Collagen injections will be done this coming Friday, May 19th, at Riley Children’s Hospital. She will have to stay overnight for observations.
I called Cincinnati Children’s hospital yesterday to discuss Bailynn’s nutrition levels looking from a Tuberous Sclerosis perspective. I had a great conversation with a nurse there. I have been more than a little upset by what has been going on with Bailynn’s diet and the way it is being so heavily scrutinized. I explained the situation with the rods to the nurse. I also explained the recent nutritional levels and Bai’s intake. I stood firm on my no G-tube stance and I regurgitated her daily eating routine. I had already sent them the letter from the dietitian and they had seen her past blood levels. Here’s the deal. Bai has tumors in her body. Lots people. Lots and lots. They are coating her brain. They are speckled throughout her heart. They are ravaging her kidneys, dancing about her skin, They are in her liver and her eyes. They are EVERYWHERE! I want to scream and cry at this reality, but they are. They are everywhere. Her body is constantly making these things. Her body is constantly fighting itself over these things. Her blood work shows an inflamed state with high and low levels that once I googled them all individual, point to regeneration, healing, and recovery. I’m no scientist and I see these all pointing to one direction. Her body is consuming all the nutrients that are required to rebuild itself at an incredible rate. This makes her blood work look really out-of-whack. We didn’t know this, so we have since upped all the nutritional vitamins that were in the low range. We beefed up her calorie intake, her protein intake, her fat intake. Her levels are more in the low normal range, but still low. Her body is fighting. I can only image if we were not so on-top of her nutrition, what she would look like, how she would feel.
I asked the nurse if these kinds of blood levels are typical of TS children/individuals, especially those with the amount of TS organ activity as Bailynn. The answer – Yes! Yes! YES!! This is pretty well normal. She even was taken with how much action we have taken on this matter. Surprised how the fact that TS was being left out of the blood work equation. We agree……so please relay this info forward! We are having this all communicated to Riley. We need them to stop trying to put Bailynn into a “normal” box. As much as I don’t want people to look at Bai and see TS, this is an instance where they must! They must see TS! They have to take it into account.
I also had to discuss the medication we have put on hold for months now. It is has been since the last day of January that Bai got to take her Rapamune (Sirolimus). This is the medication that controls the tumor growth within her body. Our main concern now is being able to get back onto that medication. She needs it. She has to have it. Can what there doing to her back prevent that? That was second on my list of concerns for Cincinnati. There is a laundry list of do’s and do not’s with this med. There is a booklet of interferences and pages that reiterate it’s toll on the immune system. All this needs to be known as well. All the “options” we were given for her back have to be options that let us go back on this medication.
Friday we do step one to cushion the bulge. Hopefully it works, hopefully it doesn’t dissipate too quickly. Hopefully. Hopefully it doesn’t interfere with her future medication needs. I can’t believe we travel to Riley again on Friday.