09/03/2026
12:00 Update: We have been unable to wean John's FiO2 again.
Continuing to need some doses of morphine for pain.
It sounds like our big multi specialty meeting may not be today. Its been difficult to coordinate with everyone, but right now they're certain by tomorrow.
2:45 am Update: Pain/agitation even with the continuous precedex and morphine every 2 hours. FiO2 had to be increased again from 30% to 40%. His lungs sound much junkier than they did yesterday.
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Day 6.
I'm not sure where to even begin with this update.
First, we did trial a wean off the precedex drip for most of today, but by this evening, John's pain and agitation were so awful that we had no choice but to turn it back on, and add morphine too. The full face mask that we have been alternating with his regular mask, for the purpose of allowing his face wounds to heal, is something that John is not tolerating at all unless he is heavily sedated.
The plan was to go home with both masks, and alternate every 4 to 6 hours to allow his skin to heal and prevent further breakdown.
We realized today that this is not a viable long term plan.
Which brings me to our main update: We've decided that moving forward with a trach is in the best interest of John's comfort and life.
We had a couple of very long and difficult conversations with John's pulmonologist and palliative doctors today. Our pulmonologist has been absolutely wonderful for John. He has always respected the medical decisions we have made without backing us into a corner and pushing anything. And he has bent over backward to help us meet our goals for John. I know the Lord has used him as a means to preserve John's life this long. And due to the relationship he has built with our family, he has earned our complete trust.
And because of that, we have always said that when this doctor tells us that we are truly at the point of a trach being medically necessary, we would take that very seriously.
And today, that happened. He truly believes we are medically at that point of absolute necessity. He told us that a trach at this point in John's life is a life or death issue.
John's pulm did give us two other options besides the trach that he is willing to support, but does not believe to be wise. One option is to take him home on his current bipap mask that he has used for a very long time. This comes with the considerable risk that John's current abscess will not heal, it could tunnel into the bone quickly, and we would be dealing with sepsis, possible surgery, and a long hospitalization. And that would eventually happen. Not if, but when. And several of our doctor's opinions is, that would come very soon.
The second option was the plan we had even yesterday. Take John home with both his current mask and his regular mask and alternate them. Again, we learned this won't work as John cannot tolerate the full face without heavy sedation.
John's pulm simply does not believe we would have very much longer with him if we chose to take him home on any bipap mask.
He does believe we have a good chance of considerable more time with John if we chose a trach.
This is the heaviest decision we have ever had to make for our baby. The burden is agonizing. This decision came with many tears and pleading that the Lord would give me peace about a decision. We have tried many non-invasive options for two and a half years now, but nothing has worked well. We do feel a heavy burden of guilt that we could not make the bipap work. A burden of guilt wondering if there is anything out there that we have not tried. Any stone left unturned.
But this decision has also come with some peace, and hope for our baby. Hope this will preserve his life for years to come. Hope that our home life as a family will be more peaceful if we don't have to worry every moment of every day about codes, chest compressions, and praying the ambulance gets to us on time.
Hope that John will be comfortable and happy.
We do have a conference planned for tomorrow that will involve John's pulmonologist, palliative doctor, PICU doctor, and ENT. We will have the opportunity to ask any more questions we think of tonight, and make a plan moving forward. Our doctor told us that if we still feel this is the best decision after that meeting, that he anticipates getting us into the OR by end of week.
After surgery, John's pulm told us that we will have to stay hospitalized for a month minimum, and that many children need two months before going home.
Please pray for this meeting tomorrow to go well, that the Lord would continue to grant us peace about this decision, that John will be comfortable, safe, and happy, and that it will be what he needs to grow and live for many more years.
