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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, December 10, 2013

Lights and sirens!

Soooooooo here you go. 
Last night we were coming home from a birthday party for Jeff's business partner Nic. We asked Alex to get his seatbelt on. He did. A few minutes later he turned on the overhead light and undid his belt. We asked him to put it back on. I noticed that he was looking very tired and then very sluggish and limp on his left side of his face. He let his eyes roll around in his head and I knew something was wrong. Jeff pulled over and I jump back and re-did the seat belt and we went to the hospital that was 1/2 mile away. When we pulled up I jumped out and carried him into the ER. I asked for help... I was panicked and you could hear it in my voice. A male nurse scooped him up and carried him to a bed were things rushed in blurs around me. I think there were around 10 people working on him and asking me questions. They stripped him and began an IV, pulse ox, blood pressure cuff and EKG. Next we needed to get a CT... So many tests done in a flurry. Riverton isn't as well ready to receive a complex case like Gator so after a blessing which calmed him. He rode by ambulance with sirens and lights to PCH. He was feeling better by then and wanted to sit up and see out of the windows. Tyler was this darling EMT who was so sweet and way rad. We went straight to the PICU. It was so comforting to see familiar faces. Julie and Ben were here. Then we met with Nuerology. We needed to determine if Alex had a stroke. They would give him a special medication called TPA to reduce the effects of the stroke. I can't remember what the rating means but they gave him a 2.5 and therefore did not need to have that medication. They did need to have him have a MRI. That would give everyone a better idea of what we were dealing with. The MRI showed that Gator indeed had a Stroke. It was a little one. One that he recovered from. He seems just like our boy. Whew!!! Now we needed to identify where that pesky clot came from. To find out more about it all we did a transesophageal echo. This test showed that Alex has a clot in his left non existent ventrical. We have three options on what we should do about that darn thing.  I was home with the girls during this conversation and do not fully understand what each of our options are but I will try and explain. 1. We would open his chest and see his ventrical closed so that nothing goes in and nothing goes out.. This is of course extremely invasive and not really what we feel is best and so we have taken it off the table. 2. To fix it with a coil during a cath. More intense but not totally off the table 3. Is to treat with anti coagulants (lovenox) and watch and wait. We have started the Lovenox and he will stay on it long term for right now. They also reviewed the MRI again and found two other spots on his brain indicating two other strokes. These could have happened pretty much any time between now and his Fontan. Kids with the Fontan are more likely to have strokes because they have a clear path without the aid of the lungs to filter out little clots like these. Because Alex's heart isn't squeezing hard, blood can pool and make these little clots. Also since we are here we will meet Transplant. It doesn't mean that we will move forward in any way. It is simply a chance for us to chat with that team. All of these measures to preserve his brain will be so when the time comes he can get an over haul and a new engine. Amongst all of this the girls have been such sweet tempered helpers. They are trying so hard as always to be happy and do good. Ry is old enough to see the stress we are feeling but she is brave. And Eden ran out to the car today when I got there thinking I had brought Gator home. She cried disappointed cold tears when she went out to find him in the truck and he wasn't there. "He is dis my buddy"!!!  More later!!! 
In the ambulance! 

Playing IPad today!! 

Totally silly stringed!!! 



After his TEE

Double barrel drinks








8 comments:

Chelsea Michelle said...

Gosh I just love you guys so much and I wish I could give that boy smooches to death. I am so sorry these things have been happening! I understand this part of things since I kept having those mini strokes all the time. I just wish these tickers could just work like they should. Love, prayers, hugs, smooches, and loves to all of you! Glad he is doing ok!

Jen n said...

We love you sweet boy!!! The last pic reminds me of him singing "Red Solo Cup" when we went camping. Get well soon so we can all play!

J.B. said...

Just wanted to say "Love youse guys and we're thinking of you. It's good to see such awesome pictures of him, even as this craziness swirls.

Jonathan and Julie said...

We Love you Guys! Doing the Silent Mexican Hat dance with my fingers for Gator to stay happy! Hope he knows we are all thinking of him and hope he can come home soon to see his sweet sisters! Take care and know we are all praying for your family!- The Baker's

Tamra Ashby said...

Sometimes it sounds so small to say "you are in our prayers" but families with amazing testimonies like yours help teach the rest of us the true power of prayer. So I say, with all the love my family has to offer, that your sweet son, his amazing parents and his beautiful sisters are in our constant prayers. The Ashby's

marti said...

Oh how I love that boy!! What can we do to help? Our family includes him in every prayer!! Even Naomi!

Gee Family said...

Wow crying tears knowing how hard this must've been. I could just imagine how scary it would be. Love love love you all! So glad he's doing okay.

Melissa said...

Oh my dear! I am sorry but glad he is smiling and that you have a plan in the works! Prayers and loves!