The last few weeks have been a bit of a beat down medically, but I always try and remind myself that regardless of circumstance we are held by a loving Father who has a plan and uses all of our trials for his Glory.
You know I never like to focus on the negative so I am going to start with some good first! Alex just finished the first week of classes. He has thrown himself in full force as he tends to do. He lives each moment to its fullest as he knows our time is not guaranteed better than most! He has 5 classes this semester and thinks he will enjoy them all. He has two professors that were with him on his trip to Boston and understand the extent of his medical stuff more than most. He has been asked to mentor and captain the JV team of his Esports team along with one of his best friends.
Maddy and I just finished our second week of school and it has been really good. She has worked hard and been extremely well behaved for me. She is also back to her twice a week dance and art classes. And after a little break at the barn while we let Quigley get some new shoes and recover from his hard work at the World Show, we were back to riding yesterday and there were huge smiles all around. Maddy's tutor also reached out to let me know that she feels like Maddy is doing well enough to go back to one day a week tutoring as she no longer needs any intervention in reading and they will just work on spelling and writing.
Okay here comes all the medical....
After 5 years of no real changes in Bruce's testing, this summer brought a few red flags. There was growth in the lesions on his kidney along with potential corresponding lab changes. His oncologist felt it was imperative to send him back to the urologist. After an appointment and some further labs, the urologist decided to take a watch and see approach and will see Bruce again after his next scans in December. He also had another colonoscopy where they removed two more polyps. We do not have results back yet, but his colorectal surgeon said he is pretty sure they will come back pre-cancerous and that he will never to go longer than 3 years between colonoscopies for the rest of his life. He does not think any further treatment will be necessary, but will reconvene after biopsy results come back.
If you have been reading our blog for a while some of this will be a repeat as I explain central lines. Alex's port (central line) is a necessary life sustaining tool. It is also what will most likely be the cause of his death one day. Central lines are "permanent IV's" that are inserted into large veins and end in the atrium of the heart. Alex has had a central line since he was 3 and it is the source of his nutrition and many meds. We also use it for all blood draws as Alex's vein access is almost non existent (like having to be stuck 12-15 times and often still no blood). While Alex's line is necessary it also carries major risk. Every time you use the line it is a sterile procedure and re-access and dressing changes require completely sterile protocol (similar to what is done in surgery). An infection causes sepsis and sometimes septic shock. Infections can happen either by mistake (not being totally sterile when handling the line) or translocation which has often been the case for Alex. In Alex's case his GI system is so diseased that bacteria can leak into his bloodstream and it likes to attach to a foreign substance AKA his line. Okay so now here is what is going on... Alex's port is leaking at skin level. It is hard to keep his dressing on (which is necessary to keep it sterile) and also leaves his skin around the port wet which could breed bacteria. The week before school started we reached out to surgery. They did some testing and according to them the port is "working". They think his skin is so weak due to 18 years of port accesses and that is at the root of the problem. However, the leaking continues so we had to do multiple dressing changes this week instead of just one and has Alex and I both concerned. We will re-access his port today and hope it improves. We are trying to figure out the best way forward to keep him safe, but also not have to miss large amounts of class time.
My Maddy Moo...you would never spend time with her and have any idea about all she has going on. I am not sure how she accomplishes all she does, but I am amazed by her grit, determination, and commitment to doing what she loves despite any challenges. I will start with her joints. We had an appointment with her physical medicine and rehab doctor (who is amazing). Maddy's ankles and knees are in bad shape. her joint instability is significant enough that her muscles are no longer firing like they should. She often has her joints give out on her (especially on stairs) and she has some level of chronic pain in all these joints. We are not quite ready to tackle her first major knee surgery so her doctor is going to have us use a NMES machine to try and force those muscles to contract and not lose any more muscle mass. We should have our appointment soon to get our machine set correctly and learn where we need to place the electrodes so we can do this multiple times a week at home. Maddy also continues to experience lightheadness, dizziness and migraines due to her POTS and neurocardiogenic syncope. She is on 4 medications and while it is a bit better it is still a daily issue that makes everyday tasks difficult. The biggest issue right now is some bladder/kidney stuff. She has struggled with bladder stuff for the past several years, but we have never been able to really get answers on the cause and therefore a treatment. However, some new, more concerning symptoms have been going on since May. The urologist has kind of thrown her hands up so I made the decision to take her to our beloved, amazing pediatrician because I knew he would get to the bottom of it. He ran 4 tests last Monday and we are waiting on all results before we decide next steps, but so far the 3 that have come back are not normal. I am hoping Dr. B can come up with a plan and we can get her feeling better soon.
As for me, I haven't had a minute to focus on my issues. There is no treatment (that doesn't cause more issues) for my biliary reflux and bile induced gastritis, but the medications I am on have made it manageable. I am EXHAUSTED despite sleeping 7-8 hours a night. I am unsure if it is my chronic anemia or my thyroid levels or something else, but I am hoping to get some labs soon to see if I can find a way to be less fatigued day in and day out.
If you made it this far, thank you for reading all of that. We would covet all prayers for our family and especially the kids as they try to continue to Choose joy and live life fully while managing a disease that is relentless and forces their bodies to betray them at every turn.
Ali
The link to support Maddy's barn for North Texas Giving Day!
