The big question from everyone lately is, "How's Noah doing?" Honestly, there's no longer a straightforward answer to that question and how he's doing varies wildly throughout each day.
For those of you not on FB, Noah did have his central line replaced a week ago Friday. Things did not go smoothly and he was in the hospital for 6 days. The new line is bleeding like the old line was despite getting more vitamin K and fresh frozen plasma in the hospital. He also showed us that he can't transition off of his bi-pap without serious desats and the need for O2. The sad truth is that these things aren't likely to get better any time soon if at all, so staying in the hospital became a bit pointless. We have parameters for how much bleeding is acceptable and orders to go to the nearest ER for more plasma anytime the bleeding becomes unacceptable. We are monitoring his sats and giving O2 each day when they drop.
So where does that leave us now that we are home? Mid-late morning and early afternoons tend to be pretty good. He's pale as a ghost and tires incredibly quickly, but if he feels up to doing something during his "good time" we go for it. He went to Lowe's Build and Grow to make a How To Train Your Dragon project today. He quickly got too tired to hit the nails hard enough, but he had a blast and is enjoying playing with his new toy. He goes down for a nap at 3 each day and by that point he's incredibly exhausted and has far poorer blood gasses than when he woke up in the morning. He goes on his bi-pap which relieves him of a lot of the work of breathing and keeps his O2 sats within a safe range.
The problems really kick in when he wakes up from that nap and goes off the bi-pap. He starts desatting pretty rapidly and requires a good bit of O2 to keep his sats up. (We can only go to 5 liters but even that is not always enough.) He's usually on O2 until he goes back to bed a couple of hours later. Lather, rinse, repeat . . . on bi-pap all night with generally acceptable sats, goes off in the AM and the sats tank again. We are SO thankful that he recovers a lot more rapidly in the morning after a full night's sleep as opposed to after his nap. He was in the low 80's this AM and needed 3 liters, but by 9:45 we were able to get him off the O2 in time to go to Lowe's. (We could have taken oxygen with us, but I'm glad we didn't need to.) That leaves him the rest of the day to do well until the 3:00 nap rolls back around.
As far as the bleeding goes, we are seeing heme/onc on Wednesday. At this point they are speculating that he has some kind of global clotting disorder but we don't have any more details than that. INR, PT, etc. are staying out of whack. We may or may not end up with a more specific plan than we have now.
This has all resulted in a pretty intense roller coaster for Noah and everyone else. It's hard to swing from Noah looking good to him having O2 sats as low as the 60's every single day. Part of his discharge plan was that a tabletop pulse oximeter was supposed to be in home before he came home, but we've gotten caught up in medical ridiculousness and bureaucracy at its worst here. He will have one next week and in the interim we're needing to use the little clip-on kind. Any of you who've dealt with a child needing O2 monitoring realize how difficult (and frankly frightening) this is. I think Jeff and I will both feel far more confident once we have the tools needed to monitor Noah appropriately.
In the big picture we just don't know how he's really, really
doing or just how serious these new developments are, so we are doing
our best to assume and believe the best until proven otherwise, and as always we are driven to let him truly live as much as possible.
I now need to ask something of each you and trust that you understand that I'm speaking from the heart here. We do not wish any advice about this right now. There is an awful lot I'm not saying right now. If you know much about or have dealt with either of these types of issues, you may be coming off your seat ready to ask me if we've considered A, B, or C. Please understand that we are in extremely close contact with our pediatrician, hematologist, pulmonologist, sleep medicine doctor, and hospice team. We've bounced around pretty much every possible option and sorted them into "no way," "maybe if we have no choice," and "worth a try." As we gain a better understanding of just where Noah is going, those decisions will be even more clear. What's important RIGHT NOW is that Noah has a big period of feeling really pretty great each day and that he is getting incredible support from a fantastic team of medical professionals.
I'd also ask you to understand that if you ask me how he's doing, I may be grinning and whipping out my phone to show a picture of him having fun or I may start crying. I'm doing a bit of both every single day. That doesn't mean it's wrong to ask how he is or that you messed up if I start crying. When you ask, it shows you care and it means the world to us.
Blessings,
Kate
