We saw Noah's sleep medicine doctor and his pulmonologist today. No one is 100% sure what these lung/breathing changes mean or what impact they may have going forward. It looks like there are 2 main issues - one is changes to his lung function due to disease progression, and the other is that the stress of the MRSA and/or the line surgery caused his breathing issues to become more acute. The acute part (the frequent episodes of hypoxia, or low oxygenation of his blood) is doing quite a bit better, but the more chronic issues may or may not improve with time. As it stands right now, we will be trying Noah on oxygen during his awake hours to see if it seems to make a difference. If it does, we'll continue and if it doesn't, we'll just stop.
While we were in Greenville seeing these specialists today, Noah's central line started bleeding significantly. Again. Our nurse called our line surgeon and the consensus seems to be that our only option is to have him remove and replace the line. It seems like there must be some blood vessel that was damaged during surgery and for whatever reason it just not healing properly. This is absolutely a catch-22. We can't have him just bleeding all of the time, but on the other hand I'm more than a little apprehensive about another surgery - I'm concerned about both the line surgery itself and the risk of breathing problems. It doesn't seem like we really have a choice though. This line drama has GOT to stop. I just want him to get past all of this and start really rebuilding his strength.
He's also due to have his supra pubic catheter changed tomorrow in Greenville. I'd hoped that if we had to replace the central line we could just do it tomorrow in Columbia and have the surgeon do the supra-pubic while he was at it to eliminate one anesthesia, but our Columbia surgeon's office called this afternoon and said that the line surgery is scheduled for Friday morning. I asked for the doctor to call back because if we are going to wait that long, I need clear guidance as to how much bleeding is too much and what exactly I need to do the bleeding becomes too much. I am hoping that when we talk, he will find a way to do the surgery sooner than Friday - Noah's nurse, Jeff, and I are all nervous about letting it go that long.
At this point our week looks like this - we were in Greenville all day today, going to Greenville for his procedure tomorrow (and told to bring a bag in case he doesn't start breathing well after anesthesia), seeing Dr. B's nurse practitioner on Wednesday, and heading to Columbia for inpatient surgery on Friday. While Dr. B usually makes house calls, he's out of state this week and wants eyes laid on Noah as soon as possible. Noah's infectious disease specialist in Greenville wants to see him in her office as soon as possible and she also wants hematology to do a work up on him. We can't just call and ask for a work up but the N.P. will be able to do so after we see her Wednesday. Between all of Noah's bleeding problems, elevated clotting times, and very low white counts, the I.D. doctor is concerned that something new could be going on with his bone marrow. I am not at all sure when the I.D. and Hematology appointments are going to be squeezed in, but I'm pretty sure it won't be before the line surgery.
I truly lack the words to explain how sad I am about all of this. Noah had been doing so, so well and it seems like that MRSA bloodstream infection set off a chain reaction and I feel powerless to stop it. (Who am I kidding - of COURSE I'm powerless to stop it. I don't understand why the Lord is allowing this but I am not wavering in my belief that He absolutely knows what He is doing here. That does not, of course, mean that I need to be happy about it.) Noah has had two 10 day hospital stays in about a month's time. Four out of five days this week will be spent in doctor's offices/hospitals with two of them involving anesthesia. I miss being at home and I miss my other children. Noah is more discouraged than I have ever seen him. He was so sad and anxious when his line started bleeding again Friday and then again today. Friday for the first time in his life he said he did not want to go home from the hospital. The poor baby has been through far too much in the last few weeks and he's going to come undone when he finds out he needs a new central line. He is weary.
Jeff and the other children are also understandably discouraged and tired of Mommy and Noah being gone all of the time. We've had such great success in keeping Noah home and out of the hospital and we've been looking forward to a fun summer filled with art classes, play dates, and trips to the park. There was a time when all we knew to expect was one hospital stay after another - it wasn't easy, but we understood that it had to be that way and we didn't dare hope for more. Now we are truly learning about hope deferred making the heart sick.
We rejoiced that he recovered from the MRSA and hoped that it was only a bump in the road.
We were distressed beyond words when he lost his central line but hoped the placement of a new line would be uneventful.
We were thankful when the initial bleeding stopped and felt that surely that the drama was behind us.
We were crushed when the line started to bleed again on the 7th but hoped that the bleeding could be quickly resolved and that we'd be home again after a day or two.
When he started desatting and was sent to Greenville, we were concerned but believed that at least the line issues were resolved.
When the line started bleeding again Friday and then again today I didn't feel like my heart could take any more at all.
I know the line bleeding must be stopped but now I'm scared to even hope for things to go well. Even if they do, we have unknown immune system and hematology issues to address and new breathing issues to which we must adjust. I want to hope for that wonderful summer but event after event is being missed with Noah being in the hospital or too weak or sick to attend.
We've been stretched to the breaking point with the expense of 20 days in the hospital (gas which is only partly reimbursed, convenience foods at home rather than more thrifty from-scratch meals made by Mommy, meals for Hannah and I in the hospital, etc. Hannah stays with me because Noah is very afraid of being left alone - she takes Jake out for his bathroom breaks, is there with Noah while I shower, can run down to the cafeteria for meals, and so forth. She is indispensable but making Noah feel secure requires buying meals for two instead of for one, and the unexpected nature of these last two hospital stays precluded our being able to shop and bring food with us.)
I keep sitting here debating deleting all of this. I feel like it sounds whiny, but I would be dishonest to act like things are sunshine and roses right now. If you've read this blog for any length of time, you've read my ramblings about walking by faith. I KNOW the truth about the Lord and His goodness toward Noah and the rest of us. I might not be FEELING it right now, but that doesn't change the fact that I know it's true. My frailty does not shorten the hand of God nor does it diminish His power. He didn't ever promise that I would understand but He promised to work all things for good and the fact that I see Him through a glass darkly does not diminish His glory. I'm holding all of that in my head and choosing to walk in those beliefs even when it feels like my heart is breaking.
As usual, I tend to do a better job of quickly updating Facebook but will try to update here as possible. I've just learned how to cut and paste on my phone
We covet your prayers. So much of this is uncharted medical territory and I truly have no solid bearings on whether this will end up being just a series of bumps in the road or whether we are looking at very serious changes for Noah. Time will tell. In the meantime, please pray for wisdom for every one of us and for every kind of provision - emotional, spiritual, financial, and mental.
Blessings,
Kate
