Wednesday, September 22, 2010

updates from the land of life with a DNR on the fridge posted to facebook May 30

We got a new fridge by the way, ours died. David and Daniel found a good deal on a very slightly dented one at Lowes and it came today. And because in the state of IL DNRs must be on display, it’s one of the few things transferred at this point to the new fridge.

This all seems to have started with the fridge. I doubt that it is really the fridges fault. Friday night after we went to go look at fridges, feeling brave enough to take Gideon out of the house, David noticed that Gideon was feeling hot. We took his temp and he was running at 102.4 fever. I don't need to tell you this is not good. It’s not great for a normal baby but for Gideon sick, even just a little sick is really complicated.

We called our hospice nurse who advised to alternate Tylenol and ibuprofen to bring down the fever. She was able to get us back on continuous care for a few days and our nurse arrived early Saturday morning.

He has not gotten up too much over 100 degree fever since Saturday but we suspect that is because we are still pretty consistently dosing the pain/fever reducer medications.

Saturday was the worst. He was cold, clammy and pale for a lot of the day. He just hasn't been himself either. He is almost never awake and he eating very little, maybe a third of what he normally does.

I wish I could tell you what that means but I don't know. None of us do, not even the hospice people. It could be something he bounces back from, it could be the beginning of the end. We just don't know. I am torn between which one I really want it to be. Of course I would love to have him longer and I am shattered when I think about what it will be like when he does go home. At the same time, getting better means going through this again. Which isn't really comfortable for any of us, him included.

That being said I really don't know how to ask you to pray. Since nothing seems to be changing we are going back to once daily check ins tomorrow. this means that David and I will be responsible for pain medications, Benadryl (he also has a rash) and his seizure medication along with monitoring his temp to make sure the fever stays down. I am most worried I won't know when it is time to break out the big drugs. he has seemed really uncomfortable lately and that worries me. I have one job as a mother right now and that is to make sure my son does not suffer pain while he is here with us.

well two jobs. love the stuffing out of him and make sure he is comfortable.

I will do my best to keep you updated but we are pretty consumed with just living right now. I might be slow to answer my phone. talking on the phone really wears me out. every time it rings I kind of cringe. it’s hard to explain but it’s just one of those normal easy things that suddenly becomes like running a marathon. I guess at some point we should organize some kind of phone chain so David and I don’t have to call a lot of people to update them.

I know that everyone who calls just wants us to know they care and I love that about my friends and family. it’s just something about this process, like I said, that makes simple normal everyday life things feel like climbing Everest.

Though I am sure that is a "normal" part of grief and parenting a terminally ill child it really stinks. This “normal” is the pits.

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