ICD info

The Medtronic representative, Helios, gave us a lot of information regarding the restrictions that go along with having an ICD. This will be a lengthy post!

Some interesting and important information:
~Mariah's device is an ICD (implantable cardioverter defibrillator) as well as a pacemaker. If her heart rate decreases to 40bpm or lower it will pace her heart back up. If it reaches 220bpm it will attempt to lower her heart rate once. If that attempt is unsuccessful, it will deliver a shock. If her heart rate reaches 250bpm it will automatically deliver a shock without attempting to pace her heart rate lower.

~Mariah cannot EVER have an MRI. The magnetic component of the MRI will destroy her ICD and will cause the leads that go into her heart to act similar to a microwave and start "cooking her heart muscle". Obviously NOT a good thing!! We will be getting a medical alert bracelet ASAP.

~I think I covered this in a previous post but I'll list them again: she shouldn't use a chainsaw; if she uses a shotgun, she needs to brace it against her right shoulder; she shouldn't be tased or have a stun gun used on her; if she becomes a mechanic, she shouldn't work on a vehicle's alternator; she's fine to go through the magnetic inventory control areas of retail stores but shouldn't lean on the alarm systems (not like she ever considered doing that in the first place, but it's nice to know about); she shouldn't place magnets over her device...and I'm sure there is more I can't remember right now.

~She can use a cell phone, but can only be placed at her right ear. If she uses a hands-free cell phone ear piece it must not be a "blue-tooth" device. She can use blue tooth devices as long as they are used away from her device, such as in her lap.

~Mariah is NOT to wear the magnetic healing bracelets, magnetic healing pads and cannot use a magnetic bed mattress.

~If Mariah receives an instance of one shock only, we are to call her EP's office during normal business hours. If her ICD delivers multiple shocks she is to go straight to the ER. At the ER they will determine if the shocks are/were appropriate. If she has a "normal sinus rhythm" there is therapy the ER can deliver to bring Mariah out of the "shocking storm".

~When Mariah goes through airport security, she will set off the alarms. She has been given a temporary ID card explaining what device, model number, manufacturer, etc, until she receives her permanent card in the mail.

~The Medtronic representative has offered to provide loaner educational materials and demo models of ICDs, a heart model, etc, if Mariah ever decides to do a research project for school. Since she has completed her biology courses we've discussed talking with her teachers about extra credits (or something similar) for her to provide a presentation of arrythmias, Long QT Syndrome and ICDs.

~Mariah's device has been equipped & programmed with the "HBO option" according to Helios, the Medtronic representative. Mariah was sleeping during the time he was checking her device so he told me to give her the following information:

She has the "HBO Option" in her device. This means if she goes outside at exactly 5:00pm on any given day (not 4:55pm, not 6:30pm, but precisely 5pm) and stands in the middle of our yard (rain, snow, sleet or shine), holds both arms straight above her head (after her healing is completed) and turns counter-clockwise FIVE times, she might be able to pick up the HBO channel!!! She found this quite funny! Now, let's see if she tries it out....hee, hee!

I'm sure I've left out some of the information about her ICD, but this is a general over-view of what we were told.

10/06/08 photos

Mariah was discharged from the hospital Thursday AM. Besides being in pain and weak (to be expected) she is doing well. She continues to amaze us with her strength! Below are some photos of her incision. All photos of Mariah and her incision are posted only with her approval and permission.


The outer layer of her incision is closed with DermaBond http://www.dermabond.com/
(an adhesive which seems similar to superglue). Because of the adhesive/sealing properties of this substance, she doesn't need dressing over her incision. She did have a nice, snug pressure dressing for about 24hrs due to the swelling that started in the recovery room. The DermaBond will gradually peel away from her skin and we will simply need to trim the portions of the adhesive peeling away with scissors. She does have sutures below the surface of her skin which are absorbable.

This photo shows Mariah giving us the "thumbs up" sign in the recovery room shortly before the swelling started.

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The picture below shows her incision before the swelling started and the pressure dressing was applied:

Tuesday, October 7, 2008

This will be a lengthy post!!

The representative, Helios, from Medtronix (the company who manufacturers the ICD) came in to check and verify the settings of her device around 9am this morning. It's too late for me to think clearly so I will try to post more information sometime in the next few days when I can access the notes I took while he was talking and can formulate my thoughts better!

11:30pm ~ with all the meds the RN's administered, Mariah is now sleeping well and hasn't woke up having difficulty catching her breath like had been the case all throughout the day today. I hope and pray she sleeps either until the nurse needs to take her vital signs or she needs her bloodwork at 5am Wednesday morning. Bless her heart.

9:30pm ~ Mariah has had difficulty catching her breath and feeling like she can't get enough oxygen despite her O2 saturation being in the upper 90%. This has been happening all evening. Now, she is feeling pressure around her chest and says she feels like there is something very heavy sitting on her chest. Her lungs sound clear but she cannot get relief from the pressure, chest pain and shortness of breath. Her terrific RN started oxygen through a nasal cannula so Mariah might not feel so poorly with her breathing. The O2 did not help and the cardiologist on-call for the office was called. He (Dr. Kaiser) ordered increased litres of oxygen, Ativan to help calm her breathing and a much larger dose of morphine than she had been getting. Shortly after the increase in O2, Mariah's oxygen decreased to the lower 70%s which is entirely too low and her heart rate slowed to 43bpm. The RN's (she had two at her bedside by this time) quickly had her start using her incentive spirometer again to help expand her lungs more effectively. Thankfully, her oxygen saturation started to increase.

6:00pm ~ She's on the move, again. Ugh! Mariah was being "evicted" from the hospital room she was moved to last night. The room was needed for two 6yr old boys and the nurses were moving her back to the room she was in originally....the room with the enthusiastic Yahtzee players. Mariah expressed her concern to her nurses (through tear filled eyes) of being back in the room with all the insensitivity and loudness of her former roommate. Her nurse said she would remind Mariah's roommate of the necessity of being sensitive and quiet and if things got out of hand we could either ask the neighbors to stop or simply talk to her nurse. Once we arrived in the room, she was blessed, temporarily, with her teen roommate and the mom being very respectful. God is good.

5:30pm ~ Mariah is being her typical nurturing self and INSISTED I go downstairs to get a bit of food to bring back to her room for me to eat. Goofy girl keeps asking me, "Mom, when was the last time you ate? You HAVE to make sure you are eating!!!" This was the first time she had been left alone since her surgery and wouldn't you know, it is the time her cardiologist EP comes in to examine her. Yesterday, right after her surgery, he said he thought she would head home either Tuesday afternoon/evening or first thing Wednesday morning. Due to several issues, he said he does NOT want her discharged tomorrow and will re-evaluate her on Thursday.

4:30pm ~ Another walk! This time, she was adventurous and made a big loop outside the pediatric area. She placed her right arm around my shoulder for support and to steady her and Bobby was on her left side in the event of her needing additional support or becoming too dizzy and requiring quick assistance to sit on the floor to avoid falling. She did very well and only needed her arm around my shoulder to brace herself and for support.

1:00pm ~ Mariah was blessed with some nice, sound sleep for a couple of hours this afternoon. (I took advantage of that opportunity and slept a bit, also).

9:30am ~ per Mariah's EP's orders, we went for a walk partially through the pediatric unit. She did very well and was thankful for the pain medication she received when she returned to her room. Of course, she was weak and dizzy (not eating since 11:30pm Sunday night will do that to a person in addition to the meds she's taking). I am SO proud of how strong and brave she is!!

8:00am ~ Mariah's cardiologist evaluated the incision and entire area and was quite pleased with how it appeared! Her chest xrays were, in his words, "perfect".

8:00am ~ The pressure dressing was removed and showed to be very effective at reducing some of the swelling in the area. Her incision is much more flat and the entire area doesn't seem nearly as swollen as before.


7:45am ~ the EKG Mariah just had went well other than the pain involved in removing her arm from the immobilizer to place the stickers for the leads. She's doing well.


7:15am ~ She's back in her hospital room (and is still the only patient occupying this room, thankfully). Her nurse gave her pain meds right after she arrived back into her bed since she was in so much pain from the transport and slight movement of her left arm after the immobilizer was removed for the xray.


6:30am ~ Mariah had several chest xrays to check the placement of her ICD and leads. Her shoulder immobilizer needed to be removed for this. Getting into the different positions required for the xray was very painful for Mariah, despite having IV morphine administered prior to the transport to radiology. BUT, she handled it like a champ!!

12:55pm ~ October 6, 2008

Mariah's incision and surrounding area was looking incredibly well when we first entered the recovery room. Around 12:55pm the incision, area over the device and into her armpit started to swell. The EP came shortly before 1:30pm in to check what was happening and decided there was some increased bleeding under the skin and ordered compression dressing over the area....NOT COMFORTABLE to have placed, to say the least! The compression dressing will stay in place until at least tomorrow morning.

More later...

11:45am ~ October 6, 2008

Just waiting for the recovery room nurses to allow us to go in and see Mariah....

Currently she still has a breathing tube in place since she has not woke up yet. Once she is conscious and her breathing tube has been removed we will be able to go in and stay with her until she is transported back to her room.

Waiting...

11:20am ~ October 6, 2008

Mariah's EP just came in to report she's out of surgery and it all went very well. She is in the recovery room at this time. Her EP was successful in placing the ICD under her pectoral muscle. He was quite pleased with the aesthetics of her device placement. He said it was barely noticeable when she was laying flat, except for a little more fullness. Even the cardiac nurse case manager saw it in the OR and thought it looked great. Over time, even the fullness should decrease slightly since inevitably there is swelling. Her EP gave a paper copy of the xray showing the leads to Mariah to help satisfy her curiosity. He also gave us a demo ICD to keep. Mariah's device is about 10% smaller than the one he gave us but it at least gives her an idea of her ICD looks like.

She should be in the recovery room for about an hour. We will be heading down to the waiting room outside recovery and as soon as she is awake they will let Steve and I go in to see her.

Just to give an idea of what the device Mariah has had implanted today, the photos below show the ICD demo model next to a an ink pen.

10:30am ~ October 6, 2008

Tammy, the cardiac nurse manager provided us another update. She has been great to keep us posted on what is happening. Our sweetheart's surgery is progressing very well still. The device has been implanted; however, the cardiac nurse manager still wasn't sure if it was placed under or over the muscle yet. We will find out before too long, anyway, so it really isn't necessary for us to know those details at this time. Right now the EP is testing the device. This means he is putting her heart into a fatal arrhythmia to make sure the ICD is effective in shocking her heart back into a normal rhythm and the energy to produce the shock is adequate.

After the EP (pediatric electrophysiology cardiologist) comes into her room to give us a report on her surgery, we will be able to go down in a waiting room near the recovery room and most likely have the opportunity to sit with her part of the time she's in recovery.

The EP said she should probably avoid pursuing a career in arc-welding and if she decides to become a mechanic she won't be able to work on the alternator in the cars. Our booklet says she should NOT operate a chainsaw and should NEVER have a stun-gun or a taser gun used on her. There goes her career as a criminal! No tasers...bummer! Guess she will need to choose another career path (hee, hee!!). Joking aside, she can't ever have an MRI. An MRI will destroy her device and will cause the leads in her heart to act similiar to a microwave and start "cooking" her heart tissues. We will be ordering a medical alert bracelet in order to alert any medical professionals to her Long QT Syndrome and ICD in the case of her being unconscious in the ER, etc. Oh, she will also trigger the security/metal detector systems in airports. She will carry a card in her wallet to explain why she set the alarms off so the TSA doesn't mistake her for a terrorist!

More later...

9:40am ~ October 6, 2008

The cardiac nurse case manager gave us an update on Mariah at 9:40am. Everything is going great. The leads have been placed in the atrium and ventricles of her heart. When the nurse left the OR/cath lab the EP was starting on creating the pocket for the ICD device. It was still undecided whether it would be placed under the muscle or over it. She's tolerating surgery very well and we she might be out of surgery around 11am.

The wi-fi signal is excellent in her room whereas down the hall in the family lounge it is very poor. Once Mariah is feeling a bit better, it will be nice for her to have a good connection so she can check her email, update facebook, etc, if she is up to it.

We are SO grateful to have such an amazing extended family. When we left the family lounge, there were at least 15 people from our family waiting, including my parents, of course. Steve's parents will be here this morning. We are so very thankful for ALL of our family and their support. We are blessed.

More later....

8:24am ~ October 6, 2008

Mariah has just been taken back for surgery. She was very frightened but ready for it to be done and over with. We still aren't sure if her ICD will be over or under the muscle. The pediatric EP will make that decision when he has her in the OR and is able to determine the best placement for it. It's estimated she will be in the OR for 2-3 hours. We are getting ready to head to her room since we should receive an update from the cardiac case manager around 9:30am and they've asked us to wait in her room rather than the waiting room so the doctors and nurses could locate Steve and I easily. She was a bit disappointed to be sharing a room with another patient but seemed okay once she realized I would still be able to stay in the room with her. More later....

Asked, answered & scheduled

Round Two: Our prayers have been answered regarding Mariah's surgery!

Two days prior to Mariah’s scheduled surgery on September 18th to implant an ICD (implantable cardioverter defibrillator), we received a phone call telling us Mariah’s surgery was cancelled. Our insurance company was refusing a preauthorization for the surgery, stating it “wasn’t medically necessary.” Uh, yeah, right! Big Joke! A surgery to help preserve the life of a 17yr old isn’t medically necessary?!? Wow. I wonder how a person can determine that and sleep soundly at night.

Since Mariah's pediatric EP was on vacation until the day she was supposed to have surgery, we had to wait for him to return to the office to appeal the denial with the insurance company medical director. The afternoon of Tuesday, September 23rd was filled with numerous phone conversations between myself and the EP's office. The first call the EP indicated he didn’t have a huge amount of hope of our insurance approving it due to this company’s reputation. He said our insurance company is notorious for being very difficult to work with. He advised us we had a couple of options, but none as definitive as this surgery and device that will protect Mariah’s life...we could pursue genetic testing (25-30% who test negative still have the disorder, the genes causing their LQTS just haven't been identified), waiting until she looses consciousness on the insurance’s terms, etc. The EP said he would contact our insurance company’s medical director and if we didn’t hear anything within the next week, to call him again to see if any progress had been made in the appeal. I phoned Mariah at school and left her a voicemail to let her know the status of things and just told her to hope and pray ~ as she had been anxiously awaiting any news. What was meant to happen would happen. Less than an hour later, I received a phone call from a person in the office who said “we have a tentative, unofficial approval for surgery” but we needed to wait until it was official. Approximately 10minutes after that phone call, Mariah’s EP called me directly and said, “we have an approval, our office will take care of all the details and you don’t need to worry about anything”. It is now scheduled for October 6th. A good source of information can be found at: http://www.sads.org/

Please keep Mariah in your thoughts & prayers for her to have continued peace about the decision to have this done and that she will heal quickly. She really has a great attitude about it and doesn’t seem concerned with the scarring and bump this will cause. She has chosen to have it placed under the muscle which has a more uncomfortable recovery but it will have increased protection and will be less noticable. A person we’ve become acquainted with who has an ICD generously offered to have her photographer husband take photos of what her ICD area looks like and it was helpful for Mariah to see this. This lady is the same height and weight as Mariah so it gave her a very good idea of how her body could appear after it is all healed.

Mariah wants to spend the night before in Portland to avoid having to wake up at 2:30-3:00am the morning of her surgery (she’s a typical teen with how long it takes her to get ready in the morning...). As long as there is a room available, we hope to stay at the Ronald McDonald House the night prior to her surgery and have a room there until she comes home (for Steve & any of the kids that stay up there ~ I will be staying on a cot in her hospital room with her). We were told to expect at least a 2-3day hospital stay, depending on how well she does.

Mariah and I were talking about her surgery the other night and she is actually “excited” for it. Not excited to have surgery and all the recovery that will be involved, but she’s “excited to have peace of mind and know I am protected all the time.” She told me it will relieve a lot of the worry she has day to day and I realized that even though she doesn’t speak of being worried about her heart very often, it is definitely on her mind a lot. She said she’s thankful for her dad and I allowing her to make the majority of the decision about it. She told me she is glad she could finally take control of something regarding her health, since so much has always been outside her control. I was in tears when she said, “you know mom, if something happens to me before I have my surgery or during my surgery, it will be God’s will and I’m okay with that”. I continually learn so much from these children. God is amazing.

Thank you for keeping Mariah in your thoughts and prayers. She is such a blessing and we just wish her complete peace and quick healing as she goes through this surgery and recovery.

Postponed

Mariah was scheduled for her ICD placement on Thursday, September 18th. This afternoon, I received a phone call from the EP office saying the insurance company was refusing to give pre-authorization for it as they were determining it to NOT be medically necessary. The EP office has done all it can up to this point so her surgery was cancelled for tomorrow & tentatively rescheduled, pending insurance approval. The EP is out of the office until Thursday AM and they will put him onto appealing it to the insurance company & discuss it with the medical director; however, at this point, the office staff can’t do anything more about it. The EP is on vacation. Needless to say, Mariah is extremely disappointed with this as she was completely ready for it. The timing was perfect, in our eyes, due to school, etc. I keep reminding her that this delay is temporary & her EP will help us get it figured out when he’s back in the office. We are also taking this time to realize it needs to happen on the Lord's timing, not our own. God's timing is always perfect.

Now, we are just waiting...

Less than 2 weeks

Mariah's surgery will be in less than 2 weeks. She is actually anxious to "get it over with and start the rest of my life with less worry". I'm continually surprised by her maturity. Gotta love that girl!

The nurse case manager from Mariah's cardiologist's office sent over a referral to the Ronald McDonald House (RMH) at the hospital so we will be able to have a room there for up to 4 days. The RMH's are wonderful in that it is only $20/night and have complete facilities for families, including an amazing kitchen, teen room, laundry room, family room, etc, in addition to a private bedroom & bathroom for each family (we stayed at one when Josiah was born prematurely). Mariah wants to spend the night before her surgery in Portland to avoid needing to leave our home at 4am and as long as there are rooms available, we will be able to stay at the RMH (this particular RMH doesn't typically have to turn families away). I think the younger children will come home after the surgery to stay with grandparents and having a room at the RMH will allow Steve to be able to stay there as long as nothing pressing comes along with our business. I will be staying in Mariah's hospital room with her; however, having somewhere to go to cook a meal or rest while daddy stays with her will be a blessing.

The younger children want to be at the hospital when Mariah has her surgery and I am very thankful they want to be there for their big sister. We are so very fortunate to have an amazing extended family who are more than happy to help us out during this time.

Potentially shocking ~literally~~

In approximately three weeks, my first born child, Mariah will be entering the hospital to have an ICD placed. ICD is an "Implantable cardioverter defibillator". This surgery is due to her heart condition known as LQTS (long QT syndrome). Currently we have a portable defibrillator we carry along with us.

Having her ICD implanted will eliminate the need for her AED, as well as allow her more freedom in life. She will never be allowed to participate in contact sports due to the risk of impact to the device and affecting the leads, but she will be able to continue with her high school softball career.

As a mom, I've wanted her to have the protection provided by this device implanted for years. Mariah's EP (electrophysiology cardiologist, Dr LeGras) was previously hesitant to implant the device. As a result of some recent events, he said it would be "reasonable to not place the device" but would be "completely appropriate" to have the device implanted. Since I'm her mom, I could trump her decision if she chose to not have this done....but, since she's 17yrs old and basically an adult and grown lady I made the choice to let her make the final decision. It is her body, her heart, her life and ultimately she has to live with the choices she makes. She chose to have the device implanted and shortly thereafter told me she felt much relief in her decision. I am VERY proud of her....not because she made the choice **I** would have made for her, but rather because her decision was based on very mature reasons.

A bit of information regarding an ICD:
~it will be implanted in her chest, similar to where a pacemaker would typically be placed
~she has a choice of on top of the pectoral muscle or below it. Below the muscle will result in a more intense recovery, but the device will be less visible.
~if she enters into an arrhythmia that is potentially fatal, this device will "shock" her heart muscle into an appropriate rhythm -- something very painful if she's awake during the shock.
~there is a very real chance of "inappropriate shocks", meaning it could shock her heart when it is not needed and while she's awake
~the ICD could need replaced in seven years (or sooner if she requires "shocks").

BUT....this will protect her life and protect her. We are SO incredibly blessed that we have this option!

I might add more to this post in a few days, but wanted to let our family and friends know what was transpiring.