Saint Marys - Day 16

Garrett's echocardiogram this morning showed his heart still has more of a workload than normal (which we expect to be the case until additional arteries are embolized to reduce the blood flow sufficiently), but it's less than what it was before his second procedure. Dr. Eidem, Garrett's cardiologist this week, mentioned that the pressure in his heart is still a little high, but quite a bit lower than it was before the additional embolisms. Considering he was on two additional medications then, and three doses of Lasix, versus one dose now, that shows just how effective the second treatment was.

I still haven't completely figured out how to make sure he keeps his food down. Sometimes he'll throw up an hour after a feeding, even if I finished the feeding by trying to burp him for several minutes without even a hint of a burp escaping. One of the nurses suggested laying him on his right side afterward to help empty the stomach. I'll give that a shot and see what happens. I've also been holding him upright against my chest afterward, and that seems to help sometimes, but not every time.

It's been a few posts since I've included pictures (and I know grandparents in particular appreciate seeing them), so here are a few more.

Thanksgiving Dinner
Jean and Steve brought Jonathan out so we could have Thanksgiving dinner with him. We enjoyed the meal in Saint Marys' cafeteria. (I can't tell you how it pains me to put the apostrophe after the "s" in "Marys." I really wish the nuns had enough of an appreciation for proper grammar to follow it and let go of their angst over possessiveness when they named the hospital.) It was getting close to 7 p.m. and the cashier made sure we took several turkey-shaped cookies off their hands, since they would only be thrown away otherwise.

Garrett
Below are some pictures of Garrett from today. He just looks so peaceful when he's sleeping.

He definitely has the Rossing nose.

The hair on the back of Garrett's head is just a touch oily from the Skin So Soft (thanks, Jan!) I've been using to slowly work out the dried up glue gobs from his EEG over a week ago. I finally got the last of it out today.

Jonathan has Chris' wide hands, but Garrett has my long, slender fingers.

Saint Marys - Day 15

There's not much new and exciting today, either. Garrett's respiratory rate still seems to be high, although nobody said anything about that at rounds this morning. When I last asked about it, it sounded like they think it will just slow down over time. Perhaps his body is just adjusting to the changes in blood flow.

Last night Garrett was still throwing up a lot, but he's done much better today. Other than spitting up a little (well, a moderate amount, but not an entire stomach full) when I fed him at 3, he's pretty much kept it down all day. I think I just needed to back off a little and not try so hard to get him to eat and gain weight. He does a great job eating, but maybe I wasn't giving him enough credit. Maybe I've been encouraging him to eat longer or more frequently than he needed to and his stomach just couldn't handle it.

Taking a more relaxed approach, together with being better about burping him and not nursing him if he couldn't eat and breath at the same time, seems to be making a difference. We'll see what the scale says tonight and tomorrow. His weight was down a little this morning from yesterday -- which I expected, considering how much he's been throwing back up, but it was a little disappointing nonetheless.

He has another echocardiogram scheduled for some time tomorrow. I'll be eager to hear what the cardiologists have to say about the results. They seem to be pleased with Garrett's progress so far, so I wouldn't think there'd be any problems, but their conclusions will play a factor in how soon we get to go home.

The neurologists and neurosurgeons still seem satisfied with how Garrett is doing, so it looks like it comes down to the cardiologists and pediatric care team being comfortable with his condition before sending us home.

Saint Marys - Day 14

Yesterday and today were pretty much the same: waiting and watching. I think what they're watching the most right now is Garrett's weight. He was up just a little from two days ago to yesterday, but down some from yesterday to today.

The frustrating thing is that he eats really well, but a lot of the time, he throws it all up again -- and I mean all. Sometimes I wonder if he's even throwing up part of what he had at the previous feeding. I thought if I could get a handle on the burping, that would help keep it down, and it seemed like that was working last night and this morning. This afternoon and evening, however, it didn't seem to matter how often or how effectively I burped him. He still threw up a lot.

My new theory is that when his respiratory rate is high, he has trouble coordinating breathing and swallowing, so he gets more air in his stomach than he should. In addition to the frequent burping, now I'll be careful to not let him eat unless he's relaxed enough to swallow in a controlled manner.

Tomorrow will probably be more waiting and watching, too. I think someone mentioned the cardiologists wanting another echocardiogram of Garrett's heart next week. I'm hoping that can happen Monday, because this place is starting to feel like a prison, and I hate the thought of a test holding us up any longer than we have to be here.

Here's hoping Garrett eats really well tonight (and keeps everything down) so he can be nice and hefty for tomorrow morning's weighing and encourage the doctors to send us home soon.

Saint Marys - Day 12 - Happy Thanksgiving

Happy Thanksgiving, everyone! While Saint Marys isn't the ideal place to spend the holiday, we do have a lot to be thankful for. Garrett made it through his second procedure all right, and looked good enough this morning that they sent him out of the PICU and back to the general floor already.

Dr. Cloft said they embolized three more large arteries with yesterday's procedure, and commented that three is about all Garrett can take at a time right now. He mentioned that if they could have closed off one more during Garrett's first procedure, that probably would have been all he needed. Although embolizing one might have been enough to reduce the strain on his heart and send him home this time around, they weren't going to waste the opportunity and decided to get as much as they could. Dr. Lanzino even commented that one of the three was probably the largest one Garrett had.

Dr. Cloft and Dr. Lanzino are two more of my favorite doctors. Not only have they done an excellent job getting Garrett through these tough treatments, they also have a generally reassuring demeanor, like Dr. Arteaga, that parents need as badly as we need air to breathe in times like these. (Not that it affects patient care, but Dr. Lanzino also has a wonderful accent that I could listen to all day.)

There are still a number of arteries shunting directly to the vein, so Garrett will still need to come back for more procedures when he's bigger. However, Dr. Cloft also mentioined that sometimes the smaller arteries clot off on their own over time. He said he didn't want to get our hopes up, but if we were praying for a Christmas miracle, that'd be a good one to pray for. Did I mention that we like Dr. Cloft, too? =)

Garrett's cardiologists thought he was doing so well this morning that they've adjusted his medication again. They were even quite impressed that they couldn't hear the bruit (the whooshing sound of blood flowing) through his fontenelle anymore. After the procedure yesterday, they decided to take him off the digoxin (medicine that helped give his heart a "stronger squeeze"). And ater checking on him this morning, they decided to eliminate one of the two diuretics he's been on and reduce the other one, Lasix, from three times a day to once a day.

This afternoon, however, the pediatric inpatient folks have noticed he's still breathing somewhat fast (although looking much more comfortable than before) so they're talking to the cardiologists about switching the Lasix to twice a day instead of once to see if that makes the difference. Either way, depending so much less on medicine must mean they feel the heart is coping quite well on its own.

He was really sleepy after the breathing tube was taken out yesterday. He was kind of waking up from the sedation and getting agitated with it, and just as the nurse was getting ready to take it out anyway, I guess he pulled it most of the way out on his own. Chris said he must want to get out of here as badly as we do. At this rate, he'll be driving himself home.

Before his first breathing tube was taken out, the respiratory guy said usually infants will either be ornery cusses afterward, or will just sleep it off. Apparently Garrett takes after me in dealing with stress by snoozing. This time, the tube was taken out in the early afternoon, and he didn't really wake up until 7:15 p.m. I thought he'd wake up a few times before that, because he squirmed a little and cried for a short period, but he wouldn't stay awake long enough to eat until the evening.

After that, though, he was in a good routine of eating every two hours. Chris and I took advantage of the PICU sleep room being available, and Garrett's night nurse, Gretchen, just came and knocked on the door when Garrett was ready to eat. She always apologized for waking me up, but with the nurses taking care of changing diapers and comforting Garrett if he wasn't hungry, I told her that even with being woken up frequently this was probably the best sleep I'd be getting in a while.

As for the rest of the day, it sounds like it'll be more waiting and watching Garrett's vital signs to see how well he's doing after the procedure and with the change of medication. Grandma Pam treated us to lunch when she visited, and Jean and Steve will be bringing Jonathan out later.

Of course, we'd rather be spending Thanksgiving at home with our family, but, all things considered, this hasn't been too bad. If we were still waiting for the results of another procedure, it would be hard to feel thankful (it would be hard to feel anything other than anxiety), but now we can breathe more easlily and expect things to keep improving.

Saint Marys - Day 11 - Post Op

Garrett has returned from his surgery and they said everything went fine. It's amazing how much relief can come with those three words. I won't have a lot of details about how much of the extra flow was addressed until I talk to the doctors, but it sounds like there are still plenty more feeders to deal with when he gets bigger.

Right now, we're just waiting for Garrett to wake up. I'm pretty sure they plan on taking the breathing tube out once he's more alert. It sounds like we'll stay in the PICU tonight and probably move back to the floor tomorrow. I don't know how long we'll be there before they'll send us home. Right now, I'm just glad our little guy did so well.

Saint Marys - Day 11

Garrett was taken to get prepared for his angiogram and embolisms around 8 this morning. Dr. Cloft and Dr. Lanzino will be performing the procedure again. If it goes about the same as last time, we suspect it'll be over around noon or 1 p.m. (See a video explaining the "super glue" surgery Garrett is having.)

He'll be back in the PICU for at least a day following the procedure, so we'll be packing up our stuff and moving again.

More Embolisms Already?!

This morning we talked about leaving the hospital tomorrow (which would still get us home for Thanksgiving), but after an echocardiogram was done on Garrett's heart to investigate his increased respiratory rate, the cardiologists were concerned about the excess blood flow they found and consulted with the neuro group to decide what to do next. Since Garrett is already maxed out for his medicine, and the cardiologists don't feel it's safe to let him go with the stress his heart is under right now, they decided he should have more arteries embolized tomorrow.

Ugh. Everything had been looking so good. He seemed to be well on his way to getting out of the hospital and growing six, twelve, or eighteen more months before having to go though that procedure again.

People have told me I seem to be handling all of this well. When the good news keeps trickling in, it's easy to grab onto that and hold on tight. But after getting tonight's news, I feel like we're right back where we were a week ago -- wondering if Garrett will be the one in five that doesn't make it through, or if he'll make it, but with some serious complications. Needless to say, I'm a wreck again.

Chris is dropping Jonathan off at Jean's so he can come out tonight, rather than wait until tomorrow. It sounds like they want to do the procedure sooner rather than later, but I haven't heard any specifics on the timing yet. They'll need to intubate him again, but the doctor I asked wasn't sure whether he'd need a feeding tube. I'm sure he'll get another IV, which means more poking. Poor guy.