1 year + 26
1 year +26
The last few weeks have felt overflowing with appointments and tests and procedures. Most of them ending in not so happy conversations. Restarting the same immunosuppressant that Tate started when she was 9 with the rheum portion of this journey feel’s defeating. Tate is scheduled for IVIG next week Wednesday and Thursday. It isn’t the meds themselves that are hard-I’m grateful to have access to something so many don’t. It’s what they represent….a facet of a misunderstood disease that we had prayed so hard was eradicated. I can see that Tates FISH study is back which will tell us if the MT8 is back as well. I don’t have access to read the scan, so we wait.
We’ve had some happy things happen amidst the tough stuff. A couple weeks ago we took the TPN out of Tates IV bags. We were cautiously optimistic but wanted to be sure Tate could stay off the TPN before we shared this huge news. Things are going well in that area! Tate still gets 2 L of fluid overnight and sometimes an extra L during the day, but she’s been eating to stay off the TPN. Next step is getting more fluids through her J tube so we can swap the broviac for a port that will be reserved for supplemental fluids, infusions and labs. Tate was on TPN for over a year. That’s not typical for transplant kiddos. with all the damage to her GI tract from the Behcets ulcers, we weren’t sure if she’d ever heal to normal function. She still has challenges with slow motility, but is doing well in the GI area!
More good stuff…
Yesterday we received news that Tate was chosen by an organization called Kids Need More to attend their Fundraising Gala in NY and meet her donor for the first time on stage. Tate and I ended her OT session in happy tears. We love this young man (no name yet and haven’t connected) and can’t wait to officially squeeze him and make him part of our family. Lots needs to come together, so big prayers that this all works out.
Our frequent visits to the hospital the last few weeks have been punctuated by getting to see our friends Angie and Emma. From Wyoming, Emma is 19 and received a liver transplant before her first Birthday. Keep her in your prayers as she’s having complications. We’re sad they’re still inpatient but are thankful to give them regular squeezes. Tate and Emma spent some time together n the teen zone yesterday. I’m so grateful for my medical mom friends. Everything is better with a friend.