Saturday, May 12, 2012

Getting back to normal

This one's for you Mindi :) A few extra details for all my Heart Mom friends preparing their kids for the Fontan in a few weeks.

Things are slowly getting back to normal.  Each morning Jack wakes up and he's in a fair amount of pain so we go straight for the pain meds. I've been trying to wean him down to just Tylenol, but he seems to still also need a dose of oxycodon in the morning or he continues to complain that he is hurting. Once they kick in he's usually ok the rest of the day as long as we stay on top of it.  

With all the beautiful weather I've been trying to get us outside to play rather than just lay around and watch Bubble Guppies which for some reason is his favorite show ever since we got home from the hospital, but I'm finding it to be a bit tricky to balance between getting him out to play and him overdoing it.  Today we had some friends over and while my back was turned Jack decided to follow the kids and climb up the slide (he's not supposed to play on playgrounds for a few more weeks). He got almost to the top and realized that what he was doing really hurt so I carefully got him down, but ever since he has been complaining any time he laughs or coughs that his chest really hurts (like shaking, crying really hurts). It is also so hard to keep up with him outside.  He is on oxygen so if he goes sprinting outside I have to hurry and switch him to a portable tank and then follow him around the yard, usually with fat Tyler on my other hip which is exhausting.  I brought out the big tank on a cart today and let him push it around himself and he thought that was pretty cool, but he kept getting tangled up and I'd have to go rescue him.   I will be so happy if/when we are done with the oxygen, hopefully next week after his post-surgical check up. 

For a few days after we got home Jack was still very grumpy and distrustful of everyone.  He would smile and play with mom or dad, but his friends who stopped by to welcome him home were greeted with a scowl and he wouldn't talk.  I was worried that he was embarrassed by the oxygen, but it must have just been because he didn't feel well because now that he's feeling better he's not embarrassed at all. His cousins came over yesterday and some friends today and he really enjoyed it.

Our biggest struggle these days is taking his meds. He doesn't mind the Tylenol, and the oxycodon hides well in chocolate pudding so I can keep him from hurting. Even the Enalapril and Aldactone he dislikes but I can get him to take. But the lasix...ughh. You would think he was being water boarded the way he writhes in pain at the very idea. I took it to the pharmacy and had them change the flavor. Still torture. I've tried reasoning and explaining the importance to him. I offer him treats and rewards if he will take it willingly. I make threats if he won't.  Nope. I usually end up frustrated and finally just prying his mouth open, shoving it in and squeezing his cheeks until he swallows it so he can't spit too much of it back out.  He did better today, but oh, it is a battle. And Lasix is one he will most likely be on for a while. Poor kid.

I think the hardest part of all of this for me right now is probably Tyler. He is at such a busy age that trying to keep up with him as well as care for Jack is hard.  He missed me while we were at the hospital so now he wants to be on top of me all day long.  But lugging him around, plus Jack, plus Jack's oxygen tank is heavy. And having him climb up me as I'm shoving lasix down Jack's throat is hard. And trying to keep him from cracking open his head while I'm untangling Jack is impossible. And seriously, he is so cute, but look at this face.  It just screams trouble. Yes that is chalk all over his face. Yes, he was eating it. Again.  I look forward to Jack feeling better so I can go back to enjoying Tyler again and not just feel like they are sucking everything out of me by their mutual desperate need for me 24 hours a day.  

Eating chalk

Playing with the oxygen cord


Allison said...

I hope that you get to ditch the oxygen too... it is so hard if he is not used to it especially if he is outside running around! I am surprised that the Lasix is bugging him that much... ours is the generic forosemide and it comes in a dark glass bottle... not compounded by the pharmacy. I have tasted it many times and while it is not a great taste, it is kind of like bitter dark cherry cough syrup. We kept it in the fridge which seemed to help. Maybe your pharmacy can try a different compound or the glass bottle type? It took Grant a full six weeks at home before I felt like he was back to trusting, being happy, and out of pain. We made sure to give him a pain meds dose in the middle of the night (which wasn't an issue since he was waking up every hour anyway!) which really kept on top of the pain. Hopefully given another week at home, he will start to feel better. I am really so impressed with his recovery and I hope that you have some great friends and neighbors to come and give you some help so that you are not quite so stretched with Tyler's needs and Jack's needs. Hugs!


Erica Williams said...

It's so incredible that he went through that big surgery and that he is snapping back so quick! I love to see that he is playing and getting around. Hang in there Aimee! Soon enough that tank will be gone and you'll have one less thing to lug around :)

The Hood's said...

Poor Jack..... lasix is awful. We didn't seem to struggle that much. Alex did seem to hate it more when it was flavored though. Ours was also just the generic in the dark bottle.

Keep up the good work. It will get easier soon!:)