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, February 3, 2015

Everyday is a bump and a miracle

That title and quote comes from a dear friend Julia! And it's so so true. 
The recovery from transplant has been much more difficult then I ever could imagine. Putting that out here for everyone has been another worry because I never want to seem ungrateful. The struggle to recover has been a completely different animal. Once extubated Alex started to talk, then became increasingly confused, then slowly he slipped into a deeper and deeper delirium. He is so confused that he doesn't know me or Jeff. He knows daddy more than me, neither of us most of the time. It's exhausting and heart breaking. I thought, great, we totally fixed his heart to have messed up his brain. But, he can improve. He can come back. This morning he had his first official post transplant cath and biopsy. The team once again measured his pressures. Which so happily have gone down to an acceptable pressure. We won't have a result until later of the biopsy. We are hoping for no rejection. They have prepped us that there might be, because of everything he has endured lately. He also had his single lumen PICC, changed to a double. He is pretty quiet, each day little glimmers of the spunky boy we know comes back. Time is what it will take and what we are prepared to put into it! 

In other news, I passed my early glucose three hour test. 

Ry has been busy entertaining French dignitaries. Getting herself some awesome footie jammies, and started an acting class. 

Eden has been waiting and hoping each day for school.

And May has been 


jackie said...

Praying and praying that each day's bumps get smaller and smaller and the miracles get bigger and bigger.

Wright Family said...

I wanted you to know that Carla had a serious case of delirium after her transplant as well. She was fine one day and then all of a sudden had a smile like the joker on her face, couldn't talk, use her hands, and seemed like she had animal like inabilities to control her impulses (chewed a hole right in her intubation tube). Turns out that she had what is called PRES Syndrome. This is when the transplant med (in her case tacrolymus) levels jumped very high and caused the brain to swell. It took about a month but Carla was eventually back to her normal self. She had flashes of herself as she got better, mostly with music (because music and talking uses different parts of the brain). Anyway, I am telling you all of this so that you can pass it along to your team if you think it seems like what Gator is going through too. And also to give you peace of mind. Heart hugs! Jen Wright

Summer said...

Sending contined love and prayers❤️!

likeschocolate said...

Praying for our sweet boy!

Cara said...

Hang in there Brynn! My mom went thru this exact thing in December after her transplant. It was the most upsetting thing we went thru during the whole recovery period in the hospital. We were so grateful for the wonderful gift we had been given but were so upset and saddened when she awakened a few days later. This was not our mom, how could this have happened? Nobody could have prepared us for this. We questioned every Doctor that walked thru that door asking them to please reassure us this was normal and that my mom had not suffered thru something else during surgery that made her act the way she did. EVERY SINGLE one of them told us this was a very NORMAL thing and it happened to a good majority of patients. Some worse than others. Some longer than others. We were prepared for everything (we thought) thru our meetings and classes prior to the transplant but we were never advised of this. It was the hardest thing when people would ask how our mom was doing, we did not know how or what to answer. My mom acted very 'child-like', she would spit things out of her mouth onto her gown, she would spit on the floor for no reason, she would lift her arms up midair and stare at them for a long time, she would make things up, say very strange things, not recognize people and she would scratch and pick at everything. At one point they had to put a boxing-like glove on her hands and put her in a room that had a nurse watching over her via camera and in-room. My mom also repeated EVERYTHING. You would ask her her name she would say 'what is your name'? She would reply everything with the same question you asked her. It was so upsetting. My dad left the room about one week after the delerium started and was upset and crying. The transplant team was rounding and saw him upset asked him what was wrong. One of the top transplant team MD's PROMISED him his wife would be back to normal mentally but that it would take time. The nurse later told my dad that this particular Doctor is not the most comforting Doctor and when the nurses heard him PROMISE my dad this they were all shocked and said in his whole carrer at the U they had never heard him promise anything. I am telling you this in hopes that you will know this WILL get better! It is by far the hardest thing we experienced and wish that we would have known others we could talk to about this. It looks as if you have a great support system as well as other moms following you that have gone thru the same if not similar experiences but I thought one more story will just give you that much more to realize this will pass. It may takes weeks (my moms odd behavior and delerium lasted 2.5 weeks) or as your other friend posted, one month, but I can tell you without a doubt his memory and his cute little personality will come back! Gator and your family are continually in our thoughts and prayers as well as countless of others praying for him!
Cara Sessions