For Sebastian and Destiny

Not every situation ends how you expect or hope.  Yesterday was a sad day and a reminder of how fragile these situations are.  Sweet little Sebastian was here as a baby when we were here with Lindsey.  They thought he was going to need a heart transplant, but a surgery they did ended up working and he was able to return home. In May we saw this family again as Sebastian had ran into some difficulties with his heart.  He was in critical condition and not doing well.  Over the last 5 weeks, he had stabilized and was doing better and to a point where they could put him on the transplant list.  With each up there is so much hope given to you, you feel like you can see things working out and the opportunity to go home again as a family.  Yesterday morning, I ran into Sebastian's mom and she told me he was placed back in the CVICU.  He had been on 3 west for almost a week.  The doctors decided to do an emergency surgery to place him on the device Gage is on.  He did not make it out.

Destiny had a liver transplant and had been doing well.  Hunter was riding the bus and going to the same school as her younger brother and sister.  She contacted an infection and did not recover.  Yesterday 2 special spirits returned to Heaven.  I know their suffering has ended and they are in a better place.  Though, my heart aches for their families and their loss.  You put so much energy and time and would give anything to get your child well.  Then to have it not turn out how you are hoping.  I just can't and don't want to imagine how that must feel.  What a humbling reminder that our plans are not God's plans.  His timing is not our timing.  I don't know how we have cheated this for 3 times now.  Will we cheat this a 4th?  Who knows, I guess we need to prepare ourselves for any possibility.  Knowing these families and feeling their loss really puts a perspective on how our donor family must feel.  How can I possibly hope for that.

Gage is doing well and we are getting out of the hospital today.  His bleeding has subsided and they replaced his feeding tube.  Now they are going to start his feeds that usually run at night to make sure he tolerates everything well, and then we can be released.  He is in great spirits and acting like his typical self.  This morning I came into his room and it smelled like onions.  I asked him what he ordered for breakfast and he said a hamburger.  Really! A hamburger for breakfast?  He had a big smile on his face and said very excitedly, " You can do that here, you can order a hamburger for breakfast."  Of course, he didn't even eat a bite of the hamburger, he just wanted the pickle that came with it.  Funny Boy!!  Hug your kids even tighter today and enjoy every moment you have with them.

   

No Discharge Yet

Well, we were hoping to get out yesterday, then today, but no on all accounts.  Yesterday morning he vomited,and they took his feeding tube out.  He did not spit, gag or vomit up anymore blood the rest of the day.  However, in the afternoon, he tried to go for a walk but was really tired and didn't feel well.  He spiked a fever of 101 and complained of difficulty breathing when we were walking.  Of course, I think, "great he has pneumonia, he aspirated some of the blood and now we will be in here for weeks." (might be the nurse in me :)) He rested and laid low for the evening.  They gave him some Tylenol.  Once the Tylenol kicked in, he was acting much better.  They think it was caused by the IV medicine he is on, as it is one of the side effects,  His IV stopped working, so they had to start another one last night.  He has had continuous IV form of Pepcid to help with his GI bleed.  So, they had to have the IV.  He wanted them to start it today, but he had to have it through the night.  Against his wishes, and with a lot of screaming and tears, I believe he even yelled, "He is going to kill me, take it out." The IV was started and all was well after that.  I do not envy the "vascular access" team.  They are the least liked people.

After his emotional evening, he slept really well all night.  No vomiting, tummy aches or fevers.  He woke up this morning acting like "Gage."  The plan now is, put the feeding tube back in tonight and run his feeds.  If he tolerates everything well, he can go home tomorrow,  Cross our fingers and hope that is the case as we have my family coming in for a reunion tomorrow.  He is acting like his normal, energetic self.  It is time for us to go!

Fun visit from Anuj (aka Spinach), thanks for stopping in, it was the highlight of Gage's day.  Sierra survived her first day on the job and is ready to go back.

Gage pic without the feeding tube.

  Sierra in her "work" uniform.   

Anuj and Gage

Day 251? Not the Monday We Were Expecting

To start off, NO it isn't a heart.  Gage had a great week last week.  His appetite was up and he was gaining weight slow and steadily.  All great stuff.  A very nice lady named Diane, saw our Dateline show and contacted us to offer to take us sailing.  She lives here in the Bay area and wanted to do something for our family.  We have tried a few times to go, but the schedule hasn't ever quite worked out.  She called us this last week and our schedule was wide open.  So, Gage and I were able to go sailing on Thursday.  It was a lot of fun, but short.  The winds picked up and we had to turn back.  We will go again when the weather is better and when more of the family is here.  So nice to meet you Diane and we appreciate your generosity,  you are such a wonderful person.

Saturday we picked up Sierra from the airport.  It is nice to have her back.  She had a great time in Salt Lake last week and met some neat people.  It was a really good experience for her.  She starts her job today.  She is a little nervous and excited at the same time.  I am really excited for her.  Megan came home late Saturday night and left early Sunday morning for her volleyball camp in Hillsboro.  She also had a great time in Provo with lots of stories to tell and fun people she met.  Lindsey had fun at her camp and is glad to be  back home in Oregon.  Hunter is enjoying playing with cousins and being at home as well.

Sunday night, all was well.  We had a great day and headed to bed.  During the night, Gage woke up a few times complaining that he had something in his mouth.  I handed him a tissue and he would spit out small blood clots.  He woke up at 7 in the morning saying his stomach hurt and he vomited.  I don't mean to gross anyone out, but it was dark brown with blood clots in it.  This isn't the first time this has happened.  He did this at the beginning of May.  He spit up blood clots during the night, then woke up and vomited blood.  However, the bleeding for that experience, ended there.  In May, we went to the ER he wasn't spitting up anymore clots or vomiting.  When they pulled fluid out of his feeding tube it didn't have any blood in it.

THIS time, he continued vomiting little bits of blood with clots in it.  When we went to the ER, there was blood in his stomach from his feeding tube. All throughout the day yesterday and through the night last night, he would spit out clots or gag and then throw them up.  Gage says he can feel in the back of his throat where the feeding tube has rubbed, and that's where he feels the clots form.  With him on blood thinners, it has the doctors a little concerned and so they admitted him to 3 West (not the ICU) to watch him over night.  They are checking his blood counts to make sure that they are not dropping and staying steady in case he might need a transfusion.  The plan for today is, pull his feeding tube and let the irritation stop.  TRY to get him to drink a lot of calories and continue to watch him.  He is currently sleeping and I am assuming that is from a long night.  So far, his blood counts have only dropped a little bit and his INR (thinness of blood) is staying stable.  They are willing to give up a couple days of calories to let him heal so he can be discharged.  I AGREE!! Jenna, our nurse practitioner, said this is an easy fix and she is glad this is all he is in for.  I agree, he is acting and feeling fine, maybe a little too fine.  He was more than happy to be KING of his hospital bed and watch 4 movies yesterday. We did walk 5 easy laps around the 3rd floor.  It was fun to see how much he has improved since our earlier days here, when we had to argue and beg for him to do the 3rd lap.  He went to the play room in the evening and we played some fun games.  Later in the night when I was getting him ready for bed, he was encouraging Sierra and I to leave, he wanted to spend the night there by himself.  I believe I "took the wind out of his sails," when I told him the TV was not coming on for the rest of the night and we would stay until he was asleep,    

Just a little bump in the road and a quick reminder of how blessed we are to be out of the hospital. So a heart hasn't come yet, but at least we can be having fun out of the hospital.  Hopefully it is only for a couple more days at the most.

In the ER with his "spit" bag.

WAY to cozy in his 3 West bed. 

A few pictures of us sailing. 

Thank you Diane for a wonderful afternoon.

Day 244, Biopsy results with a little 4th of July

 Biopsy results are in and we are feeling good.  Sierra got a big fat ZERO, and Lindsey got a 1A.  Lindsey's heart pressures were perfect.  Also, Lindsey's Coronary arteries look good.  She will have clinic in 3 months and no biopsy until January.  Sierra's pressures were up a little from the last biopsy, but still considered normal.  Her prednisone was cut in half (awesome) and some of her meds were discontinued. She will have clinic in a month and a half and biopsy in 3 months.  All great results.

We had some good friends invite us to their beach house for the 4th of July.  It was tons of fun.  We were able to see dolphins, play on the beach, collect sand dollars and watch a crazy and wild display of fire works along the beach.  Thank you Rowe's for making our 4th of July feel like a 4th of July.

This week we were all together as a family.  It hasn't been that way for over a month.  It was so enjoyable and sad that it was for such a short time.  My step-sister and her kids came to visit us this weekend along with Jason's brother Josh and his family.  It was so fun to have company and have a place where they could stay with us.  It was a really fun weekend.  We were able to see whales feeding just north of Half Moon Bay.  A first for all of us.  You are a lucky charm Jenn.

All the company and Jason, Lindsey and Hunter left Sunday.  Sierra went with Jenn to Utah for EFY in Salt Lake and Megan flew out with a friend to Provo for EFY.  Lindsey is going to girls camp at home in Oregon and Hunter needs some time at home to work.  Thus, if you do the math, that just leaves Gage and I here in California alone!  Neither one of us were to excited about that, but hopefully we can give Jason a good reason to come back early.  Otherwise, Sierra will be back on Saturday so she can start her new job, and everyone else will be back in 2 weeks.

Gage had a clinic appointment on Friday.  Everything looks good and is very stable.  Jason brought up the possibility of taking him home to Oregon again.  The doctors said they would discuss it.  Hey, if you don't ask, you will never know.  I really wish we could take him home even if for just a couple of days.  He has been waiting now for 8 months and is really starting to miss home.  We fasted and prayed for Gage over the weekend and want to thank all those that joined in on behalf of our efforts.  We feel your strength through your prayers and faith.  It was a very neat experience.  I was really proud of all the kids who fasted.  Not one of them ever complained of how hungry they were and lasted the full 24 hours.  It is neat to see their sacrifice when there is very good purpose.

Funny story,  Gage has coumadin he has to take each evening to keep his blood thin so no clots form on his VAD.  I had taken his meds to him and told him he needed to take them.  He was playing video games with his cousins at the time.  I got his attention and told him to take them and then he could continue playing.  I then went outside, where he came a little while later.  I asked if he had taken all his meds and he replied, "yes."  The next morning I found his meds sitting on the counter where I left them and only half of them had been taken.  The ones left were his coumadin and another med.  I was very upset and told him he was in big trouble and he was going to call Jenna (our nurse practitioner) himself and explain to her what he had done.  We had labs to draw at the hospital that morning and just happened to run into Jenna.  It was really cute and funny listening to Gage tell Jenna "exactly" what had happened including the part where he said, "and my mom found my medicine and was VERY upset with me." Jenna did a great job of explaining how important his medicine is and that if he doesn't take them, he has to have shots twice a day.  Now when he takes his meds at night, which at stand at his side until they are gone,  he says, "I am going to take the pink and the purple one first (coumadin)" Lesson learned!!

One last story, down town in SF, on Fisherman's Wharf, crouds of people everywhere.  All of a sudden there were about 15 male bicyclist of all shapes and sizes wearing nothing but a smile.  It was quite a shocker for all of us including the 14 kids we had with us.  Only if SF!?

Lindsey at biopsy

4th of July fun at the beach.  Started the morning off with a good run.

Sierra and Lindsey in biopsy.  A fun visit from Anuj (aka Spinach) Gages friend from school. Gage was really excited to see him.

Gage telling his story to Jenna about not taking his medicine.

Ran into our favorite nurse Shannon on the way out of the hospital.  

The "Rock picking Crew" back home before Jason left to come to California.

The whale siting at Half Moon Bay. Look closely on the right side (my left).

Fun at the Wharf in San Francisco.

Below are pictures of the 4th of July.

Waiting for an exciting 4th of July parade.  We were at an old fashion history park.  We found the goat milking barn.  Megan wanted to see how it worked. 

Gage found his pickles.  Our front row seats for the fire works.

Ready to go explore the coast with Jenn and her kids.  Talk about a packed car!

The whale siting. 

Sea lions at Fitzgerald Marina.

Lumbard street and China town in San Francisco. 

Ghiradelli square. 

Having fun with cousins in the pool.

Day Continual Blessings

Stacy here, I realize it has been quite a while since we have updated and even longer since it has been me. As I sit and look back at the last few months and beyond, I can't help but realize how we are being watched over. Those who have read our blog for years, should know by now that we are religious people.  As we go through the trial of "the waiting" period, it helps me to look back at our time here in California, and see the countless blessings we have been given.

For anyone interested, we are holding a special prayer and fast for Gage on Friday starting at 5:00 PM Pacific time and ending on Saturday at 5:00 PM.  This fast is for Gage to receive a heart.  On July 10th, it will be 8 months he has been waiting,  To put it in perspective, we had a special prayer and fasting for Lindsey when she had waited 8 months, she received her transplant 2 weeks later.  I  know he is getting close.

In March, we met the VanElderen.  They have been foster parents for over 60 kids.  One of their foster kids had just had a liver transplant.  She and Lindsey were the same age, so we got them together a few times for dinner at their house.  They are very kind and generous people.  I was approached by Judi, and asked if we would be interested in staying in their house for the summer.  We have been offered this by friends before, the only problem is, it is for a week or 2 and then they are back.  It is difficult to move in and out of the RMH for that short of a period of time.  As the months unfolded, things fell into place.  They were leaving for their summer cabin June 4th, the same day that we needed to move to the new RMH.  They will return in mid-September, as we move back to the RMH to start school.  We have moved into their home and it has been SO wonderful.  The kids share a couple rooms and we have room to spread out.  I can cook and give the kids some chores.  It is in a quiet and serene area that is peaceful and relaxing.  With Gage only having clinic every 2 weeks, and blood draws every 2 weeks, it makes our trips to the hospital minimal.  The house was approved (as far as distance) by the VAD team and the transplant team.  We are enjoying our summer vacation thanks to the generosity of this couple.

Gage is doing great,  he had a little virus this last week that had him feeling under the weather for a couple days.  I was really worried he wasn't going to be able to drink enough and he would be admitted.  We were able to use his feeding tube and get the fluids he needed until he got through the worst of it.  It was a big relief, no admission needed.  He was kind enough to share it with Lindsey and I.   What a blessing that he wasn't admitted and was able to battle this virus without help.  He has clinic this week on Friday.  Jason has an argument ready for why he should be able to come home to Oregon for a few days.  We will see how it goes. Aurelius is very stable and doing great, he gets frustrated that he can't swim in the pool and can only put his legs in the hot tub.  But, he is a good sport about it anyway.  We would probably use the pool a lot more if he could be in it.  I have to much guilt being in it when he can't.

Lindsey finished summer school this week.  It is a bitter sweet.  She is glad to be done with it and have nothing to do in the mornings.  I am sad because we will have "nothing " to do in the mornings.  I find idleness is definitely not our friend in this waiting game.  She did enjoy it, but had a pretty relaxed "summer school."

The exciting news is that Sierra landed a Calif job.  I am really proud of her.  She is finding that driving a car and having to fill it with gas on occasion, going out with friends, paying for her cellphone and shopping for clothes,  requires more than a random babysitting job.  Starting on July 5th, she will start her orientation for Tin Pot Creamery.  This is a cute ice cream shop that has delicious ice cream.  Sierra is going to get some really strong forearms.  She is really excited to start and has had a great learning experience with resume's, interviewing and following up.  She has done very well.  Another great blessing and experience for her.

Jason and Megan are on their way back to California today.  We are so excited to be back together as a family.  It has been a a month since we have all been together at the same time.  We actually get to spend a whole week together.  It is going to be Heavenly.

We found a really fun park near the house we live in.  The kids and I went and explored part of it.  It was a lot of fun and we look forward to exploring the rest of it,  We were able to meet a neat family in the CVICU over Memorial Day weekend.  The boys name is Owen and he is 8, close to Gage's age.  I could see them being good buddies.  Owen had a transplant 3 years ago and now has severe coronary artery disease.  We probably talked about him in a past post.  Owen has the same thing Sierra had with her first transplant, but much worse.  He also needs a second transplant.  However, Owen has no options.  He is not a candidate for a VAD , ECMO or any other device that helps with heart failure.  He is presently on milranone which is helping for now.  It is hard to see Owen with no options and stuck in the hospital until transplant and then see Gage doing so well on a VAD and not want Owens turn to come first or at the same time as Gage.  Owen has to be in the hospital because he had a sudden cardiac event (he coded) and is at high risk of having another.  It will be fun to see him get out of the hospital with his heart and Gage with his and let them play together.  For now, I  guess we will have to do it through his hospital window.

God is constantly blessing our family.  Every time I turn around, I see his hand and guidance with our family.  I am grateful for his mindfulness of us and know he is watching over us.  I know Gage's day will come when it is the right time.  The frustrations we feel of not being together at the same time, being pulled in different directions, trying to keep our home and lifestyle in Oregon going and attempting a life here in California and constantly questioning where the best place for our kids to be.  These are but for a short moment and if we have patience and understanding, we will see God carrying us through this.

 Gage and Owen playing with dry erase markers.

 Gage playing at the fun park we found.

At Watsonville picking strawberries.  One of our favorite things to do here,