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Saturday, March 26, 2011

PICU- Day 8 & 9 and a fundraiser

Hello everyone,  I had every intention of updating last night but once we got home I was physically and emotionally exhausted and just wanted to sleep.

For those who follow me on Facebook know Joey was extubated yesterday.  They turned off his meds around 9am and said it would be a couple of hours before he'd wake up.  So we waited, and waited.  He first began to breath on his own above the vent but he wasn't waking up.  The doctor said it was normal and he'd wake up when he was ready, so we kept waiting and waiting.  Finally at 4:30pm they decided he was ready and they removed the tube.  They gave him a breathing treatment and put him on O2.  He was doing ok.  The first 2 hours were the most critical so we just stood there and watched him breathing.  He was still pretty sleepy and slept most of the time.  Joe stayed with him last night and of course Joey woke up and spent some time with his eyes open at bed time.

Today he is still doing well.  They tried to wean him off the O2 but he didn't do well so he is back to 1.5L of Oxygen.  The doctor said it will take a couple of days to get off the O2 and he'll need to stay here another day or two of watching him without O2 to make sure he continues to do ok.  So I am not sure when he'll be released.  They started him g-tube feeds today and those are doing well.  He sleeps for a while and then wakes up for a while.  He HATES to have a wet/dirty diaper and lets us know it.  He seems to be in a lot of pain and has been getting IV pain meds every 6 hours to keep it under control.  He does have periods of trouble swallowing/breathing due to mucus in the back of his throat but he does a good job clearing it himself.  But there are times we need to suction him.  Which normally it really bad for an EB baby, but they are being very gentle and it doesn't seem to be doing any damage.

Here are some recent pictures.  Summer didn't want to hold him today so that is why she isn't in a picture with Joey.






Lastly I wanted to let you know about a fundraiser being held for Joey.  6 years ago after we lost Garrett, Joe and I attended a support group for parents who had endured infant loss.  There were 4 other couples in the support group as well.  Well all kept in touch since then.  One of them asked if there was anything they could do after Joey was born for us and there really wasn't anything at the time, but since Joey has been in the hospital, Laurie came up with an idea.  She sells Avon and has set up a fundraiser from her sales for the next week or two.  She is donating all her profits to a fund set up in Joey's name to help off set his medical expense.  We have medical insurance but we all know how insurance doesn't cover everything.  We are very humbled and thankful for her generosity. So if you frequently order from Avon and would like to participate in her fundraiser, here are the instructions on how to participate:


2. Click on online events

3. Click on shop my online event

4. Shop 

5. At check out make sure you type in JOEYFUND.

Free shipping over $30!!! 

Feel free to pass this on/share on Facebook  to anyone you think might be interested.  

That is about it for today.  Joey just got his breathing treatment and is due for another feeding around 9.  It's pretty quiet here in the hospital.  Not much to do other than watch him sleep, watch TV or play in my computer.  Hopefully I can get some sleep tonight; his night nurse is really great tonight and says he plans to take care of all of Joey's needs so I can sleep, but it doesn't take to wake me up so I don't foresee much sleep in my future tonight; but that is ok, he is worth it:)

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