Day Three Post-Fontan

Tyson had another rough day. He (we) didn't sleep well last night at all. Tyson was unsettled from 12-4am...and then we had to be up at 8am for the echo at 9am. Right away he was pretty grumpy that he couldn't eat or drink, because it was a sedate echo. When we got to the echo lab, they were behind schedule. The nurse practitioner Jenny examined him in the echo lab, and she noticed that he was wheezing, so they gave him a ventolin mask before they were comfortable sedating him. He was then on an O2 mask during the echo and his sats were in the low 80s with O2. HIs sats should definitely be higher than low 80s on O2. So the NP ordered chest x-rays because he is also coughing a lot and his chest sounds rattly. (This coughing pretty much just started last night, as he sounded good and clear yet before leaving Ste-Down yesterday.) The chest x-rays came back ok, so they aren't too worried about pneumonia at this point. *PHEW* I was worried.

We are trying to get Tyson up and moving as much as we can, so that he can cough out whatever is in there. But it's very difficult to do this when there is so much going on in the day. Once the echo was done at 10:30, we had to let him sleep off the sedative for a while. Because he didn't sleep well last night, we let him sleep until 11:30am before waking him. He had some milk to drink and a cookie, then we were back to our room for a while. He had some lunch and then was too tired to do anything else so we let him sleep. Then the x-ray was ordered for 3:00pm. It is quite an ordeal to move him from bed to stroller to x-ray, back to stroller, etc. His chest tubes are still draining so we have to manouvre around the bulbs of fluid. And we were almost on our way back to his room when x-ray called us back saying they didn't get a good enough picture. So back to the drawing board, we had to do the x-ray process all over again. Tyson does not enjoy being moved around too much, because he is still in a fair amount of pain. Also, he got behind on the morphine today because they didn't want him on morpine while sedated. Then by the time he got back to his room after the echo he was tired and I didn't remember to ask the nurse to give it. So, by the time this whole ordeal with x-ray was over, Tyson was "done". Screaming fits of pain and rage, not co-operating, not a happy camper at all. He had some more morphine again once he woke up later in the afternoon, which was good because they were able to remove one of his chest tubes today and morphine is necessary for that process too. It's pretty painful too.

Watching hockey with his Daddy while I type up a blog update.

On days like today and yesterday, when Tyson is in pain and pretty much unbearable, I am so glad to have Brian here. There is just no possible way that I could get through a day of my son screaming in pain, being totally uncooperative and grumpy, and having to move him from one place to another to another, all by myself. It's great to have a wonderful family and communion of saints to care for our other children, and give us the financial means to give Brian time off to be with us. I just can't do this without him. Once Tyson is a bit back to normal, it will get easier. But for now, it's so draining on me. Not just the physical work nivolved, but the mental work too. remembering things and writing things down, and not leaving Tyson's side. Brian has been great at remembering how much Tyson has had to drink and when, how heavy his diapers are, etc. We have to keep track of all his inputs and outputs so that he doesn't retain too much fluid. He has gained almost a kilo since his surgery, because of all the fluid in his chest and just fluid retention is common after major surgery. The Lasix helps rid his body of some fluids, and drinking enough helps him pee enough. It's all so exhausting at times. We were thinking that once Tyson was up on 4D in his own room, that Brian would go back to work. But because he's moved up so soon, and there is still so much pain and angst, I am glad that Brian has been here. The loose plans are for Brian to get back into working again on Monday. We are really hoping that from now on, we can stay on top of the morphine because Tyson is clearly not able to live without it yet. Hopefully over Saturday and Sunday Tyson will start coming around like his old self again, and then I am ok for Brian to leave us. Maybe seeing his brothers and sister tomorrow will help cheer Tyson up :)

Removing one of the JP drains that was done draining. It takes a room full of people to help with the process. I couldn't be there to watch because I've seen this done before and I didn't enjoy watching it...

Tyson has been eating slowly again, for which we are so thankful. Once his appetite comes back, his strength will start to come back. He was still too weak this morning to stand on the weigh scale, even while holding onto both hand rails. Then today was so busy there wasn't another opportunity to try getting him standing up again until tonight after dinner. He wasn't quite ready then yet either. He did bear some weight on his legs but he is still in a fair amount of pain so it makes it more difficult. Even having the JP drains (chest tubes) contributes to what he can and can't do. They have to be secured onto his pants so they're not too heavy when walking around, but the clamps eventually start to rub against his skin and cause chaffing. *sigh* I know that the draining will eventually stop and I am 100% positive that once they come out, he will be SO much better. He'll be able to roll around in bed better, sit up more comfortably, and hopefully walk soon too. It's just so hard to describe how these JPs are affecting his recovery, so I took some pictures and I have posted them at the bottom of this post. For those who have weaker stomaches and would prefer not to look, then please don't look. But if you think you would like to see what I am talking about, have a scroll down the page and take a peek. I'm hoping I can get the pics far enough down that those who don't want to see don't get a glimpse :)

OK.....so I've tried to press Enter 100 times to get the pics at the very very bottom of the page, but it's not working, they are just coming up right after my blog entry....so if you don't want to see them, then don't look too closely:)

That's the update for today.

Thanks so much to everyone for your prayers. I have a few matters you can add to your prayer request list:

1) Please pray that Tyson will continue to recover well, and that his pain can be managed.

2) Please pray that Brian and I can continue to be a support to him and to each other.

3) Pray that Braden, Merrick, and Kenya do not get too anxious and that they too can trust in their Heavenly Father to provide all things.

4) Pray for other family members who are affected by Tyson's condition; grand-parents, cousins, aunts, uncles, friends.

Thanks!

Brian and Mel:)

The JP drains

Emptying the JPs with a big syringe

Three JPs clamped to Tyson's pants so they can stay somewhat out of the way.