Still tube free, and staying that way!

Thursday, June 10
Today was our CAIR appointment here in Boston. Faith and I have been here since Tuesday night, and now we are done with appointments for this trip. We had appointments with Dr. Rodriguez (motility specialist who did Faith's endoscopy and antro-duodenal manometry study back in March/April of last year) and Dr. Puder yesterday. They were very impressed with her progress.
Dr. Rodriguez actually remembered us (or pretended very well that he did) and he explained that unfortunately it's pretty common with a gastroschisis kid for them to have motility problems pretty much forever, and for the gut to completely shut down when they get sick for at least the first few years. He anticipates that she will gradually get better about that, and most likely when she is older it will be more like IBS symptoms, rather than complete gut shut-down. He wasn't too happy with her growth though, and expressed concerns that one of the things that contributes to poor intestinal health is poor nutrition/malnutrition... but he pretty much left it up to whatever CAIR wanted to do, just leaving us with a strong suggestion to get Faith onto a nutritional/formula-type drink that she would actually drink.
Dr. Puder pretty much agreed. He didn't have much to say (there's really not much to say with how well she's doing), but was very curious about her development, as usual. She showed off some tricks for him and Danielle and Alexis, and gave Danielle hugs, but recognized that Dr. Puder is, in fact, a doctor, and therefore could not be friendly to him. She has a real issue with anyone who is easily identifiable as a medical professional. Danielle and Alexis wear normal "street" clothes, so I don't think she knows who they are... but anyone wearing a white jacket or scrubs is pretty much the most evil person in the world, as far as Faith is concerned. They ordered labs, just a basic CBC, LFT's, and a vitamin panel. It'll be a couple of weeks until the vitamin labs come back, but I will be interested in those results.
Getting her labs drawn was an adventure, as usual. She has very little peripheral access, and what access she does have is just little tiny veins that blow easily. They had to stick her in each arm, and each stick involved actually sticking her, and then digging the needle all around inside her arm to actually get the vein. Unfortunately, Faith is really observant, and she knows what is coming as soon as the phlebotomist pulls out the little blue rubberband thing, and freaks out accordingly. It took two phlebotomists and both of Faith's arms to get all the blood they needed for the labs, and an assistant and me to hold her still enough for them to actually draw the blood. I would wistfully remember the ease of having a central line to draw blood from, except that to prevent infection we didn't actually draw from it... and life without a central line is infinitely easier!
We (Faith and I) met a new Omegaven family for lunch today before our CAIR appt. They are from NY, and little Bradley has Microvillus Inclusion Disorder, just like Sam and Bo. Bradley is a little cutie, and it was great to meet them! I enjoy being able to talk to new families and help them or answer questions, just like people did for us a year ago when we were in those shoes.
CAIR was a long appointment, as usual... our appointment was at 1:30, but we were there early, since we walked over with Bradley and his family and their appointment was at 1:00. We got taken back to a room right away, and proceeded to sit there for a LONG time waiting for someone to come in. Faith played on the rolling doctor's chair, practiced walking while holding my hands, and made friends with Jacob, another little Omegaven graduate we know from an online support group. She also talked and practiced signs with me, and then finally the nutritionist came in and started quizzing me on Faith's eating and what's gone on since September.
The nutritionist wasn't all too happy with Faith's growth... I explained that she was sick back in March and had lost a pound and was still sort of recovering from that, and that we had stopped g-tube feeds but that Faith was only drinking water. She left to go get us some flavored drink samples for Faith, and Julie (the nurse) came in and asked about how everything else has been. She also wasn't that happy with Faith's growth.
Apparently Faith dropped a few curves on the growth chart since we were last here. The nutritionist pretty much wanted to put Faith back on her tube feeds... I said I didn't want to do that until after we tried having her drink the Pediasure they brought us. She tried it right there in the room, and really seemed to like it- she has almost had an entire bottle already! She only has to drink 1 1/2 bottles of it a day to equal the amount of formula she was getting through her tube overnight, so I think we will easily accomplish that (we'll probably give her 2 bottles a day). I am optimistic that she will grow just fine on this...
We waited a little more, a few other people popped in to say hi and talk about how big she is and how awesome she looks, and then a GI doc I had never met came in with Julie to wrap things up. Julie mentioned that the nutritionist thinks we should consider restarting the tube feeds, but that it would be ok to try the Pediasure first and just watch her weight closely. Faith has her 18 month checkup with our family doctor next week, so we will have her weighed there and report back to Boston.
At the end, Alexis came by, and I was able to tell her what I really thought about it all. I'm not sure if I've ever really clarified that the CAIR appointments are sort of just a technicality, honestly I'm not entirely sure why we even still go to them, other than to get the input of the nutritionist... But, I have trust issues with doctors who *aren't* Dr. Puder (or our family doc), and actually the CAIR doctors have told us stuff before that was contradictory to what Dr. Puder had told us, so I've never actually really followed with the CAIR doctors have told us. From the start, I've sort of smiled and nodded my way through CAIR appointments, listening to whatever they said, but knowing all along that I would just keep doing whatever I was doing, or whatever Dr. Puder and I had already talked about doing.
I think am kind of a "naughty" sick kid parent, because I am not afraid to do whatever I think is best, without clearing it with the doctors first... but you know what, it's worked! I got Faith off all of her meds, I got her off TPN, and now I've gotten her off her tube feeds, without much input from the doctors at all... usually I've just told them what we've done after the fact...
So basically, I explained to Alexis that they had mentioned possibly having to re-start tube feeds, but that I WON'T be doing that, unless it's clear that having her eat and drink 100% isn't going to work. I'm not going to only give her a week to prove herself, either. We have a scale of our own, so I will weigh her once a week if I need to. But I don't really think I need to weigh her every week to know that she's doing ok! So what if she's below the 3rd percentile? So was I as a baby, and so was her big brother.
Anyway, I forgot to bring up her apparent bacterial overgrowth, so we didn't discuss any solutions for that... We briefly talked about it yesterday, but didn't come to a decision... I would like to try probiotics and see if they help take care of it.
We didn't really talk about taking her tube out... the general consensus is that it's safer to leave it in, even if we're not using it, than it is to take it out and have to put a new one in the next time she gets sick and stops tolerating feeds. We will be back in Boston for our next checkup in December, and we will probably discuss taking her tube out a little more seriously at that point.
Now that we are done with appointments, we have a couple of days to just have a little fun... I think we will go out shopping tomorrow (I need some new summer shoes) and then we will be meeting Blaise and Ellie's families for dinner. Not sure what the plan will be for Saturday... and then Sunday is our fundraising walk, and Monday we are headed home!
Hopefully somewhere in there, we will meet another new gastroschisis/short gut family, who should be getting to Boston to put their little girl Genevieve on Omegaven in the next couple of days. This family's story is very familiar to me, as it is really close to what we experienced! Honestly, one of Faith's doctors in Denver actually told me that he was surprised that she never got NEC, he said of all the complications that happened, that would have been the one they would have actually expected... The weird thing about this family is that I actually was told about them by one of my "normal" friends at home, who has nothing to do with gastroschisis or short gut!
I love it that I have been able to use our experiences (which seem SO negative) to help other families going through the same type of difficulties! I really LOVE the bible verse from 2 Corinthians at the top of the blog, and the blessing of helping these families makes me feel like we are living out God's will, and helps me to realize the big reason for it all!