March 29, 2009

Wuz up dawg?












I have heard that my blog has been on the fritz. Well dog gone it, I hate when that happens. I do not know what was wrong and the blog was fine on my computer. Anyway, I deleted the "Too Much Rain" entry and then returned it to the blog. When I originally posted it I got some funny error message, so perhaps I did something wrong. I hope it is now fixed. If you still are unable to read it, will you email me please?

Things at the hospital have been rough. I have never experienced such emotional pain and turmoil in my life. Watching your child go through something like this is just horrible. Nick is still having a rough time with the breathing thing, due to the Aspergillus fungal pneumonia. I have been trying to explain to everyone how serious this is, but, it is hard for everyone to understand. I have a new analogy I have been using so I hope this helps.

The fungus is the enemy and they are attacking Nick's lungs. Normally your bodies "soldiers" the WBC and neutrophils would fight off the attack and all would be well. For some unknown reason, all of Nick's soldiers have disappeared and he does not have an IRR or stop loss! Therefore, his lungs are at the mercy of this horrible predator. Now basically these fungus dudes are camped out in their bunkers and they have figured out that Nick doesn't have any soldiers. The anti-fungal medicine Nick is getting are like guns. But, the guns aren't very effective when there is no one to pick up the gun and shoot it. So basically the guns are all lined up there doing nothing. They make for some good scare tactics because the enemy can see we have some big guns, so the fungus guys are happy to stand pat waiting for the first opportunity to attack. What Nick needs is for his soldier to come back and pick up the guns and start fighting. The doctors are trying to figure out what is the best way to get Nick's soldiers (i.e. his counts - WBC's and neutrophils (ANC) up so he can fight this infection.

The radiation treatments are complicating everything right now and the timing of this pneumonia with the radiation treatments couldn't be worse. Nick is scheduled to go for his last three treatments, starting tomorrow. I am not sure if the doctors will decide to hold the treatments or not. Nick's throat is REALLY SORE and PAINFUL from the radiation and nothing we have tried is working. While he had a better day today, he is still teetering on the brink and I need everyone to pull in all their favors with higher powers and get Nick to come out on top of this whole mess. Any positive thoughts and vibes you can send our way will be appreciated. It has been such an emotional roller coaster for Nick, Kate, Glenn, Sara, and I. Words cannot express the heartache and pain that I have been feeling of late, in combination with the daily emotional and physical toll of being at the hospital every day and watching my son deteriorate before my eyes. Keeping him fed with nutritious foods that he can actually eat has been a constant battle and so difficult in terms of transporting food from home and in and out of an isolation room. The stories I could tell. They are considering moving Nick to a room closer to the nurse's station for closer monitoring...finally! The nurse's have been so wonderful...it is the only way I can come home at night to sleep, knowing that he has a good nurse their to watch over him. Nick has been very tired and he should not be having a lot of visitors at one time, so please call me or Nick before you come down. It is good to have people for short visits, but, not all at once. I must get some sleep...way too early of a day tomorrow.

3 comments:

Anonymous said...

I got up early this am to check the posting and I was sooo glad to see this!!! Your picture made me smile, I was like Diane is back!! :)

I've never prayed so many prayers and please know we are always thinking about Nick and all of you.

Hang in there...

Love
Gina

Miss Vic said...

Hi Diane,
I was able to read both Blog entries today. You are all in our prayers. I meant to tell you that Michael's Bible Study Group has been praying for Nick since he was diagnosed. There are about twelve of them and they faithfully pray together for him twice a month when they meet and then individually on their own. We love you all lots! Love Miss Vic

CML Wife said...

I'm so sorry to hear about Nick's throat pain. I remember exactly how hard it was for us with the radiation to the spinal column and can only imagine that you are both experiencing worse with the pneumonia complicating things.

Is Nick able to have a PCA with morphine (or equivalent drug)? After a day of constant pushes, Tyler was finally able to tolerate the pain of his throat, although he didn't swallow anything at all during that period.

Our thoughts are with you all. Take care of yourself too, Diane!