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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.

Friday, October 16, 2015

Hey he's a fun guy or is it fungi????

I need to start from the beginning.. 
But, the beginning is muddled so here is my best recollection..
Alex has been having fevers in the evening for a while.. Well, since September. We have been watching him closely and going in for regular testing and checks.. Nothing has ever come up and we just couldn't figure out what the heck it was. On Sunday he started to feel so yucky that we just weren't feeling confident in our home care. We were able to get a squeeze into clinic. I love that his team will just go with it and will lay their eyes on him. Eden went to our friends the Bates and I brought May and Asher along for the.... Eeeeerrrr.... Fun???? 
Because we were an add in, our appointment was kind of squished in here and there. Before that sounds like I am complaining, I am absolutely not. Because during our wait he started having chest pain, which set off all kinds of red flags.. What a blessing to be there at the hospital when that was happening and not in the car on the way home. 
Now we needed an EKG and echo... His amazing new heart looked fantastic... The tech who was performing the echo did notice something lower down. She confessed that she is not a liver gal and went to grab another set of eyes. This person saw the same thing but also only works with hearts. They decided to pull in Doctor Molina, who also sees this weird thing and is not a liver doctor. Alex is then admitted and an ultrasound is ordered for his belly. It is clear on the ultrasound that Alex has a mass. Now we need a better picture. He had and MRI...

The white part is the "concern". It's an abscess causing all the tummy trouble and yellow coloring. Things sort of went downhill. Alex's body is trying very hard to fight what we found out is a nasty fungus called Aspergillus. eeeeeewwwww..... this is a nasty nasty fungus. 
THE PLAN:
-He got a PICC line to start the crazy antibiotics
-He is currently being watched in the CICU
-He has a drain in his liver to get out all that fluid.
We just keep adding things to his "street cred" 
-Lasr, we have discussed the likelihood of a surgery to remove the infected area of his liver.
 We haven't made any final decisions because these discussions happened with me, and I would like daddy to hear all the information and we can make a decision together. 
In the mean time...
The girls have been off to play with the Drummonds, Bensons, Chenney's, Bates, Petersons, G&G Homer and Clawson. My little Ashy can't go into the ICU.. More for his protection since he won't be fully vaccinated for a few more months. So in the meantime he spent the day today with the Chenney's. You are all so fantastic.. Thank you for helping out in my crisis.. By far the hardest thing for this mommy is getting my little peeps to helpers and activities. 



This sweet friend is Craig. He has been to visit and help Gator get his mind off of being where he is. Today he helped Gator forget his hungry tummy before going down for his PICC line. He is so understanding and fun to visit.

Asher and I tried from home to make Gator giggle..



Don't worry everyone.. I laughed and laughed until Asher got me "back".

And we got a couple of Gator and mommy selfies.. 

Notice his amazing butter cream coloring.. Oh wait.. His totally yellow yucky color.. 
Looking forward to a nice pink boy again. 

Keeping this updated is super hard because of baby, girls and taking care of Gator sooooooo. I might be slow at getting this accomplished. But I am not trying to ignore you if I am slow at calling or texting/Facebooking you back.. 












3 comments:

Allison said...

Thanks for the update. I am sad that he is in the ICU where you can't bring cutie Asher. I know this is best for Gator, but I hope for your sake he gets a transfer back soon. Go away fungus! Go away bacteria! Go away yellow skin and eyes!

Love you guys!

The Hicken's

TiffanyW. said...

Our thoughts and prayers go out to this sweet boy who has been through soo much! And your cute family. Hope the infection goes away and he can come home asap! 😊❤️

Summer said...

So sorry to read this!! Prayers for a quick strong recovery🙏!! Those dang immune suppressants that we love and hate!!! So glad they found the problem though!!! Hugs❤️❤️❤️