Together, We Pray

💟Hi, family and friends. I wanted to give you an update and ask for prayers.💟
The external port that's used for dialysis and plasma pharesis treatments, on Brandon's chest, needs to come out. Because it outside the body and leaves a large opening into his jugular, it's very vulnerable to blood infection. The transplant surgeon said that it's been in almost a year, and that's the max she's ever seen it be in someone without major, life-threatening infection. It's been determined that Brandon is now a "permanent dialysis patient", and he needs safer access for it in the long term. Hearing that new description of him was very emotional, as you can imagine.
Brandon is very excited to get rid of his chest port. He needs to ask me to tape him up with plastic wrap and medical tape for showers, and he has to be super careful in there to not un-tape any of it. Having new access for dialysis will be under the skin, requiring a needle several times a week...but it will allow this kid to hop in the shower without help from his Mom...the ability to swim (Alleluia!), the possibility of actually going on his Make-A-Wish trip in the (not-too-distant) future...and most importantly...not having a huge tube hanging on the front of his chest that requires he live with incredible caution so not to bump it, have anyone else hurt it, etc. He sleeps mostly sitting up, on his back...and really, really wants to sleep comfortably on his side again. He also wants to not be self-conscious in shirts, fearing that the big lump on his chest shows. He was super embarrassed by it this summer, and was wearing this hot fleece vest over his t-shirts whenever going out or riding his bike on our street with his friends...he finally told me he was trying to hide the port...and it broke my heart.
Bran's arms were ultra sound-ed a couple of weeks ago to get a good look at his veins to prep for this surgery. The next and most ideal step would have been to create a stint in his lower arm/inside wrist area. That's the creation of a large juicy vein used for easy access, by grafting together multiple veins. A stint can last for many, many yrs. The ultrasound showed that none of the veins in his arms are usable for that, they are too small. This was a very big blow for Matt and I. The stint could have lasted well into adulthood for him. Based on the results of the ultrasound, they are going to put a graft in his upper arm, like on the front of his bicep area (sort of). It's not ideal because it's large, will be a pretty big disfigurement for Brandon's arm, and there will be a large tube visible under his skin, as well as the graft itself...which was described to us as a piece of plastic that's shaped like a brick (only smaller). The reason this is not what Matt and I were hoping for is because it lasts for a much shorter period of time than a stint. I've assured Bran that we can have long sleeved shirts altered to a short sleeved length that can cover his graft comfortably. The surgeon told me last week that she's seen this kind of graft last for months, or 5 years. His surgery will be in a few moments, and God willing, we'll be home tonight. It's a 2 hr. surgery. It takes 6 wks of healing and scar-tissue build-up before the new access can be tried. We won't know if the surgery was really successful until then. And the current, external port can't be removed until we have a good working new access...so 6 more weeks with the chest port. The graft will be going into his right arm, since he's a leftie, so he'll have the healing graft on the same side of his body as the chest port...it's a lot for him to endure.
Brandon is very upbeat about all of this. He told me last night at bedtime that he was excited. He doesn't know there's a plus or minus to either the stint or the graft, he didn't take in the details when the surgeon explained everything...he was totally fixated on being thrilled to get rid of the chest port. Matt and I do NOT share speculative info with him. If something about his illness is a "maybe", or just a possibility (and that describes all future prognosis), we do not feed any of that to him. Living in fear about a "might", "maybe", "could"...that's not where God resides, we know this. I was very internally emotional when we got the news that the stint wasn't do-able. But I spent that day just praying, "Lord, thanks for the reminder that you are in charge of all of this....you were in charge before, now, and in the future. Nothing has changed in that regard, nothing." We are asking that everyone offer up major prayers for the success of this surgery, on today and beyond, as it heals. I had an incredible time of Spiritual Direction when I was on the OLPH women's retreat this past Sept. I was talking with one of the friars, who happens to be a friend, and he told me, "We don't have Grace for the future or the past...we only have it NOW." So Matt and I try to stay in the now in regards to all of this. Thanks so much for the love and prayers that we know will flow out of all of you for Brandon, and for the 4 of us.
Peace to ALL our hearts~
Brig