Feb 18, Day 4, First walk and Sierra's plan

Monday
This time we slept until 5:00 am before the call, but I guess she tried at 3:30 am and we didn't 'hear' our phones.  Lindsey was NOT impressed.  Oh well. Lots of good stuff today. She is down to 3 liters of oxygen, and breathing much better. Her kidney's have kicked in and doing much better. They have pulled two of the three chest tubes and two IV's. 

Transferred a lot of her meds to oral rather than IV. Her old cannula sites have dramatically slowed down with the drainage.  She has been ok'd for a full diet, but of course doesn't want to eat / drink as much as she needs. Hopefully that picks up before the dreaded feeding tube has to go in. She is eating a little, just have to see. The Princess fiery personality isn't back yet, but getting closer each day. You can see that 'recovering' look in her eye.

Best of all her favorite physical therapist came by, got her up, and took her on a nice long walk around the unit.  They are talking about letting her go to 3 West tomorrow!! Now we are talkin'!

They just moved us from the corner room back to the SAME room she was in when she was on the Berlin. Everything feels the same except a lot! She is fleshy, healthy, no blood thinner, and most of all no Traeh Nilreb!  I remember sitting in this very corner 7 months ago on the 4th of July looking out the window doing my updates. Strange thoughts.

Still looking at Wednesday evening for the ceremony.

As for Sierra, they have consulted several experts from around the country and Canada. Tomorrow we need to have her here for placement of the port catheter through her vein. This port will be in for the 5 plasma pheresis treatments.  The first treatment will be here in the CVICU tomorrow and will last a couple of hours, she will then stay here for 24 hours to make sure everything is okay. Her next treatment will be 2 days later in the Short Stay unit down stairs.  She will have treatments every other day for about 12 days.  At the end of the treatments, she will get a new IV medication, get a 12 hour IVIG, repeat the biopsy, then see where her anti-body mediated rejection (AMR) is at.  (AMR is becoming a cuss word among transplant patients).

Just so I am clear, she has elevated pressures in her heart, it squeezes fine, but is showing signs of stiffening. If this therapy doesn't work, we will be reintroduced to the thought of a 2nd heart transplant for her.   I understand there is a lot of uncertainty and we will understand more as this treatment moves forward. They admitted, they have not very many kids need this therapy. Usually the IVIG has worked, so this will be something relatively new for some of them. Doesn't that just make you feel warm and fuzzy inside!  God has heard and answered prayers before. Miracles do and have happened. No reason in the world why he won't hear and answer these prayers. He knows each one of us and has a plan for us.

I have said this before, but I must repeat this for myself.  Lindsey AND Sierra both including the other kids need to see and feel and know that their parents have all the confidence, hope, excitement, enthusium, and faith that they will pull through this.

So tomorrow, Lindsey should be heading to 3 West and Sierra will be here in CV. BRING IT ON!!

Gage, dad-gum-it, don't you even think about it!

 Drinkin' and getting ready to ambulate

 We are movin'

 During her walk, a visit to an old friend, traeh nilreb.

Jerry from RT, She still likes his hair.

 

 Dressing change for the old Berlin sites.  It really did remind me of a cancer eye cow. I have other 'better' pictures but didn't post.

 

 

Feb 17, Day 3, Sunday evening, The gusher

More steps in the right direction with a little bit of intense excitement (which I will get to). 
The 3rd chest tube went in to help with the fluid on her right side. The left chest tube is doing well and may come out tomorrow. Her kidney's are doing much better and much of her fluid is off. With that fluid off she has been awake more and breathing better. She has only needed the high flow nasal cannula's at 7 liters, (she was at 20 liters on the cpap mask) so this is all good.  They took out the arterial line in her right hand so she can play Sorry a little more aggressively. She isn't ready for Wacky 6, but getting close.

As for the excitement, while we were at church, she had a small run of V-Tach. Remember, that was that dirty word we threw around back in September, the dangerous irregular heart beats that put her back in the CVICU.  This time it lasted about 4 seconds, and they think it was related to her electrolytes being out of balance. It was out of balance because of the lasix given to pull the fluid off.  They are giving her potassium to correct it, and so far, it hasn't happened since.

For the second bit of excitement, and it was exciting, she still is having some fluid draining from the old Berlin cannula site. Each time she stands up that site just gushes out blood and fluid. Tonight was particular crazy. She got up to use the bed side toilet for the first time and out came the fluid. The nurse didn't know what to do so she held her hand over it like a WW2 medic and we got her back into bed. There was blood all over her, the floor and equipment. The nurse guessed around 55 cc's.  Lindsey wasn't crazy about the scene and we had the kids go into the other room. They had the surgeon Dr. Ashok come in to assess. (He's the really funny one that took out Gage's staples, Gage still will not look at him, but Ashok keeps trying).   Anyway Dr Ashok assured us, the nurses, and the doctors, that the cannula site was 'communicating' with the right lung area and her lower abdomen area. He is completely convinced that it is just 'fluid' and that it is okay and should come out.  I asked him several times directly if it was BLOOD that needs to stay in her BODY. He said NO, that fluid will come out the same as the fluid in the 3 chest tubes.  Okay..... just keep an eye on my kid!! I have gutted a few deer in my day (no elk... yet) and I have seen blood, just not out of my own child.

My Mom is flying in tomorrow for a week.  Hope to be having the 'ceremony' on Wednesday night?  Will have to see. 

They just turned her oxygen down to 6 liters, and she is holding good sound asleep.  She was just sleep talking, but couldn't understand.

Read through some amazing comments. Stacy and I are both humbled by the affect our little Princess is having on others.  We will never truly understand the impact this experience is having on so many other people. 

Feb 17, Day 3, Sunday morning, a new line

9:40 am
Stacy and I both slept very well (together) until 3:30 am when the usual call came. She was awake and wanting her Mommy. Stacy headed over and Sierra and I drifted back to sleep. At 8:00 Stacy called with the morning report. She has pee'd off about a liter and a half of fluid (around 3-4 lbs), still in and out of sleeping, and they needed to put in another chest tube. Given her drop in oxygen and breathing issues, they put in another tube to help drain fluid off around her lungs. The old cannula sites are still bleeding and oozing quite a bit. The only IV she is currently on is the IVIG for antibody rejection, that is standard for all kids with prior antibody issues.

Sierra and I are going to head over soon and Stacy will come back to shower (and rest?... probably not)  The other kids spent the night at the Blacks and Niccums. Thank you Liz and Gayle.

Stacy and I have read everyone of the comments and inspiring thoughts of encouragement. It is definitely a strength to us. I'm convinced, most parents and families out there would handle this situation similarly. We don't feel like we are doing anything special. We say our prayers, read scriptures, take care of our kids, 'try' not to freak out over the highs and lows, and just keep going.  We are so thankful to our Heavenly Father for the blessing and miracles in our lives, for the nurses and doctors that make that extra effort, for the people that has helped with our children, for the meals that have come, and the many prayers, thoughts, support and comments in our behalf.

Feb 16, 11:30pm, On cpap. Wake Up!

We did get her up, and a large amount of blood came gushing out the cannula sites. Kinda gross! She was a bit dizzy, but that was her first time up. She was determined to get up, but by the time we got her into the chair, cleaned up, and settled, she fell back asleep. She has slept most of the day. Her oxygen saturation has dropped again requiring her to go back on cpap, a forced air mask. When she coughs, there is still quite a bit of blood. So basically she is not there yet.  Still needs to pee a whole bunch. They still think the sleeping is from the sedation given during surgery hanging around in the system. And the more she isn't moving around the more issues she is having with her lungs. When she is not wearing the cpap mask, her oxygen level drops quickly. Stacy is still cool as a cat, but I had to go on a few walks when they were doing bloody dressing changes or adjusting her oxygen. She will get there, it just takes time. We all want her to 'hurry up' and get back to 3 West.  Once she is on 3 West, we will have the ceremony to cut the chin hair, but not until she has a steady hand on 3 West.

  Sleep tight.

Feb 16, Day 2, Saturday afternoon, the Check list

2:00 pm
As usual, it is never as bad as I get thinking it's going to be. She is awake a lot more today and we even played a game of Sorry. They are letting her have ice and she likes that. They had to put her on the high flow oxygen because of dropping O2 stats. But here is where she is at.
1)  They need her INR to be at or below 1.5 to remove the atrial line.
2)  To get it down they had to give her additional blood products, which is making her retain fluid, become very puffy, and hard to breath.
3)  Once this line is removed she can sit up, start moving around, and remove the foley.
4)  As she moves around, the kidney's 'should' kick in and her pee bucket 'should' start to fill.
5)  As the bucket fills, her puffiness will go down and the fluid in her lungs should go down.
6)  As her lungs improve, the need to high flow or any assisted breathing should go down.
7)  Also as the kidneys improve and the bucket fills, and anesthesia still in her system will be pee'd off.
8)  Then she will be awake more, filling better, moving around, and breathing comfortably on room air.
So there you go.  That's the plan for now.

Sierra went out to lunch with Jen Shek, one of her favorite nurse from 2006, and then to a rugby game with Nori. Megan had fun at PK's and the volleyball tournament, and is now here with Linds. Who knows where the boys are at, I think they are at either the Blacks, Norths, or Niccums. Actually I think Stacy knows but hasn't bothered telling me.  Angel (Ben's mom) is here with her friend for a visit. Ben was on the Berlin 6 years ago, so of course they have a lot to visit about.

(Hour later)
Just now Linds hit 1.6 on her INR which they say is close enough. At 4:00pm they will remove the artrial line that goes directly into the heart. Step #1 will be done, and we can move to #3.

(1/2 hour later)
The line is out, and just noticed that 6 of her 8 IV's are gone. This room is getting 'boring'.

Dr Katz Meada, her heart surgeon, here for a visit.

Next update will be her sitting in the chair!!

Feb 16, Day 2 Post transplant, Thoughts - The Soldier

Stacy and I slept at the RMH until 3:30 am when the phone rang. Lindsey was anxious and wanting her Mommy. She has steadily needed increased oxygen and was going on that forced air mask thing. The nasal thing isn't enough. She really needs to wake up, cough REALLY hard and get those kidney's going.  Now it is 10 am and I'm quite nervous to call and find out. When I haven't heard how she is doing for a while, my mind starts to go places.  I assume she is going down hill, but yet I don't want to call.  They know what they are doing and all I do watch the monitor, seeing her blood pressure rise to high or drop to low, or see her heart pressures rise, see her temperature rise, her oxygen level drop, or seeing blood soaked bandages around the old nasty cannula sites. All these things were going on last night. Yes we can all worry and fret about the numbers, but that is not our job. They say she is fine and that's all I need (or should) know for now. Stacy is much more stable with that sort of stuff. All the memories of Sierra, Gage, and Lindsey's Berlin keep coming back as I watch (or avoid watching) the monitor.

Couple of other thoughts.  I was talking to Katherine last night at the CV. She made a great observation and analogy, and I didn't want to forget it.  Regarding Megan, how is she doing and coping with this? Yesterday when I was getting report on Sierra, Megan and Stacy was with Lindsey. At that particular time Lindsey was anxious and wanted comfort. There came a point when Stacy had to leave Lindsey to be with Sierra who was breaking down. I was in the hallway and did not yet have my composure.  At that moment Megan too broke down in Lindsey room trying to comfort her little sister. The question is how does Megan cope with all this?

Katherine pointed out that during war, soldiers find themselves in battle with bombs and bullets raining down on them. As soldiers see their comrades fall they begin to feel like they are the next one to drop, as though their next step will be on a bomb shell. Megan is our soldier. In her eyes, she sees her sisters and brother 'falling'.  Will she be the 'next one'? She is a strong, but not strong like her sisters, it's a different strong. Ambition, drive, outgoing, fun loving, excited.  Several times yesterday she broke down in tears just wanting everything to go away. "Why can't we be normal? I want to go back to the way it was before all this". Many times she has to play the big sister roll and be strong even when she doesn't want to be. Yesterday was a perfect example.  Her way of 'getting away' from this is sports, reading, and her friends.  I think that is one reason she loves basketball, volleyball, reading, and hangin' out at PK's house.  We are also going to find a way for her to go on the Powder Valley School 6th grade trip. I will find a way for her to be there. It will do her good.

These are just some thoughts,  Megan is doing good. I just don't want her to ever think that her Mom and Dad love her any less because she is 'healthy'. She is a soldier and a huge strength to her sisters.

As for Hunter and Gage, those boys just love a be boys.

Time to check in with Lindsey and Stacy. I'm ready now.