It was another good day with more progress. Wahoooo! Occupational therapy saw him and tested him out on the bottle. He did great! He tolerated it well without any desats/bradys/etc. He only took in about 6 mls (about a teaspoon) over 10 minutes, and then he was finished and received the rest of his lunch via NG tube. But it was a step forward, and they're going to work with him every day starting Monday in hopes of gradually increasing the amount he can take in. Being our kid, he won't have a problem eating :) His new trach seems to be working out. He rarely ever desats anymore and never like he did before the trach. So more and more we're feeling better about the decision to go through with the surgery. They tried weaning him down on the oxygen, but he didn't like that so much. So he's on 40% oxygen (regular room air is 21%) that comes through this blue tube into this trach shield that sits right over his trach. The docs are still thinking he can be weaned off the oxygen, hopefully over the next few days or so. It would be awesome if he came home on the trach collar only, no vent or oxygen!!! We shall see. I talked to Beth yesterday, who's son Brett was diagnosed with chondrodysplasia punctata over 8 years ago. She's awesome and is so supportive and understanding having been down a similar road herself. She gave us some things to think about like nursing care and insurance. Chris and I are nervous about the in-home nursing, but we'll cross that bridge when we get to it. We hope these good days continue, because we're loving them! We're celebrating with margaritas tonight, an upgrade from ice cream :)
For you make me glad by your deeds, O LORD; I sing for joy at the works of your hands.
~Psalm 92:4
4 comments:
Wonderful news and the pictures are so touching. You both deserve the margaritas!
Kathryn and David Williams
Hi,
You don't know me but we have alot in common, my daughter now 18 months old was diagnosed similar to your son. I have a google alert set for anything that mentions "chondrodysplasia punctata" and that's what lead me to your journal, since it is so rare anytime I find anyone else even online who has it I try to contact them. Support is a large key in being able to cope with the trials of taking care of such special blessed children.
My Daughter Dorothy has Conradi Hunermann Syndrome, with it is the Calcium deposits around her spine, and shortened arms and legs, shortened hands and feet, she has semi severe scoliosis, cataracts, major skin problems (which cause the cataracts and ear drum problems), as well as some other issues with eating.
I have to reassure you though, Dorothy is the strongest child I've ever met. Every day is more of a blessing then the last, and when all you expect in life is bad news, those times you get good news are like a big ray of sunshine.
Please feel free to email me anytime
kimberry182@gmail.com
or if you feel totally intruded apon by this comment I'm sorry and wish you all the best.
Kim
Katie and Chris,
We're thrilled about Chase's progress. The pictures are great and we love hearing the good news -- tell Chase to keep it coming!
Call or e-mail any time.....we're keeping you all in our prayers!
Beth and Dave
P.S. We also plan to celebrate Chase's progress tonight with margaritas! :)
Way to go Chase!! Now that celebration is more my speed! :) I don't do tequila anymore (bad spring break experience in college), but I have a fabulous glass of sauvignon blanc. Cheers! We moved into our new house today...we'd love to have you for dinner when we get settled.
LOVE!
LA
Post a Comment