Saturday, November 22, 2008
Just a quick update before we fall into bed exhausted...another good day. Lots of smiling, got to ride in his fancy stroller face forward for the first time (had a good nap), still working out all the logistics with the meds and pump, etc.
It's starting to sink in for both of us, but especially for Laura, the magnitude of what this means for us long term. It's really daunting to do all of this ourselves (and soon Laura by herself) without hospital eyes/ears/hands. Plus we're back to being sleep deprived by our precious boy :-)
Hoping the high lasts a bit longer. I think we're starting to come down a little and reality is sinking in a bit. This could be harder than the hospital in some ways. In a lot of ways it's 10 times better, but it's a lot of work instead of a lot of suffering. When things are in crisis, sometimes the rules are lifted, you are able to call in help, you may get a free pass here and there. We're now settling into WORK. We're (hopefully) moving past the crisis phase into the next one which I think may officially be called "Reality Check".
Feeling tired, hopeful, worried, overwhelmed, joyous, apprehensive, triumphant to have made it this far and terrified of what will or won't happen in the next 2 years or so.
Off to bed so we can get some zzzzzzzzzzz's before Shimmy wakes up.
Much love to y'all
Friday, November 21, 2008
Wow. Wow. Wow. So tired. So happy. Still trying to believe it's real.
I had been seriously considering going to work today and this morning I thanked whomever that I didn't. It was a little like having a newborn again last night. We woke up about every 2 hours- sometimes for Simon, sometimes for his equipment. My first words to Laura this morning were, "did you see the truck that ran over me?". Her response, "no, but it got me too".
Still, it was such a joy to wake up, bring him into bed, get Roxie up there and all just be a family.
We're working out all the kinks- still being tethered to a pump, working the pump, calculating how long it will take to get out the door in the morning when we have to draw meds and give them with 10 minutes in between each one so he doesn't puke (he still does but it helps a little), figuring out where to put all his STUFF. We realized we have to get a baby monitor (anyone have one they don't use anymore?) because we need to hear if he's puking in his bed when we're in the living room or kitchen. It looks like a pharmacy exploded in our house, plus there's a stack of chucks by his crib and a stack of towels in the living room for puking. My big challenge this weekend is trying to create some sense of order and make a place for everything. He has mountains of toys to clean and sort, I Clorox wiped all his books that were at the hospital and we're washing everything that was fabric that was there. It's sort of like tackling a lice infestation times 100.
We went on a dog walk today, my mom came by, a home health nurse came by, Carol and Megan (our 2 primary nurses) came by, we went to get groceries and then my stepmom and a friend came by. It's so great and I'm so exhausted. It's like when he was first born- we have to nap when he naps, etc but he's WAY more fun then he was when he just came out. He has been so smiley and happy the last 24 hours. More than I've ever seen. It's magic. I hope we can keep this good trend going. I really, really don't want to go back to that life. I figure we'll end up there at some point for a short stay (a bad cold they want to monitor, etc), but I really don't ever want to be in Room 1 again or stay for long. Ick.
What an incredible thing this all is...it's better than I could have hoped. We can do this. It's hard as hell and still really, really scary, but we have our baby back.
Thursday, November 20, 2008
He took a nap, threw up here and there and we went on 2 walks around the neighborhood to see local shopowners and such.
I took a bath with him tonight and literally for 20 minutes he barely stopped smiling. He splashed and played with toys and would look up at me and grin and go back to splashing. I (like a dummy) am surprised by how happy he is. I think I thought he a) wouldn't notice or b) would be so used to the hospital that this transition would be hard on him. We'll see how tomorrow goes, but so far, he's a grinning fool. Only one projectile vomit (that Roxie promptly cleaned up). Blech. It *is* good to have a dog, though, in situations like that :-)
It looks like a pharmacy exploded in our house. There are syringes and bottles and tubes and crap everywhere. I'm itching to get lots of containers tomorrow.
We're both a little weirded out by the fact that we're about to go back to having interrupted nights of sleep. One of the silver linings of this whole thing has been that we've typically gotten 8 or so hours of sleep. Those days are likely over for a while. I'll take it.
This morning, one of the cardiologists saw Laura and said, "We didn't think he'd make it this far. This is a VERY big day.". That about sums it up. I keep saying that no matter what happens, getting to this point is a victory. Two months and even 2 weeks ago when he was so sick again, I really wasn't sure if we'd ever see this day. Simon is the hardiest little weed I've ever seen...
It's all very surreal and so, so beautiful.
Wednesday, November 19, 2008
So it's Wednesday evening and we are still very much on the going home track. I won't really believe it until we are in the car with Simon in the back seat but we're closer than we've ever been. It's been a little rough going with Shimmy being a little more pukey than we've seen, a higher heart rate, he's lost weight since Friday, and we just heard that his BNP is in the 1600's up from 1129. So what are they thinking? I started the day feeling so hopeful and good and have been getting consistently more and more frightened as the day wore on. We regressed on the feeds two steps back and he still had projectile vomits throughout the day so we're going back to continuous feeds for a while to see how he does.
I know that vomiting and weight gain are things that we can manage at home but I won't pretend that the other things aren't freaking me out more than a little. I was talking to my sister today and I realized how tense I was thinking about going home. Then I realized I'm not tense, I'm frightened.
I don't get frightened really. I've been run over by a car, I've lost brain cells, I gave birth on the floor of my living room. Things might sometimes be hard to go through, I know hard. I've done it.
I'm scared right now. I'm scared that Simon is not on the upward trajectory that he seemed to be on even just a week ago after his serious bacterial infection. I don't feel frightened about going home even. We are so close to the hospital and being home where we can have some control over his environment can only be good for him.
I'm scared that he's not getting better. That's what I am terrified of. And, as much as I love all the messages of faith and dreams and visions, I am not clear today that that's the road we're on, not clear at all. If it were just one thing, the weight loss, the heart rate, the puking, the BNP, then I would be less inclined towards tonight's pessimism. But it's not. It's all of those things and they are of course all intertwined. I don't want it to be a trend. I want it to be just a bad week. We'll have good weeks and bad weeks. I want it to be different once we get home. I want him to feel it the same way that he seemed to respond to moving from the ICU room 1 to the Annex.
I do not want to come back here. I want all our new CHO friends to come to us but I do not want to come back her other than for outpatient visits and the yearly heart party.
AND, I am thrilled to be going home and have control over lights, sounds, when we go out, what we all get to eat and spending time with Roxie, Jaime, and Simon as a family.
Family. Home again. Unreal.
Hopefully tomorrow we post from home.
Tuesday, November 18, 2008
Here is one of the very funniest videos of Simon ever. Check out the tongue!
Still looking at going home the end of the week. Still a little freaked out that Simon's heart rate is about 10-20 points higher than it has been. Still really ready to get out of the hospital. We've started Regalin to get his upchucking under control (he didn't gain any weight between Friday and Monday) and hopefully get him really stable and in a good place before Friday. Fingers crossed, prayers sent out, visions of Simon home. Please.
Sunday, November 16, 2008
For all you Microbiology nerds: Simon's 2 major bacteria in this last infection were Enterococcus faecalis and Enterobacter. Both are very common in the ICU. They're icky and glad they're being killed by all the antibiotics.
Speaking of antibiotics- Simon's IV conked out yesterday, on day 9 of 14 for his antibiotics and the Infectious Disease team made the (I think very wise) decision, to not put in another IV and instead do his antibiotics in a once a day Intramuscular injection. It hurts like hell for about 2 minutes but then it's over and we don't have to worry about another infection via a line in him. We're seriously looking at Friday for a departure date. Again, I'll believe it when I see it, but so far so good and we're reducing the ways Shimmy can catch cooties by keeping his skin mostly intact.
He's been a tiny bit more symptomatic in the last 24 hours (slight bump in heart rate and very light sweat a few times). We're not sure if it's just an off day, if they need to increase his meds or if it's something bigger. I (Jaime) choose to go with the "off day" theory.
Laura and Simon hung out in front of the hospital for the first time and *2* staff members who were driving by, off duty, pulled over and got out of their cars to say hi. One of them was our dear, sweet Thomas, our area custodian, who has been off with a back injury. We were afraid we'd go home before he came back- we were thrilled to see him and meet his wife in person. She was actually the one that spotted us, recognized us from the blog (that she's been following), and pulled them over.
Here are some cute pics from the last few days. Simon is loving his tongue, rocking the urban cowboy look, digging baths and strolling in a doll size stroller.