Feb 28, Day 264, Lindsey has left the Building!

After a total of 264 days, Lindsey has left the building! She is out and home at the RMH.  Lindsey handled her biopsy very well.  She came right out of anesthesia, without any difficulty, ready to eat.  Her Prograf levels were now 7 (too low), but they still felt good about her going home.  She will have a blood draw in the morning to see the official trend of the Prograf.  There is no school tomorrow for Sierra or Lindsey, so it will be a nice relaxing morning at the RMH.  We will be checking Sierra into short stay for her last plasma pheresis at 12:40 pm and the IVIG is to follow.  She will probably get released at 3 or 4 in the morning on Saturday if all goes well.

Lindsey was very excited to leave the hospital.  We took our victory laps around 3 west and CVICU on our way out.  Needless to say they were brisk walks.  She waved and said, "I'm  leaving." Then walked on.  When we got in the suburban, she said, " turn on some music.  We are out of here." Here are a bunch of pictures that I took throughout the week that I haven't been able to post, due to not being at the RMH where the computer is.

 Dr. Rosenthal getting his bright pink fingernail polish on.

Taking the stairs

Her sweet friend Colette bringing her the letter she wrote about their friendship.

Lindsey before her biopsy today. Very nervous.

Me gowned up to go with her into the cath lab until she is asleep.

Done, awake and eating her Popsicle.

Fun nurse Susanna.  One of many that made our days brighter and better on 3 West.

Amanda who will be discharged tomorrow.

Dr. Ashwin Lol, a fellow we were hoping to talk into getting a transplant program going in Boise, ID or Portland, OR ( a little closer to us).  Looks like back east will get him.  They have hired a great asset to their program.

Ashok, the surgeon fellow who took out Gage's staples, did push ups for Lindsey and made our many evening walks fun.

Stephanie, a fellow who has been here through it all.  Admitted Lindsey the night she was life flighted from Boise, admitted Gage when he was in complete heart block, kept us updated on Lindsey's surgery during transplant and even went into Lindsey's biopsy today.  An amazing person!

Our favorite PT, Mandy.  Her other half, Sandra wasn't there today.  We will miss them for therapy.

Mary Alice, our Berlin "go to" person.   She helped get policies in place for our Stanford excursions and was working on the policy for us to have a little more freedom on the Berlin.  We just heard today, starting tomorrow, families on the Berlin can go to the Sobrato room unaccompanied by a nurse.  All because of Lindsey paving the way of what these Berlins can do.  Thank you Mary Alice for all of your hard work!

Lindsey's last trip to the Ronald McDonald cart.

"Let's go already Mom, not another picture."

Lindsey heading into our apartment at the RMH.  Fun signs Hunter and Grandma Coleman made for her.

Lindsey cutting off her hospital bands.  She was supervised.

Here we go! Lindsey's medicine.

Our last sticker for our collection.  We are done!

There were so many other people that we would have loved to have gotten pictures with.  So many staff members have helped lift Lindsey up and made our stay in the hospital so much brighter.  We thank you nurses on 3 West, playroom volunteers, child life specialists, librarians, massage therapists, doctors and therapists (physical and psychological),and the information desk.   To all of you, Thank you!

Feb 27 , 2 weeks out, Thursday (Jason's Wed night post)

So I spent some time last night working up an update, but Stacy beat me to it and did a great job.

However, I'm not going to waist the time I spent working on it.  I gave up some good According to Jim reruns typing this up. So below is my post and thoughts from last night.  Lindsey has had a great day. She had a BATH, a biopsy and was DISCHARGED. After 264 days in the Hospital, she is walking out the door!  Stacy has taken some great pictures and will be posting them later tonight.

Wednesday night, February 27, 2013
Checking in from Oregon.  Had some really good days at work. I need to have some good days, it is tax season! I talk to Stacy a couple of times a day. Her and ReNee are keepin’ it rolling. Sierra has had 4th dose of the plasma pheresis with her last one on Friday. Each time she gets it, she looks and feels pretty wiped out. By morning she is mostly back to herself again. Sierra has been going to the hospital school to do her assignments and tests. Not sure how much she is keeping up with the regular school work, but she is staying at it.

Lindsey is hangin’ in there but starting to get sick and tired of the hospital. They appear to have her blood pressure and prograf levels under control but she has been staying in for treatment purposes. For the last 20 hours she has had IV treatments, 12 hours of IVIG and 8 hours of Cytogam.  These are routine IV’s she will get weekly for about a month. While she is getting them, she has to be on the monitor and can’t leave her room. You know Lindsey Lou, wants to be out and about. Tomorrow, Thursday, she has her 2^nd biopsy, then maybe released.  Hopefully things go well. Also tomorrow, Sierra has her IVIG.

This is going to be the story for the next couple months or so. Stacy was given Sierra’s schedule for her IV treatments, dressing changes, port flushes, blood draws and echos.  Add that to Lindsey’s schedule of blood draws, echos, clinic, biopsy, physical therapy, physic, blood pressure checks and school.  Don’t forget the life saving medications giving 3-4 times a day to 3 different kids.  Throw in a little Megan’s school and basketball schedule, Hunter’s school and activities and Gage doing the ‘Gage’, I’m in tax season so basically no help there (I wasn’t much help before anyway), and you have one good lookin’ momma keeping very busy.  Feel a bit guilty sitting here late at night on the old banana chair in our quiet living room by our BlazeKing fireplace watching According to Jim in Oregon.  Sure wish I could be there to help my dear wife. But for now, I need to be here focusing on my work. She can do it, it is just going to be a full time job for a while.  Thank goodness she didn’t take a night nursing job, but if she did, she would have found a way to pull that off. That’s why I married her. (If it sounds like I miss my wife, you are correct).

Couple of other events I didn’t want to forget. One of Lindsey’s friends, Collette, came by to see her. Collette wrote a neat story about Linds and wanted to share it with her.  We are trying to get a copy of it.  Also, little Jo Jo came by to see her. He is the cute little 6 year old waiting for a kidney that we have talked about before. He made a special trip up to 3 West just to see her.  Lindsey has that ability to make other kids feel good about themselves.

Yesterday I had a visit with someone who had lost their child in a car accident over 4 years ago. They had made the decision years ago to be organ donors, and in the mist of this horrible accident, they allowed their daughters organs to be donated. It was an amazing experience to visit with her. I was so impressed by her strength. I wanted to know everything she was willing to tell about the process. She said it helped bring a little peace to a horrible situation. They were able to donate all the organs but the heart. They never once felt like their child was violated or that the doctors acted like vultures.  They were shown nothing but respect and gratitude for the decision they made. I would like to publicly thank her and her husband for making the selfless decision in the middle of a horrible tragedy. We felt a connection to each other’s situation.  It was good for both of us to see the other side. Thank you. We are now in debt to 2 families out there who somehow made the same decision to donate.

Feb 27, Day 13, First week of College

All is still well.  Lindsey's Prograf level yesterday was 14 and today it is 11. All in the therapeutic range that they want it in (10-15).  So, why are we still here? The doctors were looking at Lindsey's schedule and realized, that she has IVIG (12 hour infusion), Cytogam (8 hour infusion) and a biopsy all scheduled for Thursday.  They wanted to watch her a little longer. So, they had her IVIG moved up to last night and her Cytogam this morning.  I was so grateful for this. They also want to make sure that when she gets out, she stays out! Nothing would be more devastating to the Princess than to send her home and have to re-admit her.  For her well being they want to be sure every T is crossed and every I is dotted. I couldn't agree more.  We are most likely looking at getting out on Friday, if all stays well. Lindsey is very excited and nervous for this. I think we all are.

Sierra had her 4th of 5 plasma pheresis treatments. She is pale, wiped out and tired when they are done. But, by the next day she is back to herself.  She is handling them very well other wise.  On Friday she will get her last plasma pheresis treatment followed by a 12 hour IVIG infusion (yuck). That is 14 plus hours on an IV in the short stay unit. Making for a long afternoon and night. After this treatment, the next plan for her is an infusion called Rituximab.  This is an 8-9 hour infusion that they use as a chemo agent for cancer patients.  It is not going to make her hair fall out or anything.  It targets a specific part of her immune system.  She will receive 2 of these treatments 2 weeks apart. A week after the 2nd Rituximab, they will do IVIG again. A week after the IVIG, they will repeat her biopsy and see if any of this worked.  Sierra has been absolutely amazing about this.  She cried when she found out (we all did) and then she said, "Well, okay, let's get this going." Taking it all in stride and not complaining about any of it.  She is a good kid!

Megan had a game yesterday and they won big, 48-12, or some crazy score like that.  Megan played quite a bit, but was never able to get the ball to drop in the basket.  She has another game
tomorrow and is really excited for that.  She is doing very well and learning a lot.

Hunter is 'Hunter-Buddy'. He has been asked to work on his penmanship (couldn't agree more) . So, he has been on me to get him paper to work on his writing.  He does love a challenge.  Gage-a-real-ious is doing well. He will have a check up in March sometime.

Jason is hard at work, where he needs to be.  He has had some really great days and long days.  He seems to be in his tax season mode, at home.  I am so relieved that he could go home and focus on work.  We will all be excited to see him come back.  We hope to ALL pick him up from the airport. It has been wonderful having my mom here this week to help. She returns home on Saturday morning, and Jason returns Saturday evening.

As for me, you know that feeling after the first week of college? After all the teachers have handed out all the syllabuses for each class? You have that overwhelming feeling that all the tests, papers, projects and quizzes for every class are due tomorrow.  You start the semester off wondering, "How on earth am I going to get through this?" Little bit by little bit, you have a paper turned in here, a quiz taken there and then finals. You made it! You leave your last final clicking your heels together, feeling like the weight of the world has just been lifted off your chest and you can fly.  Today, I felt like the first day of classes. I was given Sierra's schedule and Lindsey's schedule.  Lindsey has physical therapy 3 times a week, biopsy weekly 2 more times after tomorrow, blood draws, clinic, child psych, and school. Sierra will need dressing changes weekly and her port flushed every 3 days ( both which have to be done in the hospital at different times and locations) and blood draws on top of the infusions I have already mentioned.  Add Megan's basketball schedule and Jason busy in tax season, and school for everyone, it was a bit over whelming.  Don't forget medications 3-4 times a day to 3 different kids, blood pressure checks and watching for seizures and rejection.  HOWEVER, just like you make it through the semester at college, we will make it through this.  None of this is on the same day, so I can get through this. One quiz and paper at a time. We are certainly not given more than we can handle.

Jason here, what a woman! This is the reason I married her.  She can handle the heat and looks good doing it.

Feb 25, Monday, Not out yet

Prograf level was way high so they will need a few days to adjust and retest. They want to keep a closer eye on her elevated Prograf with her history of PRES  (the seizures) from Cyclosporine.  Prograf can have the same effect.  Also, she will have biopsy and IVIG on Thursday. So we are looking at Friday at the earliest for her getting out. She has decided she is ready to get out now. Heck with this comfort zone thing, she wants out! Each time Stacy stepped away to tend to other kids or issues, the phone was ringing.  It's like the last week of finals and you just want to leave.  She did stairs and swing in PT today and is continuing to improve.  Sierra had her 3rd treatment today. Did well, but is feeling pretty wiped out.

Lindsey was finally able to catch Dr. Rosenthal for his fingernail painting.  The rule was, she could put 2 coats on one finger and he has to wear it until she goes to the RMH. Maybe that will be incentive for her discharge.  Lindsey also had a fun, quick visit from her little JoJo.  He is 6 and waiting for a kidney transplant.  He was here for dialysis a few months ago and hung out in Lindsey's room a few times.  His dad said he has talked about nothing but wanting to see Lindsey again.  Today they had a check up and JoJo was adamant that they visit Lindsey.  Also, Amanda is finally off isolation and she gets to come hang out with us again. We are super excited about that. She is probably going home on Friday as well.

Feb 24, Day 10, Sunday (posted Monday morning)

Jason here and back in Oregon. Didn't have internet last night and Stacy was busy with the kiddo's. Still looking at Lindsey being discharged soon, maybe too soon.  There is a lot paperwork and numerous prescriptions to be filled.  We wouldn't mind one more day. Busy day for my wife.  Below is Sunday's posting.

Sunday 24^th of February
Days are getting much more quiet. Still just balancing the blood pressure with long term meds, and getting the anti-rejection meds stable in her system.  Still expected her to be discharged in the next day or so. Crazy!  Went for more walks and played games. All good stuff.  Sure wish I could be there but for now, I need to be here in Oregon.   Stacy and the kids have a busy week. She has to deal with Sierra’s treatments, Lindsey’s discharge, clinic, biopsy and school, Megan’s games, and the boys. I just have the office, and a whole lot of it.
House is still here and standing. Most everything is still in the exact same place I left it a month ago, and the month before that, and the month before that.  Still cold here with plenty of snow in the yard.  This morning it was 13 degrees.  Woke up in the middle of the night and couldn’t figure out where I was. Too quiet? A comfortable bed? Dark? Where am I?

Helped feed cows.  Good to get out again. Cows are getting ready to start calving. Jake and the gang will be busy for the next few months tending to all the new mothers and little babies.

Really enjoyed church. Good chance to visit with many of our friends. Sure appreciate the love and concern for our little crew. I took a few minutes to share a few thoughts in the meeting.  I needed to publicly thank and acknowledge God’s hand in our lives.  There are so many events over the years that were preparing us for this time, and I need to thank my Heavenly Father for leading and guiding us.
1)      Stacy went into nursing, and knew she wanted to be a nurse at a very young age.
2)       I went into a profession, accounting, that allows me to work remotely.
3)      I was lucky enough to meet and ‘trick’ a cute girl into marrying me.
4)      We moved to Oregon close to family that has helped with kids.
5)      I work in a firm that is completely flexible to allow me to work remotely on very flexible hours.
6)      We met some very neat people in California that has helped through some tough times.
       a-      Bob, originally from Baker, Oregon and lives walking distance to the Hospital. He has helped us over the years with rides, meals and a place to stay.
       b-      Bill and Barbara. Meet them 6 years ago at the SF airport. I was completely lost, they helped me, and happen to live 1 block from LPCH. Bill has passed on, but their family has continued to provide support.
       c-       Michelle and Shawn, We share the same Aunt (The infamous and favorite Aunt Bonnie) making us cousins by marriage, I think. They happen to live in the same ward boundaries and have provided endless support.
       d-      Liz. Works in the hospital as a pacemaker vendor.  Met her 6 years ago. Again lives in the same ward boundaries, helped with the installation of Gage’s pacemaker, has kids the same age as Hunter and Gage, and has helped with the kids and meals on countless occasions.
       e-      Nori, PK, Mia, and many other new friends Sierra and Megan have met.
       f-       Palo Alto Ward members who have taken us in, fed us, and helped us feel at home.
       g-      A RMH, and all those who support the House, which allows us a place to live as a family.
       h-      Carrying doctors, nurses, social workers, therapists, and school teachers who have done a little extra to lift and support our Princess.
       i-        A massive support group in Oregon, Utah, Idaho and other places around the world helping keep Stacy and I a float.

I don’t believe all these events and people mentioned above is just a coincidence. If it is, so be it. But I like to believe God had a hand in preparing the way for us to deal with challenges place in front of us.  We don’t know what the future has in store for us. We don’t know how the decisions we make now will affect future events and challenges. I believe God has a plan for each one of us.  We don’t understand why, but I believe he does. I read the comments to our blog and wonder just how much good has come in the world because of our little Princess. Makes you wonder.  We all have challenges to face. I am grateful for a loving Heavenly Father. I am grateful for the power of prayer. Everything we have prayed for has at some point been answered.

I just needed to share some of these thoughts I have been pondering.  More light hearted comments will come in the future.

Jason

Feb 23, Saturday, Keeping Up With Lindsey

Stacy here, Jason went home today putting me in charge of updating. Lindsey had another excellent day! We played 3 games of Sorry, played Wacky 6 in the Sobrato room, hide and seek on the 3rd floor loop, friends visited and a walk to the Lucile Packard cafeteria. All unaccompanied and on our own. This has been REALLY weird.  She had one of her favorite nurses, Susana.  We told her maybe she should come with us so we can gradually break into this freedom.  All of these activities were done without a single monitor on her. CRAZY!!! The doctors are talking about letting her go home at the beginning of next week.  They want to make sure that her blood pressure is under control and her Prograf (one of the immunosuppressive meds) levels are where they want them.  Her levels have been really high. They want them between 10 -15 and today they were 16.9.  Lindsey wanted to take the stairs up from the cafeteria, so we took them from the ground floor to the first. She did amazing. Slow and steady.  Her VAD sites are healing well. They have to be packed with gauze once a day, which she is not happy about.  All-in-all, she really is doing awesome.

She is nervous to go out of the hospital.  I can't say that I blame her. For 8 + months she has adapted her life to this hospital. The nurses, doctors, therapists, and school ( which she will continue) have been Lindsey's world. Now we are coming to the part where we say good-bye to that. There are a lot of mixed emotions. She is nervous and scared to leave, but very excited to be with her family again ALL the time.

Jason made it home safely with his mom.  He was really dragging his feet to leave.  He wants to be a part of this transition, but it IS tax season.  Hopefully he can find the means to focus on work this week. We will miss him. He sacrifices so much for our family. He is an amazing man!



Jason here. While I was on the airplane traveling back to Oregon I prepared some additional thought but haven't had the internet.  Since this is our journal I wanted to add it in the proper section.

Saturday, February 23

Another great day for mixed emotions, all good but mostly hard to explain.  Spent the night on 3 West with Lindsey. It was very quiet, nothing was humming, beeping, turning, thumping or alarming. Lindsey woke up a couple time to use the bathroom, so as usual I go up to help, but I just stood there.  There was nothing to help her with.  We both thought it was kinda weird.  Last night we played a game of ‘Plants vs Zombies’ together on her ipad like we had done for the last 8 months.  It was one of the rituals we did after her walk.  I will definitely miss that one-on-one time with my daughter.   Now I am on a plane heading home for week to see what is going on in the real world.   The office has done a good  job of keeping my things going. 

Stacy and I are both excited to have her leave the hospital soon, but it is kind of sad in a twisted sort of way.  For 8 months less a hand full of days, Lindsey has had a ‘Daddy-Daughter’ or ‘Mommy-Daughter’ date every night, including sleep overs, evening walks, music, games, stories, friend visits, foot massages, and mostly just time. When I get back from Oregon it’s going to be different, a good different, but different.  I never thought that I would miss that part of my life.  Those are turning into good(?) memories.  Memories I hope we NEVER relive but good memories none the less. (I know that sounds weird)

 You can tell Lindsey is nervous to be leaving the hospital.  Again it hard to explain, but there was a real security she felt knowing there was ‘something’ there keeping her okay, a nurse, a monitor, a Berlin, a parent,  something. Now she will be on her own.  (Not really on her own, we will be watching her like a hawk, but that is how she is feeling).  Yes it is good and wonderful, and a blessing from God, but this is an adjustment she having to process.

Stacy and the kids are now in the Sobrato Room playing Wacky 6 and other Games. Stacy’s Mom, ReNae, is flying in to spend the week here while I am gone.  I would love to be there as our Princess ventures out, but I also need to get home for the busy season.  Stacy and ReNae will have their hands full as Sierra gets her treatments, Lindsey has her appointments and biopsy, Megan has her games, and the boys have their ‘whatever’.

As for today, my Mom left on an Alaska flight out of San Jose to Boise. Should be there around 2:00. I kept moving my flight back during the week and now leaving out of Oakland on a Southwest flight. My brother was going to pick us both up in Boise around four.   Just for a little drama, part way through our flight they had to turn around and come back to Oakland for some maintenance.  There were a few people freaking out, but there was no major event. So now my Mom and Uncle Justin will have to wait a couple of hours, really no big deal.

Interesting in rounds on 3 West, it’s the same ole' doctors and nurses, but now they are watching a whole new set of issues. There is no more talk of blood thinning, INR, cannula site, etc. Now its heart function, rejection med, blood levels, and blood pressure.  Once they have the blood pressure and rejection meds stabilized and no new issues pop up, she should be released to the RMH. Once at the RMH she will still have weekly clinic appointments, echos, biopsies, IV treatments, and school. So we are never that far away.

We have been keeping our eyes open for some dude pulling their kids around in a nice ‘gently used’ bike buggy. What we think really happened is there are a few homeless people that live a short distance away, like ‘Hunter’s Hideout’.  We think we are going to see the buggy on a street corner with all kinds of treasures in it. But haven’t seen it yet.

Till next time

Feb 22, Day 8, The chin hair is gone!

This morning in rounds she was reduced to 'floor' status, meaning no more monitors, no more IV's, no more machines, no more nurses following her around, just vitals every 4 hours.  This was a big deal!  So this morning we took her to school, and dropped her off. Felt like dropping off your kid at college. For the first time since June 2012 she just sat there, no monitors, no nurses, no IV pumps, no Berlin, just a couple of bandages and staples in her chest. Pretty neat experience.  At 12:30 she went to physical therapy with her favorite Sandra and Mandi.  After walking 2 flights of stairs (again a first since June) they made mini pizza's and delivered them to Sierra down in the Short Stay.  This was the day we had been dreaming and praying for.  It's been really hard not to get excited about how well she is doing. 

Sierra did well with her plasma pheresis.  Meghan Cleary came by to hang out with Sierra. That was nice of her and they had a good time.

At 1:30 Stacy and I met with Nancy for training. She went through everything we will need to do and watch for when Lindsey is discharged. They are thinking maybe Tuesday or Wednesday for discharging. Yes OUT of the hospital to the RMH.  They kept saying she would do well after transplant, given her good condition going it.  Most everything was the same as Sierra's discharge, but it was a good reminder of what we should be doing and watching for.  Basically, if she sneezes funny, they want to know about it.   We will be doing blood pressures and pulse every 12 hours, meds at various times, and temp once a day.

At 3:00 she was transferred to 3 West.  She was very excited, we were all excited, when the announcement came.  Different room but who cares!  The two main area's of concern that is keeping her even in the hospital are blood pressure and rejection medication adjustments.  Keeping her blood pressure under control is the #1 way to keep the risk of seizures down.  The blood pressure is caused by high levels of steroids and other anti-rejection drugs.

Tonight was the ceremony. You could see a lot of excitement and a bit of sadness as we all said farewell to the symbol of her waiting and enduring. Stacy did 4 cute braids and Lindsey got the job done in the Sobrato Room.  So far, she has been in the hospital for 256 days. Pictures will tell the rest.

Many prayers have been answered in the last 8 days.  Honestly, Stacy and I can not comprehend the overwhelming number of sincere prayers and support in Lindsey's behalf.  We are truly blessed.



You know Stacy loved it!

  

Feb 21, Thursday, One week ago today

Started off great with glimpses of 'Lindsey' poking through. She started to joke a little and be her 'usual' self. As the day went on she slowly reverted back to the emotional mess. They are still keeping a close eye on her for seizures and other reactions to the steroids. They have stopped the cyclo that was causing the PRES but now that she is on Prograf, they are watching her for the same thing. A few times Stacy and I have wondered if it was happening, but so far, so good. Yes, it can be a little stressful.

At 2:30 she went in for her first biopsy. She was pretty nervous. We talked to her about being 'biopsy brave'.  When Sierra goes in for her biopsies, she does them awake with just a local anaesthetic. When she does them awake the recovery has been much quicker. So, for years when the kids needed to do something hard or challenging we talked about being 'biopsy brave'.  Lindsey of course did her biopsy asleep, but she was a bit scared going in.

Biopsy was done and she did well. All we know for now is her heart pressures are fine. I will NEVER take that for granted. Tomorrow we will find out the biopsy results. If (and that's a big if) she has a zero, they may turn down her steroids a little. Of course if there is raging rejection they will hit her with 3 days of IV Steroids. And if it is mild or moderate rejection, they may or may not do anything, just depends.

Sierra did school at the hospital today.  She sat where Lindsey usual does.  Her shoulder is still pretty sore from the port placement. Tomorrow she has the next treatment at 1:00 pm at the Short Stay.

This morning, Mary Alice brought by Lindsey's Berlin. This was the final farewell. They are shipping traeh nilreb back to Texas for servicing. It was interesting to see the machine that was our daughters lifeline, just sitting there, lifeless and quiet. Mary let Linds turn it on, program the settings, adjust the hoses, and run the override switches. Basically everything that was forbidden before.  For a few minutes we sat and listen to the hum and ticking of the machine. In a way she was saying good by to a major part of her, a way of life for 230 days. Thanks Traeh nilreb.

I am just now starting to get back into my work. This week has been a whirl wind of activity, and today was really the first time I have had the mental capacity to think outside this room. It actually felt real good. I was originally going to fly home last Monday for 2 weeks but have postponed my flight home twice. For now, I am planning to fly home Saturday and spend at least a week.  But who are we kidding, we are just going day-to-day.  Stacy's Mom is coming Saturday to spent the week, so we should be good.

Here is one for ya. This morning between Midnight at 6:30 am someone stole the buggy off the back of our bike. We had the bike locked in front of the RMH and some low life had the nerve to steel it.  What exactly are they going to do with it? Sell if for drugs? Hook it to your bike and take your own kids in it. It was at the RMH!  Wow, what a guy?  We used that thing for groceries, Gage, and transfering clean clothes and supplies between the RMH and LPCH.

Tracy and Kim, 2 wonderful nurses from 3 West, just came by for a fun social visit.  They sure brighten her day. Earlier Shannon came by and did the same thing. Those nurses are family to her, sure means a lot when they make the extra effort to brighten her spirits.

My Mom is at the RMH with the kids. Haven't seen much of Hunter or Megan.  Once we get moved up to 3 West, we can finally start living as a family. Just been a crazy week.

 'English' Tracy and Kim P

Lindsey heading in for Biopsy

Later Traeh

Feb 20, Day 6, Big improvements...but don't ask her

She has had a great day! Everything in the right direction, but don't ask her. They have her blood pressure more under control, no signs of additional seizures, she is completely off oxygen, took four small walks, eating a little bit, her lungs are beginning to open up, and they took her central line out of her neck.  She has been cleared to go to 3 West, given there is room up there.  Compared to yesterday, she is doing great.  You would think she would be jumping for joy (we are). But....

When a child has major heart surgery, a seizure, and is pumped full of steroids, her emotions are a bit out of wack. She honestly thinks she had a horrible day. Tears have been falling, and she doesn't know why.  (Makes me wonder if this is what we have coming with 3 future teenage girls.)

Sierra's plasma pheresis went well today, she was pretty nervous but did just fine. The procedure took about an hour and a half. The old '60's lookin' machine pulls the blood out, spins it to separate out the plasma, and replaces it with fresh plasma. Given her weight and size, the blood should have circulated through the machine one and a half times. On Friday she will repeat the procedure in the Short Stay Unit, then Monday, Wednesday and Friday of next week. They do the first treatment in the ICU to watch for side affects, but the next four treatments will be in the Short Stay.  The plasma is where the damaging anti-bodies are.  Hopefully by cleaning out the antibodies and replacing them with 'good' ones, her heart will improve.

Sierra is tired and her shoulder is sore but she is doing well.  For now, she is going to go to the hospital school to do her Jordan homework, but may go to Jordan as her shoulder heals up.

Tomorrow is a big day for the Princess, it is her first biopsy. She will go in around noon and see where she is at for rejection and heart pressures.  Also hoping she will be transferred to 3 West. If she is up for it, we may even cut the chin hair. But before I give her any sharp objects, we need to have a pretty major change in attitude.

That's it for now, good day. Today was a good example of not letting yesterday's lows get to low, but be careful of the highs, everything in balance.  Today we are truly grateful for the many prayers being answered in our behalf.   As always, thank you for the comments, love and support.

 Hangin' out is Sierra's room. Doin well, but not much for personality.

 Today Chloe went home. Not just the RMH, but HOME! Lindsey mustered up a smile, but she didn't want to.

The machine.  Looked like some sort of old Reinke pivot panel.

Feb 19, Day 5, Tuesday, The Siezure!

10:30 pm
Lindsey called us at 12:30 last night so I biked over to spend the night with her. Just for good ole' times, I made my '3 chair' combo bed and crawled in for a few hours of 'sound' sleep.  She was up several times and didn't sleep well.  This morning Katz took out the last chest tube and did a dressing change, she went on a walk around the CVICU, and had lowered the amount of oxygen she was on. She was and still is a bit grumpy, irritable and not in the mood to joke around (yet).  She was cleared to go to 3 West, so we are all excited and ready to bust out of here.  

Sierra didn't go to school today and had checked in to get the plasma pheresis port placed. It is basically a huge IV placed in her neck/shoulder area.  They put her under general anaesthesia and stitch the port in place. She will have this port in for over a month as she receives these treatments.  The procedure was postponed until this afternoon and finally went in at the same time Lindsey was doing her 'thing'.

My Mom had Gage back at the RMH and never did come over. Today it was a blessing to have her here watching Gage, getting Hunter off the bus, and being with Megan.

Then at 2:20 everything went crazy. Thank goodness my awesome wife was here. Lindsey started acting weird, not speaking in complete sentences, not breathing well, and not able to swallow liquid or her meds. She lost focus and was not responding to Stacy or the nurse.  It had been slowly building over several hours but came to a head a little after two o'clock.  Stacy was sitting her up to go potty and Lindsey wouldn't focus, eyes not following, no balance, and her oxygen started to drop. Stacy layed her back in bed and she basically stopped breathing. I didn't know how to respond. I didn't want to be there, but I didn't want to leave either.  It's a horrible feeling to have.  Doctor Axelrod (the one that is 'Where's Waldo') was on and took over. He was all business!  At that moment, I received the call that they were ready for Sierra, so her and I got the heck out of there.  They bagged Lindsey and put her back on the ventilator.  I stayed with Sierra, checked her in, and waited as they did the procedure.  I was to scared to check in on Stacy.  I just sat there in the waiting room. It's a lonely place to be.

 Stacy stayed with Lindsey and gave me a report around 5:00.   They did an MRI and confirmed she had a 'PRES' episode, a seizure relating to a common reaction to cyclosporin, one of the anti-rejection drug.  They have since gotten her stable and took her off the vent at around 7:30.  She is still very sleepy but is responding to questions.  The MRI did show signs of some swelling on the brain, and a little bleeding, but Axelrod assures us this is reversible and does happen with some transplant patients. They are of course going to stop the cyclosporin and start her on prograf, they are also going to start her on an anti-seizure and high blood pressure medicine. 

So here we are, I am here with Sierra who is recovering from the procedure and ready for the plasma pheresis in the morning. Stacy is 2 doors down with Lindsey watching and helping.

Honestly, that was a very lonely and helpless experience. I had walked with Sierra down to the lab, then sat out in the waiting area scared to death to call Stacy or walk back and check on Lindsey. I just sat there and sobbed as friends and family sent comforting messages on my phone. Lindsey will have a tough road ahead of her.  For Sierra, plasma pheresis with IV therapy is their attempt to save her transplanted heart.  They have made it clear that this procedure may or may not work and that there are not a lot of options after this. The true reality of heart transplantation once again sunk deep.  Nothing is guaranteed.

Donna from the transplant team came by while I was waiting for Sierra. I was still choked up, but all the discouraging thoughts came flooding back.  I mouthed the words, "Will we ever go home as a family? Will I ever shave this 'thing' off my chin? Will I need to start my chin hair over for someone else?"  She didn't offer any answers. Nothing is guaranteed.  Just comfort that we are good parents doing the best we can to help our children.

A CVICU is a tough place to be. In the last 5 days we have heard the 'code' alarm go off twice. If you have ever heard that and seen the reaction, it will change your life forever.  It's a horrible sound as you watch medical staff running and working to save and preserve a child's life. The only reason I bring this up is to remind myself that it could be worse, we are doing good, our kids have options, the doctors know what to do. I must trust their judgement and decisions. I must have faith in God, that he hears each one of our prayers. He knows the pains and suffering of his children. He has a plan for each one of us, and our days are not numbered less.

Tonight I pray the Lord will watch over Lindsey, keep her stable, and allow her to recover. I pray the doctors will have the wisdom and insight to know how to treat and monitor her. Also, I pray the plasma pheresis and IV treatments will work for Sierra.

Dr Axelrod, (Where's Waldo) this morning before the 'fun' began. 

 

 On her morning walk with Mandi, Shannon, and Sandra

 Back on the Vent

Sierra's fancy 'little' port.