Sorry for the delay in posting for the past few days.\u00a0 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.<\/p>\n
Adela is feeling better today.\u00a0 She has been progressively more peppy and happy over the past few days.\u00a0 We’ve been getting her out of the room for breakfast or lunch the past few days so she can get some fresh air.\u00a0 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.\u00a0 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.\u00a0 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.\u00a0 We also decorated her room yesterday for Halloween.\u00a0 Halloween is her favorite holiday and she’s been looking forward to it for months.\u00a0 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.\u00a0 Now her room is ready for October 31st.<\/p>\n
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).\u00a0 We’ve also started treatment with steroids for the intestinal inflammation.\u00a0 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.\u00a0 The amount of formula she gets every day through her g-tube has been increased, too.\u00a0 So, between the TPN, Elecare, and steroids, we should see continued improvement.<\/p>\n
I figured I’d elaborate on Mommy’s post about our “Care Conference” from Tuesday.\u00a0 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.\u00a0 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.\u00a0 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?”\u00a0 I understand that the doctors can’t give us an answer if they don’t know it themselves, however it is disappointing.\u00a0 So, here are some of the questions we asked them:<\/p>\n
How long will she need to be on TPN and keep the Broviac catheter (the central line)?<\/em> Will she need another flexible sigmoidoscopy (the scope procedure) to determine if there’s still inflammation or damage to her colon?<\/em> How much longer will she need to be on the antibiotics?<\/em> Have we definitely ruled out a food-related cause?<\/em> When can we start adding in other foods to her diet?<\/em> Does Adela have a weakened immune system?<\/em> What genetic conditions have been ruled out?\u00a0 What genetic\/metabolic tests are left to do?\u00a0 How much longer until we hear back with the results from the ones already ordered?<\/em>
\nThis 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.\u00a0 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.\u00a0 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.<\/p>\n
\nIt depends.\u00a0 If suddenly Adela is in robust health and clearly not suffering from this problem anymore, there’s probably no need to do one.\u00a0 If she continues her slow and steady recovery, at some point they may want to do one.\u00a0 So, basically, it depends on Adela’s progress.<\/p>\n
\nThe two that she was on for last weekend’s fever have been discontinued since her culture came back negative.\u00a0 There are three still left.\u00a0 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.<\/p>\n
\nThe doctors have ruled out that the sole problem is food-related.\u00a0 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.\u00a0 They did admit, however, that food could be related, it’s just that there’s another bigger problem that’s masking it.\u00a0 We won’t know until she’s a bit healthier.<\/p>\n
\nNot for a while.\u00a0 They’d like to improve her nutritional state in a way that has the least chance of failure.\u00a0 TPN and Elecare are the preferred methods.\u00a0 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).\u00a0 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).<\/p>\n
\nI 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?”\u00a0 Thankfully, the answer was “no”.\u00a0 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.\u00a0 Right now, her immune system is a little weak just because of her nutritional deficiencies, but that shouldn’t be the case long term.<\/p>\n
\nGenetics is a very complicated field (as I’m learning by reading “Genetics for Dummies”…seriously, I am reading it).\u00a0 Adela’s genetic picture is, as Mommy reported “one in a billion”.\u00a0 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.\u00a0 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.\u00a0 And as for the results, they’ll trickle in over the next few weeks.\u00a0 As we’re learning, some of the genetic tests are very specialized and are performed only at certain hospitals or labs.\u00a0 So, Adela has blood samples from coast to coast being tested.\u00a0 And dealing with outside labs means they don’t always know when the results will come back.<\/p>\n