Tough News

This has been an incredibly hard week. Mercifully, in the past few months, Grayson’s disease and health issues have been in the background- always there, but not the focus of our thoughts and worry. He’s been stable- no major illnesses, no hospitalizations, and it’s been months between seizures. We’ve really been cruising right along with him (or so we thought).

Tuesday he had a routine appointment with his PM&R doctor (physical medicine and rehabilitation). Although I had several things to address with her, I really didn’t think this was going to be a “big” appointment and even briefly considered rescheduling because I have been so sick (pregnancy) this week. There’s never any warning at these appointments as to which ones I find a waste of time and parking fees and which ones knock me flat.

Lately, I’ve felt like Grayson has been more uncomfortable than usual. It’s hard to get him into a position where he looks comfortable, and even when he’s in his chair, he doesn’t last more than a few minutes without whining and squirming. The tone in his body is so high- he’s stiff as a board and his body fights getting into a sitting position; he arches his back and straightens his legs when I try to get him to sit anywhere, even on my lap. And he leans to the right anywhere we put him.

I brought all this up to the doctor and we at first discussed some options- increasing his Baclofen (a medicine he takes for spasticity), Botox injections, or surgery for a Baclofen pump, which would bring the medicine directly into the spine. Then she asked me if he’d ever had any x-rays of his hips. Yes, over a year ago before his SPML surgery. She went to the computer to try to find it, couldn’t, but found an x-ray done in December in the PACU to confirm his GJ tube placement.

The x-ray showed two major issues (neither of which were brought to my attention in December). The first is Grayson is pretty severely constipated- his colon is distended and his abdominal cavity is filled with “old poop” were her words. She felt his abdomen and confirmed this is still the case. The second issue is his right hip is completely dislocated. When she showed me on the x-ray I felt sick to my stomach.

I feel so horrible/guilty/sad about both these issues. Grayson poops every day, so I had no idea constipation was an issue. In fact, almost all the Mito kids we know struggle with this, and I’ve always felt lucky that he didn’t- or so I thought. The hip dislocation shocked me too- the SPML surgery a year ago was supposed to prevent this. I almost started crying right there in the exam room.

Our short term plan is to do a bowel cleanout at home this weekend (3 days of non-stop poop- anyone want to join us?!) and see how much this relieves his discomfort and positioning issues. Once we do this, we will reevaluate in a few months the Botox and Baclofen options. We have an appointment next week with an orthopedic surgeon to discuss our options for the hip. Our doctor seemed to think the only long term solution would be to do hip reconstruction surgery, which would be major and invasive. I want to avoid this if at all possible, especially since Grayson doesn’t walk and doesn’t require weight bearing on his hips (that and his spasticity were most likely the reason this happened). A major surgery equals major risks for a kid like Grayson, and we will really have to evaluate the risk vs. benefits of surgery. I’m not sure what (if any) other options there are, so I’m trying to wait until the appointment to really obsess about this. If you pray, could you please pray for clarity on whatever decisions we need to make for Grayson regarding his hips? As always, we are only concerned with his comfort and quality of life, but sometimes how to achieve that isn’t quite clear.

Since Tuesday, I’ve been a mess. The emotional toll of all this, combined with my awful nausea and vomiting that seems to be getting worse rather than better, has just about done me in. I had a mini-breakdown at my OB appointment this morning, and realized I’ve been disconnected from this baby- all I’ve been focusing on is how awful I feel. I don’t think I was supposed to have an ultrasound today, but after I tearfully told her everything that was going on with me and Grayson, my doctor took me into the ultrasound room and said, “Let’s look at your baby.” I’m so grateful she did. I saw my baby that 4 weeks ago was just a blinking dot on the screen and now actually looks like a baby. He or she was wiggling and moving like crazy, had a perfect heartbeat, and was measuring once again to the day- 11 weeks, 2 days. Life truly is a miracle, and never gets old, even the third time around.

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8 thoughts on “Tough News

  1. Praying for you dear friend. Asking God to send wisdom to you and to the doctors to know exactly what to do for Grayson. Asking God to lift you up and send His Holy Spirit to comfort you and your family. I cannot imagine how this must weigh on your heart, but God isn't finished. Keep trusting Him, no matter what you see or feel. Keep trusting Him. He never ever fails. And that's not my promise, it's His.

  2. Praying for you all as you navigate this new road. So glad for your doctors intuition to show you that beautiful new life! I imagine there was a certain amount of peacefulness that you experienced for even a few minutes.

  3. Your comment about which appointments are valuable or not really is point on – you just don't know what to expect which is the most disturbing “punch you in the gut” (while nauseated) feeling ever. I hope the colon clean out goes as well as it can and that it brings relief to everyone. The hip situation, you're right, try not to worry (HAHAHAHA) till you have all the info. Meanwhile, I'll be praying that a clear path forward will present itself and that the path to get there is filled with peace. Hugs to all my friend.

  4. Things will be better Elizabeth. You are doing your best and your kids are great! Under all. The responsibilities and circumstances,it is normal to feel the way you do, but it will be better!

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