The little things in life

It's really the little things in life that make me happy. A summer day spent by the ocean, a bag of red Swedish fish, finding 5 bucks in my back pocket... but none can compare to seeing Skyler sleeping on her side tonight! Okay, so she's not sleeping on her left side yet, but she is on her right. For ten days now I have watched her sleep flat on her back (totally not her preferred position)knowing that she was afraid to rollover due to pain. Boy, was I surprised to see her sleeping like that tonight. It was like sitting in the sun by the ocean and finding a 100 dollar bill in my huge bag of Swedish fish!

It made me happy.

It's the little things in life...

Recovery

It's been just over a week since Sky's surgery. Sky is doing very well. Her appetite and energy level increases each day. Evenings seem to be the hardest for her. She is often sore, overtired, and just generally wiped out, but it's nothing compared to those first few days following surgery! Her incisions seem to be healing well. She does have one area of increased redness and I am just watching it for now. She goes to her pediatrician on thursday to have the chest tube stitch removed. She's a bit nervous about that, but ready to get rid of it.
I'm a bit tired myself. Her sleep schedule is totally off. She's going to bed at 1am and waking a few times. Neither of us have had a full nights sleep since this all happened. I suspect that will change soon as I have woken her early the last two days. Fingers crossed.
I'm finding it difficult being home all day. I feel guilty for not being at school or work! But I know I am right where I need to be. Luckily, work and school have been very understanding about the situation, not that either had a choice really. I haven't actually looked into it but I assume I am covered under the Family and Medical Act... so I can take 12 weeks off in one year to care for a sick child. Yay! Job security! As far as school... blah... I am so far behind, or at least I feel like I am. I still haven't taken test 3 and the final is a week from Thursday. My professor told me not to worry and that I can take both tests the night of the final. I, of course, don't want to do that. I plan on returning to school on Thur and will ask to take the third exam before class. I haven't even opened a book since the day the school nurse called to tell me Sky was having chest pains! At this point I just need to cram to pass. I'm usually totally against that, I study to remember it, but not this time. So cramming session begins today!
I don't know how long Sky will be out of school. I'm thinking she'll return after Christmas vacation, though I may take her in for a half day next week. I'll just stay with her in case it's too much. We have tons of homework to keep us busy. She is looking forward to "playing school" with me. I, on the other hand, am having "are you smarter than a second grader" anxiety! At least I can contact her teacher if I get confused... hey, you'd be surprised at how confusing her school work can get. They don't teach math the way they used to (but that's a whole other blog!)
So that's recovery in a nutshell. Sky is getting better with each passing day and I am looking forward to things settling down and life returning back to normal. I hope we don't have to go through this again for a long, long, time!
Thanks for checking in on us!

Good to be home

We are home :)

Sky is doing so well! I just can't believe she is up playing considering all she's been through.

I really am in no mood to blog, to be quite honest, but I wanted to just give a quick explanation regarding the whole lead situation.

Sky had surgery to replace her pacemaker and her non functioning left ventricular lead. After the pacer was placed and the surgeon was testing each lead he realized the right ventricular lead was not pacing. Turns out the lead had detached from the R. ventricular wall and migrated to the right atrium. HOWEVER, a DR didn't read her Pre-op xrays correctly and it went unnoticed. We are only human, things go unnoticed all the time, and in the end, no harm was done.

So after surgery they told me the whole lead situation and I was not happy. There was talk about another surgery to replace the migrated lead. One doc hinted around to it, another said no, then another said probably.... it was just a confusing mess. They decided to do another echo the day after surgery and go from there. That echo was awesome. Her EF was up to 70 percent! (That's really good in heart language)

Then today we had to have the pacemaker checked again. I don't know the name of the machine but it's just a computer with a wand attached to it. The wand is placed on skys belly (her pacemaker) and the computer reads what the leads are "doing". This time we learned that the right atrial lead isn't working correctly.

So what does all this mean for Skyler? Good question. It doesn't mean a darn thing. As Sky doesn't require atrial pacing (she is only paced 2 percent of the time on the right) they reprogrammed the device to allow her PM to sense her atrial rate and pace her ventricle. Basically, it should not have any neg effects. They will, of course, keep a close eye on it. As far as the migrated lead, I have been assured that it cannot do any harm.

That is the story of the leads. Think it's confusing? It is, trust me.

Thank you all for thinking about us! I'll be sure to post about Sky's recovery soon.

I'm not sure if this link will work, but here are some pictures of our adventure at Children's Hospital.

http://www.facebook.com/album.php?aid=339457&id=599733760&l=ab1f4e03d1

Picture

Trying to upload a pic...

Update

Sky is awake and alert. She's in a lot of pain but the main meds are really helping. There was a complication. The right ventricle lead ( a different one that they were replacing) slipped out of place and up into the right atrium. They could not fix this since they were on the left side. Doctors are hopeful that the new left lead will be enough. If in a month or so her ejection factor doesn't increase then they will have to perform another surgery.... A less invasive bit still sucky surgery. Time will tell.
Sky is great though. She told me I should go to bed and get some rest. That girl is always thinking of others. I love that girl!

~Jacinda

Update 2

Just got word that the lead is in and they are starting to put the generator in now. Everything is going well.

~Jacinda

Update

Sky is in surgery now. She will spend the night in the ICU and the chest drainage tube will removed tomorrow. I'll update again soon.

~Jacinda

Teeth

Sorry, I guess I should have been more clear regarding the removal of Sky's teeth prior to being placed on a ventilator. The teeth are baby teeth and they are very loose. The doctors think it would be best if the tooth fairy came for a visit while Sky is fast asleep.

I'm finding it a lot easier to worry about a few missing teeth than the actual surgery, so there is no need to remind how easy it is to pull out teeth. I know it's no big deal :) Sky doesn't know they are pulling them. I did tell her, however, that the breathing tube might knock out a tooth since they are loose and that the surgeon will put it in a bag for the tooth fairy.

This is the only lie I have told her about tomorrow. That's why it's killing me. But I think telling the truth, while making me feel better, will only scare the heck out of her. So I will stick to the story and make sure the tooth fairy brings extra expensive gifts!

Surgery

Skyler is so excited for her surgery on Monday. It started off that she was just excited to be spoiled rotten but now she's just looking forward to being able to eat again. All I heard today was how hungry she is, yet the thought of food made her sick. When she did eat she vowed never to eat again because it made her stomach ache so much. I think she managed to get down a banana, 2 clementine slices, a couple teaspoons of rice, 3/4 of a Mcdonald's hamburger (yep, I know) and a small bowl of plain pasta. I have been reminded of her G-tube days and I don't like it. Luckily, once her new pacemaker is in she'll regain her appetite.

Maybe I should start at the beginning?? At least the quick version of the story.

I got a call from Skyler's school nurse that Sky was having chest pain and that her pulse was irregular. I didn't panic, this isn't the first time I have been called to the school for chest pain. In the past she always checked out okay so I didn't think this time would be any different. I was wrong. I took her to the ER at Children's Hospital and after many, many, hours (of course), we learned the lead attached to her left ventricle had stopped working. Sky's chest pains were caused from arrhythmia's. Thank God Sky is so in tune with her body! The Doctors also suspected that Sky was feeling the lead pulse, shocking her (though it is NOT a defibrillator) and causing a tightening feeling in her belly . They had no choice but to turn off the pacemaker.

Which brings me to her surgery. Seems pretty basic, pop out the pacer and plop another in. Unfortunately, that is not the case. A new lead has to be attached. That isn't routine with Pacemaker changes. The same leads always stay in, just the generator is changed out. So how do they get those pesky leads in? I'm glad you asked! They will perform a thoracotomy, inserting tools into her side rather than cutting thru the sternum. The tools will be guided towards her heart, will cut thru and remove scar tissue if possible and will cut thru the sac protecting the heart muscle. A lead will be scoped down and placed on the left ventricle. The top of the lead is a coil and it's just twisted into place. Then they will spend time testing the pacemaker to make sure they have it in the right spot.

The pacer in sky's stomach must come out. They will cut thru the scar she has now (probably a little longer since she's grown) and pull it out. They had trouble with this during the last surgery but it wasn't anything life threatening. The pocket that they make to slide the pacer in kept tearing, so they had to keep moving spots. Hopefully that's not an issue this time.

After the surgery she will go directly to the ICU. She'll have a few IV's, including one in her neck, a chest drainage tube, a urinary catheter, she'll probably still be on a ventilator and she'll have a couple less teeth. Yes, I said teeth. They need to pull two before putting in the breathing tube! This really bothers me, which is hysterical.

Recovery: They don't think she'll be in the ICU long at all. Any tubes and drains she comes out of surgery with should be removed rather quickly. We'll then be moved into our room on the cardiac floor. I really hope I don't have to share a room with a screaming baby. Selfish of me, I know. But unless you have roomed with a screaming baby, that doesn't belong to you, then you have no idea!

So tomorrow we are having a family party. My mom is cooking Sky's favorite foods and I have a feeling the spoiling will start once my mother walks thru the door! And that's good. We'll eat, we'll laugh and we'll love. (Oh, kinda like eat, pray, love but way better... mostly because that movie sucked and my life doesn't)

Thank you for all the well wishes. We truly appreciate it.