Cabin Fever

I usually enjoy rainy days. That sleepy feeling of wanting to do nothing but watch movies, eat junk food and relax on the couch all day, it's a good feeling.

Usually.

I've been stuck inside the New Hampshire chalet for 3 days straight due to rain, cold, and one stubborn Sun. I came up with my friend so we could study for the big state exam on the beach, basking in the Sunshine. Instead we have been forced to study inside all day. It's quite depressing.

Cabin Fever is setting in.

Videos coming soon.

Goodnight and sweet dreams. ;)

Happy Father's Day!

This says it all.

A video Sky and I made for Rick.

http://www.youtube.com/watch?v=FsyfvTDq3kc

I'm having trouble uploading it to this site so just follow the link I provided above. Enjoy!

Transvenous approach for epicardial pacing: A Mom's Idea?

Well, that didn't last long. Sky is running around and I can't keep her still. She's also eating everything in sight! I feel like all I do is tell her to stop jumping and make her food. It's never ending. It just amazes me that she had surgery 9 days ago, a 7 hour surgery to boot.

I don't think I explained what happened during her surgery and why we have to be careful about moving her left arm. During the surgery the Doctor had trouble getting her lead into the proper position because Sky's veins are too small. It's difficult to explain without showing you a picture but the vein (coronary sinus) that runs along the hearts muscle was the problematic area. The lead had to go in a certain amount in order to sit properly, and if I understand correctly, exert a certain amount of pressure on a part of the lead that activates the coiled tip. The coiled tip is what keeps it in place. If the lead slips out of position even a little bit the part that keeps the coil, well, coiled, will fail and the lead will straighten and fall completely out of place. I probably didn't explain that very well, sorry. Anyway, the doctor is worried that since he couldn't get that lead in all the way that it will move and Sky will need yet another huge surgery.

I came up with this great idea while talking about the surgery with the doctor. I'm writing it here in hopes that someone will steal the idea and make it happen. The doctor was explaining the pros/cons of the transvenous approach as well as the thoracotomy epicardial approach. The transvenous is less invasive, faster, and easier but not always successful in kids with smaller veins. A small incision is made in the left chest and leads are run down into the heart and attached to the pacemaker, which is placed in the upper left chest wall. The epicardial approach is very invasive. A large transverse incision is made along the rib cage, the lung is deflated, and the leads are placed on the outside of the heart. This approach works best for kids.

Ok, so now that you kinda have an idea of the 2 different approaches...... I suggest a third approach, a hybrid method if you will. I suggest making an incision in the upper chest wall, dropping two leads down into the heart (right atrium and right ventricle). The ventricular lead is the issue. It cannot be placed into the heart (deadly). It must be placed either in the coronary sinus or on the myocardium itself. My hybrid method for the LV lead is a transvenous approach for epicardial pacing. Drop the lead down the vein just like the explained transvenous approach but once you get close to the heart "pop" the lead out of the vein and place the coiled tip directly onto the heart. This could be done (in my mind at least) by inserting a chest tube to deflating the left lung, gently go thru the heart covering and inserting a small instrument (laparoscopy) that could manipulate the lead into place. It is still invasive BUT it is no way as brutal as thoracotomy.... Especially if it's your 3rd thoracotomy! I asked sky's electrophysiologist why this approach isn't used. He paused and told me they don't have the instruments to do it. I told him to get on it and make it happen. So could someone out there make this happen please? You can take most of the credit, just let me be on the research team. Thank you :)

Side note: I'm not suggesting I am the first person to think of this. I have not been able to find any literature on the idea. If you are reading this and thought of it before me, yay for you... make it happen please.

testing... dancing Sky

Morphine dance

This was taken the morning after her 7 hour heart surgery!

Slight scare

I had a little scare this morning with Sky. When she woke up I noticed she had blood on her shirt. Her incision had what appeared to be a blood bubble and it was leaking watery blood. Not only that but she had a red papular rash all over her chest. I took a few pic and sent them by email to the doctor. Her Doctor replied right away and said the rash looked like an allergic reaction, probably to the tape or cleansing solution, and the incision did not look infected. We'll just keep an eye on it. The bleeding has stopped and I gave her Benadryl for the rash.

As far as Sky, she is doing great. She's up moving around more and walking a lot better. She's having no trouble keeping her arm still, something I was worried about. She wears her sling when she's up and it helps remind her not to lift the arm.

I'm thinking about stopping by the school tomorrow so Sky can say hi to the school nurse. She's looking forward to grossing her out with her new scars! I also promised her a Starbucks decaf carmel macchiato.... the child takes after me, what can I say?

Recovery

Just a quick blog to update you all on Sky's progress.

Today was a better day for Skyler. She was up and walking around a lot. Her arm and foot are still sore but the pain is manageable with percs and Motrin. She is totally grossed out by her new scar and her stomach scar is pretty nasty too. The doctor was so thoughtful though. During surgery he cut away some of her old stomach scar since it was pretty wide. He wasn't able to cut it all away because it would have looked odd when her closed her up, but at least her stomach scar will be thinner.

Sky is still walking funny but her heels are no longer red. It's so odd that she developed pressure sores! It is not something they normally see in healthy kids. It's mostly seen in the obese or malnourished. I guess her body couldn't handle such a long (7 hour) surgery. When she has surgery next time we'll have to take care this doesn't happen again. Thankfully they were just a stage 1 when I noticed them. She woke from surgery complaining that her feet and arms hurt. I took one look at her heels and realized what was going on. I propped her feet up on pillows and took care that the heels were not touching anything. The doctors, anesthesiologist, and the EP nurses came in to check on Sky and took the red heels very seriously. They were surprised this happened, but some things are just unavoidable. For the record, they took all appropriate actions during surgery to try to prevent this (gel packs, special mattress). It was just a long surgery.

Taking care of Sky has been a little rough this time around. I have an awful cold and just want to sleep! Thankfully Rick isn't working this weekend and has been able to help. He did all the laundry, went food shopping, made dinner and attempted to make soup. I laid on the couch barking orders for most of the day. :) I'm going to try to do the same tomorrow.

I'll post some pictures tomorrow. Thanks for checking in on Sky!

Home

Sky is home. Amazing!

She had an OK night. She vomited a few times and is in some pain but she is doing well. Unfortunately, she developed pressure ulcers on her heel due to the prolonged surgery. This makes walking pretty uncomfortable. In fact, this is the main thing she is complaining about. We just need to keep an eye on them and bring her back if they get worse.

She has been told that she must take is easy for one month. We need to try to keep that left lead in place! That means no running around, lifting, raising her arm above her head and no swimming. We go back next month for a check up.

Thanks for checking in on us. I'll post again later.

Still in surgery

Sky has been in surgery for 6 hours now. They are having problems getting the left lead into a good position. I don't know how much longer till they give up trying. :( I have no idea what will happen next, I just know this was supposed to be a easy 3 hour surgery.... the kid cannot catch a fucking break.

I'll post once I know more...

Surgery date is set

We are home from the hospital, finally. What an interesting visit we had. First I have to say that Skyler is such an amazing child. She wrote a bunch of questions and concerns for her and her doctor to discuss. I politely excused myself from the room so they could speak privately. I figured she'd be more comfortable speaking to him without me in the room voicing my opinion. So I left the room and 10 min later the DR came out because he got a phone call. Sky told me that he was talking to her about turning the pacer on. She was too scared to tell him she didn't want that. So when he came back I told him Sky was worried about asking one certain question. He got the hint, I left the room, and they continued to talk. 10 minutes later he had me come back in the room and he told me that they were not turning it back on and that he was going to replace the pacer. Sky will be having surgery Thursday. The Dr will move her pacer from her stomach up into her collar bone area. The wires will be placed into the vein in her neck down into the heart and the leads will be attached. We will then spend the night in the hospital and be released the next morning. She'll only miss a few days of school too. I'm thrilled we are going this route. The other option was placing the leads on her heart (rather than in it) and she would have had to have a huge thoracotomy as well as a sternotomy. It would have been so brutal. I'm relieved she doesn't have to go through that.

So that's my story :)