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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, June 10, 2014

14%

Has it really been so many days since I have caught up on all the happenings??? The hard part is pulling away for just a few minutes in order to put my thoughts on paper. (Computer really)... 
Alex received his PICC line. It didn't bleed and it has been a good line except the very next day it clotted and we had to put in an IV in order to take care of the PICC and give his meds at the same time. In order to prevent clotting he has an extremely low dose of Heprin going at the same time as his milranone. That very same day after all the IV drama, I decided to give him a shower. Most boys his age avoid showers.. Not Gator man, I think it has to do with his temperature not regulating well. Showers warm him up just right. He was so happy to get soaped up and scrubbed down. Sponge baths just weren't cutting it. They actually give those in the hospital. We got him out early when I realized I had gotten the dressing around the PICC wet which is a huge No No!!! I frantically tried to dry it but there is such a huge risk of infection that it had to have a dressing change and he was not happy with me. I felt horrible and tried apologizing but it really burns. As brave as this little guy is, some things just stink!!! 
His school class sent him a video text and he sent them one back! 
We are so lucky to live near this incredible hospital, Alex has appreciated such wonderful and caring nurses, who end up thinking he is pretty great too. He especially loves Miss Jen from child life. She has been more then a specialist, she is his friend. He really looks forward to seeing her anytime she is available. 
This incredible nurse is Carolyn. She has taken care of Alex since he was just a teeny baby. She is another person we love and look forward to seeing. 
After getting his PICC line we were able to move to the 3rd floor... There Gator constructed this awesome car with boxes.. He and Teagan played in them as often as their nurses, meds, resting, and moms would allow.. Then they would take these "ramps" and race the cars down them. 


Keeping him down when he feels a little better is tough, planning discharge is our top priority.


We made it home....
Aaaaahhhhh.. *content sigh*
It was tons of education, organizing, planning, signing, and still Gator distracting and packing. 
It seemed a little crazy to have so much equipment in our home. Two pulse oximeter, two concentrator, tons of tanks, and oxygen supplies, new pumps and meds, and everything else we had before.... 
Together... 
I love that I never have to worrying about who is watching the girls, organizing everyone's schedules is the tricky part. I love our friends and family so much and appreciate them being so loving, helpful and brave.. Yes, brave. MayLee can be overwhelming with her oxygen, tubing, stickers, and regular baby needs. 
So being together means I can manage my little peeps.
Everyone loves helping me scrub the bathroom...


I have found there is so much to do at home. Which is great because we need to stay here away from germs. We do try and take walks. We decided to walk over to the school to pick up Gator's school medical kit. His class was so sweet and came out to see him. I could see relief in their little faces. I know some of his friends worry about him, or that being sick means he will change or forget them. But he knows them and is so thankful for their thoughtfulness. 

His wonderful teacher even came over to our home to visit Alex. It is such a blessing to us to have a wonderful supportive school and teachers. 
We still have a few moments of grief and frustration. We know that is normal. 
Today we headed back to the hospital for clinic. Everything is about the same as when we left last week so we plod on. 
One really neat thing. We met with Dan Rascon from channel 2 news. We shared parts of Alex's story in hopes of spreading CHD awereness and donate life. Mr. Rascon was so nice and very compassionate. We hope to also publicly share our gratitude to so many out there who we haven't even met. It is humbling to be the recipient of such generosity. 
In fact... There have been two groups of Alex's friends who have given to his heart fund. They have worked hard for this money and have handed it to us with smiles on their faces. I love you guys, thank you... One group also sent this sweet candy gram.. 
Why 14% because that is our miracle number.. It is so much better than 5 or 3 or none. So we are choosing hope and joy. 









1 comment:

Melissa said...

Love you guys! Tell Carolyn Hi!! Elaine loved her so much!