ICU who? Mack's out of the ICU!
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Mack Lutz
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Mack Lutz
Remember the intracranial pressure that was being managed by the extraventricular drain sticking out of his head?
Well, it has been removed!
And it was crazy.
It was buried about 4 inches in he head, so when the neurosurgeon pulled it out, it seemed like it kept going forever. Ultimately it was relatively minor - they did it right in his ICU room and it took a couple minutes to cut some stitches, remove the tube, and retie a stitch that they had put there during the primary surgery, specifically for this purpose - to close up the hole left when they take the tube out.
While it was minor, Mack was really scared the whole time. And that makes sense as this kid has been through the ringer in the past week and a half.
After taking the tube out, we needed another day in the ICU to monitor his vital signs and the nurses were doing a neuro check every hour, all night long. That included normal vital signs, but also checking his pupils reactions to light, assessing his ability to squeeze, move his toes, and answer a couple questions about where he is, etc.
Well, it has been removed!
And it was crazy.
It was buried about 4 inches in he head, so when the neurosurgeon pulled it out, it seemed like it kept going forever. Ultimately it was relatively minor - they did it right in his ICU room and it took a couple minutes to cut some stitches, remove the tube, and retie a stitch that they had put there during the primary surgery, specifically for this purpose - to close up the hole left when they take the tube out.
While it was minor, Mack was really scared the whole time. And that makes sense as this kid has been through the ringer in the past week and a half.
After taking the tube out, we needed another day in the ICU to monitor his vital signs and the nurses were doing a neuro check every hour, all night long. That included normal vital signs, but also checking his pupils reactions to light, assessing his ability to squeeze, move his toes, and answer a couple questions about where he is, etc.
Out of the Frying Pan (ICU), Into the Fire (Figuring out How to Keep Him Safe)
The last few days in the hospital were largely uneventful and full of waiting. But yesterday (Thursday, 8/7), we came home!
The easy part is done...
Mack is recovering well, but we have huge hurdles ahead of us:
- Mack will undergo a year or more of chemotherapy and radiation.
- He will also need physical therapy and recovery support to help rebuild strength after surgery and treatment.
- Medical bills are already piling up from the hospital, and more are coming as treatment continues.
- All of Mack's parental units (Graham, Heather, Crystal, and Chris) will likely have to take unpaid time off to support him in his care and treatment
- Mack’s doctor has emphatically emphasized that he must have his own room – because even a simple cold from a sibling could be life-threatening and delay or derail treatment. That means a $50,000 home remodel is now a medical necessity, not a luxury.
Next Week
So far, the schedule for next week includes
- An appointment with the Neuro oncologist
- Consult with the radiation oncology at the proton therapy center
- physical therapy
- Occupational therapy
- Surgical procedure to place an injection port for chemo
- Lumbar Puncture
- Neurosurgery follow up
- CT Scan
And it only took 3.5 hours on the phone to get it all scheduled!
Thank you all for all the support - Mack feels very loved and the rest of us could not have survived the last 2 weeks without the outpouring of love and support we've gotten from this group.
Graham Lutz
4 months ago
Comments
Totallygrace
Tombarone
Rcapone
Leslie Friedman
Graham Lutz
rose ash