Our Grandson/heterotaxy syndrome - Goodbye Pierce

The little tyke and family are still in my thoughts and prayers. Loved that latest picture where he was so proud of his latest accomplishment.
 
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3/5/12

Pierce's infection was caught early and has responded very well to medication. However, last night he had a seizure that lasted 40 min. No long term damage to be found. He still has a high heart rate (115 at rest, 200 during the seizure) but things are looking up.
[h=6]Pierce will be going into surgery tomorrow morning about 6:45 a.m. Boston time. They are going to re-attach his bowel, take his appendix, and secure the bowel so that will not be able to kink or twist. The doctor who is doing the surgery was the one who came up with this procedure and is one of the best in the world.
[/h]This little guy is a fighter, for sure. Thanks to all of you who have kept him in your thoughts -I know it is helping.
 
Just thought you should all see the guy you're pulling for!

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This was taken a couple of days ago just after he managed to pull the feeding tube out of his nose. He was quite happy with himself. :rofl:
 
Pierce didn't have bowel surgery, he had fevers all night....he did however go to the OR this morning to have his central line removed because of suspicion it may be infected. He is back on the floor now in his room. The plan is to do the bowel surgery next Tuesday.
 
Wow, this is one tough kid. Hope he keeps up the fight. Can't imagine what the family is going through. One tough roller coaster ride at least. Still sending good wishes and hoping for the best outcome.
 
Resurrecting an old thread. Way overdue for an update.

Two weeks ago it was felt by the docs in Boston that Pierce had progressed enough to be sent home - for the first time in his life he was stable enough to not have to be in the hospital under constant care. It seems the last operation, an angioplasty on a pulmonary artery, was the domino that caused many other issues to fall in line. He is still battling many issues and is in the bottom 5% of growth for a 10 month old (just over 16 lbs.), but he is doing better.

Almost. It seems that his dad had tossed he and his mom out in favor of a new girlfriend just weeks prior to the release. Since that left the two of them homeless there was nowhere to release them to. Without a home the state would have stepped in and Pierce would have become a ward of the state. Well, grandpa Rennie and grandma Jan to the rescue.

They transferred Pierce to a hospital here in Boise where, after a few days and the assemblage of 8 doctors and 4 therapists for "team Pierce" he was released to our home. There go my quite retirement plans.:rofl:

It's been a hectic two weeks. He has either a doctors appointment or a therapy appointment nearly every day, often more than one. However, Jan no longer suffers any boredom what-so-ever.:rofl: As for me, I've taken on a new position at church developing our on line ministry (volunteer) an a part time job (paid) producing videos for another ministry. I also need to get more time in the shop and not having to worry about Jan being occupied might just help with that too.

In the mean time we will play doctor roulette and deal with the dad who is now trying to force them back to Indiana and get 1/2 custody. CoC limitations apply to the balance of my post.:eek::rolleyes::D
 
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So glad to hear about Pierce doing better! Guess you will be kept awfully busy now!

Truly inspirational how you are taking this on!
 
Really was not looking for any accolades for my posting/actions. It is what had to be done and any of you would have done the same.:thumb: never the less, thanks for the support! :D
 
While Pierce has been in my prayers for quite a while, I will now include his Dad for a renewed, more courageous heart, his Mom for endurance, and his Grandma and Grampa for their generosity.
 
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