The pulmo has been on vacation. I would like to go on vacation.
We should hear something later this week. Hopefully.
The pulmo has been on vacation. I would like to go on vacation.
We should hear something later this week. Hopefully.
what's that smell, mommy?
it's never good when it's you
stinking out the kids
OK, so here's the problem with a small inflatable pool: things can hide under it. There is just enough give for say, a frog, to get itself lodged up under there. And for some reason, when the immense weight of a kiddie pool full of water doesn't do him in, your slippery bare foot will. And you will be concentrating so hard on heaving the million pounds of pool over to the side so that you can empty out yesterday's gross water, you won't even notice that suddenly there is frog schmear all over your legs, arms, feet, shorts, shirt, EVERYWHERE.
Then, simultaneously, as you think, "What's that smell?" you'll notice the wrinkled noses on two of your three children. (The third child – the one with the trach, who needs constant supervision – is face down in the grass 50 yards away.)
This is when you realize what the smell is. The smell is squished frog. And it is ALL OVER YOU.
(My husband interjects here that if the frog was smelly, probably I didn't kill it with my foot. Probably it was already dead via the weight of the pool, and I just managed to re-squish it. Details.)
So then what do you do?
As the little voice in my head starts to freak.the.fuck.out, I somehow manage to finish the job. I know that I will never go back out into the yard again, and possibly will have to set myself on fire to cleanse the smell, so I had better get the pool situated for the long term. I finish dumping the pool, drag it far far away from the skidmark remnants of sad Mr. Frog, throw the hose in it, point and say in my best Zuul voice, "You Will Swim In This Pool."
Ashen faced, the children refuse.
The oldest turns green and threatens to throw up, making the whole scene even more exciting.
I stomp into the house, find a disposable cup, take it outside and place it, like a mini-sarcophagus, on top of the frog. "Just stay away from the cup," Zuul says. "And enjoy your pool."
The children do not comply.
I grab the trach baby from the grass (thank you artificial airway for ensuring he didn't didn't suffocate while trying to dig a hole to china with his nose), and run into the house, a parade of kids behind me. Straight upstairs we go. I slam the bathroom door, giving Ike-a-saurus free reign on the bathroom floor while I throw myself into the tub. The other two bang on the door. "Was that a frog? Why did it smell like that? Was it on you? It was ON YOU!" I turn the water up so that their voices are muffled by the cascade.
Half a bottle of baby wash later, I am smelling better. The kids debate venturing slowly back outside. Ike-a-saurus takes a nap. My husband wakes up from his nap and asks brightly, "How is everybody?"
Zuul's eyes turn red and a hush falls over the house.
Guess who just volunteered himself to officiate a frog funeral?
a suspenseful week
waiting by phone like school girl
Here is a list of things that are ordinarily suspenseful, but WAY less suspenseful when compared to waiting for your baby's team of doctors to call you after they have had an afternoon long meeting to have a "very serious discussion" about him – a "very serious discussion" that will include creating some kind of plan of action that may or may not make you go crazy.
1) the finale of So You Think You Can Dance
2) waiting for two small people to admit which one of them made the purple stain on the carpet
3) reading the Da Vinci Code
4) deciding whether to admit you enjoyed reading the Da Vinci Code. For the second time.
5) waiting until the last possible second to remove your burrito from the microwave before it explodes
6) reading The Monster at the End of This Book with a three-year-old
7) digging through the vegetable bin in the fridge after you've been away for 11 days
8) logging in to the City of Austin Utilities website to see your August electric bill
9) waiting for the OB/GYN to call you back when you leave a message with the words "painful lump"
10) election night
an exhausting trek
some answers, but more questions
and the beat goes on
Technically, we're not home yet, but we're in Texas. That counts, right? One more night away from home and then we pile all the kids and all the crap into the car and watch the pretty central texas hills fly by as we make our way back to Austin.
What a week. I'm not sure I can say we have more questions than we did before, we just have different questions. That shouldn't be surprising, but I fully admit it's frustrating. And there are still a lot of test results we're waiting on. Some will be back by the end of this week, others not for two weeks. Does he have evidence of pepsin and fats in his lungs (sure signs he's aspirating stomach contents)? What do the doctors want to do about his lungs? How long until we have to go back to Cincinnati? How many times will we have to go back? Does he have to get a lot bigger before he can have the reconstruction? If it's a weight thing vs an age thing, it might be years before we can do it. But if that's the case, what if actually having the trach in is hurting him while it's helping him? How can it be that our local ENT says the nature of having a trach causes aspiration and more secretions, whereas the Cincinnati docs say exactly the opposite? How are we going to manage our Austin docs when it appears a good handful of them are in clearly over their heads with this?
I won't bore you with the rest of the questions I have. But I will say that I am having some kind of mental block accepting one of the things the doctors told us: that it doesn't matter how these things happened to Ike-a-saurus. It matters how we fix them. Intellectually, I can understand this. But, psychologically, I want a road map. I want to know why and how things went wrong. I want to know cause and effect. What we have just been told is that we will never know the answers to that – and more importantly, we don't NEED to know the answers. I feel like I need to know, though. It is very very hard for me to accept that I will never know why or how this happened. Not sure why it's so hard. Maybe secretly I am looking for ways to not blame myself. Not that I really consciously do, but maybe somewhere deep inside is an almost invisible voice that says, "If you had just done this or that, things would be different."
I think that today we are definitely in a better place than we were this time last week. We know more even if it feels like we know less. It's a hard thing, accepting that we have a ways to go with all of this. It's tough to think about what Ike-a-saurus is going to have to go through to get his airway repaired. It's tough to think about the amount of time we will have to be away from the wee one and wee-er one while we're getting this fixed.
It's weird to think that my children will spend so much time having nurses in the house; that my three-year-old talks about suction catheters and my seven-year-old can explain what a trachea is and what it does. I have to hope this will all be good for them somehow.
I try not to go down the "it's not fair" path. But it's not fair. I have to work hard to think there is a reason for this, that it's not just random shitty luck. I have to work really hard at that.
Reading back over this post it sounds a lot drearier than I feel. Really, things could be a lot worse. We are very, very fortunate. If you learn anything from spending a week visiting one of the biggest children's hospitals in the country, it's this: holy shit could things be worse.
So now we just try to settle back into our routine. And I will try to stop brooding and start being funny again. It's boring to brood for so long.
Last night, in the hospital, we ordered room service from the cafeteria. That's what I always do at Dell, and the food is tolerable. Here, though, it really was pretty good. Possibly my view is skewed by the fact that I didn't actually eat any food at all for the entire day until about 8 pm. But even so. Hummus and veggies? Yum! Fried chicken legs? Yum! Big fat chocolate brownie? Yum!
We still have not made it out to the famed Skyline chili. Maybe tomorrow. Tomorrow is our tourist day. Admittedly, being touristy with 6500 pounds of trach gear doesn't sound super fun… and yet, we have to get out of this hotel room. It will be fun to check out the city. Too bad there's not a ballgame.
On the other hand, my husband and I might just take turns sleeping all day tomorrow. Right now, that sounds more appealing than spaghetti with chili on top of it OR baseball.
I keep writing this and my phone keeps eating it. Here we go, third try.
Here’s what we learned today:
1) Ike will not outgrow the stenosis. It is a grade 3 stenosis with lateral shelving. His airway is in the shape of a very narrow hourglass. It’s definitely surgical. This sounds bad, but it’s not. This is what we suspected all along and we are thrilled the fancypants Cinci doctors are on board.
2) Ike has lung damage. Both from being a preemie and from possible chronic aspirations. Both of these things are news to us, and not welcome news.
3) his airway can’t be repaired until we figure out what is damaging his lungs. We have to fix whatever that is and then give his lungs time to heal. This means we will have to come back here and do all of this again before he can have the reconstruction. We don’t know when that will be.
4) tomorrow morning, he is having yet another swallow test to see what exactly he’s aspirating that’s causing the lung damage. Saliva? Food? Reflux?
5) next week the cinci docs will call us with more info as test results come in. Possibly then we’ll get a plan of action.
6) Ike is OK tonight. His arms are boarded at the elbows to prevent him from removing his impedance probe, so he’s not too happy about that.
8) encouraged and discouraged at the same time. Our road just got a little twistier, our journey a little longer. It’s never as easy as you want it to be.
Tomorrow morning at 11 am EST, Ike-a-saurus will undergo a double bronchoscopy (rigid bronch for his airway and flexible bronch for his lungs), and an endoscopy. They will take biopsies of his esophagus, stomach and duodenum. Then they will place a pH probe through his nose and into his throat to measure the acidity of his reflux for 24 hours. This is all to see how healthy he is, and what surprises may be lurking to impede any kind of future reconstructive surgery on his airway. Not fun, any of it, but very necessary to move forward.
He did well for his high res CT today – waking up from the gas very unhappy, but soothed quickly with some snuggles and food. The scan showed some lung damage we weren't expecting. We won't know the extent until after the bronch tomorrow, and maybe not until next week.
It's been a very long day, and tomorrow will be longer. However, we met several families with children who have had trachs but don't anymore thanks to the same team of doctors we have. I know everyone's case is intricately different, but it's encouraging to meet people who have been through what we are going through, and who now have happy little guys with naked necks.
Tomorrow is a big day.
long but easy day
the week gets really tough now
today was training
I guess it's like going back to gym when you've been away for a while. You recognize the smell, the equipment, the looks on the faces of the people around you, but you're sort of out of practice. You get on the stairmaster or whatever and you're like, "Shit, I am out of breath." And then you move on to the next thing and you're like, "Dammit, my shoulders hurt." But you remember how everything works and, after a few days, you're back into your old routine.
The hospital is like that. We were a little rusty getting back into the swing of things today, but soon everything came rushing back. It's 12 o'clock and you're in between appointments but your baby needs a neb treatment? Just push through the crowd in the cafeteria, find an outlet and administer that neb as needed. The good thing about being in the hospital when you do that is that no one cares at all. The kid at the table next to us was getting his lunch through a G-tube.
When you administer a neb in the airport concourse, it is not so easy to go unnoticed. FYI.
So we were back into the swing of things today. Eyes glazed from exhaustion, but pumping along on caffeine and adrenalin, we barreled through an upper GI study, a video fluoroscopic swallow study, lunch, and then an anesthesiology consult.
The upper GI and VSS went really well. Ike wasn't pleased to have to fast for four hours. And he wasn't pleased to have us pin his arms over his head to hold him down, but he was so hungry that the strawberry flavored barium was chugged with great relief. He enjoyed thickened barium (delightful), thin-liquid barium (with a fruity bouquet), and barium-infused applesauce. He aspirated once on the thin stuff, which wasn't a surprise, but the doc said this could have just been caused by the shock of something new. We have the go-ahead to test him out on ice cold water when we get back home, and see how he does with it. Great news! The tests also showed no signs of reflux. Obviously, that can be hit or miss, but still – this was encouraging.
The anesthesiology consult was not as awesome, though, mostly because of a know-it-all doctor who enjoyed offering unsolicited diagnoses of Ike's airway issues. He had also never heard of some of Ike's medication and had no idea what the thickening agent is that we use with Ike's milk. Then there were some disagreements about what the hospital terms "solid" food and whether it's prudent to starve an 11-month-old for more than 6 hours at a time just because giving him non-thickened pedialyte might give him pneumonia. Dell Children's says thickened breast milk is a clear liquid. Cincinnati Children's says it is a solid. Well, it depends on who you talk to in Cinci, and that is confusing and not very cool.
Tomorrow is the CT scan. They will knock him out for this one, which I am not a fan of (though I understand why they have to do it). We have to be there at 6:30am, so hopefully it won't be so bad having to fast beforehand. Wednesday is going to be the real gut punch day, with the fasting for 6 hours, and the bronch not scheduled until 11.
They are easing us all into it here, scheduling the least invasive procedures and consults first. This is good, but also bad. As the week wears on, my husband and I are getting less and less sleep. By the time the bronch day is here, we will both have had maybe 12 hours of sleep over a 3 day period. Combine that with a starving baby, who has had enough of hospitals, and I can tell you right now, emotions will be running high Wednesday morning.
Thanks for all of your good thoughts, everyone. It makes me feel less anxious to know that so many people are out there thinking of our wee Ike-a-saurus and hoping for the best. It is somewhat traumatizing to think this is just the very very beginning of everything that will have to happen to get the trach out. But it helps to know you all are there.
Snoozing after a long day. (Also, flipping me off.)