This week is a total rollercoaster ride. Monday Marek couldn’t tolerate being awake for any length of time. Yesterday Marek was doing quite well. He was able to be awake some during the day and didn’t need as many drugs. He seemed happy and smiled lots for us. Today, when I got there, he’d been isolated again. They think he might have caught another cold. We have to wear gowns again and they’ve sent away cultures to see if they can identify a virus. I’m so discouraged! Again, he slept most of the day today. I guess I’m hoping that if he rests well for a few days, maybe he can beat this one. I sure hope he can beat it. He needs to go for his cath next Thursday. Prayers and happy, healthy thoughts are most appreciated!
Oct 28
October 28, 2008 at 8:48 pm (Uncategorized)
Not Marek’s best day. Marek spent most of the morning with sats in the 40s and 50s. He dipped as low as 10. I know that at those low levels it’s not accurate, but still. What was really disturbing is that Marek was quiet and settled and still having low sats. The doctors ordered a bunch of tests, but after 2 x-rays they backed off a bit. Bothering him for tests just seemed to make him worse. They gave him some fluid and left him alone and eventually his sats sort of climbed up on their own. I’m very concerned about what’s going on though. Maybe tomorrow they will have more answers. Maybe it’s just the withdrawl. I don’t know.
Some days it feels like I’m losing it completely. Has anyone seen my sanity? I could really use it now…
Oct 27 – 8 months old
October 27, 2008 at 8:39 pm (Birthday, Hospital Stay)
Marek is 8 months old today. Where does the time go? I can feel snow in the air… what happened to summer? I can’t believe it’s been 8 months. What a ride.
Marek is doing ok. His withdrawl is really bad these days. He has almost all the classic withdrawl symptoms – gagging, vomitting, agitation, rapid breathing, an increased heart rate, even the occasional hallucinations. And of course, when he’s upset, he de-sats. But they are managing his withdrawl ok. They adjust his medications daily – trying to wean and minimize the withdrawl. It’s awful to watch, but every now and then, when he feels ok, he smiles at us and plays with his toys. The smiles make it all worthwhile and let me know that despite everything – he’s still there. Next Thursday is the day that he will go for his cath. Hopefully then they’ll come up with a plan for him. I just pray that they can fix him.
Ben’s ok too. He’s still loving playschool, which is great. They celebrated his birthday last week and we had our second birthday dinner for him yesterday. This time I made the cake (ok, from a mix) and it was much better than that disgusting thing last week. I don’t understand how a reputable grocery store could sell such a disgusting cake. The homemade one was still CARS themed and actually tasted good. It wasn’t quite as “pretty” but Ben liked it just as much, I think.
Oct 20 – Happy Birthday Benny!
October 20, 2008 at 5:55 pm (Hospital Stay)
Happy 4th Birthday Benny!!!
Unfortunately, Benny’s not feeling the greatest today – it’s always crappy to feel yucky on your birthday, but he’s ok. He did miss school today, which sucks because it was picture day, but that’s ok. He’ll bring cupcakes on Wednesday – that’ll be good. He enjoyed having his CARS cake (you can see him tasting the icing above), but to be honest, the cake was awful! Even Ben wouldn’t really eat it.
As for Marek, he’s holding his own. His sats are mostly in the 70’s today, although he dips down every time he gets upset, but really that’s nothing new. They are weaning his meds very slowly in an attempt to minimize the withdrawl. For the most part, it seems to be working. One day at a time…
Oct 16 – Extubated!
October 16, 2008 at 8:37 pm (Uncategorized)
Marek was extubated today! And so far, everything is ok. He just has oxygen via nose prongs like before. I don’t want to jinx anything, but his sats actually went up after they took the tube out. His sats were over 80 when I left tonight. I hope he has a good night. They turned down his meds quite a bit, so he may start to withdraw. I really hope they can manage that ok.
Here’s his latest pics (the green 81 on the monitor is his sats!):
Oct 13
October 13, 2008 at 7:31 pm (Hospital Stay)
Marek is still in the PICU, but we finally have some good news! Marek was successfully taken off the NO yesterday (after almost 4 weeks!). And he didn’t de-sat and he didn’t have heart rate issues and he didn’t have blood pressure issues. Yay! His sats were really good today, so good in fact that they turned down his O2 and started weaning his sedation as well. It’s really amazing. We’re finally, finally, FINALLY seeing some improvement.
I don’t know what tomorrow will bring. All the doctors and such will be back tomorrow after the long weekend and hopefully Marek will still be doing as well. I don’t know what’s next for Marek, but hopefully we’re on the right track now. Stay tuned…
To my sweet boys - Marek in the PICU, Benny who’s in Vancouver - and to all our family and friends: Happy Thanksgiving!
Oct 9
October 9, 2008 at 7:51 pm (Uncategorized)
Baby steps. Teeny-tiny improvements. I’m happy with that. Marek has had two pretty good days in a row. Both yesterday and today he was ok to wake up a little. He needed a lot less drugs. His de-sats weren’t quite as bad – they didn’t always go as low and they didn’t last as long. Overall his sats were good – even when he was awake. The only time they went down was when he tried to cough or got bugged a lot. That’s a real improvement. Plus it was awesome to see him open his eyes. And grab my finger. And try to turn to look at me when he heard my voice. I still can’t hold him but he held my finger. And, just as a baby should, he immediately put it in his mouth.
Oct 6
October 6, 2008 at 7:41 pm (Uncategorized)
Marek is not doing well. They will do more tests tomorrow to try to figure out why he’s so unstable and why he’s not improving. They pestered him a fair bit today, replacing some of his lines and doing a few tests. They also put a line in that’s a bit more long term (called a picc line) so hopefully they will have an easier time giving him his IV meds and drawing blood. All that pestering today meant that his sats were quite low all day. As a result, his NO is up, his O2 is up and his ventilator is doing more of the work for him. They also had a lot of touble keeping him sedate and quiet. I pray that he rests well tonight and is doing a bit better tomorrow. I just want him to get better. Please God, let him get better.
Oct 5
October 5, 2008 at 7:51 pm (Uncategorized)
Today is our anniversary. I wish I could say we did something awesome like we got dressed up and went to a great restaurant or something, but we didn’t. We did have a nice dinner at home (in our pyjamas!) with Ben and right now that qualifies as special. All in all it was a good day. But this weekend was kind of crazy. Marek is doing ok – his sats kept dropping overnight so they went up on his NO (they originally wanted to turn it off tomorrow. I doubt that will happen now). It turns out that his lungs are wet again. They are working towards drying him out now and have turned the NO back down. We’ll see what tomorrow brings. On the plus side, Marek’s out of isolation so we don’t have to wear gowns, masks and gloves when we go see him now.
As for the rest of us, let’s see. I dislocated my kneecap yesterday (ouch!) but it popped back into place so I think it’s ok now except for some soreness. I also lost my blackberry yesterday (I think it was stolen) so that cost me a ton to replace. Merv’s neck and back are super sore and he can hardly move. He’s not sure if it’s from stress or if he slept funny, but he has hardly moved all day. And Ben’s still fighting his cold. His nose is so stuffed up that he can’t eat or cough without gagging. Yuck.
I’m trying to keep my spirits up. But seriously – is it too much to ask for something really good to happen?
Oct 1
October 1, 2008 at 7:39 pm (Uncategorized)
Little by little, Marek seems to be improving. He had his lung scan yesterday and he is using both lungs (not equally but much better than they expected). So that’s good news, he likely won’t need an additional surgery to correct that. And today, they reduced the settings on his ventilator so that he’s doing most of the work on his own. He’s actually controlling how often he takes breaths, he just gets a bit of help with air pressure. If he could get off the NO, then they could get rid of the breathing tube. They’ll likely try again early next week. Hopefully he’ll be ready by then. We’re moving ahead slowly, but we’re moving in the right direction. That’s what counts.
