
So, I didn't want her to leave in the middle of that. So, we were late getting going. Then she had to go to the potty. Then she walks so slow. Then we finally got out of the building and then they tapped on the window for me to come back. Then I went back into the building (Harlie was still walking back toward the building) when they told me that I left her freaking communication device in the classroom. Good one - considering we were rushing to speech therapy to work on the communication device. Boy, would I have really looked like an idiot!
So, I put all our stuff down (must get a rolling cart for all that crap!) and ran towards her classroom. Luckily her teacher sent a student towards the office with it, so we met in the hallway (time saver!). Then we rushed back out the door toward the car. I had Harlie's backpack, lunch box, suction machine and my bag (which carried my laptop). And that stuff is heavy! I couldn't stand walking that slow - my arms and shoulders were killing me. So I ran ahead and opened the car and put my stuff down, thinking, of course, that Harlie would continue her slow trek down the sidewalk. I turned around and nope. She had not taken another step since I left her. UGH! So I ran to get her and just had to carry her to the car.
Sometimes I wonder what we look like to other people. We are a mess!
So, we're in the car and I'm driving the speed limit to therapy... when my gas light comes on. Great. So, I get us to therapy and that goes okay. It was our first session. I asked her how she labeled our therapy for insurance - like for speech therapy or augmentative device. She said either way, it's considered speech therapy. This story's getting kinda long... but since we already see a speech therapist, I was surprised that our insurance approved our therapy with Delisa, since they only pay for one ST - even though they might be focusing on two totally different things (which totally annoys me, but whatever). Then I remembered that we had to switch insurances at the beginning of January. That's another big mess - but I don't feel like talking about that right now. So, since we haven't been to see Becca in a while, I had not given them our new info yet. Which meant that when they went to get approval for Delisa, they didn't see another ST providing services. Which meant that I was going to have to pay out of pocket for Becca. And she is NOT inexpensive. Oops.
Therapy went well. She gave me some tips on how to use the device more. And we left.
Therapy was from 1 to 2pm. Physical therapy is at 2:30, 30 minutes away. Which means I don't have the time to get gas. But, obviously I can't NOT get gas. So I had to stop, which of course, made us late for PT. And no matter what, we're always late for PT. It was while I was standing still at the pump that I realized this was too much. I didn't pack enough food for me for the day. And, more importantly, I didn't pack enough food for Harlie. I totally forgot to pack her a can for the afternoon. Crap. And home seemed like an eternity away. So, something's got to go. Period.
For the next 30 minutes I thought about it. Which therapy can I stop? Becca is expecting a baby in March, so we're going to stop seeing her eventually anyway. Plus, her session is only 30 minutes. So, it seemed logical that we stop that one. Although I think Becca is awesome.
And wouldn't you know? We sit down for Becca's session and she tells me that she's moving! So, we mutually broke up. Each of us saying it's not you, it's me. Funny how things work sometimes.
So, back home we go. Whew! It was a looooong day! And if I was as tired as I was, I can only imagine how tired Harlie was.
We go home and enter another chaotic environment. It was Murphy's last day to work on his ocean diorama (habitat in a shoebox) and you know he didn't do anything while I wasn't home. And Cooper has been especially whiny lately. I mean, like every sound out of his mouth is a whine. I don't know if he's got some teeth coming in or something, or if he just knows that this week has been crazy and he doesn't like it. But it's really pushing Tom and I to the limit.
But, I have to say, Tom has been great this week. He has really pitched in and been super understanding that my days have been... unusually difficult this week. He was pretty grumpy earlier. And sometimes I just get worried. I guess about us (his family) pushing him too hard to do too much. Even though our life is so crazy, I still want him - and us - to be happy. I want to know that he is still where he wants to be. So we talked about what we like/don't like about how our life is right now. It's so easy to be angry at the way things are - and then take it out on the ones you love. And then it's so easy to misinterpret that. Then things just snowball downhill. And I don't want that to happen. Sometimes just talking about it makes a big difference. You've been heard and therefore, you feel better. Maybe he should blog...
At any rate, talking about it really helped. And boy am I glad we had that talk when we did! Because if we hadn't talked before the last few days, who knows how bad it could be around here!
Well, it's lunchtime again (10 freaking 30!). More later!
Thanks!
~Christy
I wish.
Harlie's happy and healthy and glad to be here. And I am thankful. I really don't want to complain. I don't! But no mom should go with her kindergartener to school every day. Period.
And I have a job. A whole list of duties and responsibilities I need to work on every day. And when those things aren't done, it makes our evening more stressful. It just creates a negative chain reaction, that we simply don't need.
The mornings would be so much better if Harlie could feed herself her own breakfast. And then that makes me think that maybe I should bring self-feeding back to the top of our priority list. But, I just can't do that right now. One, there's no more room at the top of the list. Two, there's a part of me that says that would negatively impact her progress in having refusal-free meals (which we are still immensely enjoying). I just don't think I could push her right now. And the only thing that's telling me that is my gut. And I don't know how much I can trust that. Because the reality is that working on self-feeding will be very time consuming. And we simply don't have any more time. None!
So, yesterday was our first new and hyped-up Therapy Thursday. And it sucked. I knew after the first therapy session that it wasn't going to work.
First of all, I'm freaking tired. I feel like a wimp saying that. But, I haven't been able to stop for a second all week. Plus, I did my Adrenaline class on Tuesday (my last day of "freedom") and it kicked my ass. Seriously. Since the new year I really feel like he's amped up the difficulty. Plus, I had done virtually nothing for almost two weeks (since the sickness period in our home). So, it was a shock to say the least. My body is still reminding me that it's pissed. Oh, and that I'm 40. Shut it, body! I didn't ask you!
So, we were supposed to leave around 12:30 to go to our first therapy session - ST with Delisa (to work on the communication device). But, the class had C.O.W.s (computers on wheels - when they bring laptops into the classroom) and the work was really good stuff.
The teacher had them make a "movie" about measurements using Keynote on Mac. There were six slides. And they had to do something on each slide. One slide they had to put the balls in order from smallest to largest. On another they had to put animals in order from lightest to heaviest (I thought for sure she would struggle with that one). Then they had to put people in order from shortest to tallest. Then they had to measure an elephant and a turtle by dragging paperclips to measure how tall they were in paperclips. I was so proud to see that she could do all of those without any problem!
So, I didn't want her to leave in the middle of that. So, we were late getting going. Then she had to go to the potty. Then she walks so slow. Then we finally got out of the building and then they tapped on the window for me to come back. Then I went back into the building (Harlie was still walking back toward the building) when they told me that I left her freaking communication device in the classroom. Good one - considering we were rushing to speech therapy to work on the communication device. Boy, would I have really looked like an idiot!
So, I put all our stuff down (must get a rolling cart for all that crap!) and ran towards her classroom. Luckily her teacher sent a student towards the office with it, so we met in the hallway (time saver!). Then we rushed back out the door toward the car. I had Harlie's backpack, lunch box, suction machine and my bag (which carried my laptop). And that stuff is heavy! I couldn't stand walking that slow - my arms and shoulders were killing me. So I ran ahead and opened the car and put my stuff down, thinking, of course, that Harlie would continue her slow trek down the sidewalk. I turned around and nope. She had not taken another step since I left her. UGH! So I ran to get her and just had to carry her to the car.
Sometimes I wonder what we look like to other people. We are a mess!
So, we're in the car and I'm driving the speed limit to therapy... when my gas light comes on. Great. So, I get us to therapy and that goes okay. It was our first session. I asked her how she labeled our therapy for insurance - like for speech therapy or augmentative device. She said either way, it's considered speech therapy. This story's getting kinda long... but since we already see a speech therapist, I was surprised that our insurance approved our therapy with Delisa, since they only pay for one ST - even though they might be focusing on two totally different things (which totally annoys me, but whatever). Then I remembered that we had to switch insurances at the beginning of January. That's another big mess - but I don't feel like talking about that right now. So, since we haven't been to see Becca in a while, I had not given them our new info yet. Which meant that when they went to get approval for Delisa, they didn't see another ST providing services. Which meant that I was going to have to pay out of pocket for Becca. And she is NOT inexpensive. Oops.
Therapy went well. She gave me some tips on how to use the device more. And we left.
Therapy was from 1 to 2pm. Physical therapy is at 2:30, 30 minutes away. Which means I don't have the time to get gas. But, obviously I can't NOT get gas. So I had to stop, which of course, made us late for PT. And no matter what, we're always late for PT. It was while I was standing still at the pump that I realized this was too much. I didn't pack enough food for me for the day. And, more importantly, I didn't pack enough food for Harlie. I totally forgot to pack her a can for the afternoon. Crap. And home seemed like an eternity away. So, something's got to go. Period.
For the next 30 minutes I thought about it. Which therapy can I stop? Becca is expecting a baby in March, so we're going to stop seeing her eventually anyway. Plus, her session is only 30 minutes. So, it seemed logical that we stop that one. Although I think Becca is awesome.
And wouldn't you know? We sit down for Becca's session and she tells me that she's moving! So, we mutually broke up. Each of us saying it's not you, it's me. Funny how things work sometimes.
So, back home we go. Whew! It was a looooong day! And if I was as tired as I was, I can only imagine how tired Harlie was.
We go home and enter another chaotic environment. It was Murphy's last day to work on his ocean diorama (habitat in a shoebox) and you know he didn't do anything while I wasn't home. And Cooper has been especially whiny lately. I mean, like every sound out of his mouth is a whine. I don't know if he's got some teeth coming in or something, or if he just knows that this week has been crazy and he doesn't like it. But it's really pushing Tom and I to the limit.
But, I have to say, Tom has been great this week. He has really pitched in and been super understanding that my days have been... unusually difficult this week. He was pretty grumpy earlier. And sometimes I just get worried. I guess about us (his family) pushing him too hard to do too much. Even though our life is so crazy, I still want him - and us - to be happy. I want to know that he is still where he wants to be. So we talked about what we like/don't like about how our life is right now. It's so easy to be angry at the way things are - and then take it out on the ones you love. And then it's so easy to misinterpret that. Then things just snowball downhill. And I don't want that to happen. Sometimes just talking about it makes a big difference. You've been heard and therefore, you feel better. Maybe he should blog...
At any rate, talking about it really helped. And boy am I glad we had that talk when we did! Because if we hadn't talked before the last few days, who knows how bad it could be around here!
Well, it's lunchtime again (10 freaking 30!). More later!
Thanks!
~Christy
Thursday, February 2, 2012
School, nursing, therapy, etc.
I'm at school again with Harlie today. Terri is sick. And I don't have a back-up nurse. Looks like I'm going to have to do something about that...
Our nurse situation has changed. As is inevitable, I suppose. I wanted to hold on to the way things were for as long as possible. But, Jennifer's job changed, so her hours and demands did, too, making her less available to help us. And Brandy helps out when she can. And, Harlie's schedule is more demanding, too.
I get a sense of what it's like to be a single mom, dating. Wanting to screen the dates and make sure it's a relationship worth introducing to the kids. Except, I can't. So, every nurse will meet the kids and it's more and more people they are seeing enter our house, leave our house, help take care of Harlie, etc. Then they ask, "Where's ______?" Well, really it's only Cooper who is asking. And he doesn't understand.
So, that's fun.
I had plans today. And Cooper's home today. I have two people helping out with him today. And while I am SO thankful to have my little village of people that are always there when I need them (and you know who you are!!) it makes me sad that I can't be there, being his mom, and spending time with him. And that I can't honor my commitments. And that I have to be so unreliable.
I will say there is something positive about seeing Harlie at school. Yesterday I saw her pick up her new lunch box and show it to another mom who was waiting for her child. She didn't know this mom. She was just showing off her new lunch box, just like every other typical kid does. When I am here, the kids come up to me all the time, showing me their shirts, lunch boxes, backpacks, necklaces, whatever. And to see her doing something so typical, well, that's pretty cool.
In the mornings the kids have to write a word and draw a picture in their "doodle diaries." I sat here and watched several of the kids take their notebooks to the teacher to show her. I don't know if that's something that she asks them to do or if they just show her when they are particularly proud of that day's work. Either way, after a few kids did it, I saw Harlie carry over her book and show her teacher. Then she returned to her desk. I was wondering if she would come show me, since I'm here. But, no. Which is actually a good thing. She should be showing her teacher and not worrying about whoever is sitting at this desk.
Plus, I get to see how good the kids are with her. I know that won't last forever. So I'm going to enjoy it while it lasts.
Yesterday, during recess, she was on the swing and I was pushing her. A bunch of the girls wanted to push her, too. Harlie was laughing/humming while swinging. A little girl heard her and asked what she was doing. I told her she was happy and she was singing and laughing. Then Harlie laughed (she does have a funny little laugh, that makes other people laugh, too). And the little girl looked at me, all surprised and then laughed, too. Then she told another little girl, "Harlie just laughed!" And then they all started laughing. It was really, really cute.
So, for those moments, I'm glad to be here.
Anyway, on Friday Harlie had an appointment with the Feeding Clinic. Even though she is not currently receiving feeding therapy, she still has to check in every six months with the team and nutritionist to be weighed in and make sure she's getting enough calories.
At five years old, she weighs 35 pounds. That puts her in the 10th to 20th percentile. Not bad. But, her height is only 39.5 inches. That puts her in the less than 3rd percentile. Cooper, at three, is only an inch or so shorter than her! It's really quite crazy how tiny she is compared to her classmates.
The doc also put her back on the waiting list to receive feeding therapy. The waiting list is NINE months long!!! So, by the time she gets back, she would have taken a whole year off from feeding therapy. And that's if she is able to go into feeding therapy when her name comes up (depending on jaw surgery and recovery). At this point, I don't know how I'm going to fit it in her schedule anyway.
Sometimes I think I'm a glutton for punishment.
I found - and added - another speech therapist to work with Harlie once a week. So, she will now see her school ST (twice per week), Amy (once per week), Becca (once per week) and Delisa (once per week). But, Delisa will work on her communication device, which no one else is doing.
I'm torn because all of this therapy means time out of school. And all of it is important. But, I can't always get therapy out of school hours. I guess I will do this for this year (since she's repeating kindergarten, anyway). And next year, we'll just see where we are.
So, now Thursday will really be Therapy Thursday. She'll see Delisa at 1pm, then we'll rush over to the southside to see Traci (her PT) and then immediately after that, we'll see Becca. What a long, hard day!
Since she's been sick, she's missed all this therapy for the last three weeks in a row. And for the past few months, I've been meaning to schedule an appointment for her to see her cardiologist. It's time for her yearly check-up, and I have a few questions. Her heart rate has been dipping really low during the night while she's sleeping. I now have to set her monitor to alarm if it dips to 35 bpm. If the alarm is set to 40, it will alarm every night. This alarm setting has slowly gotten lower and lower over time. Not sure what's up with that. I'm not too worried since I know that it's because of her heart block (which means sometimes there is a longer pause between beats and the pauses aren't even or consistent). So, she recovers, and it doesn't stay that low for that long. At least I don't think it does.
Anyway, I finally called the other day and he only sees patients on Thursday afternoons. Of course. So, she'll have to miss another whole day of therapies to see him. I didn't make the appointment because I wanted to think about how long I'm willing to wait to see him so she can get some therapy in. That kind of stuff just bugs me.
Well, we are off to the cafeteria for lunch (yes, at 10:30 AM). So, I must wrap this up.
More later!
~Christy
Our nurse situation has changed. As is inevitable, I suppose. I wanted to hold on to the way things were for as long as possible. But, Jennifer's job changed, so her hours and demands did, too, making her less available to help us. And Brandy helps out when she can. And, Harlie's schedule is more demanding, too.
I get a sense of what it's like to be a single mom, dating. Wanting to screen the dates and make sure it's a relationship worth introducing to the kids. Except, I can't. So, every nurse will meet the kids and it's more and more people they are seeing enter our house, leave our house, help take care of Harlie, etc. Then they ask, "Where's ______?" Well, really it's only Cooper who is asking. And he doesn't understand.
So, that's fun.
I had plans today. And Cooper's home today. I have two people helping out with him today. And while I am SO thankful to have my little village of people that are always there when I need them (and you know who you are!!) it makes me sad that I can't be there, being his mom, and spending time with him. And that I can't honor my commitments. And that I have to be so unreliable.
I will say there is something positive about seeing Harlie at school. Yesterday I saw her pick up her new lunch box and show it to another mom who was waiting for her child. She didn't know this mom. She was just showing off her new lunch box, just like every other typical kid does. When I am here, the kids come up to me all the time, showing me their shirts, lunch boxes, backpacks, necklaces, whatever. And to see her doing something so typical, well, that's pretty cool.
In the mornings the kids have to write a word and draw a picture in their "doodle diaries." I sat here and watched several of the kids take their notebooks to the teacher to show her. I don't know if that's something that she asks them to do or if they just show her when they are particularly proud of that day's work. Either way, after a few kids did it, I saw Harlie carry over her book and show her teacher. Then she returned to her desk. I was wondering if she would come show me, since I'm here. But, no. Which is actually a good thing. She should be showing her teacher and not worrying about whoever is sitting at this desk.
Plus, I get to see how good the kids are with her. I know that won't last forever. So I'm going to enjoy it while it lasts.
Yesterday, during recess, she was on the swing and I was pushing her. A bunch of the girls wanted to push her, too. Harlie was laughing/humming while swinging. A little girl heard her and asked what she was doing. I told her she was happy and she was singing and laughing. Then Harlie laughed (she does have a funny little laugh, that makes other people laugh, too). And the little girl looked at me, all surprised and then laughed, too. Then she told another little girl, "Harlie just laughed!" And then they all started laughing. It was really, really cute.
So, for those moments, I'm glad to be here.
Anyway, on Friday Harlie had an appointment with the Feeding Clinic. Even though she is not currently receiving feeding therapy, she still has to check in every six months with the team and nutritionist to be weighed in and make sure she's getting enough calories.
At five years old, she weighs 35 pounds. That puts her in the 10th to 20th percentile. Not bad. But, her height is only 39.5 inches. That puts her in the less than 3rd percentile. Cooper, at three, is only an inch or so shorter than her! It's really quite crazy how tiny she is compared to her classmates.
The doc also put her back on the waiting list to receive feeding therapy. The waiting list is NINE months long!!! So, by the time she gets back, she would have taken a whole year off from feeding therapy. And that's if she is able to go into feeding therapy when her name comes up (depending on jaw surgery and recovery). At this point, I don't know how I'm going to fit it in her schedule anyway.
Sometimes I think I'm a glutton for punishment.
I found - and added - another speech therapist to work with Harlie once a week. So, she will now see her school ST (twice per week), Amy (once per week), Becca (once per week) and Delisa (once per week). But, Delisa will work on her communication device, which no one else is doing.
I'm torn because all of this therapy means time out of school. And all of it is important. But, I can't always get therapy out of school hours. I guess I will do this for this year (since she's repeating kindergarten, anyway). And next year, we'll just see where we are.
So, now Thursday will really be Therapy Thursday. She'll see Delisa at 1pm, then we'll rush over to the southside to see Traci (her PT) and then immediately after that, we'll see Becca. What a long, hard day!
Since she's been sick, she's missed all this therapy for the last three weeks in a row. And for the past few months, I've been meaning to schedule an appointment for her to see her cardiologist. It's time for her yearly check-up, and I have a few questions. Her heart rate has been dipping really low during the night while she's sleeping. I now have to set her monitor to alarm if it dips to 35 bpm. If the alarm is set to 40, it will alarm every night. This alarm setting has slowly gotten lower and lower over time. Not sure what's up with that. I'm not too worried since I know that it's because of her heart block (which means sometimes there is a longer pause between beats and the pauses aren't even or consistent). So, she recovers, and it doesn't stay that low for that long. At least I don't think it does.
Anyway, I finally called the other day and he only sees patients on Thursday afternoons. Of course. So, she'll have to miss another whole day of therapies to see him. I didn't make the appointment because I wanted to think about how long I'm willing to wait to see him so she can get some therapy in. That kind of stuff just bugs me.
Well, we are off to the cafeteria for lunch (yes, at 10:30 AM). So, I must wrap this up.
More later!
~Christy
Wednesday, February 1, 2012
Harlie Lost a Tooth
I am at school with Harlie today. She was finally 100% better and returned to school yesterday (Monday was a school holiday). Cooper is back at school today as well (he got it, too). I got to exercise yesterday for the first time in a while and I think we are all happy again. Except for Tom, who has been in a grumpy mood lately.
I have a couple things I want to tell you about. I might break this into two posts, so check back soon.
First, Harlie lost a tooth the other day. I had no idea it was even loose. Tom gave her meds on Sunday night and showed me that her HME was bloody. I thought that was strange, but didn't think that much of it.
Then in the morning, I noticed that the cuff of her pj sleeve was bloody, too. Huh. Then I saw her wipe her mouth. So I asked her if her mouth hurt, and she looked at me and then pulled her lip down to show me her missing tooth.
I knew there was no way she swallowed it. She gags on the smallest lump of oatmeal! So I checked in her bed. Nope. Then checked the floor. And there it was. I think she must have pulled it, or fished it from her mouth and then threw it.
This is not her first lost tooth. I think she's lost a total of four during surgeries. And then Tom pulled her top tooth back in September. But that was because her dentist told us that it was loose.
It just feels weird to wake up and have it be out without any notice. This is just one of those "little things" that kinda stings. I guess I have to start checking her teeth. You'd think I would notice when brushing her teeth. But I didn't.
Luckily we go back to the dentist in February. Her one top tooth (the very first one she lost that was a casualty of her jaw surgery in 2009) still has not come in! I thought for sure it would have shown up by now. And that one is the one that will make the biggest difference in her appearance. Of course.
Okay, that's it for this one. More soon!
~Christy
I have a couple things I want to tell you about. I might break this into two posts, so check back soon.
First, Harlie lost a tooth the other day. I had no idea it was even loose. Tom gave her meds on Sunday night and showed me that her HME was bloody. I thought that was strange, but didn't think that much of it.
Then in the morning, I noticed that the cuff of her pj sleeve was bloody, too. Huh. Then I saw her wipe her mouth. So I asked her if her mouth hurt, and she looked at me and then pulled her lip down to show me her missing tooth.
I knew there was no way she swallowed it. She gags on the smallest lump of oatmeal! So I checked in her bed. Nope. Then checked the floor. And there it was. I think she must have pulled it, or fished it from her mouth and then threw it.
This is not her first lost tooth. I think she's lost a total of four during surgeries. And then Tom pulled her top tooth back in September. But that was because her dentist told us that it was loose.
It just feels weird to wake up and have it be out without any notice. This is just one of those "little things" that kinda stings. I guess I have to start checking her teeth. You'd think I would notice when brushing her teeth. But I didn't.
Luckily we go back to the dentist in February. Her one top tooth (the very first one she lost that was a casualty of her jaw surgery in 2009) still has not come in! I thought for sure it would have shown up by now. And that one is the one that will make the biggest difference in her appearance. Of course.
Okay, that's it for this one. More soon!
~Christy
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