Enjoying Some One on One

We have found enough to keep us busy.  Sunday, we were able to go to church and see many of our dear friends there.  So many wonderful people, good to see them.  Our awesome friends the Gee's and Alhouse's let us borrow a car so we can get around, very kind of them.  

Monday Lindsey had a blood draw at the hospital.  We ran into our OT from the Berlin days, Sandra.  Fun to see her.  Then we went to dinner at the Gailbraith's.  Great friends and wonderful family, very nice of them to invite us over.

Yesterday we went to the movie theater.  It was a matinee and we were the only people in the theater, which was really nice. Then we went and did a little shopping and ate at Chipotle. It has been nice spending some one on one time with Lindsey.  I was telling her this morning, not every sibling gets this opportunity, so we will certainly enjoy it.  

Lindsey has been checking in with school in the mornings.  Which has been nice, as it gives her something to do and be responsible for.  Her pain is getting better, she is needing less pain medicine and Tylenol.  Working with her on moving her left arm a little more.  She is a little hesitant to move it, for fear of pain.  But, she needs to move it a little to keep the muscles from tightening up.  Hopefully when we go in for clinic on Tuesday, they will give her some exercises she can do, for now we know she can't lift her arm higher than her shoulder.  They are trying to protect the area where the incision is.  The doctors want to make sure it heals well.  The swelling at the site where her defibrillator is has decreased enough that she can actually feel her device.  That was a little "weird" for her to feel it.  

We made a list of things we want to do while we are here.  The nice thing of knowing the area, is we have our favorite places we like to go.  We plan to visit those places we haven't seen for awhile. Along with a possible pedicure and some ice cream. I feel bad for the pressure Jason is feeling at home with all he has going on.  It is the most frustrating thing, not being able to help and adding the things I would take care of onto his plate.  I'm trying not to let the guilt overwhelm me when he tells me about his day, and I tell him about mine.  However, it is nothing I have control over, so I will look at this as valuable time to spend one on one with Lindsey.

The Gee and Alhouse team

Sandra our Berlin OT friend

Lindsey and I the only ones in the theater

A sweet package from the staff at the North Powder School. Brightened up our room. Thank you NP Staff, you are amazing!!

Out of the Hospital on to RMH

Lindsey slept better than she thought she was going to last night, which was a big relief. She was still in quite a bit of pain this morning, but they gave her some stronger pain medication and that has seemed to work.  The EP doctors came in and tested Lindsey's new device, it was really weird for Lindsey.  They made her top heart beat at a pace of 100 bpm, then made the bottom of her heart beat at 100 bpm.  Lindsey said she could feel her heart beat faster and it was a little crazy.  Good to know that it is working and everything is where it is supposed to be. It was fun to see the EP team again, who took care of Gage when he had his pacemaker.  They are a good group of doctors and nurse practitioners. 

We had a bunch of our favorite nurses from the 3 West days working today, and even got to have one be our actual nurse, Nicole. It was just like the old Berlin days.  I was fortunate enough to sneak out of the hospital for a brief moment this morning.  My good friend Emily Wessler told me about a retirement parade for teachers and staff at Nixon Elementary.  One was Mrs. Mary Blazinsky who was Gage's teacher while he was on the VAD.  Emily came and picked me up and it was so priceless to surprise Mary and congratulate her.  I even got Gage on the phone to tell her "Hi".  Highlight of my day! Thank you Emily!! 

Now to figure out what to do for the next 10 days. HMMMM.... We are back at the RMH, which we are so grateful for.  However, it is ran a little differently with Covid restrictions.  You can't leave your room, all the sitting areas, workout room, play rooms and game rooms are closed.  Meals are served for an hour and a half in which you can sit in the dining area and leave as soon as your done. It is not the fun RMH we knew, I am sure it has been difficult for them trying to keep families safe with Covid.  I sure feel for those families who are in the situation we were in years ago.  They are not allowed to have family here with them and there is nothing to do.  It really makes me grateful that we are only here for 10 days!  We do have a blood draw Monday, clinic on Friday and then our post op with EP on Tuesday the 1st. Lindsey has felt well enough today to walk home from the hospital and around the mall to get a few items we left at home.  We will probably explore our favorite places. 😀

Lindsey heading out with Sid the sloth

Patrice one of our favorites

Nicole who is also a favorite and our nurse today.

Emily, Mary and I

Emily's son Ben who was a great friend of Gage's.

All Went Well

 The surgery went really well.  They ended up not taking her back until 2:00pm instead of 11:15am.  Needless to say she was a little "hangry" by the time they took her.  Being on steroids and not being able to eat can form quite a monster.  The surgeon placed what they call an ICD.  It is a combination pacemaker and defibrillator. They implanted the wires on the inside of her heart.  Gage's defibrillator was placed on the outside of his heart when he received his.  Technology has come a long way.  An anesthesiologist did a nerve block when she was asleep to numb all of her chest area so she would have less pain when she woke up.  However, I think the area below where the device was placed was numbed, but not where the actual device was inserted.  Needless to say, she has been really sore.

The doctors would like for us to stay in the area for 10 more days.  Both the transplant doctors and the EP (electrophysiologist) doctors.  Some of the antirejection medicine Lindsey was on makes wound healing more difficult, so they had to do an extra layer of stitches for precaution.  They took Lindsey off of these medications for the surgery a couple days ago, so now her medication regimen has been completely changed.  There will be lab draws and drug levels to get figured out as well. Thus, they would like us to stay until the 10 day post op visit.  

Right now, Lindsey is not using the pacemaker, since she is in sinus rhythm.  They made the settings for the pacemaker to go off when her heartbeat hits 50 bpm. The defibrillator will go off when she has over 30 consecutive  beats over 250 bpm. Hopefully she will never need the defibrillator, but they set the settings as high as possible, so there won't be any accidental firings. 

I am so late in getting this posted, because we have been working with social workers on getting in the RMH.  I had to run over and check in after Lindsey got out of surgery, so we have a place to stay for the next 10 days.  We are truly in a great place. Getting really good care and feel our doctors have our best interest. 

Denise, one of the many favorites came by for a visit.

Lindsey Post op ready for a picture

An xray of what the wiring looks like.  One wire goes into the atrium (top part of the heart) and the other wire going into the ventricle (bottom part of the heart).  The one in the bottom has a thicker coil because that is the one that acts as the defibrillator.

A fun view from the 5th floor of the hospital on our walk last night.

No Rejection!!

 First off, let's get the good news out there:  Lindsey had ZERO rejection and her coronary arteries looked fine. Soooooo, onto the question of what is causing this?  They think that there may be some "micro" coronary artery disease happening that they can't see, or possible that the donor would have experienced this down the road if they would have lived.  But, leaning more to the prior possibility.  Last night at midnight, Lindsey converted on her own back into sinus rhythm.  Her heart rate was in the 48-52 bpm and it went up to 94-96 bpm. They are still going to move forward with the surgery since there is a good chance this could happen again.  

Today we will move out of ICU to the step down unit.  She will have a little more freedom and possibly go for walks further than just the unit.  Last night we went for a walk 2 laps around the unit.  She tolerated the walk very well and had no lightheadedness or dizziness.  She slept well last night, could tell when she switched over to normal rhythm, but didn't feel any different.  She is complaining of being really tired still, probably just everything catching up to her.  

Plans: Surgery sometime Friday with a 24hour recovery.  IF all goes well, home by Sunday.  At least that is my plan.😁  I haven't had a great visit with the EP team (electrophysiologist) to know if we have to stay in the area for follow ups, or if we can just go home and follow up in Boise. The surgery is actually pretty antiinvasive, they don't have to open her chest or anything.  They make a small incision in her upper left chest and place the wires in through scopes then make a little pocket to hold her pacemaker in.  It sits just under her skin. Thus why the recovery is so quick. Of course, Gage's was supposed to be a 3 day recovery and it was 2 weeks.  BUT, his heart was a lot sicker. All good news, we are glad we are here. This is where we need to be and they are taking great care of Lindsey.  Really fun to see all our favorite nurses, doctors and staff.

On a fun note, Hunter's braces were removed this morning.  He was really excited! Some fun random family pictures.

Update After Biopsy

 Here is a quick update on Lindsey.  Her biopsy looked good. There was nothing really alarming.  Her pressures were low and her coronary arteries looked fine.  Of course, this is just preliminary, the full report will come out tomorrow.  But all reassuring numbers and first initial look at coronary arteries.

However, if the reports tomorrow come back with no rejection, the real question is what is causing this heart block?  The electrophysiologists (deal with the electrical part of the heart) feel that it is possible that she has a micro coronary artery disease that we can't see that is causing this.  Thus, they are going to take her to surgery on Friday and place a pacemaker and defibrillator.  Surgery isn't emergent, but they don't want to wait through the weekend and have it possibly become emergent.  Lindsey isn't really happy about having surgery, but she will feel better in the long run. 

A Little to Smooth for Too Long

 It has been awhile since we have updated, which means things are going really well.  With all the trials and frustrations of Covid, I feel our family has had many blessings due to this pandemic.  Sierra was married to a wonderful guy named Mason in October.  Something we weren't sure we would have seen 4 years prior.  She is happy and doing well and has switched to the adult side at the University of Utah.  It was a bitter sweet good-bye to Lucile Packard for her.  

Megan is serving a mission for our church in San Antonio, TX.  She is speaking Spanish and having some wonderful and fulfilling experiences. We are very proud of her and all she is doing.

Hunter and Gage are home with dad and doing great.

It has been at least 3 years since any of our kids have been life flighted to California. They have all been doing well.  It has been really nice to only have to worry about "normal" issues with our kids rather than health issues.  We have definitely felt very blessed! 

However, as always, all good things must come to an end. Monday evening Lindsey was complaining that her heart was beating a little slow.  I took her pulse and it was in the 40's.  I thought it strange and decided to wait and see how she felt the next day.  She didn't say anything about it yesterday morning, so I figured it must have subsided.  Long story short, it didn't subside and she started feeling dizzy while in her weight lifting class.  California had us go to the ER and found quickly that she was in a 2 to 1 heart block.  Meaning, for every two of her upper chamber heart beats, only one is going to her ventricle. The last time she had this was in July of 2019, after a biopsy the doctor bumped her AV node and placed her into the same heart block, that resolved on it's own. She has remained in heart block and does not look like it will resolve.

Right now the doctors are trying to rule out causes of the block.  They are starting with the easiest to treat, rejection.  Today they will take Lindsey and do a biopsy and look for rejection and coronary artery disease (CAD - the cursed word we do not like, this is what Sierra had that lead her to her 2nd transplant).  They will have some idea right after the biopsy on the coronary arteries and pressures, but will not have the official result of the biopsy until tomorrow.  After they get the results, they are sounding more and more like they will place a permanent pacemaker.  This will help if she keeps going into these episodes, she will have a back up.  The doctors are just trying to decide if they will place a defibrillator with it or just the pacemaker.  They keep alluding to her being eight years post transplant and most transplants last nine.  Right now there are not a lot of answers, but they will slowly come as we keep ruling out causes.  Lindsey is acting great and being a typical teenager.  A little different than when she was here 8 years ago.  Her phone seems to pacify her much better than her mother's attention.

We really have been so blessed for so long.  This is just another hiccup in the road.  Will keep you posted as we receive more answers.

Lindsey ready to leave on life flight.

A special gift from a special friend.

Lindsey's last time having school with Kevin as he will retire in 11 days.