Wednesday, January 18, 2012

Sedated echo & the wait for surgery

We were up at 4:15 this morning.  I had to be sure that Josiah was able to nurse before the 5:30 cut-off time.  Mission accomplished.  My goodness was he full of smiles this a.m.  We were out the door at 6:15 with the hopes of beating the morning commuters.  Mission semi-accomplished.

We arrived at 8:30, parked, got a snack, and checked-in at 9am.  We met with the RN responsible for the sedation, the cardiologist, and a few people in between.  At 9:50, Josiah received the medication to help him sleep.  He was not a happy baby.  At 10:20, they began the echo cardiogram.  They finished at 12 noon.

When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement.  Unfortunately, that was not the case.  Josiah's heart remains enlarged on the right side.  There continues to be a great deal of pressure within the right lung.  These had not been a result of the virus.  They are caused by something else.

Repairing the holes in Josiah's heart now becomes priority.  They will fix both the VSD and multiple ASD's.  Unlike the previous time frame of "within three months," it is now "within a month."  The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young.  This may be indicative of hypersensitive lungs.  It may be a result of the holes in Josiah's heart.  If that's the case, surgery would demonstrate improvement.  If not, the search for answers start again.

In the meanwhile, we try not to get too far ahead of ourselves.  We wait for surgery to call with an appointment for pre-op and surgery itself.  We plan from there.  Carl & I will take turns staying with Josiah in the hospital, at least for the first few days.  Josiah will initially be on a ventilator and breastfeeding will be impossible.  So, I will pump & wait until he can feed again.  Thereafter, I'll stay with him to nurse him as he is able.  He'll likely be in the hospital for 4-7 days, but it could be longer.  We pray for fast, easy recovery.

At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.

We were pulling out of the parking spot at 1:30pm for the one hour ride home. 

The pediatrician's office called while we were driving home.  Josiah's Synagis arrived today.  We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.

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