Monday, July 19, 2010

Feeding clinic evaluation

Today was Jaxon's feeding clinic evaluation at Children's Hospital and it went pretty much as I expected. We met with a room of about 6 people who were reviewing his medical records and history while an occupational therapist was doing activities with Jax to give him a score (he scored 15 and 18 months in two areas - I don't remember what they were, but they grade him as a 22 month old ex-preemie). There was a nurse, psychologist, OT, dietician, speech therapist and a student in this part of the meeting.
They left the room and watched me feed Jax through a double sided mirror. It's such a weird feeling to be alone in a room and yet know there's people watching you and taking notes about everything you do. Jax was his typical self with throwing the cup and spoon and screaming to get down after a few bites. After we finished up the meeting with the large group we met with the feeding team's GI specialist after he did a quick conference with the group we had just met with. I was anxious to have a fresh perspective on Jax.

The GI specialist was very attentive and I could tell he actually read Jax's history prior to the meeting. He told me right away that he was clearing Jax for oral feeding, he didn't see any reason why he medically couldn't eat with the vomiting coming down. He told me he had two theories about Jax and what was "wrong" with him. He said that both theories have the same origin, which is Jax being the "donor twin" while in utero and got less blood flow due to Twin-to-Twin transfusion which happens to identical twins sharing a placenta and also the mono/mono condition with Jax having a knotted cord. He said that the donor twin almost always has a medical problem ranging from mild to severe if they make it to birth. 

He feels that Jax either had nerve damage to his GI tract thus causing a motility condition or Jax's GI system is/was so immature he's struggled with reflux and a touch of a motility issue which will get better as he gets older and stronger. He mentioned the frustration we must have to have such a sick child and yet all "normal results" on tests other than the motility study. He agreed with me that the motility study can be misleading since it measures nerve activity and Jax was sick through the test - he does not want Jax to have further motility testing unless symptoms were to show up. He agrees that he may have a high functioning form of a mitochondrial disease, but unless further symptoms present, we may just never know.
Basically, we may never fully get an answer as to what has all been wrong with Jax. He said that a GI virus or a flu can easily set him back months and hospitalize him, so we need to continue what we've been doing. I hate the little reminder always thrown in to never take sudden chronic vomiting lightly and always seek medical attention since it can turn deadly so quickly for little ones. Ugh, could've done without that public service announcement.

He should get better with time, and we're obviously hoping he will. The doctor does want to find a reason for the diarrhea. Jax's X-Ray from Friday was fine, he is not constipated, and we were able to get a sample right there in the office with the doctor to test for bacteria. So we'll see what happens with those results.

The doctor basically told me that we need to start completely fresh with Jax for feeding. He has such a negative response to eating, that we're starting over slow with just water and build from there. The doctor gave me the example that learning spanish and english as a toddler is relatively easy compared to learning a new language as an adult. It can be done, but it's a lot harder. Like teaching a toddler how and why they should eat by mouth. It can be done, but it's hard. It will be done.
The plan is for Jax to see the pediatric psychologist again in two weeks and she'll go through a feeding session with us and give us tools. From there we'll make a plan. Jax needs to work on getting his pump rate back up (we've dropped from 135 down to 85 since this last virus) so he gets his food in a shorter time period. Since it takes him 3 hrs to get 9 ounces of food, he's not off the pump long enough to even be hungry for feeding practice before his next round of formula through the pump again. We're also increasing his 27 calorie formula to 30 calorie to help the weight gain.

So I have a feeling they need to see a big improvement with that before we get too much intervention from them. So that's our plan. Work on getting him to accept food from the pump faster, go to the psychologist every 2 weeks and see what they think then. We have a follow up in early September with the whole team and I'd love to see a more aggressive approach on their part at that time if we get our homework done on this end. Time will tell... as usual...

Nana Jayne with the boys at Angela's wedding reception on Saturday.
Grandparents with Jason and the boys before a walk 
around the zoo grounds at the wedding reception.
Jason watching the boys literally LOUNGING in the kiddie pool!
Jax getting better at throwing Daddy the football.
Jax loves the kiddie pool way more than the lake!
Brady doesn't move much, but was very serious about playing with the dump truck in the water.
The boys do NOT like the sprinkler head turned on!


Laura said...

I like the GI doc! And reading what he told you was like deja vu for me, as for the most part this is exactly what they told me on the first day. Well, except no one seems to care that my guys vomit as much as Jax every day.

And I like that you are seeing the psych every two weeks. I think if you like their personality you will find that the psych is your newest BFF in the whole world. Seriously. I think I want to adopt ours as my new dad. I love him and he really validates what I and the boys are going through. He helps me accept that I am not losing my mind or making things up, that what the boys are doing is so damn subtle that you really have to be there in the hidden one way mirror room with the psych feeding the boys to see exactly how complex and slow the process of teaching a toddler to eat really is. Baby steps. I think that once the constipation issues for Jax are fixed you will see some freakishly fast improvement on his eating, and with that his talking. I knew they wouldn't turn you away and say you needed to come back later. And I know this whole process is going to be hard. You will find yourself sitting in a dark little closet of a room watching someone feeding Jax while he's screaming bloody murder because he doesn't want to do what they are asking of him. And it will be okay. Steak dinner girlfriend! Steak dinner is in our future.

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Kimberly said...

Annie, you and your family are an inspiration to me. Jax is always in my prayers and I know in my heart that if anyone can beat this it will be the two of you. Never lose faith. I love you guys.