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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, January 27, 2015

Update #7

Wow has it really been so many days.. It all blurs together. It has been a lot rougher than I ever could imagine. Alex was very very sick and his body wanted his new heart and isn't rejecting it so far, it's just that it was so much of a wonderful thing all at once. Like too much ice cream can give you a belly ache. On Saturday we tried to extubate, which was successful for a time, then he needed high flow and then Bipap and then once again Alex was placed on the ventilator. Our fear was that he was having acute rejection. Alex went down to the cath lab and underwent a series of tests including a biopsy which would help us understand what was going on. The surgeon came in and was very sad to report that he didn't know how Alex was still alive with the pressure he was experiencing in his heart. He had never seen a patient like this before. Later that night the biopsy showed zero rejection.we were really baffled as to why this all was happening. The conclusion of most is that his body was accepting the new heart but had been so sick before hand that it was adjusting very slowly. That because he was so sick before he had adapted to "making it work". So he was still fighting in a less than ideal circumstance. I went from the happiest happy to a very low low time. Over these past couple of days we have watched him improve. Pressures have gone down and his body finally seems to be celebrating with the rest of us. And maybe his body grieved the loss of his heart that had worked so hard to sustain him. And his new heart grieved the loss of its first home. Both needed time. Baby steps. Alex is still intubated and very much asleep. He responds to daddies voice the most. 
He did open his eyes and nod when I told him about his baby brother. We took Ry with us this morning. She is such an amazing big sister. She wanted to be one of the first to know. We also saw a beautiful lip and nose(no cleft) healthy bladder and kidneys, spine looked great and a glorious four chamber heart! I will follow up with MFM to schedule a fetal echo. Today we feel blessed beyond measure! 

6 comments:

Elk Horn Specialties said...

Holy cow.......baby Brother!!!!! That is beyond awesome :) Alex will be the best big brother, and has never taken the easy route on anything! We love you all and will continue our prayers!!! Yay!!!!

Julia Brown said...

So wonderful. New baby brother, no rejection... YAY! So glad Gator is doing better today. I've been wondering. Sarah's recovery was a lot harder than we expected too. I thought everything would get better right after she got her new happy heart. Nope. Those worn out, super sick little bodies are so very in charge of how things go. Even after she was extubated (a whole week later) she wasn't herself for a very long time. Hang in there and just be patient. It's worth the wait. Love and continued prayers from our hearts and home to yours!

Melissa said...

Hooray! And congratulations! We are so glad to hear Alex is doing better! We'll keep praying for him!!!!!!

J & D Ryan said...

We've been waiting anxiously for updates & saying lots of prayers, knowing recoveries take time and there are lots of things to overcome. We are so happy to hear he is doing better. Love the comments and encouragement from others who've been there. And we are just so tickled to hear you are having a boy. This reminds me of Alex at our front door a few months ago. I said that Br. Ryan would be "tickled" to know he came by. He replied "tickled"?, asking what "tickled" meant? It was so cute!!! Lot's of love & prayers for all of the Homer & Clawson families & Alex!

Summer said...

Thank you for the update. You all continue to be in our prayers, especially brave Gator! Mason had a tricky recovery too.... But he pulled through and so will your hero Gator! hugs ❤️!!!

John and Janelle said...

Continuing to pray! Stay strong!❤️