This is a photo of Brett when we were in the waiting room at UNC for clinic last week. He was seen by his pulmonologist, Dr. S, and got a good health report! The main thing is that we are finished with IV antibiotics!! Since December 17, either we've been IN the hospital, or on home antibiotics.We are so happy that not only does Brett not need them anymore, but we are also so tired of having to administer them every 6 hours. That's round-the-clock, even at 3 and 3:30AM.
Weight: The same. About 21 pounds and 7 oz, or 9.55 kilos. The great thing is that he was able to maintain his weight throughout the last couple months of illness! The not-so-good thing is that since he hasn't gained any, he is still sort of on the brink of a nutritional "crisis." Do you remember way back when I blogged about trying new formula? That didn't actually end up happening after we found out the extraordinary cost of the formula. Even with 2 free cases a month, it was still going to run us $800-1000 a month. We wanted to try every other option we had first. At last week's appointment, we discussed at length the different options we might have - with the doctor, social worker, nutritionist, and special infant care coordinator all in the room.
I got some names of foundations and agencies that help people that have children with extraordinary medical needs. But the best thing was that since we switched insurance on January 1, the new insurance plan will PAY FOR THE FORMULA!!! Also, our home health company provides it, so they will bring it to our doorstep every month without me having to remember to get online and re-order, the way I've been doing. Also, it comes in pre-mixed bottles! I've been mixing formula for almost 2 years now! By the way, though, I will be finding somewhere in North Wake that will take #5 bottles for recycling - we will be using over 200 bottles a month!We are so excited to be able to try this formula and needless to say, we have high hopes for this stuff!
Venous Access: PICC line was removed in clinic on Jan 18. Brett has no IV access now.
IV Meds: IgG (immunologlobulin infusion once a month)
Deep Pharyngeal Swab: Culture on Jan 18 -No information yet
Next Appointments:
February 11 - IVIG infusion
February 18 - clinic (pulmonology & gastroenterology)
March 1 - immunology
Yippee!!! New food for Brett, a little less work for Mama, and a budget break for Daddy. Life is good.
ReplyDeletePraise the Lord for insurance and a good report!
ReplyDeleteWow what wonderful news about the special formula...pre-mixed, and the new insurance covering it and the delivery to your doorstep. Miracles do happen!
ReplyDeleteSo glad you are done with the antibiotics. Super exciting news on the formula....and insurance actually covering it! Wow! I hope it lives up to your expectations!
ReplyDeleteThis is GREAT! And I know you and Rob will enjoy the 'extra' time/money you have not making/buying formula!
ReplyDeleteAnd I'm so happy he's off the antibiotics for now. Hopefully as spring approaches, he'll have fewer and fewer infections.