Mike and I are still in waiting mode although we did hear from everyone yesterday.
The oncologist's office called and wants to see Tomas on Tuesday. So that is it. In 5 days we'll go to the appt. and either his labs will be back up and this was just a fluke, or they won't and we will begin.
I also took Tomas to a GI appt. yesterday. The doctor said he wasn't too worried about the bile as we already know he has gallbladder issues, but he was concerned about the pump just randomly stopping. He ordered an x-ray. Last week when Tomas was at pulmonology she had asked for a chest x-ray if GI was going to do one. She didn't feel it was necessary enough to expose Tomas to more radiation, but if he was going in for GI than she wanted one. So off we went to the hospital for x-rays (GI doctor has offices in the hospital wing).
This is the first time they wanted one of him sitting up. I hope I can describe this contraption well because it really was something else. Imagine a hospital tray (the kind you roll up to the bed). Now, imagine a large circular hole cut out from the center. In the center of the hole is a baby sized bicycle seat. Tomas sits on the seat and his legs dangle through the hole. Then on both sides of him are two halves of a clear plexiglass cylinder. His arms get raised straight up and the two halves are brought together to contain him and keep him from moving. The whole thing is then velcroed together and just his little fingers are sticking out through the top of the cylinder. There is also a space where his face can stick out so he can breathe. The girls and I called it Tomas in a tube.
The tech warned me ahead of time that he would cry as it was meant to restrain him, but it doesn't hurt. He didn't cry, he blew raspberries and bah bah bahs and dah dah dahs the whole time. It was pretty funny. The tech was shocked and asked me if he ever cries. He does, he's just been through a lot worse than encapsulation before!
Anyway, I should hear back from GI today and pulmonology too. Today he has an endocrinology appt. and than we are done with doctors for the week. Hooray!
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We've done that snazzy contraption before! But our childrens hospital just holds them, I think thats faster and easier than getting them all strapped in. I'm so glad this week is almost over too!
ReplyDeleteLimbo is a difficult place to dwell.I am a give it to me straight,right now,kind of gal and then hit things head on.Till,Tuesday we'll pray for peace for your worried heart.Breathe in,breathe out,pray in between and enjoy the weekend.
ReplyDelete*Ash Wednesday was wonderful... as long as I had my handy dandy sanitizer to wash her little hands as everyone felt the need to stroke them!
I am sorry that you still have to wait a little longer. Just curious....does Tomas regularly see the oncologist? I find it interesting to see how differently everyone does things. Ella has seen the oncologist regularly since birth as they are the ones that follow her blood. Just wondering if it is the same for you guys. Praying that his blood will return to "normal" by Tuesday. I use the term normal loosely as Ella's is rarely completely "within normal limits". Anxiously waiting with you!!!
ReplyDeleteas always we are thinking about all of you, especially little tomas. he is in our prayers and i hope that the test results come back showing that things were a fluke. if you need anything please let me know.
ReplyDeletePraying for a fluke!!!! Which our kids are really good at!
ReplyDeleteFive days is like forever. We are all here waiting with you!!!
Keep us posted.
Hugs!!!
Waiting is the worst! Praying you get good news.
ReplyDeleteTo answer your comment... before heart surgery, I thought the 70's were a normal oxygen range. Since surgery, his normal is high 90's. So I wasn't sure what low oxygen would be. I actually called the on-call pediatrician to ask - he said don't let him go below 88 - which is funny - because he was rarely above 88 for the first 5 months of his life I don't think!