Biopsy Results

 Lindsey is doing great.  She had to walk around a lot of Palo Alto yesterday while Gage was getting his biopsy.  She enjoyed lunch with her Paly friends and then hung out at the Stanford mall, then onto shopping in Hillsdale. She didn't "feel" any episodes where she feels her heart rate drop or felt lightheaded with all the walking she did. That is a plus I feel, but that certainly doesn't tell us if we are out of the woods yet or not. Too soon to tell.

It is a little different scenario than we are used to with Covid regulations in place.  Absolutely no siblings are allowed in the hospital and if you are a patient, you have to be in their schedule before they will let you in. Unfortunately, that means that Lindsey could not come into the hospital, nor could she be at the RMH without a parent there (ugghhh). The original biopsy plan was for Lindsey to go and hang out with friends and go to the mall, while Gage and I went in for the biopsy.  His biopsy would be done by 4:30 PM and we would all meet back up at the RMH.  However, we had to improvise and move to plan B.

Last week during our spring break, while I was here with Lindsey, Gage caught a virus.  He spent most of spring break not feeling great, to the point where if he went one more day sick, Jason was going to take him to the ER. This translates to a life flight to California.  Luckily Saturday afternoon he turned a corner and started feeling a little better.  It gave Jason and me peace of mind knowing that he was already scheduled for a biopsy in a couple days. The good news is, his biopsy was a ZERO, no rejection and his coronary arteries look great.  That was a big relief to hear, especially after he has been sick.  However,  his labs showed he was pretty dehydrated and his white blood cell count was low.  These are typical of being sick, but his kidneys are really sensitive, so they admitted him to the hospital for fluids and to check him out a little more. 

We are hoping maybe he will be released tomorrow, but we will see. Lindsey will have clinic tomorrow and then we will fly her home and Gage and I will stay a little longer (maybe until Saturday). I will try and update again after Lindsey's clinic tomorrow.  I know we are definitely in the right place.  These doctors thoroughly check out our kids and I know Gage and Lindsey are getting the best care. Sorry, I have not placed any pictures on these updates, but I am having some technical difficulties that I can't seem to remedy.

Quick Update

 I am not great about keeping posts going, Jason is much better.  There really isn't a lot to report, thus why there hasn't been an update.  Lindsey is healing well.  She is less and less sore every day but still has to take it a little easy.  We have gone on some good walks and she tolerates those fine.  Gets a little winded, but not enough to slow down or not go shopping. She has been able to hang out with some of her Palo Alto friends. They went to dinner and shopping Saturday and ate lunch yesterday at Paly High School.  Lindsey said she felt a little anxious as she crossed the street onto the Paly campus and hoards of students were everywhere. It has been a while since she has attended a large school, she has gotten used to the small hometown of North Powder.

As far as addressing the question, "Is the new pacemaker working?" We don't know for certain.  Lindsey is very sensitive to her heart, she can feel when her heart rate drops and will sometimes get dizzy and other times not.  So far, she has had a few episodes where she has felt funny beats and felt her heart rate drop.  Sometimes she feels lightheaded, but less frequently than before.  On Friday she has appointments with the transplant team and with the electrophysiology (pacemaker) team.  They will look at her pacemaker there and do an interrogation on what the pacemaker has been recording since the implant. Hopefully, we will have more answers then. 

Gage flies in today.  This will be the first time he has flown by himself.  He is nervous, but I think it will be a good growing experience for him.  He will have a biopsy tomorrow and appointments as well on Friday with the transplant team. This will save us a trip back here in a couple weeks. If all goes well with the biopsy and clinic on Friday, we will hit the road and drive home. He is almost to his 5-year anniversary, I can hardly believe it!

It has been nice to see the wonderful familiar faces of Palo Alto.  At the RMH, the hospital, and our church community.  A reminder of how blessed we are and what wonderful people live in this area. Fingers crossed for good results on Friday!

Great Day One Post Op

 Lindsey had a good day today.  She was released from the hospital this afternoon.  Her incision where her pacemaker was placed is pretty sore and she is feeling a little woozy still from all the anesthesia.  However, she wanted to walk home from the hospital to the RMH and did well.  Mostly she wanted to enjoy the beautiful sunshiny weather here in California.  Yesterday was 83 degrees and is probably the warmest day for the next week.  She was really disappointed that the nicest day was the day she was in surgery.  But, she found a way to enjoy the 70-degree weather today.  We will probably just lay low for the next couple of days, to give her some time to heal. Plans are being made for when she is feeling better. I brought some projects from home to keep me busy.

Jason is staying very busy with tax season.  Hunter and Gage are busy doing ranch work over our spring break. They are very thrilled about that. Gage will fly down next week for his biopsy and then both he and Lindsey will have clinic appointments on April first.  If all looks well then we will head back home.😀

Here We are Again

 The last time we posted on this blog, Lindsey received the okay to return home after the placement of her pacemaker. No news is good news, so we have all been doing well-mostly.  Jason would have something witty and funny to say, but since he is presently buried past his head in tax returns, my update will have to do.   

Lindsey has done well with her pacemaker, however, as her heart has become more dependent on her device some issues have surfaced.  The amount of time that her heart has been dependent on her pacemaker went from 23% to 88% of the time.  She started having episodes of lightheadedness and feeling her heart rate drop around the end of December.  These symptoms were happening about once-twice a week and have steadily increased to daily.  We came to California for some testing at the beginning of February where they found her pacemaker was "oversensing." This means, that the pacemaker would think the heart gave a beat and would not fire then fire on the next beat.  This cuts her heart rate in half, putting her back to feeling the heart block that she felt when all this started last May. This was concerning to our electrophysiology/transplant doctors and they gave us a couple options. The first, do nothing and just live with it like this (not an option she wanted) and second, change the position of the lead and switch out the pacemaker device to a different manufacturer.  After discussing these options with the team, they decided to do the second option.  

This brings us to today.  Lindsey went in for surgery today at 11:30AM. The surgery went well, the surgeon was able to change the position of the lead and switch out the pacemaker device to a different one.  She will recover in the hospital, hopefully, be overnight, then released tomorrow if all goes well.  We will stay in the area for another week and a half for her post-op appointment and to be close in case there is an emergency.  Unfortunately, we will not know if the surgery was successful until she recovers enough that they can run an exercise test on her.  I have asked, "What option do we have if this doesn't work?" but I haven't received a straight answer.  It appears this is the first time they have seen this and the doctors are scratching their heads as well. They also did Lindsey's biopsy while she was under for surgery, and her pressures and coronary arteries all looked good. We will know the results tomorrow. We are grateful for this wonderful place and the doctors and nurses that care so much for our children. 

Next week we will fly Gage down while we are waiting for Lindsey's recovery.  He will have his biopsy and clinic appointments saving us a trip back in a couple weeks.  This will be his 5th anniversary!! I can't believe how fast time has gone.  

I will add some pictures later, but the surgery went well. The surgeon was able to move her lead and change her pacemaker device.  She is recovering well and will have an overnight stay in the hospital for monitoring and pain management.

 

The OK to go home

 Lindsey is doing great, her pain is well under control, and she has hardly used anything for pain other than an occasional Tylenol.  Her incision has been really itchy, which is a great sign it is healing well.  This morning she had her appointment with the EP (Pacemaker) doctors.  They checked all of the settings on her pacemaker and took out her stitches.  Her incision looks great and we received the okay to return home.  We will return in July with Gage for follow up appointments, but we are excited to get home.

We have had an enjoyable two weeks, spending this time together.  We did pedicures, shopping, dinner with and at friends, movies, a train ride into San Francisco, walking the dish and other walks to get out of our room.  The weather has been great and we have soaked in the sun rays.  Lindsey has been a trooper in going along with my ideas.  She says sometimes she wouldn't mind being an only child, it has its pros and cons. I'm sure it wouldn't take long for her to really miss her siblings.

We will land tonight in Boise and hit the ground running to try and catch up on 2 weeks of work.  We will take it!! Lindsey is excited she gets to make it to the last day of school.  It will be nice for her to have good closure for the school year.  We are feeling truly blessed with the wonderful recovery she has had, the wonderful staff here, the RMH that gives us a place to stay, and the amazing community and friends both here and at home that help take care of our family.  My heart is very full.

Stitches are out!

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!!