that surrounds her. The same goes for Jackson and Kate. I also can only control so much, and so I cannot drive myslef crazy trying to keep Liz healthy. Of course we take precautions- consistent hand washing, staying away from people we know are ill, not reaching into bags of food, staying away from buffets (no Souplantation- thank goodness!!!). I have cut back on play dates for Jackson until flu season passes, Liz is wearing her mask when we are in enclosed public places, and she continues to take inhaled antibiotics (thru her nose) in an effort to keep her from getting another sinus infection. Especially now that we have stopped ivig treatment and she isn't getting the extra help with her immunity, and because her ANC continues to be lower than it should be, we have to be cautious. It all comes back to stinkin' CDifficile.... if Liz gets sick, she almost always requires antibiotics, and in turn those antibiotics cause her CDiff to flare. It is a balance of being cautious, but not crazy over germs.
As much as we try to keep healthy, the reality is that people get sick and Saturday, Kate started with a horrible sore throat, cold symptoms, cough and a fever. She was unbelievably busy with school and volleyball last week and her exhaustion, I'm sure, played into her getting sick.
She will be fine, but Liz cannot get sick this week. If she gets what Kate has, the doctor will not be able to do the scopes on Thursday as planned (even if he would, Anesthesia won't allow it to be done). We really need the scopes done this week, in fact she was pushed ahead on the OR schedule because it must be done this week, so being sick would really mess up our plans. Please pray with us that she will stay healthy.
We have a quite a few things happening in the next two weeks-
She'll have labs drawn tomorrow morning which we are a bit anxious about. It has been two weeks since her last set of labs, and we are all hoping for her counts to be better!
Tuesday, we meet with her Hem/Onc doctor here in Long Beach.
Thursday is her trip to the OR procedure room for an Endoscopy and sigmoidoscopy.
I would like for them to pull her PICC line out on Thursday while she is in the OR so we can avoid sedating her again later in the next month or two, but I don't think that will happen.
The following week, Liz will see her Pediatrician to get the Pneumovax vaccine. She was given this in November, but it turns out her body rejected that vaccination, so now that IVIg has been put on hold, we will try it again, in a different form.
On the 15th, she will see her GI doc again and we will discuss the G-tube yet again, based on her weight off of the TPN (iv nutrition).
In early June, she will have titers testing done. This testing will tell us what her body is doing now that she has had IVIg. I am horrible at explaining the little I understand about all of the Immunology specialty, but this testing will show how her immune system is working now. This testing must be done a full two months after stopping IVIg.
On June 21st, we will head back to CHLA to meet with an Immunologist there who will go over the results from the testing, and also plans to run specific white cell testing (also must be done while she is not getting treatment). That same day, we will meet with a Hem/Onc doctor at CHLA who we have seen before.
Phew, confusing. I don't expect anyone to read or understand all of this. I am journaling to help me have a history for my reference.
I did let Liz go to a fun birthday party on Friday for her sweet friend, Rachel. Liz is pretty isolated and misses having day-to-day interaction with friends. She was nervous to see girlfriends she hadn't in a while, but she ended up having a blast. Seriously, I had tears in my eyes when I saw how much fun she was having dancing and giggling with her sister and her friends!
I had her leave her mask at home, and she wore a cover over her PICC line, so she looked totally "normal!" We are cautious, but not driving ourselves crazy, afterall!
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