Thursday, June 9, 2011

Now that we are home...

I am so sorry it has taken me awhile to update our blog on how Cain is doing since we have been home.  Honestly, our first days home were VERY exhausting and now I've been enjoying visiting at night with Brad's step-sister, Jennifer, who is still in town helping us out.  Brad went back to work last Thursday, after taking off for Cain's surgery, so having Jennifer here has been a huge relief.

Cain was sent home with way more medicine than I ever expected.

Last week was really hard on all of us.  Cain absolutely hated taking his medicine and would fight us every time he saw a syringe coming his way.  I tried everything I could to get medicine down...mixing it with chocolate syrup, having him drink it out of a straw, and even mixing it with apple juice and having him drink it through one of Callie's bottles.  It was exhausting!  Especially considering he is taking 14 syringes of medicine a day and two crushed pills.  There have been MANY battles!

Cain was busy watching 'Toy Story' Sunday evening so I decided to give him medicine while he was distracted by his movie.  Thankfully it worked like a charm and he took all his medicine without putting up a fight. As you can imagine, he has watched 'Toy Story' several times since then.  It's been the only way I can get him to take all of his medicine.  He is finally doing better at taking the meds he has taken all of his life (baby aspirin, Enalapril, and Lasix) but still tries to put up a fight with his new medicines (Spironolactone, Hydrochlorothiazide, Potassium, Oxycodone).  Thankfully the fights aren't as bad as long as 'Toy Story' is playing.

Another challenge has been keeping Cain's hands away from his scars.  We were told the incision area would probably itch as it was healing.  Either it itches or is sore...or both.  While Cain was taking a nap on Thursday (our first full day home) he pulled off all the Dermabond (a liquid skin adhesion) covering his incision and all the steri-strips (adhesive strip) off his chest tube sites.  I checked on him no less than 5 times during his nap yet somehow he quickly pulled everything off of his chest without me catching him doing it.  I was worried about one of his chest tubes sites as it looked like it still needed to be closed so it could heal properly.  I called our surgeon's NP and she told me how to clean the area and how to reapply a new steri-strip.

I tried figuring out any and every way I could to keep Cain from scratching his chest and the incision.  I  finally came up with buying him onesie's to wear under his clothes.  I didn't even know if they made onesie's for a 2 year old but thankfully they do.  I must admit I thought it was pretty cute seeing him in a onesie again.

Overall Cain is doing great.  It's amazing to me how resilient kids can be.  Just by looking at him you would never have a clue that he had heart surgery two weeks ago.  It's truly amazing.

Thankfully he doesn't seem to have nightmares at night.  Not yet anyway!  At first he was waking every morning around 5:30AM but I think that was because he was in pain and needing pain medicine.  The last 2 or 3 days he has slept peacefully until around 7AM.

Speaking of sleep, Cain fell asleep two nights this week before I could get him to bed.  One of the nights I was putting Callie to bed and walked out to find Cain sleeping in his highchair.

Then the next night, Cain was throwing the biggest temper tantrum about changing into his pajama's so I walked away to ignore the temper tantrum he was throwing.  Once I realized the temper tantrum was over I walked in to find him sleeping on his floor.

Overall, we are all doing very good.  There have been a few times that I've been way more than thankful to have help still in town.  On most days Cain wakes up from his afternoon nap really grumpy.  It's about the same time that his next dose of pain med is due.  He will be kicking and screaming and the only thing that seems to calm him down his holding him and trying to soothe him.  I've been so thankful Jennifer has been here to help with Callie when she is crying at the same time as I'm trying to soothe Cain and get him his next dose of pain meds.  About 15 minutes after he takes his pain med he is back to his normal self.  I'm starting to wonder if he is getting stiff and sore as he sleeps and wakes up uncomfortable.

1 comment:

Krista Phillips said...

He is SUCH a cutie!!! SO SO glad he is doing well! THANK YOU for coming to visit... I really appreciate it!

Sometime soon I need to take a picture of Annabelle's meds at home. She gets 10 of them just at 10PM only (then more at 6, 10, and 2...)

But she is Gtube fed, so I don't have to worry about getting her to take them by mouth. Probably the ONLY good thing about her Gtube!!!