Thursday, August 30, 2007

5 Year Anniversary

Well, today was a very busy day. We took Murphy to his last day at his daycare. Even though I know he's going to be very happy at the new place, I felt kind of sad. Although I will not miss the drive, I'll tell you that.

Then we went to her helmet appointment. That went fine. Unfortunately I am paying for a mistake I made last week. She's supposed to wear her helmet 23 hours a day. Well, while she was in the hospital this last time, I put it on and just didn't take it off - for like 3 days! Once she got the n-j tube, we put the tube in the velcro strap to keep her from grabbing it. So, once we did that, I just didn't take it off. Well, when I finally did remove it, she had an abrasion over her left eye. Oops. So I had to leave it off to let that heal. Hopefully I can put it back on tomorrow.

After that, we went to her GI appointment. As is very common with my appointments with MCV/VCU docs, an intern comes in to chat first. They ask a gazillion questions and it takes forever. Then they go tell the doc and then the doc comes in and you have to repeat a bunch of it. Well, it made me so mad last time we went to see the GI doc. I have spent countless hours talking to every kind of doctor at every level. Quite frankly, I'm tired of it. So, when the intern came in to ask us politely if he could ask us some questions, I told him no.

I joked with Brandy that I should tell him I charge a fee to "train" new docs. But, I didn't. I told him that Harlie is just too complicated and I just don't have the energy today. Just come in with the doc and I'll tell you both at the same time. Once the doc came in, and we started talking about everything, I think the intern understood. I don't really have the time or energy to talk about the details of the GI appointment. I'll have to write that one later.

Then we went to see the pediatrician. That was okay I guess. Harlie is sick again, maybe its just a cold. But, unfortunately, she's back on O2 and she had to have it all last night, and all day today. It's a bummer. But hopefully it is just that she's sick and nothing more serious than that.

Well, tomorrow is our 5 year wedding anniversary. Hard to believe. Seems like it has flown by. We're not sure what we're going to do yet. I guess it's kinda hard to plan too much in advance.

Well, it is late, so I'm going to sign off now. Thank you again for thinking of us and for cheering us on.

Take care,
Christy

Wednesday, August 29, 2007

Still home!

Well, it's been more than 24 hours now, and we're still home. So far, so good! Our night nurse went upstairs to do vitals and came back downstairs with this funny little smile. She said, "her respirations are 44." Harlie's normal respiration rate (the number of breaths you take in a minute) is usually in the 80's. What a difference!!!! She has to feel better with that kind of change.

We had physical therapy today. We thought she did just great - especially considering all she's been through in the last two weeks! I really think she is SO close to sitting up on her own. She is definitely learning how to balance herself. I just can't wait! I need to start working with her every single time I'm picking her up - teaching her how to transition herself from sitting to laying down and the other way around. What a change that will be when she can do all that stuff by herself.

Well, tomorrow is a very busy day. We have three appointments! (helmet adjustment, GI, and pediatrician). That's it for tonight. I hope you are all doing well.

Take care,
Christy

Tuesday, August 28, 2007

WE ARE HOME!

Just a real quick one to let you know that we are indeed HOME!!! I couldn't be happier about everything that has happened these past few days!!! I don't have time to explain right now - I will update this entry tonight. I just want to say that she is still on ROOM AIR and doing GREAT!!! WOOHOO!!!!

Thank you, thank you, thank you for ALL your encouragement these past two, very crazy, weeks. What a roller coaster! Thank you for hanging in there with us - we are eternally grateful!!!

(More details later...)
-Christy

10pm - Well, we're still home and everything is going okay so far. Harlie is very happy, and so am I. Although, to tell you the truth, Harlie has been very happy the past couple of days. She smiled at anyone who would glance her way!

Let's see...where to start? Well, her lungs sound great (for Harlie, that is). No wheeziness - which is hard to believe. After a consultation with the GI docs, we decided against the j-tube. My gut tells me that she wasn't aspirating. And the docs really wanted more proof before going into the OR (which I really liked). I think the Pulmicort is what has really helped her. Maybe that in combination with the lung surgery is what has caused the improvement. She has had reflux for so long, if she was aspirating, I think (and the docs, too) that her lungs wouldn't have improved that quickly.

So, we resumed feeding her through her g-tube yesterday. And so far, so good. We will follow-up with Harlie's GI doc here in Richmond this week (no rest for us, we've already got 4 appointments scheduled!).

We also decided to switch her from her fat-free diet to a more "regular" formula. Hopefully the chylothorax has resolved itself and won't come back.

I can't believe she's on room air. I just can't believe it. What a difference it makes for us!

She has lost a little bit of weight (about a half a pound). Which isn't surprising considering for the past few days she's been on only enough feeds to keep her hyrdrated. Just a few hours ago we worked up to her full feeds. So, hopefully if she's working less hard to breathe, and she's back at full feeds, she'll start to pack on the weight!

Well, that's it for now. Thank you again for your support. I know that it must be very hard to know what to say or do when it comes to us. But just knowing that you care makes a world of difference. So, thank you for being there and for reaching out to us. I don't know what we would do without it!

Talk to you soon!
-Christy

Monday, August 27, 2007

Things...

Well, things are going I guess. Harlie went several days without throwing up. It was nice. But then yesterday she threw up 3 times. Bad sign.

The nurse did a test to see if the tube is in the stomach instead of the intestines and it looks like it is (it's supposed to be in the small intestines). I guess they'll need an x-ray to confirm it. So, I don't know what the plan will be. If they tell me that she needs to have the n-j tube placed again, I will scream. That was terrible and I don't know that I can let her go through that again. They tell me that it usually only takes 2 minutes but I know that wasn't the case with her.

The GI docs are supposed to come and talk to me now that they are going to have to play more of a role. The number of docs that I've had to talk to is really quite staggering. Hopefully they can get her in the OR soon to place the G-J tube. Prior to yesterday's vomitting, everyone was really happy with how Harlie's lungs sounded. And she was on ROOM AIR all day yesterday. (the first time since that one glorious week in March).

We had to put her on O2 during the night (her sats were staying in the low 70's) but, I'm completely fine with that. This morning, she's back on room air, and doing just fine. I had no idea that her lungs could turn around so quickly! Hopefully that's a very good sign that there wasn't THAT much damage and that once we get this reflux under control, we'll be okay. With the j-tube, we'll have to keep her on 24-hour continuous feeds - but that certainly beats lugging around the oxygen tank. I'll know more about how long to expect to have the j-tube once I speak with the GI docs. I have lots of questions for them.

They mentioned wanting to get some lung study done on her but they don't have the capabilities here. So that would have to be done at Johns Hopkins - but hopefully we can wait on that. I just want to get her home and let her be a baby for a little while. I was really hoping they could get everything done by tomorrow.

We decided to move Murphy into a different preschool program that is right across the street from our house. We really think he's going to love all that they have to offer. And we are going to love the convenience of it. Well, their back to school night is tomorrow night and I really want to go. (He starts on September 4th.) Well, that's about it for now. Thanks for all your support!

Take care,
Christy

Saturday, August 25, 2007

11 Months Old Today

Harlie is 11 months old today. Hard to believe. I remember what it was like when Murphy was 11 months. He was so close to walking, eating table food, no more bottles and no more formula. Oh, how different it is with Harlie.

Yes, we've had a couple of crazy days. Just when I think we are getting a handle on things, life goes out of control. This has definitely been one of the more difficult hospital stays so far.

To recap:

We were getting Harlie ready to go to the pediatrician's. She was having a lot of trouble breathing and turned blue. It seemed to take all her might just to take one breath. I didn't want to call 911. I dialed, and hung up. I just wanted to believe that she would get better on her own. But I know what respiratory distress looks like, and that was it. They called me back (since I hung up) and I felt like a tool. Told them what was going on - trying to keep my voice from shaking and they said they were on their way. It only took a few minutes for them to get there. And we left.

There was a lot of confusion at the ER. Luckily, a nurse who knows us really well was there. They thought they were going to have to put her on a vent, but finally they got her straight. Then the whole helicopter transfer happened. I tried to tell them that wasn't necessary. I just felt like it was overkill to tell you the truth. I guess I just didn't want to believe that it was happening. I just wanted to take her home. But, they said it was too risky to do anything else. Without knowing what caused her distress and considering it had only been 24 hours since she was discharged from a hospital, it was the safest thing to do.

The ride was way cool. Too bad it was under those circumstances. Yes, I sat in the co-pilot seat. And as I have been asked by a few, I got to wear the headphones with the talking piece. I wish I had my camera. Harlie did great. The guys were really nice and the pilot pointed out things to me throughout the trip there. We got to DC in less than an hour. She was admitted to the PICU. You can't sleep in the PICU. Since I had no way to the RMH, I slept in the waiting room. It really wasn't that bad. (it was bad, actually, I'm just trying to make myself believe it wasn't that bad.)

Friday was a very busy day. I don't even know where to start. As far as what got us here, my theory is that the breathing treatments she was on (every 4 hours) dried up her secretions too much. I think she had some mucus plugging. After some time with no breathing treatments, her secretions slowly got back to her normal and she really seems fine now. The funny thing is that I was going to call Pulm. that very day to ask about that because I thought at the time that she was too dry. I am really learning to trust my instincts.

I've spoken with her pulm. docs up here, and they agree with my theory. So now she is on Pulmicort only twice a day. They stopped the other one completely. So, I guess since we're back, for some reason, everyone seems to want to take care of this whole O2 requirement and lung wheeziness for once and for all. They believe that her reflux has caused her to aspirate, causing damage to her lungs.

She went over 31 hours with no food and her lungs sounded better already. So, she had a CT scan of her chest, upper GI, and they put in an N-J tube (nasal to jejunum) tube. Next week as soon as they can, they are going to change her current G-tube (which goes into the stomach) to go into her jejunum instead. This will put food straight into her small intestines, which will reduce her vomitting by making it harder for it to come back up. Hopefully she won't vomit at all. I really can't imagine life without her vomitting.

At first, I was very sad. It just seems like instead of things getting better, we are learning more bad stuff, and going farther and farther from normal. But, if this keeps her from aspirating and saves her lungs, which will make her a better candidate for the Fontan (next heart surgery), well, then, I guess it is a good thing.

And I know that there has to be a down side to this. You have a stomach for a reason and bypassing it must have a consequence - but I guess we'll have to cross that bridge later.

Unfortunately, something went wrong with the machine and the CT scan didn't come out. So, they are going to repeat it today. The upper GI was normal. And the NJ process was terrible. He said that it normally takes him about 2 minutes to place one. It took almost one HOUR!!! He tried 3 separate times, and on the last one he said if he didn't get it, it wasn't going in. But they really wanted her to have it so she could be fed again. Luckily it finally went in.

She was so good. I know it is hard to believe, but she is so darn good. She just lays there and waits for them to stop. It breaks my heart that she's so used to this kind of life.

So, next week she'll have to go in the OR to have her g-tube changed to a g-j tube. Hopefully we'll get everything straightened out and it will be only a temporary thing. She's supposed to have a milk scan done as well. I think once that's all done, we'll be able to go home.

My mom came up yesterday to help me so I could leave to shower and eat, etc. Then today, Tom brought Murphy up. We will stay at the RMH tonight and let Tom stay at the hospital with Harlie (she's now back in the Heart and Kidney Unit).

Today while my mom stayed with Harlie, Tom, Murphy and I took the Metro to the Smithsonian. Murphy absolutely loved riding the metro. And he enjoyed the dinosaurs and the shark 3-D Imax movie. (not for very long though, because he fell asleep - and I did, too.)

The whole time I was there I wished that Harlie could be with us, too. I see so many families with their children and I just wish things could be different for us. I wonder what Murphy thinks when he sees other families with their babies, while ours isn't with us. I just have to hope that the next few months will bring her and us more freedom and more normalcy.

Well, we have to get back to the hospital. I'll try to update more later.

Take care,
Christy

Thursday, August 23, 2007

Back in the ER

Well, as luck would have it. Harlie had a great night sleep last night. So much so, that when I called home at noon, she was still sleeping! Then I called home at 1:30ish and Brandi told me Christy was out front with the Ambulance.

Best I know now is Harlie turned blue when she was getting up. They turned up the Oxygen, but that did nothing. Not sure what else they tried, but I know they didnt want to risk the drive to MCV.

So 911 was called yet again to our home.I haven't been able to speak with Christy but for a few minutes. They are at the MCV ER and were having an X-ray done. They wanted to try and get yesterday's X-ray from DC to compare with. Other than that, Harlie was okay. Ill keep you updated best I can.

Later,Tom

UPDATE: Im tired and dont feel like typing right now, but here goes.

Christy and Harlie took a helicopter ride to DC at 6 pm this evening. Yep, you read that right.
Basically, MCV had not much to offer other than a transfer to DC. They wouldn't allow us to drive her, or take an ambulance. We heard "what if" a lot of times. I dont have the whole story, nor do I really need it. But essentially she is going to have better care in DC for whatever is causing her breathing problems. Literally, thats about all we/I know. She was given a few breathing treatments in the ambulance that I understand seemed to help. She seemed perfectly fine when I was able to see her at 6:00. Then 5 minutes later, the Helo crew arrived and packed her into a little pod and off they went.

Sorry to sound negative, but Im not feeling very jolly right about now. We are all straight here for the most part, can't really plan much more until all the Doc's look at her tomorrow in DC, then we will just have to go from there.

Thats all I have. Tom

ps, on a lighter note, Christy just told me the helo ride was awesome! No surprise. She got to sit in the Co-Pilot seat. She found it very funny when the Pilot was told to "land on the big Teddy Bear". She also said she was trying to remember as many details asshe could to tell Uncle Bruce the pilot of the family all about it.

Wednesday, August 22, 2007

Day 8 - Home Sweet Home!

Ahhhh...finally we are home!

Last night they took x-rays at 11pm. Sometime in the wee hours of the night, a doc came to tell me that they wanted to take more x-rays in the morning. The surgery team rounded at 6am, nothing new to add. Just that if the next x-rays showed no increase in air, then we could go home. They took x-rays at 7am. I think it was about 10:30 when we got the word that we could leave. Went over paperwork, got all loaded up and we were on the road by 11:30.

It is so nice to be home again. When we're gone, I just completely shut out any thoughts of home. Then when I get home it is so wonderful. Harlie is doing okay. She hasn't slept much, but that's probably the excitement of being home. Hopefully she'll have a good night tonight. She's on breathing treatments every 4 hours. That's going to get old pretty fast. Hopefully in a few weeks, the frequency will decrease.

Well, I am ready to get some sleep in my own bed. I added some more photos from the past few days. Thank you for all your support, prayers, words of encouragement, etc. This was a tough surgery and a tough week for us and I really appreciate everything.

A special thanks to:
Todd, Lindsey and Olivia for bringing us dinner tonight.
Heather and Stefanie - Harlie loved the cheetah (leopard, tiger, whatever it is) and her balloon. Kristie, Dave, Nathan and Tayne - that candy bouquet was (note the past tense) the coolest thing ever. Seriously, I loved it.
Mom and Mary Ann - thanks for everything.

Tuesday, August 21, 2007

7pm Update

7PM - Well, they pulled the chest tube out at noon. They took more x-rays at 6pm just to make sure that there wasn't a lot of air in there. Then the doc came to tell me that they were just not comfortable sending us home based on those x-rays. There is still some air and they want to wait till 10pm to see if it is stable or not. So, we decided to go on ahead and stay another night. Hopefully, we'll be on our way home in the am. Of course, I already went and check out of RMH today. But, luckily, they are letting us have our room back for the night. Well, gotta go. Thanks!

Day 7

Well, the nurses are giving Harlie a much needed bath (her helmet doesn't smell like roses, let me tell you!) so while she's well attended to, I ran to get some breakfast and to the library.

The surgeons rounded at 6am this morning. For some reason, they didn't do the suction test this time - they want an x-ray and then they will determine if the chest tube can come out. Hopefully the x-ray tech will come around soon. She coughed a lot last night again. I spoke with a pulmonologist (actually two) late yesterday. I learned so much about her wheeziness in her lungs. There are a couple of things that could be causing it. So we are going to start with a different kind of breathing treatment that helps bronchomalasia (floppiness of the bronchial tubes to her lungs). If the wheeziness lessens, then we know that's it and in time she will outgrow it. There are some other things that could be causing it that I really don't like - reflux and microaspirations. The bad thing about these two causes is that we would really need to stop them from happening so we stop the damage they are causing to her lungs. The great thing is that I feel like we can get the help we need by seeing pulm. here instead of in Richmond. Not looking forward to more road trips, but if it is what she needs, then so be it. We have been seeing pulm. since bringing her home and I have never been told any of this. This is very discouraging considering all the time that we've lost. Lungs grow the most during the first two years of life. So, at least we still have some time to make some improvements.

Well, need to run.

OH! Thanks for the tip, Suzanne! When speech comes by today, I'll mention that, too!

Please keep your fingers crossed that they can pull the chest tube out today!!! I'll try to update later on today since my mom and Tom's mom are here to help me with Harlie. (I don't leave her in the room alone).

Take care,
Christy

Monday, August 20, 2007

Day 6

Well, Harlie had a terrible night. She was up every single hour coughing. It was a very long night for everyone in the room.

General surgery rounded at 7am and decided NOT to remove her chest tube. So, that buys us at least another day's stay. The problem is that her lobes were not formed normally (duh, right?). So, when he removed the lobes, he had to cut through air passageways. So, when she breathes, air leaks out of her lung into her chest cavity. The tube allows that air to escape so it doesn't build up in her chest. We have to wait for those passageways to scar down and stop leaking air. They will come back in the morning and check again to see if it's safe. I hope and pray that it is.

Well, the much anticipated Passy-Muir Valve was a bust. She didn't tolerate it at all. She just couldn't seem to push the air out of her mouth and nose. So, she inhales, but cannot exhale. So, not a sound was heard today. The speech therapist said she would bring it back tomorrow and try again. After she left I thought of a couple things that might help. And she's going to e-mail Harlie's ENT about the trial today to see if he has any ideas. I think he might suggest going down in trach size as far as the size of the hole, but keep the length of the tube. The more air that can go around the trach, the better. So, I guess we'll see what happens tomorrow. Clearly, this will be something that we'll have to continue to work on as she grows.

The ST said that not everyone is a candidate for the PMV, so that might have to be something we accept in time. And I think this goes back to the fact that her tongue could be blocking her airway sometimes. I know that she can do it though. I have felt air passing through her mouth. So, I'm really disappointed, but I still have hope. So, overall kind of crummy news today.

On a positive note, Harlie is much more smiley now. My mom and Tom's mom came up today and are with Harlie now so I could come to the RMH to shower and change clothes. So, I better get going. As always, thanks for all your thoughts and prayers. Please pray that they can pull the chest tube out tomorrow and that the PMV will work soon!

Take care,
Christy

PS:I added some Summer Photos under the Family Section. 8/20 - 3:30
Later, Tom

Sunday, August 19, 2007

Day 5

Well, just a quick one for now. Last night was my night to stay at the RMH and Tom is waiting for me at the hospital.

Just wanted to let you know that I added some more pics. One is of her incision - I know you've got to be curious as far as what it looks like.

ENT came by and said she definitely was in dire need of drops. So, she's got the meds she needs there. So, I feel better now. Today they are going to pull her last tube out - the remaining chest tube. YAY!

They put in an order for speech to come by tomorrow with the passy-muir valve. So, hopefully they'll come in the morning so we can get discharged at a decent time. Well, gotta go. As always, thank you for your continued support.

Take care,
Christy

Saturday, August 18, 2007

Post-Op Day 4

Well, I'm at the RMH to shower and change clothes, so I thought I would give a quick update.

We got moved to the floor yesterday afternoon. It is not a private room, but it is right across from the nurses station, so I'm very happy about that. (Hey Karen, it is Jameson's old room - and the same side of the room, too.) The nurses have been really nice, so that's going well. I spent the night last night and Tom will sleep there tonight.

Harlie is doing okay, all things considered. Her pain meds were being given every 4 hours, but she just couldn't make it to the next dose without clearly being in pain. Last night she woke up every 3 hours crying. So, they are going to give her something in addition I think.

Unfortunately she lost her last IV last night, so everything has to be given through her g-tube. So, everything had to be changed over to oral meds, which are not as strong or fast-acting. But, considering we are only going to be here a couple more days (hope & pray) I really don't want them going fishing for another vein. She's got scabs on every limb from where they had to try numerous times to get a site. I just don't want to put her through that again.

Last night some pretty yucky goo came out of her ear (I'll spare you the detailed description). I have been trying to get ENT to look in her ear since Tuesday, but haven't succeeded yet. Ugh. She had a bad ear infection on Monday, and was only on meds for that for one day. And they have not put her on any meds for that since - so I am afraid that the infection has gotten worse. Every day I have asked, but they never come. Last night I really got frustrated and I know that the doc was annoyed with me. But I am learning that being nice doesn't always get you what you need. They tell me that ENT will be coming today. So, we'll see.

When they rounded on her early this morning they said they were going to pull one of her chest tubes today. They told me that they only pull one a day. So, tomorrow they'll pull the second one, and observe her for most or the rest of the day. I think there is a slight chance we could be discharged tomorrow, but I'm not getting my hopes up. Monday is probably more realistic.

Well, that's about it for now. Thank you for all your kind words!!! I love reading them! Talk to you later,
Christy

Friday, August 17, 2007

Post-Op Day 3

Well, she seems to be comfortable today. They changed her meds and they seem to be working. They turned off the ketamine this morning to make sure that the oxycontin will do the trick alone, before moving her to the floor.

They turned off the suction from the chest tubes. So, they will watch the drainage and if it is stopped, they will take them out today (yay!).

She will definitely be moved to the floor today. But Tom came back this morning so it will be much less stressful with the two of us. We'll take turns sleeping in her room. Well, I say that, but I don't know what her room will look like, if it will be private, etc. I guess we'll just have to wait and see, but sleeping there probably won't be a problem.

She was more awake this morning. Although not really interacting - just looking around. No smiles yet. Although the cardiologist fellow said she smiled at him earlier, so that's a good sign. Maybe once the ketamine wears off, she'll be more "awake".

Well, that's it. I brought the camera today so I can take some more pics. She looks more like herself, so they will be better than the last ones. Okay, talk to you later! As always, thank you for checking in on us.

Take care,
Christy

Thursday, August 16, 2007

Post-Op Day 2

It is hard to believe that we are ONLY on post-op day 2! It feels like forever since I handed her over.

Harlie had a rough morning. ENT woke her up to do a trach change. She still had the cuffed one from when she was on the vent. They upsized her from a 4.0 neo to a 4.0 pediatric. It is the same size hole, but a longer tube. That was a little traumatic, and made her very upset. So, she threw up right afterwards. Then the nurse had to change all her bedding. She didn't like being moved around for that, either.

Then the surgeon's team rounded and had to mess with her a bit. He said everything looks good, but he wants to leave the chest tubes on suction for another day.

Then they came to take x-rays. So they had to mess with her again. She really just wanted to be left alone.

Then cardiology rounded. Her x-rays showed some fluid, so they are going to try a different diuretic. They didn't like how wheezy she sounded, so they are going to get some cultures and test for RSV and some other stuff. They are going to leave her arterial line in. The nurse told me that she cannot go to the floor with an arterial line, so I know we're not going anywhere as long as she has that.

The swelling has gone down a lot, so she is starting to look more like herself. I even got a very small, quick smile from her today. Although most of the time, when she does look at me, it is more like a "what have you done to me" kind of look. Ugh. Poor baby.

They are still trying to manage her pain. They don't want to leave her on the current pain plan for much longer so anes. will come and do another pain consult today. She's back on her full feeding. So, that's good. Hopefully she will tolerate that just fine.

I guess that's it for right now. Thank you for all your comments on my guestbook! I really appreciate them all.

Take care,
Christy

Wednesday, August 15, 2007

Post Op Day 1 - PM update

Well, we didn’t get kicked out of the ICU today (Wednesday). It looks like it will be tomorrow though. But we have the best social worker and she has already spoken to the folks on the HKU (Heart and Kidney Unit) about Harlie’s issues and our past experience so hopefully we’ll have a better stay this time.

Wednesday was a decent day for her. They ended up having to stop the morphine – it made her incredibly itchy around her face and it was clearly agitating her. So, they went back to a combo of fentanyl and ketamine, which seemed to work this time.

It looks like Harlie got another label during this stay. During rounds the doctor called her a “difficult sedation”. Her swelling has gone down a lot. Once it started to show improvement, they let me put her helmet on. It doesn’t seem to be bothering her at all.

Her chest tube drainage seems to be decreasing quickly. I think they are going to take them off suction tomorrow. Hopefully soon after that they will take them out. Then we get to take her home. It’s hard to think about taking her home when she hasn’t even woken up yet.

Well, that’s it for now. I’ll try to update later. Oh, and I posted just a few pics of her that we took today.

Take care,
Christy

Post Op Day 1 - AM update

Good Morning, Dad here - Harlie had a pretty good night. This morning they were able to get her off the vent and back on a trach collar. She is still pretty drugged up with Morphine, but all in all, I think she looks pretty good. She is still retaining alot of water so she is swollen, but that is part of today's goals to get that down. The morphine is making her itch pretty badly, so they gave her some Benadryl to hopefully help with that.

She is going to have another Pain Consult this morning to address the issue. We are also working this morning getting her back on her feeding schedule. Christy is waiting on the nutritionist upstairs now to discuss the plan. Unfortunately, we are probably going to be kicked out of the ICU either today or tomorrow. We would most likely be moved to the Heart and Kidney unit. For those who keep up with this journal, you'll remember our dislike for this unit (see entry 3/15/07).

I have been working on several game plans to ensure we have someone at her bedside 24/7 when that happens. (volunteers?)

Thats it for now, I am sure Christy will want to add more as the day progresses.

Later,
Tom

Tuesday, August 14, 2007

Surgery Update - 3PM

Well, so far so good! It is hard to believe that I'm in such a great mood while my baby is in an ICU! But today has definitely gone better than I expected, and that's been a long time coming, let me tell you!

About noon, Dr. Sandler came out to let us know how the lobectomy went. He said that her "lung tissue" was something he had never seen before - not "lobe like" at all. Completely abnormal growth and huge. So big in fact, that he had to make a larger incision and cut through her muscle. He said that would definitely make for a more painful recovery. Pathology will biopsy or study or do whatever they do to the tissue. Hopefully we will know something in the next 3-4 days. Smiling, he said odds are, they are going to say they don’t know what it is. Ahh, leave it to Harlie…

The actual procedures itself (the lobectomy and upper placation) went great. He said that we are already out of the woods as far as saving her middle lobe (which is normal if you can believe that). It now has plenty of room to grow. He said it would be a slow process, but growth at any rate is better than none! Unfortunately, because of the abnormal growth of all the connections in the lobes, he expects that she will need the chest tube for a week or so. Luckily, I knew better than to believe the 4 day estimate originally given. I planned for more than a week anyway.

We didn't get to see her until about 1ish. She is pretty swollen and surprisingly she was “awake”. She tried to turn towards us to get a better look. Ugh – it broke my heart! I am afraid that as she gets older, it will get harder and harder to see her like this. Unfortunately, we have learned that a thoracotomy is extremely painful - more so than a sternotomy, which is what she had for heart surgery. Also, cardiac kids have a much higher tolerance for pain meds, so they need a lot more than most general surgery patients. And Harlie has had a lot of pain meds in her 10 months! Her heart rate was high and she was clearly uncomfortable and in pain. So they kept on giving her more and then the cardiologist said, "bring out the horse meds". So, when we left she seemed to be sleeping more soundly.

They started a new thing here where 2-3pm is "quiet time" for the patients. They turn out the lights, no talking, no coming or going from the unit, and they encourage parents to get away and take a break. Which I think is a good thing and I thought it was timed well for her since it gave us just enough time to get all the questions answered and paperwork completed. I hope that not hearing our voices will help her rest easier. So, we left and came over to the RMH to check in and get all settled here. We will go back and spend the rest of the afternoon with her.

My mom, sister and niece are here, so since Harlie is in wonderful hands and should be sleeping soundly till tomorrow we are going to go out to eat for dinner. As everyone says here, we have the most expensive babysitters - so take advantage of it.

Everything went so well today – we could really get used to this! It just feels so good to be happy about this!!! Thank you for all your messages, thoughts and prayers. And Heather, thanks for the good luck charm – I would say it served her well today.

Talk to you soon,
Christy

Surgical Update - 9AM

Well, we got here okay. Although as soon as we got off the interstate and entered the familiar streets to the hospital I thought I was going to throw up. But, once we got parked and up to registration, that went away. They said surgery was scheduled for 7:30 and at 7:34 they came to take her away from us and to the OR. Of course, all the craziness prior was standard. We had to speak to everyone and tell everybody what she was having done today.

And here's something funny for you...because of hospital policy, they had to put a mark on the ear they were going to put a tube in. Hmmm, no opening to the other ear, not really sure how they could make a mistake on that one. But that's policy for you.

I decided against changing her feeding tube at this time. As long as she's on continuous feeds, I see no reason to go to a mic-key button. And she'll have another surgery on her bum as soon as she fully recovers from this surgery, so if she's off continuous feeds by then, we can change it at that time. Dr. Sandler said that he did not see any point in attempting to remove her lobes via a scope. She is just too small and her lungs are too over-inflated for that to work. So, instead of wasting the time that she's under, he was going to go straight for an incision. I was really glad to hear that it will be on her side, instead of her back. He said it would be about 4-5 inches long.

The anesthesiologist said he originally wanted to give her an epidural for the surgery, but with her spinal abnormalities, that was too risky. So they are going to do an arterial line.

ENT went first and about an hour after they took her, Dr. Precadio came out to tell us how that part went. And drumroll please... it went GREAT! I am SOOO excited. The ear tube went in just fine. So hopefully less ear infections there. He said he believes that she probably has all the workings of a middle ear on her left, even though there is no canal. So, we will have to be mindful if she gets a fever that it could be an ear infection in that ear - but of course you could never see it. Not a big deal when you can see an infection on the right - but now that she has a tube, she should have less infections on that side since it will be able to drain. He said IF (yes, that's an IF there) she has tracheomalacia, he didn't see any evidence of it during her resting time. Everything looked great in there. No evidence of aggressive suctioning, granulomas, or scar tissue. He said they have to use a rigid bronchoscope for her because of her jaw abnormality. And even though it is still severe, he said he thought it has improved from the last time he saw her. So, that's good.

Typically, they go to a pediatric sized trach after 15 pounds and this morning she weighed in at 15 pounds, 1 ounce! They had to put in a cuffed trach today because she's on a vent, but he said he believes she would be fine with either size. So now we are back to being hopeful that as soon as we can fit in her jaw reconstruction, maybe we can get that trach OUT!

Now for the most exciting part... he wants to do a passy-muir valve trial while she's in the hospital here!!! For those that don't know, a PMV is a one-way valve that goes on her trach. It allows air in, but doesn't allow it out. That forces the air when she exhales to go up past her vocal cords, allowing her to MAKE SOUND!!! Just thinking about it makes me cry. I have missed hearing her cry more than I can ever say. But, now that she's laughing, well, to hear her laugh would be indescribable. Makes me giddy just thinking about it.

So, all good news so far - which is so wonderful needless to say. Hopefully, the lung surgery will have the same positive results. It should be a few more hours now.Well, I'll update as I can. Thanks for thinking of us. So far your prayers are working so keep'em coming!!!

Monday, August 13, 2007

Tomorrow is the BIG day!

Well, it is 11pm and we are all ready to go. Tom wants me off the computer so I can get some sleep. But, I have to stop Harlie's feeds in one hour, so what's the use? Besides, not sleepy. Shocking, I know.

Well, we found out late this evening that her surgery is scheduled for 7:30am. So I am really happy about that. Although, we have to have her there by 5:45am. So, it will be an early start for us in the morning. Oh, by the way, Karen sent me the photos of Jameson and Harlie from our dinner the other week. So, I posted them. It was so funny, as soon as we sat them next to each other, they grabbed each other's hand. So, that was not staged. They were too cute checking each other out.

Oh, we did end up getting a room at the Ronald McDonald House, so that's good. Maybe that's a good sign of things to come...

Well, I will update as I can. Thank you for all your well wishes so far. I love to read your entries in the guestbook. I know you might not know what to say, but it is just nice to know we're in your thoughts. So, if you're afraid, please don't be. It really does help us, especially during times like these.

Thank you and talk to you soon!
Christy

PS, Tom and I got tickets to see Allison Krauss Wednesday night (I think at the coliseum). Of course, now we can't go. If you are interested in buying them (I think they are $70 each) please let me know. You can have 2 tickets or 4 (I think the couple that we were going with are willing to sell their 2 if that helps). Just click on contact me and it will send me an e-mail. Thanks!

Sunday, August 12, 2007

One more day...

Hi everybody,

I’m sorry I haven’t been writing lately. I’ve been keeping myself busy trying to make the time go by. But I must tell you that I loved hearing that so many of you have been wondering where I was. It is nice to know that my entries were missed. I was telling a friend tonight that writing in this journal has really helped me get through this past year. Knowing that you are counting on me to update you helps me find something to be positive about every day. So, thank you.

Well, Harlie had a rough week. We took her back to the pediatrician for an ear check to make sure that the new antibiotics were working. Her ear looked better, but I don’t think the meds are working on anything else that might be causing her coughing. I didn’t see any improvement, that’s for sure.

On Thursday night, our night nurse couldn’t come in and Harlie had a terrible night. She was up coughing most of the night. I think the longest she slept soundly was an hour and a half. On Friday she vomited a lot. And I mean, a lot. We also had another helmet fitting. I really can’t believe how rounded out the back of her head is getting. I just hope that this hospital stay doesn’t set us back on all the progress we’ve made.

Tom’s mom is coming up tomorrow (Monday). Her and Cal will stay here with Murphy while we’re in DC. Tomorrow I will get us all packed and ready to go. I will also find out what time we have to have Harlie checked in for surgery on Tuesday. It will be nice to know what time we are leaving – I guess just to have some plans set in place. Sometimes just knowing the smallest of details in a time of such uncertainty helps a little. Sounds hokey, but it’s true. We will also find out if a room is available for us at the Ronald McDonald House. Now that I've stayed there several times, I am much more comfortable. It is just kinda hard to get used to sharing space with strangers (like a bathroom).

Our social worker from DC called and told me that after the surgery, Harlie will go to CICU (cardiac intensive care unit) since she’s a cardiac patient. That made me feel much better. Plus, it just makes me feel better to know that we will get to talk to her cardiologists there about how this surgery fits in with her cardiac issues. I have a lot of mixed emotions about this surgery. On one hand, I am so glad that it is almost here and I am so hopeful that it will be the “cure” for her breathing issues. But I am also terrified. All her other hospital stays were all longer than originally anticipated and in every single one, we learned something new, that was bad. So, I think being scared about this one, which is pretty darn major, is just natural. Hopefully, this one will be the one to turn everything around for her, and for us. If it works, and helps her breathing, it will have a wonderful domino effect that will be life-altering.

Well, one more full day to go… Please keep her, and us, in your prayers. Now, I am going to try to go to sleep. Thank you for your support.

Take care,
Christy

Tuesday, August 7, 2007

One week to go!

So, we went to see Pulmonary again today. They took x-rays, and all looks normal for Harlie. As far as why her good lung is wheezy, not really sure what's going on there. One theory is that it could be caused by the same thing that caused her ear infection. Another theory is that since her right lung isn't functioning properly, the blood flow goes over to her left lung and overfills it. I am not sure how the surgery and lobectomy will affect this if this is the case. But I guess we will find out soon. Luckily, he agreed that there's really nothing that can be done to help her at this point - so no hospital. The only thing they could do is put her on a vent to give her a break from having to work so hard to breathe. But, a vent has it's negatives with Harlie. Her lungs cannot handle postive air pressure. So, I think the vent is only used if absolutely necessary.

The main thing I'm bummed about is her weight. When were at the same office just one week ago today, she weighed 14.13. Today, on the same scale she weiged 14.11! We were so happy about getting over 15 pounds - but that was on a different scale. Not to mention that it's a LOSS! So, we don't know what to think. I'll just hope that something was wrong with the scale or the nurse weighing her (haha).

Well, surgery is just one week from today. We just hope and pray that it gives us the results we want.

Take care,
Christy

Monday, August 6, 2007

Another ear infection.

Harlie went off antibiotics on Friday, the 3rd. By Sunday, I could tell she was getting sick again. So, we took her back to the doctor today. Of course, her pediatrician is ON VACATION! Summer is really proving to be difficult. Well, luckily I have spoken with one of his partners before, so she worked us in and Harlie has another ear infection. So, we're going to try a different antibiotic this time.

While examining Harlie, she seemed to be pretty concerned. She is very wheezy again. Plus, Harlie had a few of her coughing attacks while there. She said she was considering sending us to the hospital. Since this was our first visit with her, I asked her to please call one of her other docs to just make sure the hospital was the way to go. So, she called the pulmonary clinic and we have to go see them tomorrow. I think she just wants to give Harlie the best chance to be healthy as possible for going into surgery next week. Hopefully a couple doses of the new meds will help.

Oh, on a great note, Harlie weighed in today at 15 pounds and 2 ounces! So, we're really happy about that. Well, that's about it for tonight. I'll let you know how tomorrow's appointment goes.

Take care,
Christy

Sunday, August 5, 2007

Quick Update

The past few days have been pretty busy with just normal life stuff. Which is a nice change. We changed Murphy's daycare to part-time, so I keep him home 2 days a week. That really makes the week fly by. I want to spend some quality time with him before going to DC for Harlie's surgery. And Harlie takes up so much of my time, I think it is important for him and I to get out and have fun.

Harlie had another helmet appointment on Thursday. We are all really pleased with her progress there. We will have one more appointment next week before going to DC. I really hope there won't be a problem with her wearing it in the hospital. I'm sure they will want it off for surgery and the initial recovery, but hopefully after that, they will be okay with it. At this point, it will kill me to see her laying on her back without the helmet on. We've come so far, I don't want anything to stand in our way.

Oh, on Friday, we (Tom, Murphy, Harlie and I) went to Karen and Jamie's house for dinner. Their daughter is Jameson, who I've mentioned before. (Jameson is going through the same heart surgeries that Harlie is). It was so funny to see the two of them together. I was so mad I didn't bring my camera. But, we will get them together again and I'll get some pics and post them. Anyway, we had a great time. It was so nice to get out as a family. It happens so rarely that it always feels wonderful. So, thanks Karen and Jamie for having us over!

Well, today I worked at Mountcastle Homes for the first time since I went on bedrest last September. They needed someone to cover the office, so I went in. It was really weird, but nice, too. It was nice to relax for a few hours. haha

Well, it is late. I hope you are all well.

Take care,
Christy