C had her appointment with the GI doctor yesterday. This is appointment number 2 in the ongoing saga to figure out a way to get C to eat and gain weight.
We chose to go back to the third of the five GI doctors we have seen. Breaking from our typical fashion, we chose the GI who is the youngest of the 5 we have seen. Generally Kevin and I pick the older doctors because we feel more comfortable. I know, just because they are older does not mean they are better. However, our experience so far has been the more time the doctor has been, you know, an actual doctor, the better. Of course there are always a few exceptions. One exception being C's total rock star surgeon. Adding to my reserve in picking the younger GI doctor is that I learned from the first time I saw him that he went to the same high school as me. Although we were not in school at the same time, he is close enough to me in age to make me feel weird. Don't know why, maybe I am just get old.
Anyway, the GI doctor is actually good. Both Kevin and I are happy with his thoroughness and his actual listening and talking to us. We now have a new plan to proceed with.
1. We are giving C Miralax. This is a stool softener/laxative to help her with her seemingly endless, horrid constipation. The GI thinks C has associated lots of pain with trying to have a bm and now will not go because it hurts and the more she does not go the more it hurts. A total vicious cycle. Hope that with the laxative she can get some relief and learn that it is ok and not terribly painful to have a bm. Here's the catch...there is always a catch... the laxative powder has to be mixed at the rate of 1tsp per 1ounce fluid. For a normal baby not so bad...for a baby who flat out refuses to suck off a bottle or a sippy cup and has a huge problem taking a lot of fluid volume in the first place, this shall prove to be near impossible. She is prescribed to take 2tsps of powder mixed in 2ounces of fluid twice a day for a total of 4 additional ounces of fluid. If we could figure out how to get C to drink 4 ounces of fluid off a bottle or sippy we would not be seeing the GI doctor at all because C would be intaking enough volume and therefore gaining weight like she should be. We are trying to figure out the best way to get this in her.
2. The GI did suggest upping her Prevacid to twice a day which would mean giving her a full adult dose. Not too sure about that. And we are following the advice of the GI at Shands who told us to make only one change at a time. So, we are trying the Miralax first. The reflux continues to be an issue of does she have it or not...because she vomits and exhibits other classic signs the docs all learn towards yes but C continues to baffle because she shows no internal signs of reflux based on all the GI tests we have done. Gee. C baffling. Tell us something new.
3. The GI doc did a brief rectal exam..yes it looks as unpleasant as it sounds...and he did say that everything there appears normal. He does want us to do a sacral ultrasound because C does have a swirley dimple thingy right at the top of her hiney. He does not really think there is an issue but just wants to check to make sure her spinal cord is not all screwy down there.
4. And the big one...C is being scheduled to have a G feeding tube placed. If there is an upside to this here it is...the tube will be placed endoscopically by the GI doctor. Although C will have to undergo anesthesia again she will not have to have another abdominal surgery. The GI doctor will insert the scope down C's throat to get to her tummy. When he sees a good spot for the tube he will insert the tube through the skin in the tummy. He explained it as similar to an earring. The tube will loop through the skin into the stomach. This is called a peg button. I will stop here as trying to explain the whole thing is just confusing. Suffice it to say that this is the easier way to have a tube placed. Of course this is dependent on cardiology saying okay to this type of tube and tube placement. Originally C's cardiologist wanted to have the surgically implanted tube and also a Nissen wrap fundoplication. I am so not on board with the wrap. Lets just say it is like tying the end of the balloon up so nothing can get out...C would not be able to vomit. I have read all kinds of horrible side effects from this and do not want to have this done to C. The cardiologist recommended it because of the vomiting. He does not want to risk her aspirating. If she aspirates, she dies. Aspiration is breathing fluid/food into the lungs. The thing is, not one doctor or therapist (and we have seen and talked to many in the realm of the GI world) thinks C has any risk towards aspiration. In addition, because C shows no damage from the reflux and there is still debate on whether she actually has it or not, the GI doctor does not recommend the wrap due to reflux. C's pediatrician is also against doing the wrap. Now we just have to see what her cardiologist says tomorrow. If GI is able to get clearance from C's cardiologist and the cardiologist is okay with her doing this so close to her already scheduled heart cath on May 17, C could be going to the hospital this Friday, May 14 for the placement of the feeding tube. It will be an admit with an unknown time for discharge. I will keep everyone updated on how the schedule works out and when C will be going to the hospital for the cath and the feeding tube.
This email is already way longer than I wanted. I have another whole email I could write about how I feel about all this but I am pretty sure I will spare all of you and just put that up on my blog :) Needless to say I am very unhappy about having to miss out on the wonderful birthday festivities my husband had planned for me this weekend and I am very sad that after almost 9 months of my little HLHS baby being one of the few to not need a feeding tube we are getting one after all. However, I am VERY happy that C's body will finally be getting what it needs to grow and thrive. And that is what this is all about.
Thanks again for all the prayers for C. They are working. And for all who do not know yet, C has her very first tooth. She has the cutest, heart melting, snaggle tooth smile now.