We met with our wonderful line surgeon, Dr. A, today and have come up with a plan of attack.
He expressed the same concern that our urologist has repeatedly expressed - that the root of this entire issue is that Noah's body will no longer tolerate foreign bodies. Unfortunately, Noah's life literally depends on our ability to keep some little plastic tubes in place and functioning. There does seem to be some element of infection in that the problems with his lines get dramatically worse when we stop antibiotics, but no one really believes that this is just a simple straightforward infection. If it were, the surgeon would pull the line, treat with antibiotics, and place a new line - and this would "fix" the problem. We did this twice in October and it didn't make any difference.
Basically, there are two possibilities. One is to treat Noah with I.V. antibiotics indefinitely - possibly for the rest of his life. This is likely to be life-shortening as it could lead to the creation of a superbug and/or yeast sepsis. The other is to pull and replace this line in the hopes that maybe somehow it would work. This is no small undertaking for him and if we are looking at an underlying problem with Noah rejecting foreign bodies, it would not help at all.
Both of these choices come with very, very significant risks and neither one is likely to actually resolve anything long term. I told Dr. A that I felt like we were caught between the devil and the deep blue sea and he said that this is exactly the case.
To subject Noah to surgery that is unlikely to help is unthinkable.
To subject Noah to long term antibiotic treatment that could shorten his life is unthinkable.
In the end, we decided that we needed to give Noah's body one more chance to prove us wrong. We can't do the long term antibiotics if there's even a tiny chance that a new line would do better (and it is a tiny chance). If we lost him because of side effects from the antibiotics, we'd always wonder if there was something else we could have done.
We are taking this in slow, measured steps. Noah is stable. I can't emphasize that enough. Dr. A smilingly said that he was reassured to see "the same old Noah." He isn't running a fever and he isn't acting sick. This is very much to our advantage. Dr. A is going to do a bunch of research into finding a suitable central line that is NOT made of silicone and that is possibly impregnated with antibiotics. Please pray for wisdom and God's leading in this. Not all lines are created equal - Noah needs one meant for long-term use and he needs one that has at least three lumens. He can't have a port and he can't have a line that couldn't be fairly easily removed in the event of a serious infection. Dr. A said that if such a line exists, he will find it. We must pray that he does.
Noah is scheduled to go back to Columbia next Friday, February 28th. Dr. A will do surgery to remove the current line and replace it with whatever type of line he deems most suitable. Noah will spend the night in the hospital and we hope to bring him home on Saturday. While it would be ideal to pull this line and treat through a PICC line for several days, Noah has no PICC access and so this strategy was deemed to risky.
I don't know where this new line will go. I don't know if we can use either jugular again. Part of me just keeps wanting to throw up knowing that we are rolling the dice like this . . . and then another part of me reminds myself that we aren't rolling the dice. We prayed very specifically that the Lord would give Dr. A the right plan. We believe that in trying one more line surgery one more time, we are giving Noah the very best shot at avoiding long-term antibiotics and all that they entail. If this succeeds, it succeeds. If it fails, at least we know we really did try and we will do whatever we have to do to keep Noah feeling great and staying infection free for as long as we can.
We talked about the amazing quality of life Noah has had for the last four months, and about the fact that these four wonderful months were bought at a price. If it comes down to it, we will continue to pay that price to continue to give Noah that kind of quality of life. I once wrote a post about needing to know what we are fighting for - whether it is just for more days of life or is it for the best days possible. We often summarize our goals for Noah as "happy days at home." That's really it in a nutshell! We want him to be happy and enjoying the best quality of life possible, and we want this happening at home, not spending more time than necessary at clinics and doctor's offices and hospitals. We're blessed with an extraordinary team that respects this goal and has in many cases made extraordinary accommodations so that Noah can stay at home rather than having constant hospital admissions.
Let me emphasize again that Noah is feeling great. We prayerfully anticipate keeping him feeling great for a very long time. I'm already starting to think about maybe a Minecraft party for his 8th birthday or possibly a dragon party. Decisions, decisions!! While I don't want to down-play the seriousness of what's going on or the long-term ramifications of these decisions, I also don't want to paint a grim or bleak or over-dramatically gloomy picture because that's just not how things are. Noah is and always has been and always will be so much more than the sum of his parts. He's happy and active and we are continuing to push him to grow and learn and walk and have the best possible life he can have. No one is giving up or has any plans to do so anytime in the foreseeable future. While there is much sorrow (and if I'm honest, sometimes much fear) there is also so much hope and so much joy and so much anticipation of what the Lord has next in store for our boy.
I just can't wait for the next really nice weather forecast for Greenville because I fully intend to grab Noah, Mary Faith, and our nurse and head to the Greenville Zoo and Build-A-Bear! My mom gave me money to take the two of them to BAB back on Mary Faith's birthday when we were going to go to ortho . . . and got snowed out . . .and rescheduled . . . and got snowed out again. That money has been sitting snugly in a pocket of my wallet (and in fact has been multiplied when I realized Costco sold discounted BAB gift cards!) and I'm WAY more than ready to turn that money into a day of FUN! Days at the zoo are what we are fighting for. Giggles at Build A Bear are what we are fighting for. Please pray that the decisions made today will lead to lots of zoo days and play dates and story times and art projects for a long time to come.
Blessings,
Kate
