Well, we’re hoping that tomorrow will finally be discharge day! We’re coordinating the delivery of an oxygen machine, portable oxygen, pulse-ox monitor and NG tube supplies. I’m getting her room ready, trying to make sure that everything is in the right place. It’s kind of exciting and reminds me of bringing her home from the hospital for the first time.

She’s been doing well and only getting four hour checks, which gives her a little more time to sleep. I put in her NG feeding tube for the first time today. It went pretty smoothly. She cried and turned really purple, sats in the high 40’s, but she recovered quickly.

They did a swallow test today where they X-ray her while she drinks her bottle. We will have to thicken her formula slightly because she tends to aspirate a bit of milk. They will also be limiting the amount she can have by mouth to one ounce per feeding until she gets a little stronger and more coordinated. The other two ounces will go down her tube via a gravity feeder.

Also, they sent an ENT(that’s ear/nose/throat) over to look at her anatomy with a scope. Everything looks anatomically normal, but she’s got some acid reflux damage to her vocal chords so they’ve prescribed Prevacid which will go down her NG tube.

She also needs to see a renal specialist who will determine how much calcium she needs to prevent seizures and heart arrhythmias. And we’re waiting to hear back from the immunologist about her T-cell count, which would tell us whether or not she is immuno-compromised.

So basically this new diagnosis of DiGeorge raises the possiblity of a lot more health complications but gives us the benefit of meeting about 8 billion different specialists! So far, her heart defect and a low calcium level seem to be her only issues. The heart defect is major but the calcium is not. We were relieved to hear that she doesn’t have any major palate issues that they can see at this point and the feeding issues she has are probably more due to the fatigue caused by her heart defect than by any anatomical problem.

We’re feeling good about getting Ramona home and are trying to keep in mind that we felt pretty overwhelmed when we brought her home the first time and we got the hang of that pretty quickly. I’m sure a lot of the medical stuff will quickly become second nature. Wish us luck, we’re getting kinda cocky.

Jane.
monamae.jpg