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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.

Monday, March 7, 2011

Todays visit

I am glad to report some good findings today. When we got to PCMC they did an X-ray and then we went in for his routine test...EKG,Saturation, and blood pressure. Gator was not a fan of the stickers today and we had to wait until he was home to get into the bath to soak them off. He also hated the blood pressure and I ended up putting his nose in the corner for treating the poor nurse badly. Then I made him apologize to Kelli and he got bubbles from her and he was perfect the rest of the visit. I don't want him growing up thinking he can manipulate and be rude to others because he needs extra care. Nope, he will be kind and polite. Then we chatted with Dr. Su. Dr. Su thinks that Gator is looking really good his 32.2 lbs were impressive and he sounded great. So the mystery is why he is now needing oxygen. We think it all boils down to getting sick. It is doing a number on his little body. So we now have a couple goals. We would like to
1. Get him 100% well from his bug. This takes around six weeks to fully recover from.
2. Set up a Cath and sedated echo to get the ball rolling for surgery.
3. Try and ween him from his oxygen. YYYYAAAAAYYYYY
Dr Su thinks he is only O's dependant because of how hard it has been to fight off this last bug. He thinks we can drop the O's in a couple weeks. I am sure hoping.
That is our update. We are moving ahead with all the necessary things that will get us closer to having him all better.

9 comments:

Lacey said...

You gave me a flash back!! I was taking care of this little girl, around 7, that had heart surgery. I was getting her ready to go down for her x-ray, and she was such a brat to me and was so rude. I thought to myself that if I had a child that needed a lot of medical attention, that they would never act like this, no excuses!
I'm glad he's looking good and things are moving along!

berrymom said...

That is so great to hear! Good luck kicking the bad bug. Thank you for your sweet note on my blog...it made my day! I definitely remember the requests for "just 5 more minutes...I promise I'll do you 5 extra...snore, snore." Ahhh, what good memories. I will definitely take you up on your offer to pay me back now :) We got through the CAT scan today and are waiting to hear the results. Hopefully everything is A-OK! I'll let you know. I love you!!!

Kaidence's Mommy said...

Dang, he weighs as much as Kaidence!

Chelsea Michelle said...

YAAAAAAAYYYYY So berry happy!!! Keep sending good news your way and ours :) Love ya dat ma nice.

Kyle and Alli said...

I do hope that he starts to feel better soon so that he can loose those O's. Good for you in helping Gator to recognize that respect for others carries over into all areas of life. I hope that I can be that consistent in teaching my kids!

Melissa said...

Get better fast, Gator!!

J.B. said...

YAAAAAAYYYYYYYYYY!!!!

likeschocolate said...

I knew he had to weigh more than Roman. Praying for Gator to get better soon and ween off oxygen.

Angee and Thom said...

I'm glad to hear the O2 need isn't heart related. Severin is back on O2 due to a cold also. Good luck with your goals. Way to "GROW" Gator, hope you are feeling better soon!