Sorry for the delay in posting for the past few days. From day to day, not a lot is changing, so just assume that “no news is good news” if we happen to not post for a day or two.
Adela is feeling better today. She has been progressively more peppy and happy over the past few days. We’ve been getting her out of the room for breakfast or lunch the past few days so she can get some fresh air. There’s a nice patio area between the Women’s Hospital and the Cancer Hospital (where Starbucks is located) that we can all sit at and have a nice outdoor meal. Grandaddy came back to visit yesterday and he (along with some scheming from Mommy and Nana) brought Adela her own wagon to carry her around the hospital in. There is one for the floor we’re on, but it tends to disappear whenever we actually want to use it, so this way, we can go whenever we want to. We also decorated her room yesterday for Halloween. Halloween is her favorite holiday and she’s been looking forward to it for months. After we found out that we’d be here for a while, I ran home and brought some of our decorations and Adela made some of her own. Now her room is ready for October 31st.
As for a medical update, we’re off two of the antibiotics (the cipro and vancomycin they started last weekend when she had a fever). We’ve also started treatment with steroids for the intestinal inflammation. We thought we might be able to avoid it since she was making some progress, however they’d like to see her progress a little faster and the steroids should help things along. The amount of formula she gets every day through her g-tube has been increased, too. So, between the TPN, Elecare, and steroids, we should see continued improvement.
I figured I’d elaborate on Mommy’s post about our “Care Conference” from Tuesday. It was as much a chance for the core team of doctors (that we see every day) and the specialists to get together as it was a chance for us to ask questions. I was glad we had it since there were a few instances where the doctors came up with a few ideas for more tests to track down the problem. We unfortunately, didn’t get an answer to the million-dollar question of “What caused this to happen to start with and what is it?” I understand that the doctors can’t give us an answer if they don’t know it themselves, however it is disappointing. So, here are some of the questions we asked them:
How long will she need to be on TPN and keep the Broviac catheter (the central line)?
This question was the one that had the most disappointing response, which is why I’m including it first to get it out of the way. The immunologist/infectious disease doctor that has been the most involved with both her nutritional and immunological progress gave a ballpark estimate of six more weeks being needed to get her to a nutritionally sufficient state. Of course, that can (and I’m sure will) change as other factors change, but we went ahead and moved in (brought a few more things from home) in anticipation of living at the hospital for another month and a half.
Will she need another flexible sigmoidoscopy (the scope procedure) to determine if there’s still inflammation or damage to her colon?
It depends. If suddenly Adela is in robust health and clearly not suffering from this problem anymore, there’s probably no need to do one. If she continues her slow and steady recovery, at some point they may want to do one. So, basically, it depends on Adela’s progress.
How much longer will she need to be on the antibiotics?
The two that she was on for last weekend’s fever have been discontinued since her culture came back negative. There are three still left. Those we’ll take on a day-by-day basis — the immunologist would like to leave them on as long as we can until Adela gets “nutritionally sufficient” enough that if she caught something, it wouldn’t leave us in a bad situation.
Have we definitely ruled out a food-related cause?
The doctors have ruled out that the sole problem is food-related. When they looked at the biopsy results, they didn’t find any eosinophils (a type of white blood cell related to, among other things, allergies), which would have indicated an allergic reaction or sensitivity to food. They did admit, however, that food could be related, it’s just that there’s another bigger problem that’s masking it. We won’t know until she’s a bit healthier.
When can we start adding in other foods to her diet?
Not for a while. They’d like to improve her nutritional state in a way that has the least chance of failure. TPN and Elecare are the preferred methods. They’re letting us offer her ham partially to pacify her, partially to pacify us, and partially because most of them think it won’t do any harm (since it’s just protein and fat, it should be digested before it reaches her colon). To add in other solid foods would introduce more variables and they’re trying to keep things as basic as possible to avoid accidentally introducing a food that might have contributed to this (again, even though they don’t think it was just food or not food at all).
Does Adela have a weakened immune system?
I was curious about this in the context of “When we send her to school, will she be more likely to come home every other day sick?” Thankfully, the answer was “no”. Adela’s immune system fights off infections just fine, so she’s no more likely to get sick than any other child…at least not because of a weakened immune system. Right now, her immune system is a little weak just because of her nutritional deficiencies, but that shouldn’t be the case long term.
What genetic conditions have been ruled out? What genetic/metabolic tests are left to do? How much longer until we hear back with the results from the ones already ordered?
Genetics is a very complicated field (as I’m learning by reading “Genetics for Dummies”…seriously, I am reading it). Adela’s genetic picture is, as Mommy reported “one in a billion”. Those two combined make it such that there’s not a way for them to give us definitive answers as to what genetic conditions she has versus not. There are still some tests left to do (like the ones on Mommy and I) and I hate to admit, but I didn’t write them down. And as for the results, they’ll trickle in over the next few weeks. As we’re learning, some of the genetic tests are very specialized and are performed only at certain hospitals or labs. So, Adela has blood samples from coast to coast being tested. And dealing with outside labs means they don’t always know when the results will come back.