Good Couple Weeks

 Time has certainly gotten away from us since we returned home.  Gage has improved each day and is back to his normal self.  His white blood cell count went up and his energy and appetite have returned.  Whatever virus he had over spring break really knocked him off his feet for a few weeks.  It has taken 3 weeks to return to his baseline. It is crazy how quickly my mind instantly goes to worst-case scenarios when my kids get sick.  It may be a form of PTSD or, like Jason suspects, a form of protection, to keep you ready for the worst.  

I ran into a family that we knew from the time we were there with Gage's transplant. They had a daughter waiting for a heart transplant as well.  She received her transplant and they returned home to Oregon before Gage received his transplant.  We did not keep in correspondence with them, so it was fun to catch up. They were at Stanford because their daughter had something that I fear the very most, PTLD (Post-transplant lymphoproliferative disease).  This is a form of cancer that transplant patients get.  We have a dear friend Alex who was receiving treatment for his PTLD while there with Gage and it has returned again.  This girl was there for her second round of it as well.  Her mother was very positive and said she was doing great.  When Gage's white count was so low, it had me concerned that that was going to be his next diagnosis. Luckily, it was not, but that sick pit in my stomach did not go away until after his labs confirmed their return to normal. I was so relieved and happy.  It is great to see him back to "normal."

Lindsey has had 3-4 episodes this week, where she feels her heart rate drop.  Sometimes when she is just sitting still and sometimes when she is working out her legs. Usually, the dizziness is only when she is working out. I think her episodes are fewer, so that is a plus.   I am certain we will have to return to Stanford to have her device more interrogated, but we can hold off until after her graduation. She started a new job at Maurices, a clothing store, and has really enjoyed it.  Her energy has been great and she is acting like herself.  Much to be grateful for! Hoping to finish out this school year with no more issues.

We were so busy getting into the swing of things after being gone, that Gage's Heartiversary flew by.  We are celebrating it tonight with a heart-shaped cake.  Five years ago on April 5, after 18 months of waiting, Gage received the perfect heart.  We are so grateful to his donor family who made a selfless act at a very difficult time to give Gage another chance at life!

Going Home

 Today was a great day! We will start with Gage. His kidneys were much happier and back to their baseline.  All the labs the kidney doctors ordered were normal.  The nephrologist was pleased with how his kidneys recovered overall.  However, his immune system is still pretty low, lower than normal, so he has to be extra careful about getting sick.  It will most likely be another admission.  He has a blood draw in the morning and then we can drive home to Oregon.

Lindsey had her clinic today.  The pacemaker team did not see any episodes with her new pacemaker upon interrogation.  They are still going to send Lindsey home with a ZEO patch, which is a heart monitor she will wear for a couple weeks.  That is how they diagnosed the problems last time.  It was explained like this, the pacemaker interrogation is a bird's eye view of a city.  The ZEO patch gives you a street view of the house. Thus, we still aren't sure if it is working or not.  Lindsey has felt a few episodes where she was light-headed, but they seem less frequent. That is of course with her taking it really easy and not being very active. 

We are so grateful for the wonderful care we get here.  So great to see so many wonderful people! Jason can place his commentary after April 15th when he comes up for air again.  Thank you all for your prayers and thoughts in our behalf. We feel very loved.😍

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.