Nicholas will not be having his bone marrow biopsy today as scheduled. Unfortunately, it was 10:00 (time for the procedure to start, but things were running a few minutes late) and I stepped out of the room to get Nicholas's favorite blankets from the dryer (they were soaked from not being changed in the night and where he is being pumped with liquids his diaper is like a water balloon), he quickly got out of the chair and got into some peanuts that we have had here for him. I hid all of the food last night, but somehow, in the three minutes I was out of the room, he found them in the zipped suitcase (he did see me put them in there, but never has he been so resourceful - I guess that is the steriods doing ther job). This has sent everyone scrambling as to what to do - maybe if it weren't Friday, this wouldn't be such a big to do, but due to the weekend, it sets all the labwork in a spin. Right now it is rescheduled for 8AM tomorrow and they assured me that this won't make a big change in things. We will have to wait until Monday for results. Even then, I will question the accuracy of the test results that sat a bit..really, really devastating. My mom thinks that maybe Nicholas just needed one more day to get where he needs to be and that this may have been a blessing. Time will tell, but for now, this is very upsetting.
On another note, he is not retaining enough sodium (how this is possible with all the pizza, nuggets, funyuns, peanuts, bacon, etc that he is eating I have no idea) or phosohorus, so he will be taking supplements for that which we will continue at home. He no longer needs one of the anitbiotics he was getting from Monday nights ordeal, but will stay on the other one a few more days. The blood cultures taken that night showed no signs of bacteria, so that at least was good news.
The doctor is checking on the Philadelphia chromosone results I spoke of yesterday. Hopefully we will still hear back on that today, so it isn't a total bust.
Rich will be here tonight and I will come back on Sunday. I just need to get some sleep. My call button doesn't work, so when the machines alarm for one reason or another I have to get up and go to the nurses station (this happen several times) and the patient next to me ( a 2 or 3 year old little girl) screams and slams the door all night. I have been told she might be leaving today - please please please! I am obviously not on top of my game and that help set off the downward spiral of today. What can you do? Just keep waiting.....
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2 comments:
Sending lots of hugs & support.
Hang in there Donna. Getting a break from hospital duty and a couple of good nights sleep will give you new energy and a fresh perspective to get Nicholas on the road to recovery. As I remember you do like your sleep!!!
Love and hugs from San Diego,
Judi
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