GI Appointment

On Tuesday, September 1st, Harlie saw her GI doc. We've seen him a few times. The first time we saw him was shortly after her lobectomy in August of 2007. At that time, he recommended a nissen fundoplication (which she ended up getting in May 2008) and a pyloroplasty. Pyloroplasty is a surgical procedure performed to widen the opening between the stomach and the small intestine. The opening between the stomach and small intestine is called the pylorus. The pylorus, or pyloric canal, is a short canal primarily made of muscle. The canal can become too narrow, in some conditions. When the canal becomes too narrow, food and liquids may not be able to pass. This can result in symptoms such as nausea and vomiting.

At the time of our fist visit, I said no to both procedures and went home to try different foods, meds, etc. to stop the vomiting. But, nothing worked.

Now she has a nissen (not working the way it should) and we're back in the same position we were in during the spring of 2008. She needs another jaw reconstruction, and we have to stop the vomiting to do it. Now that we've done the nissen, we don't have a lot of options.

So, back to the GI doc to see if there are any new options. He again mentioned the pyloroplasty. To which I said "no" again. If they could tell me that she has a narrowing that warrants that drastic of a procedure, then fine. But they cannot tell me that. And in her case, I just know that it would cause more problems than it would fix. So, therefore, it is really not an option.

So, after making him think a while about it, he came up with a gj-tube. Food would no longer go into her stomach, it would go straight into her jejunum (small intestines). The theory is that you can't throw up if there's nothing in your stomach.

After her lobectomy in August of 2007, while still in the hospital, they tried an nj-tube (which is a tube that goes into your nose and all the way to the jejunum. They didn't want to change her g-tube until they tested the theory first. But the nj-tube is not as secure - since she was almost one and could pull on it. Especially since she wasn't used to a tube taped to her face. So, it didn't work. She still threw up stomach acid. Of course, that was before she was on Prevacid, so maybe that would help stop that.

There are definitely some negatives:

she would have to go back to 24 hour continuous feeds - YUCK!
she would have to go back to wearing the feeding backpack all the time
she would have to go back to the formula that we just worked for MONTHS to get her off of (since it is already so broken down, it is better since her stomach can't help her intestines break it down)
It is going backwards in the sense that her stomach is not learning how to fill up and then empty, like normal

But there are definitely some positives:

it is only temporary (versus a surgical procedure like making the nissen tighter or a pyloroplasty)
it is not invasive (like a surgery)
it might just be the answer to stopping the vomiting long enough to get her jaw reconstruction done

So, I really think the gj-tube will be the best way to go. And I suppose we could get it enough before her surgery to give it some time to show us if it will work or not. Plus, I don't think we really have any other options at this point.

I told her GI doc that if it weren't for this jaw surgery, I would live with the vomiting as it is - just fine. Seriously. I hate it. But it's all we've ever known with her. And I'm sure she'll outgrow it. And he just looked at me. I said, "She WILL outgrow it, right"? And he said that he didn't know. Which, I guess kinda makes sense. It's hard to predict what's going to happen if you don't even know what's causing it in the first place. But, I still believe she'll outgrow it. I have to.

I also asked him about her Reglan, the medicine that she's been taking to help increase her motility (help move the food through faster). I don't know if you've seen the health alerts about it. But they're saying that it should be used for a short time only. She's been on it for two and a half years! So, even though it might be safe for her - I just see no reason for her to take if it does NOT help her. And with her vomiting all the time, is it even helping at all? He said he didn't think it was helping her. Certainly not enough to risk it in her case. So, he told me to take her off. And so far, I notice no difference. Other than it's one less medication to give her (which ROCKS). And that one had to be given every six hours. I do not miss it. And I don't think she does, either.

So, we wait to talk to this other plastic surgeon to get his opinion and then we'll make a decision. That will be nice. Just to decide and start moving in some direction again.

Okay, enough GI and on to something else...

Take care,
Christy

Upper GI

So, Harlie's Upper GI went well I suppose. She was scared but still cooperative.

They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.



She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.





Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.

Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.

Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.

Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!

But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.

I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.

For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!

Orthopaedic Appointment

On Thursday we had Harlie's yearly checkup with her orthopaedic surgeon here in Richmond. I have to admit that I wasn't prepared for what he said. I told him that I thought Harlie's spinal problem has gotten worse. At least I can see it is more prominent than it was. Here's a couple of pics so you can see what I'm talking about.





Even though it is definitely more noticeable, since she appears to be walking "fine" I haven't really been that concerned. They took an x-ray and after he took a look at it and came in and examined her he asked me what was going on with her, how's her breathing, etc. I gave him a brief rundown of this year's coming attractions and he thought for a minute. Then he said that it isn't urgent, but it is no longer a question of IF she has to have spinal surgery, it is a question of WHEN. He wants her to have an MRI to gather some more information and make sure there are no surprises prior to surgery. He ordered the MRI and they called me the very next day to give me the date - April 2nd.

Unfortunately I made the bad decision to take all my kids to the appointment. I should have called my mom for help. And to be honest, that was my plan originally, but things have been so hectic around here that I never made time for the 2 minute phone call. Dumb, I know. So, when it came time to get ready to go, we just packed them all up and Brandy and I went with all 3. I packed Murphy a backpack with books, a marker, a Leapster, a snack, a drink and yet he STILL got bored!

Anyway, because it was a mad house and I was a little flustered over Murphy (he can be VERY distracting) and since I was so surprised at what he said, I didn't think to ask some pretty important questions. Like, if you want her to have an MRI soon, then when are you thinking you need to do the surgery? Certainly he wouldn't want the information to be that old when he actually does the surgery. So he must be thinking sometime after her heart surgery (at least sometime this year) and that's just plain disappointing. And, what will happen if he doesn't do the surgery? What are we trying to avoid from happening? I'll deal with the risks from the surgery later (I think a little common sense comes to play here). I know that he wants to completely remove the hemivertebra (congenital malformation of the spine in which only half of a vertebral body develops) that's causing the scoliosis (it is acting like a wedge between normal vertebrae) and then fuse the surrounding vertebrae together. I have no information other than that.

Another big issue we will have to deal with is if we want her to have surgery here (in Richmond) or not. I really like her doctor (a surgeon). However, he operates at St. Mary's and quite frankly, I just don't feel comfortable with her having surgery (especially one of this magnitude) there. How many Harlie's do you think they operate on? And I don't mean the surgeon necessarily, I'm talking about the anesthesiologists. And then what would her care be like afterwards? St. Mary's isn't exactly known for their PICU. Ugh. It's during times like these that I feel very overwhelmed with her medical issues.


So in a nutshell, I'm very disappointed. I thought that this surgery would happen YEARS from now. And I know that this surgery is a big one and on top of her heart surgery, I just wonder how she'll handle it all (or us, for that matter). In all likelihood she will be stronger than the rest of us.

Well tomorrow Murphy has his first day at a new school! A friend and fellow parent of a child with a CHD recently opened a Montessori school. After learning about the philosophy behind the name I am SO excited! I took him there to meet the teacher on Friday and get the full tour. He loved it and when it was time to go he did NOT want to leave. Although it was a pain in the butt at the time, I am very glad that he liked it that much.

Well, it is late and we have a VERY busy week. Tomorrow I have a doctor's appointment and Harlie has a pre-op appointment at the pediatrician's because on Tuesday she is finally getting another tube put in her ear in DC. Then on Wednesday Harlie has speech therapy and an upper GI at MCV to check on her Nissen. She is back to vomiting every day again (insert sad face here). It started out slow back in August and has progressed to sometimes several times a day. Bummer. Then on Thursday she has speech therapy and then gets her monthly RSV shot and Cooper has a well check. And on Friday Harlie has both speech and physical therapies. Whew!

Oh! But before I go... HERE WE GO STEELERS, HERE WE GO! Tom and I had a date night and we both went to the bar to watch the game with the club. If you're a Steeler fan, it was a great game!

Take care!
Christy

Another first...

I hope you all had a nice Memorial Day weekend. Sorry I haven’t updated in a few days. Things have been fairly boring around here (which is wonderful) so there really hasn’t been much for me to say.

Today we had our follow-up appointment with Dr. Lanning (the surgeon who did Harlie’s nissen). That went well. Nothing really to do but check out the incisions (which look great) and see if I had any questions or concerns (which I didn’t). So far, so good. It’s been two weeks now with no vomiting and life is SO much better! She stays in one outfit all day long and we go through WAY less bibs. Laundry is a lot less, which is also great, of course. And getting to an appointment now is way less stressful. It used to be that we were walking out the door and she would throw up all over, and we’d have to stop and change her clothes. Now we just get up and go.

On our way to our appointment at MCV, we stopped at Babies R Us to get some gates for the stairs. Yes, Harlie is a sneaky one and can, in fact, climb stairs all by herself now.

It was the first time I let her walk in a store with her walker. I am not ready to do that with just me and Harlie. It definitely takes two adults to go somewhere with her in the walker. No doubt Harlie will tire out and refuse to walk. There is no way I can carry the diaper bag, suction machine (weighs 10 pounds), Harlie (weighs 21 pounds) and the walker by myself. So, since I had Brandy, and I knew I what I was getting, we thought we’d give it a try.

I think it went great. However, following us was not her priority. She really wanted to explore and see things that she wanted to see. I am hoping that she enjoyed it enough that she’ll actually want to walk more. She had a smile on her face the whole time.

Tomorrow we have speech therapy, and that’s about it. For the next two days, I’ll be running around getting some last minute errands run before next week. Harlie’s surgery is now just 6 days away!!! I can’t believe how fast it is approaching. I am very ready for it to be behind us.

Well, that’s it for tonight. I hope you are all well.

Take care,
Christy

Oh boy, are we in trouble...

So, we got back from our loooong day in Norfolk for Harlie’s pre-op visit with her plastic surgeon and I’m going through the mail (I dropped Tom off at work on my way home). Murphy and Harlie are playing nicely in the playroom. I’ve tuned them out (as parents of multiple kids know, it’s a matter of survival). When, “Come on Harlie, I KNOW you can do it”! somehow makes it to my brain. I look up and think, hmmm…. I wonder what he’s challenging her with this time. Then I hear, “Take another step Harlie”! GULP!!!! I jump up and run to the stairs and yes, he is coaching her up the stairs and she is on the third step from the bottom. AHHH!!! AND she had her backpack on with a full feeding in it! It must weigh 5 pounds – which on a 20 pound little girl is a lot! Whew! That was a close one!

After I scolded Murphy and explained that Harlie cannot go up the stairs without one of us, I let her go on up. She went the entire way with no help from me! We just did this exercise on Monday during physical therapy. What a long way she has come! She used to get too tired after just a few steps. And we couldn’t do it on that set because they aren’t carpeted. She would put her head down on the steps because she would get so tired. This time she looked so different. She is so much stronger. Every day I notice a difference. It truly is amazing to watch.

Anyway, Harlie’s nissen surgery is tomorrow. Dare I dream that she has thrown up for the last time in a long time???? The past few days have been especially awful. And now that she’s on the move, it gets everywhere. Oh, so many things I am hopeful for…We have to have her at MCV at 5:30 AM!!! So, I’m signing off. I will use our waiting time during her surgery to update you on our day’s events in Norfolk today.

Wish us luck that all goes as planned tomorrow and that it is a successful surgery!
Take care,
Christy

My Rant

So, I got a call this morning from Dr. Lanning, Harlie’s surgeon who is doing her nissen. He said that there is a conflict with her surgery date of next Monday (May 5th) and that they had to move it to May 14th!!!! WHAT?!?!?

He said that after we left on Monday, he spoke extensively with the anesthesiologists. Because of the risk of the CO2 in her abdomen, time is of the essence. Meaning that he needs to get in there, do it and get out as soon as possible. So, he needs one of his partners to assist him in her case. He knew that before and had his partner scheduled for the procedure this past Monday, but in all the craziness at the hospital, he did not realize that his partner has a conflict with next Monday and is not available until May 14th. He said that they both moved patients around to get Harlie in as soon as possible, but it was the best they could do.

Although I understand that, and want only the best situation for Harlie, I am still MAD! I just wish everything didn’t have to be so incredibly complicated for her – and us! The week of the 14th is not good for so many reasons. And since you asked…

1. It leaves NO room for error. The surgery will have to be done that day – period. She better not even THINK about getting sick.

2. I am not comfortable with having only 2 weeks between this surgery and her jaw reconstruction. The surgeon said it was fine, but I know Harlie and I know how things can get. If they end up having to do the open incision it could mean up to 6 days in the hospital! That only leaves her with one week at home before a MAJOR surgery. Frustrating.

3. We have an appointment to see Dr. Magee (her plastic surgeon) on May 13th – the day before her nissen surgery. I wanted to go down there with her all ready for surgery, us having completed everything we needed to prior to her surgery. I don’t want to give Dr. Magee any excuse to not do the jaw reconstruction as scheduled. (And no, the jaw reconstruction could not be pushed back easily – his whole plan is to do it during a specific physician’s program which is happening that week).

4. Early the morning after her nissen surgery, Tom and I have our 20 week ultrasound with the perinatologist. Considering it is the morning after her surgery, I do not want to be away from her bedside.

5. My friend, Jennifer, is a PICU nurse there and next Monday she was planning on working that night, so I knew I could go home, knowing Harlie was very well cared for. With the new date, Jennifer can’t work that night. She is working on the scheduling for the nurses that week, so she will not be on the floor as a nurse. Luckily, she said she could be there the morning after the surgery so she told me not to reschedule the ultrasound. I just feel better when I know the nurse that’s taking care of her, and I know if Jennifer is there, she’ll make sure she’s taken care of.

6. Tom has a project starting the following week, and him taking off all that time (to go to Norfolk on Tuesday, surgery on Wednesday, and ultrasound on Thursday) is just way inconvenient. Plus, that meant that rescheduling our ultrasound wasn’t really an option anyway (because he needs to be at the site the next week)!

7. Me and a friend are planning a baby shower for a friend and it is the weekend after her surgery, which if Harlie is still in the hospital will be very inconvenient, too! Luckily, I have family, and Brandy said she would volunteer some hours to help me out so I can do what I need to do for the shower. Thank goodness for good support!

UGH! Is your head spinning yet? People that think that changing ONE appointment is no big deal are VERY wrong. Oh, not to mention that we have 3 therapists that come to our house for a total of 4 appointments each week and clearly those appointments have to be shifted as well (again!).

I do have to say that the surgeon called me himself, was very nice and apologetic and seemed to start to understand how it snowballed other appointments as we talked about the new date. Please know that I am not mad at him. I am just frustrated at how incredibly difficult some aspects of our life, really is. I think that is really why I feel the need to write about it in this journal. There is a part of me that thinks if someone really “gets it”, then I won’t feel so alone in this journey. Caring for Harlie really is more than a full-time job. On top of just the physical care, managing her appointments and supplies, etc. is a job in itself!

I was on the phone the entire morning. I called Dr. Magee’s office to make sure that he is fine with the 2 week recovery period between her surgeries. He is. I also wanted to let them know that we should probably meet with the anesthesia team prior to her jaw surgery. This played a major part of our current scheduling nightmare. Dr. Lanning had spoken with anesthesia and let them know about Harlie and her complications. He even asked them if they wanted to meet her prior to the surgery date (they said that wasn’t necessary). Then we get down there, they meet her, and read her medical summary (which I put together for her docs and they all love it) and speak to us at length. And they’re like, whoa! Then they ended up speaking with Dr. Lanning after we left about all their many concerns. Which made me contact her cardiologist to ask him more about this because if it really is that incredibly risky, then I have to wonder if we should forget about doing it laproscopically all together and just go straight to the open incision (which would mean she would have a scar running from her neck to her belly button). I haven’t heard back from him yet. And while I know she will survive, her scars are less than appealing on a girl. One day, when she’s an enjoyable, fun-loving teenager (aren’t they all?) she might not love the scars so much. And to anyone who tells me, “oh, she’ll be just fine, they aren’t THAT bad” I want to say, “Give me your phone number and when she’s 13, and upset, I’ll have her call YOU to talk about it”.

The sad thing is that none of this really matters because it is what it is. I can’t change it. Despite the fact that we started this process months ago, it will come down to the wire.

Whew! Talk about venting! Sorry about that. I just feel like I have been SOOOO flexible, for SOOOO long, that I am just getting tired of it. I long for the day when appointments aren’t so close together, when I can be more picky about them, and when things are just plain more normal for my daughter and my family.

I’ll shut up now. Finally.

Take care,
Christy

Nissen surgery, NOT.

Well, unfortunately, things didn’t work out quite the way we wanted it to today. We got to MCV and went through the normal pre-op stuff.

Long story short:

The DaVinci robot that is used for this surgery was broken. Of course, they have to wait for the company’s rep to come out and troubleshoot the problem. Turns out they need to order a part. So, the surgeon came to let us know our options.

1. Cancel the surgery and reschedule for next Monday (he only does surgery on Mondays). The chances of saving her current g-tube site are about 80% with the DaVinci robot.

2. Proceed with the procedure without the robot. He would still try to do it laproscopically. The chances of saving her current g-tube site are about 65% without the DaVinci robot.

We chose option 1. To me, saving her g-tube site is a big deal. She is already covered in scars and one day it is going to matter to her.

After spending a lot of time with the anesthesiologists, we learned some new things about this procedure. In order to do the surgery, the surgeon has to fill her abdomen up with CO2 (carbon dioxide). This might adversely affect her circulation, due to her heart issues. If they get in there and doing it that way starts to affect her in a negative way, they will have to stop and go to the open incision procedure. Clearly, we don’t want this to happen for many reasons.

So, even though we might end up not being able to use the robot anyway, we decided that starting with the best chances was a better way to go. The surgeon checked his schedule for next Monday and bumped everyone back so Harlie could be first.

They all felt really bad about having us go through everything and get all geared up and ready for this surgery – for nothing. But, we told them we would rather it be right and at least this time we are still in the same city – so it really wasn’t THAT big of a deal. Last time we went ready for surgery and it didn’t happen it was up in DC and we drove up at 4pm and left to come home at midnight. So, in comparison, it’s not a big deal. Just another week of vomiting when I had hoped we were finally done with it for good. Oh well. Patience. Lots and lots of patience.

Thanks for all your well wishes posted on the guestbook (and e-mails and phone calls). I really appreciate it. We’ll just try it all again – same time next week!!! Ugh. Oh! And Happy Birthday, Tom!

Take care,
Christy

Quick Update

Sorry I haven't been so good at updating the website recently. Just been trying to get back in the swing of things. We had PT on Wednesday and will have it again this morning. We had OT yesterday. That went okay, all things considered. No swallowing yet, but only trying to get her used to food in her mouth and making it fun for her for now. No wild and crazy goals yet. She has no notion of hunger, food, etc., so there's no incentive for her. We just have to have a LOT of patience with the oral trials.

I'm still thinking over what the GI doc said. He is recommending a nissen fundoplication (where they take part of the stomach and wrap it around the esophagus to make it "impossible" for her to throw up). Sometimes they come unwrapped, soon after surgery, or years later. He's also recommending a pyloroplasty, which is when they widen the opening from the stomach to the intestines so the food empties faster.

I'm still mulling all this info over. I have a few issues. One is we don't have proof that she's aspirating. And that would be the main reason for doing these procedures. Fear of aspiration due to reflux, need to keep her lungs healthy, etc. Plus, she is so close to being upright most of the day. And that will really help her keep her food down I think. Since babies typically outgrow reflux, if we could wait, we could avoid these surgeries.

But, unfortunately, it's not a simple decision. There are pros and cons, of course. The more food she keeps down, the faster she can gain weight and grow. Plus, the more comfortable she could be. But, they are not surgeries to be taken lightly, and they certainly have their drawbacks for me. It just makes me nervous that if she eats something bad later in life that her body wouldn't be able to get rid of it quickly. Blah, blah, blah.

So, a funny Murphy story: Tom went to go wake him up this morning. Murphy was wearing his Superman pjs. Tom started tapping his bum, saying, "Superman, Superman..." And without stirring, Murphy said, "Daddy, Superman's sleeping". I love his sense of humor.

Well, that's it for now. I hope you are all well!

Take care,
Christy