1-27-2010 Joey...We have a room!

Joey is out of PICU.

So our new room number is 5511, the switchboard number is 455-7000.

We are down to 2 monitors...An apnea monitor, and a O2 sat. monitor (not sure why they don't have that all in 1...I'm sure I've seen them before.) Still this is much better than all the EEG wires, IV lines, and regular PICU monitors he was hooked to!

I guess they are still planning on sending us home this weekend...once they are sure he is staying hydrated.

I know that he will be going home on 3 meds, and an apnea monitor. This is much better than how sick he was when he came in, and all that he has been through this past week.

We will also be getting a referral for a pediatrician, and following up with a neurologist (the same 1 who saw him here), and a hematologist.

Some of the issues Joey has had or is still dealing with:

Bilirubin Toxicity

Dehydration

2 clotted veins in his brain, leaking fluid into his ventrical space in the brain

MTHFR (a chromosomal marker that indicates he may be more prone to clotting.)

Apnea (probably a combination of 2 types)

Seizures

We have no idea which of these are related, or which caused others. Some of these have been resolved, some treated with medication, and some will take time or will not go away (the MTHFR is probably permanent...as it is a marker in his chromosomes).

Some of the treatments he has had:

an ambulance ride

a helicopter ride

almost 24 hrs of bright blue lights and eye mask

a blood exchange

1 MRI (sedated and intubated)

1 Lumbar Puncture (while sedated for MRI)

2 CT scans

several X-rays

3 overnight (12-24 hr) EEG's and 1 for 45 minutes

days when he was not allowed to eat, or too sick to eat

NG tube

Countless labs

IV fluids and meds

injection meds

oral meds

Continuous Monitors

8 days in PICU (he was only 5 days old when he got sick)

Several types of O2 (room air, Nasal cannula, high flow, and CPAP...High flow and CPAP both under high pressure blasting into his nose to keep his air way open.)

Many days of being rubbed, thumped on the feet, jostled, beat on the back, and even O2 bagging to bring him out of Apnea spells...as often as 8 times an hour.

It has been a rough week for the little guy, but he has weathered it really well (says proud mommy!) We will miss our nurses and Dr's in PICU, but not enough to go back!!

God is so good...I have a baby that "looks" healthy again! he is acting like he should and doing much better than many people expected. It will take 3-6 months for the clots to resolve, and he could have developmental delays show up even 18 months from now, but right now we are not expecting trouble. We think and hope that his problems have been found and should resolve in about 6 months. (one day at a time.)

It could have been vastly different. Joey could have died with that first blue spell at home Tuesday night, a week ago. He could have never recovered from the first days of toxicity, and had severe brain damage. So far it looks like he will make a full recovery. God has a plan for this little man, can't wait to see what it is!

Joy