It's not that we don't take Noah's issues seriously or that you can ever "get used to" seeing a child who is sick or suffering. Rather it's that our meters have been reset by quite a bit. When you live with this every day for years, you get a different perspective on almost everything. Not only do you not sweat the small stuff - you completely redefine small stuff! Before Noah, a child needing a blood transfusion would have been new and very scary. Now a blood transfusion is just another routine thing and we spend more time thinking about how to keep Noah occupied than worrying about whether something will go wrong. It's not that we're blind to the fact that something could possibly go wrong - it's just that we truly understand that complications are rare and that they can be managed. The big picture perspective is that the transfusion will make Noah feel better, and we can give thanks.
Before Noah, our only experience with a child needing surgery was Hannah's appendectomy. It was pretty overwhelming. Now we have a child who needs a surgical procedure every 4 weeks. It never gets easier - I cry every time - but it doesn't set off the fear and the drama that it would have before. The big picture perspective is that we have the most amazing urologist on earth and an incredible team that truly bends over backwards to accommodate and love on Noah. We choose to focus on this perspective.
Our perspective makes it easy to say that Noah's doing really well, or that we are thankful that he's relatively stable, and this is the truth. We also understand that there is another side to how he's doing, and the trick is to balance those two perspectives in a way that doesn't create fear/worry but that doesn't gloss over things unrealistically.
So how's Noah?
On one hand, he's got some very, very wonky labs. If today's labs were accurate, we may be looking at something pretty serious. (Not wanting to be annoyingly vague but I don't want to cause a ruckus if this is nothing after all!!)
On the other hand, the labs might not be accurate. Errors do happen. One of our favorite doc,ors always says you need more than one point on a curve, so Dr. B came over tonight, reassured himself that Noah is looking OK, and asked the hospice nurse to re-do the labs tomorrow. They may come back just fine and this might be simply a tempest in a tea pot.
On one hand, he's been on heavy-duty IV antibiotics since early October with only one very short time off. Dr. B just had to switch to a different antibiotic that we'd wanted to hold in reserve for a more serious time than this. He's on these antibiotics because his body doesn't seem willing to play nicely with his plastic lines and drains anymore. The central line that was placed in October is still red, swollen, and draining. It gets a bit better, then gets a bit worse, and round and round we go ever really making great progress in healing. The antibiotics have the potential to cause organ damage and to create resistant bacteria.
On the other hand, he's dealing with these antibiotics remarkably well (his liver's a bit cranky, but nothing scary). While his line really isn't getting/staying better, it's not getting significantly worse either. He isn't running fevers, doesn't have a blood stream infection, and his g-tube and supra pubic catheters do look MUCH better when he's on antibiotics. We aren't ,minimizing the potential disaster(s) that could come if his body is truly rejecting his lines or if an infection hits his bloodstream, but none of these things are actually happening. Only the Lord knows how many life-threatening infections may have been avoided because of these drugs - and we can't forget to be thankful to live in a place where these meds are available.
On one hand, he's had to stay away from crowds because his white count has been really low.
On the other hand, if today's labs were accurate, at least his white count is up a wee bit and that's great to see!! If he keeps it up, maybe he can go to church Sunday!
On one hand, it appears that his vision may be deteriorating further. He's clearly either not seeing well or not able to identify what he sees very well, and his strabismus is obvious the majority of the time instead of just upon waking.
On the other hand, if his vision is worsening, he's doing an awesome job compensating for it. He blows us away with what he does despite being stereoblind and I know he and we will do whatever we have to do no matter what happens. He's finally seeing his super ophthalmologist on Wednesday - we had to shuffle EVERYTHING when Mary Faith broke her clavicle. (Oh, and about that - she's still in a lot of pain so they've had us wrap her arm/sling to her torso to immobilize it more fully and she's seeing the pediatric orthopedic surgeon in Greenville in the morning.)
One one hand, he's really, really tired right now. He slept in yesterday until Jeff finally woke him up at noon and he still went down for his nap at 3:00. Today he woke up at a more normal time but kept lying down curled up in a ball saying he was tired (he never says this).
On the other hand, his vitals are OK and his afternoon nap only lasted about 6 hours. This means he gets a couple of hours of "awake time" before he goes down for the night - and that's always a win in our book!
So yes, on one hand we have some concerning labs (some of which could have been errors), an ugly central line site, almost three straight months of serious IV antibiotics, a boy who is getting more and more tired, possible vision issues, and just the plain old baseline stuff Noah deals with . . . but that's not the whole picture.
There's this - yep, he can get himself up onto the couch by himself now!!!!
There's this - (he might not be able to eat Christmas cookies, but he loves to decorate them!)
And there's this - yep, that's a ball python he's holding in the first picture, and part of a ridiculously HUGE snake that he was helping hold in the second picture! He was, ummm, more enthusiastic than I was!
THIS is the Noah we choose to see - the perspective we choose to take. We never forget his medical challenges but choose to take a different view of things. He is So. Much. More. than mito.
Blessings,
Kate
