Life has been soooo busy lately - not really with any huge drama (praise the Lord!!!), but with the sorts of things that tend to take up far more time than I think they'll take. Each day I plan to write an update but by the time I can sit down at the computer, I'm too tired for anything but sleep. I'm glad to say that most of our extra busy-ness has been of the happy sort or at least not of the terribly serious sort.
Maybe the most exciting news is that we got a (new to us) bus!!!! The Ride to Give fundraiser raised over 100% of their goal and we are thankful beyond words for everyone who gave, donated to the auction, bid, shared, prayed, or helped in any other way. I'd had my eyes set on one particular bus for months and month after month it remained available for sale, but when the fundraiser ended and I called to purchase it, I learned it had just sold a week or two earlier. I was a little discouraged for a bit before remembering that if that was the bus the Lord had for us, it would have been available. It was very important to us to find a bus with a lift in the front as opposed to the back. The overwhelming majority of buses have lifts in the back because they are used commercially and if someone is wheeling a wheelchair into the front of the bus, it blocks traffic coming in through the passenger door. We wanted the lift in the front because we wanted Noah's wheelchair to be in the front of the bus - these buses are loud and I felt that if he was in the back (as he'd have to be with a rear lift), I'd never be able to hear him or his pumps.
Long story short, when the front-lift bus I'd been eying was no longer available, we weren't able to locate another front-lift bus that was even close to do-able. They were VERY expensive (tens of thousands over our budget), very very old with significant problems, too small, etc. The dealership selling our first choice had a second rear-lift bus available and made us an extremely fair offer on it, and when over a week and a half of searching didn't yield anything else remotely suitable, we decided to go for that bus. It has a gas engine of the type highly recommended by our mechanic which means it will be far quieter than our current diesel bus, and Matthew pointed out that since I really can barely hear Noah or his pumps with him in the front of this one, it can't actually be much worse with him in the back and may actually be better given the quieter engine. The bus has more seats than we can use (over 15 means getting a CDL) so we'll remove extra seats from the back and put him as far forward as we possibly can.
At this point we are just waiting for it to be delivered from Omaha. The dealer is working on getting someone with a step-down trailer and then we should be able to get it here pretty quickly - we can hardly wait!!
In addition to bus shopping, I've been extra-busy dealing with Noah's central line site. He's been to the local Wound Healing Institute a couple of times with changes to our dressing protocol each time, had his antibiotics switched all around, and more. The great news is that the large (6 inch square) of open and bleeding skin is at least 80% better. Only the deepest areas of raw skin are still bleeding at all and much of it is healed completely. The not-as-great news is that the actual insertion site of the central line is continuing to bleed and ooze thick green stuff. The surgeon at the wound clinic is remarkable calm about this because (and only because) Noah is on two of the most high-powered antibiotics that exist as well as an equally powerful anti-fungal and is doing well clinically (no high fevers, etc.) He did say Tuesday that things could change for the worse quickly once we stop the IV antibiotics and that if that happens Noah would probably lose the line. Jeff and I want to avoid that at ALL COSTS - Noah is running out of good access, a new site may be as unable to heal as these last ones, and of course we just don't want Noah going through another surgery. It's been a bit hard to stand in my shoes for the last couple of weeks as everything the wound clinic is ordering is about 5 bazillion miles outside my comfort zone and goes against everything that every other doctor and nurse says to do. (For those in the know, they don't use sterile ANYTHING for central line dressings - plain non sterile gloves, no masks, non-sterile dressings, and they don't use chloroprep or anything similar . . . just non-sterile gauze and water. Yes, this absolutely terrifies me.) On the other hand, they are known for getting excellent results so it's hard to discard what they are saying.
Dr. B and I have discussed this at length and it also makes him uncomfortable. Per his recommendations, I'm following their directions to use only gauze/saline, BUT everything I use is sterile. He said he's willing for us to try it "their way" as long as Noah is on these antibiotics and as long as the site doesn't get worse. It's always difficult when there are two dramatically different schools of thought. I'm not a medical professional and am not capable of knowing which way is best or safest, but I do know there's no way I'll ever touch a central without sterile stuff. :-) I really don't know how I feel about just using saline/gauze to clean the area. I do know Noah LOVES it because it means dressing changes "aren't ouchie" so if this turns out to be OK long-term, I'll be happy to spare him the pain, but I also think that our line surgeon might just have a heart attack if hears about this so we'll just have to see. Right now the only thing that matters to me is getting this site healed!!!!
We've had a couple of new nurses here training and hope that we'll soon have a very stable and predictable nursing schedule.
I got a call from the pediatric sleep medicine office just a little while ago and they want to see Noah tomorrow to get him set up with Bi-Pap. Their first regular appointment wouldn't be for three months but Dr. B wants Noah to start as soon as possible so they offered to see him tomorrow afternoon. He'll be fitted with his mask(s) and they'll do whatever else it is that needs to be done all in that one appointment. After that, it's just a matter of getting it ordered and delivered so we should be able to start within just a couple of days. This entire process needs more prayer than I can say. First off, Noah is very frightened of things in his face. He tolerates his O2 reasonably well but there are miles of difference between an O2 cannula and a Bi-Pap mask. Second, Bi-Pap itself can be very difficult to tolerate even for adults, and last but very certainly not least the masks are infamous for causing skin irritation/breakdown even in children with healthy skin. I'm concerned about running into problems with his skin breaking down and not wanting to heal just like we are dealing with on his chest. No one is able to figure out why Noah has lost the ability to heal well so this aspect is the one that is causing Jeff and I the most concern. On the other hand, CO2 retention is nothing to take lightly and we agree with Dr. B's take on things - that right now Noah is dealing with a lot of struggles that we CAN'T fix or help, so we need to fix or help in every instance where doing so is possible so that he's got more reserves to deal with the "unfixable" stuff.
I've always told Noah that he's really good at doing hard things and he's often surprised me by facing challenges I'd thought might be insurmountable. It might not be easy, but I do believe that with God's grace he'll be compliant with the Bi-Pap and we just need to trust the Lord and the wisdom of the doctors and RT's to prevent his skin from breaking down. If anyone has a particular mask or item or technique that I should ask about tomorrow, please do let me know. This is 100% uncharted territory for me and it's always a blessing to get wise counsel from those who have "been there, done that."
I'll be sure to update with how he's doing and with pictures of the bus when it gets here! I've also got some very special photos of Noah that I want to share, but if I get up and walk away to get the pictures uploaded, I may just never make it back to this post! :-)
Blessings,
Kate
