take a seat its time for the ride to begin...
The Rollercoaster:
Well today we went into hospital all prepared to come home :( That never happened, the consultant came round and said "sorry you wont be able to leave today but i will talk to you about it later", i was so upset, having promised myself not to count my chickens until we had actually left - i found myself smiling on the way into the hospital and telling people i bumped into "we are going home today"....strange thing is, it wasnt because he had spiked a temp, his temp has been steady for days now....the doctor explained; Daniel is doing REALLY well, he has handled the chemo wonderfully but he is now 9 days post chemo and his numbers are "flat" for want of a better word (or neutropeanic for medical people) this means he is at risk of MAJOR infection that could prove fatal if left untreated. Yesterday Daniels Hb (haemoglobin) droppped to 4.6 if that was us as adults it would floor you, you would be so tired, fast heart rate....really quite ill but with Daniel NOTHING showed and the only way we knew it had dropped to this dangerous level was through a blood test (which gets done ever 6 hrs in hosp),so if he was at home even just overnight he could develop an infection that (during the night) could rapidly become very dangerous for him.
Today we got home for a few hours, we had tea together and it was nice but very hard to send him back after his bath. He got teary this time and i just wispered into his ear "i know son but you will get better" and he nodded and off he went.
My head says he is in the right place and the doctors know best and he will get better, my heart however is another matter - it says, get your son home, you can look after him here, he is better off with you.....
Well today we went into hospital all prepared to come home :( That never happened, the consultant came round and said "sorry you wont be able to leave today but i will talk to you about it later", i was so upset, having promised myself not to count my chickens until we had actually left - i found myself smiling on the way into the hospital and telling people i bumped into "we are going home today"....strange thing is, it wasnt because he had spiked a temp, his temp has been steady for days now....the doctor explained; Daniel is doing REALLY well, he has handled the chemo wonderfully but he is now 9 days post chemo and his numbers are "flat" for want of a better word (or neutropeanic for medical people) this means he is at risk of MAJOR infection that could prove fatal if left untreated. Yesterday Daniels Hb (haemoglobin) droppped to 4.6 if that was us as adults it would floor you, you would be so tired, fast heart rate....really quite ill but with Daniel NOTHING showed and the only way we knew it had dropped to this dangerous level was through a blood test (which gets done ever 6 hrs in hosp),so if he was at home even just overnight he could develop an infection that (during the night) could rapidly become very dangerous for him.
Today we got home for a few hours, we had tea together and it was nice but very hard to send him back after his bath. He got teary this time and i just wispered into his ear "i know son but you will get better" and he nodded and off he went.
My head says he is in the right place and the doctors know best and he will get better, my heart however is another matter - it says, get your son home, you can look after him here, he is better off with you.....
posted by Liz at 8:34 pm
3 Comments:
I'm sorry to hear he had to stay in :-( Thinking of you all xx
Liz, these posts strike right through, and all i want to do is give you a big hug and say it will be alright. Daniel is such an amazing boy and he's a brave little fella. The journey you are on is so incomprehensible its unreal, but you are an amazing family and amazing friends. Love Matt and Marie
Liz- I am so sorry that Daniel and the family are having to endure yet another medical crisis. Please know that I will be praying for you and following you on this journey. I may be a half a world apart but you will all be in my thoughts daily!!
Many hugs!
Jill- Marek's mom from Liver family
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