We saw our feeding therapist last Tuesday and decided to end therapy until after surgery. This made me SO sad because Abby has made so much progress in the last eight months, but we really have to focus on getting as many calories as possible into Abby without burning more chewing higher textures. We have met with a nutritionist several times last week and she gave us some good ideas. Our goal now is 1,800-2,000 calories a day...typically kids eat 1,000-1,400. The feeding GI (whom we love) met with us to discuss putting Abby on an appetite stimulant. They had always been reluctant in the past, but now everyone agreed that this was the best thing for her. She's been on it for 3 days now and we haven't seen much of a difference, but we are still working her up to the full dose.
Her weight was down at that appointment, and I was so concerned. How could she be losing weight when she's getting so many calories?! Thankfully, we weighed her again on the same scale at our pulmonology appointment on Thursday, and it was up. (Then we weighed her 2 more times just to make sure!!)
When we met with our pulmonologist, she had Abby do a walking pulse-ox test. We took a brisk walk, holding her hands to keep her moving. We saw that her oxygen levels were great in the beginning, then dropped as she lost her stamina. We were able to get them back up by encouraging her to take deep breaths, but it is still concerning that a brisk walk causes her to drop.
Our pulm is typically pretty conservative, but after reading the reports from CHOP and talking with us, she agreed that this sounded like our only option. She did give us some great questions to ask and things to keep an eye on during post-op.
On Friday, we officially scheduled Abby's surgery for July 29th. Matt gets home from Momentum on Sunday night, we leave Monday morning, and surgery will be Tuesday. The good thing is that Matt will be able to stay in Philly through the weekend before heading home for Absolutely Awesome (a middle school program). He'll hopefully be with us through the "worst" of it and there is always the possibility of coming back if it's truly necessary. It would be much more difficult for him to get back if it were one of the weeks he was away on a trip.
It looks like we will be back in Philly in May for the dynamic MRI, scans, xrays, and lots of meetings with various doctors. A few weeks before that, we will have to meet with the anesthesia team to make sure that everyone is on the same page as far as Abby's airway is concerned. While it's inconvenient to have to go up there a separate time, we appreciate that they are concerned and want to make sure they have everything carefully orchestrated before she goes under anesthesia for the MRI. We don't mind the drive!
A few months ago, I talked with a friend whose husband was dealing with cancer. We chatted about how it is easier to write about medical stuff than our reaction to it all. That's about where I'm at right now. I can give facts, I can explain to people about how the surgery will be done, I can talk about the subsequent surgeries...but I lose it when someone asks about how I'm doing. (Or when someone prays for my mother's heart, apparently, since I had to make a quick exit from Sunday school this morning before they saw my ugly cry!)
Please, please pray for us. This has been really hard on our whole family. Committing to this surgery is committing to 30, and it's a major life change. Caleb is worried for his sister, and he's had several conversations with us about how she is going to recover. While yes, we are typically pretty strong and have learned to roll with Abby's medical stuff, this has really thrown us. There have been lots of tears without warning this past week, and we could really use your prayers....and hugs, if you see us!
That being said, I don't mind talking about it...as long as you don't mind a few tears...or maybe an ugly cry! :)
Specific prayer requests:
* Abby needs to gain about 5 pounds in 5 months. This is a HUGE task, as she gained just under 5 pounds in the last YEAR.
* The scoliosis and lung functioning will not get worse. If that happens, surgery will be moved up.
* The airway issues will not be a problem during the MRI or the actual surgery.
* Caleb will continue to voice concerns and talk to us about how he is feeling.
* We will feel at peace with our decision. There's a lot of anxiety.
Thank you so much for praying!!