Mark and Ali are home!!

Mila welcoming her brother home with some kisses!

Short post this evening to update everyone on what went down this week at the hospital. I am happy to report that Ali and Mark got home on Friday night about 8pm and we have spent the weekend relaxing, recovering and enjoying all being back together.

I posted on Tuesday that Mark had to have another emergency surgery to replace the shunt in his head. They left the catheter out so they could monitor how much spinal fluid was draining. On Tuesday and Wednesday he drained about 600ml which is about double what they expected him to drain. His headaches have subsided and we are seeing a marked improvement every day.
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Mark in post-op recovery room after the emergency shunt surgery.

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On Thursday Mark had another surgery to replace the catheter. They were concerned about infection, so they had to replace the whole line from the top of his head all the way down to his stomach. They reopened an incision that they made in February behind his ear and had to make another incision on his stomach.

He has recovered very well and on Friday he had an MRI (previously scheduled) and he was doing well enough to release him to come home. For both Ali and Mark's sanity we were beyond happy they let him come home on Friday. This was our longest hospital stay yet. Didn't expect that when they left on Monday but we are very thankful and hopeful that the new shunt will be effective and keep the headaches away.
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External bag used to measure the amount of spinal fluid draining per hour.

​Since March, Mark has been on an extremely high dose of steroids. We had all but weaned him off when these headaches started coming back. It was just an unfortunate coincidence that the shunt failed at the same time that he was off the steroids. We thought that the headaches were due to him being off the steroids but the headaches were a result of the spinal fluid build-up, not being off the steroids. They did put him back on the steroids while he was in the hospital but at a much lower dose than before. We should have him off again completely by the end of this week!
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Quick rest break in between doctor visits.

​On Saturday Mark slept most of the day. Nobody gets good sleep in the hospital and he was under anesthesia three separate times this week. That takes a huge toll on anyone. We were not concerned because the few times we woke him up to eat or use the bathroom he was lucid, just tired.

Mark resting after second surgery to internalize the drain.

​Today (Sunday) he slept quite a bit but less than he did on Saturday. Still, just getting over the week from hell. We are seeing improvement each day. A lot to be thankful for tonight as this weekend comes to an end. We are thankful for his team at Texas Children's that they identified what was wrong and got it fixed. Not ideal but it was what needed to happen. We are thankful to all be home and under one roof tonight. We are thankful that his headaches have subsided for the most part. We are thankful for the friends that have reached out and stopped by to say him. We are thankful for a restful weekend and are looking forward to the progress he makes in the week ahead.
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Beautiful sunset on the way home Friday night (8/23/24).

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Please continue to pray for his strength to return and to make gradual progress each day. Please pray that by the next post I can report that he is off the steroids, completely. Please pray for the strength that God has given this child. I don't know how he does it but every time I think that he cannot be any tougher he just proves me wrong. Thank you everyone for your support and love.
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