Sept 19, CT Scan results

Sierra had a clinic appointment this morning. Some 'tune-up' items they are addressing.  The notes below is just our way of documenting where she is at. We are not trying to scare or overwhelm anyone.  And yes, I wish there were no 'tune-up' items to address, but this is the reality of it.
1) She has mild leaking in one of the heart valves, caused by 6 years of biopsy procedures.  Nothing can be done now, it's just something they need to watch.  It would have to get a lot worse before they would need to repair it surgically.  
2) Still has active anti-body rejection going on.  The IVIG treats against this rejection, but if it continues, they have the option of going to stronger IV treatments.
3)  She has slightly increased pressures in her heart.  In the past she has had increased pressures when she has had rejection.
4)  The puffiness in her face is still attributable to the predisone she takes to fight the rejection.
5)  Confirmed her coronary arteries look good.  Meaning the arteries have improved from last year and no significant signs of coronary artery disease exists. That is GREAT!
6)  In 2 weeks they will repeat the biopsy and see where her rejection level is at.
7)  Even with all this she has NO restrictions on physical activities (except football, Henry Shaw style ufc fighting, and hockey).  Her heart is beating 'normally'.

1:30 pm. Lindsey just had her CT scan done.  They are looking closely at where the canulas go into her heart. Hopefully this will give an explanation for the pvc's and pump alarms. I still have an yucky pit in my stomach and hope they can manage this without surgery.

With the med adjustments lately she has had to get daily blood draws.  Stacy and I have been here long enough to know what the blood draws are for and we are lobbying very hard to limit the blood draws.  Before the next draw I want the doctor himself to come in and explain why. Her poor arms are heavily bruised and it took 5 pokes to find a vein for one blood test.   If the daily draws continue they will probably need to do a picc line, as much as we don't want it (because of the risk of infection and fevers).

9:00 pm.  Lobbying paid off. No blood draws until friday. Lindsey appreciated that.  Dr. Yeh came in and reviewed the results of the CT scan. The CT scan shows nothing wrong with the canulas, the Berlin pump is operating perfectly inside her heart.  That is good news in one aspect, they do not need to repair the canulas surgically.  However, this does narrow down the cause of the pvc's and pump alarms. The right side of her heart (RV) is continuing to fail.  Remember the right side is not supported by the Berlin.  As the RV (right ventricle) continues to weaken and enlarge, it pushes over into the left side causing the VAD to not fill properly, the pvc's, and the pump alarms. So tonight for the first time since before the Berlin was put in they started enalipril, an oral heart failure medicine.  This is the same med Gage is on.  They want to treat the RV failure with everything they can, the very last resort would be a 2nd Berlin. 

So for now we carry on. Stacy starts volunteering at Hunters school tomorrow for 1 hour. Hunter is very excited. Nothing changes for Lindsey, school, walks, eating, play room, PT, and meds. Stacy and I continue with work, kids, sports, volleyball, homework, Dr appointments, and maybe a little deer camp.  We haven't forgotten our prayers. I still believe and have faith that God hears and answers our prayers.  We are truly blessed at this time to all be together with Lindsey in a great hospital.

Lindsey has been sitting here with me.  It's her turn to write.
 And I am still wating for a haert.Iam filling beter and I am TIRED OF GETING POKES Mrs.simth would like to skyp with me. Hi every everybody I miss you alote.I have a good techer. My favrite game is to play Plants VS ZOMBIE,S and I like my dad sleping here. Wish I could go to deer camp.  My dad said I nead to go to bed  Love you. Lindsey Lou.   

Beauty and the Beast on their way to the CT Scan

Sept 18, Blood nurses and the Nixon party

10:40 pm.
Dr. Yeh came up from the ICU to make some adjustments to her Berlin Pump.  They adjusted some of the pressure settings to see if that will help with the pump alarms.  He said they have the pump alarm with other kids but nothing like what Lindsey's pump is doing.  Last night it went off for about a hour.  Thank goodness for the ear plugs!  They are going to go through with the cat scan to get a good look at her heart and the canula sites.  Hopefully they will not have to do surgery to fix the problem, but they are watching the continued pvc's, pump alarms and frequent lack of filling on the VAD.  Still haven't had the dangerous V-tach (a group of pvc's with a highly increased heart rate). That is what is going on on the inside.  On the outside our Princess continues to do very well.  School, PT, a little eating, walks, good attitude, etc.

This morning I was pretty fired up.  The 'blood nurses' came by to draw her blood.  Lindsey was a Rock Star and didn't flinch, just sat there and watched them poke her already bruised arms looking for a vein.  When they were 'done' they forgot they needed more blood, so they had to poke her again. Stacy said it was a good time for me to go back to the RMH and get some work done.  I was pretty ticked off!  If she is going to sit there and take the pokes they better know what they are poking her for!  There... I got it off my chest.

Nixon elementary had a picnic this evening.  Stacy and Sierra stayed with Lindsey and I took the boys and Megan. Good for them to blow off steam.  The Nixon PTA hired a professional DJ to play music and party it up with the kids.  I have never seen that for an elementary school.  The kids sure had a good time.

Sierra has an echo and clinic appointment tomorrow.  They have increased her rejection meds and she is showing more puffiness in her face and tummy.  Hopefully this is pushing back the 1B rejection.

Gage's appointment was fine today.  They just listened to him and turned up the beta blocker medicine.

Sorry, no crazy cooler stories today (that cooler was pretty disgusting)

Sept 17, The Styrofoam Cooler

10:30 pm
Lindsey is still doing great. At 9:30 tonight she wanted to go on a walk so she is feeling pretty good.  She went to both sessions of school, ate okay, and had her Monday x-ray, blood draw, and EKG.  Still has a few runs of PVC's and on occasion her VAD doesn't fill all the way, but nothing to serious.  They did an echo yesterday and noticed a partial build up of something around the canula, or the hose that is inserted into her heart.  Dr. Rosenthal thinks it may be some scar tissue build up.  Really nothing that needs to be done, but that would definitely explain the weird hearts rates and VAD issues.  They are going to review old echos and compare the canula sites, then they may do a cat scan to really look close at it.  He doesn't think it is a blood clot.  Other than that, they have been adjusting meds as needed. 

There are now 4 kids on the Berlin heart right now.  The others are much younger and have tough roads to go down.

I am staying the night here with her and she is pretty excited about that.  I have been sneaking out late after she went to sleep and going to the RMH.  I have paid a heavy price for this sin with a lovely phone call from our precious princess at around 2:30 am wondering where I am at.  Gage then comes in and wants me out of 'his' spot, which is next to his Mommy.

Sierra did good on her 1st math test and made the Jazz band.  She was needing some good vibes.

Went to Megan's volleyball 'Parent Night', met the coach, and received the schedule.  The season has 10 games and will go until October 24.  First game is Thursday against JL Middle School. She is still pretty excited about that.

The RMH received some tickets to the SF 49ers game, so what the heck.  I took Hunter, Sierra, Megan and Chloe's dad John. We had never been to an NFL game and the tickets and parking were all free.  Not sure I have ever seen that much alcohol consumption before.  When we finally found a parking spot for our big red suburban, which was no easy task, Hunter had to 'go' really bad right now!  We had a long walk ahead of us so we were looking for options.  Behind our suburban was a white Styrofoam cooler 2/3 full of urine.  Sierra and Megan were grossed out!  I told Hunter, "Okay Hunter, here you go, it's either in the cooler or you can wet your pants".  And that is how our NFL experience began.  We saw some one get arrested and all kinds of drunk people.  It was quite an eye opener. We had a good time watching the game and had an experience we will never forget.

Sierra and Gage have follow up appointments for their hearts this week then possible med adjustments.

 

 

 

A Picture near the 'Hide Out'.

Sept 15, Go Aggies, Cardinals and Utes

10:00 pm.
Lindsey is still having pvc's and the VAD is still not filling properly so they called in Dr. Rosenthal to look at it and review it with us.  We talked about a lot of stuff, but basically they don't have a good answer as to why this is all happening.  It seems the more she eats and drinks the better her pump reacts, so we have been pushing the food.  She is still on full tube feeds, but the additional food and fluid seems to help. They are going to do an echo tomorrow to look for fluid around the heart and see if that is what is causing this.  She is acting great and went on a good walk.

Took Hunter and Gage home to stretch out. We found a group of trees and a fort out behind the RMH and now we call it 'Hunter's Hideout'.  I think it is actually a place where a homeless person sleeps.  Whatever, it makes a cool fort for the boys.

This morning Dr Katz Meada and his 5 year old daughter Emi came by for a visit. He stayed quite a while and told us about his family, his garden, Japanese culture, and looked at pictures from Oregon. It was very nice of him.

Watched Stanford beat USC in Lindsey's room.  The stadium is just around the corner, so this place was rockin' when the game got over.  Bummer about the Aggies, missed a field goal to loose by 2 to Wisconsin. (That would have been soooo cool.)  Currently watching the BYU / Utah game. (24-7 Utah leading) GO UTES! So if I didn't spell correctly or speak in complete sentences you know why.

   

Sept 14, The VAD is not filling

Still throwing a lot of pvc's, but not the dangerous V-tach's. They still have her on amioderone, an heart rhythm drug along with Magnesium and other stuff but not an IV drip.  Lindsey went to school this morning, but when she came back her heart pump (the vad) wasn't filling properly with blood.  This could be caused by a lack of fluids, her right side not squeezing, or various other reasons, all of which put a nice little pit in your stomach.   The doctors and nurses are pushing more food and fluids on top of the full tube feedings. Stacy is still cool as can be, but to me it is starting to feel like we are living heart beat to heart beat, from one issue to the next.

Tonight her heart pump vad is filling okay, not perfectly, but better than earlier. Right now the kids are watching Lion King 1 1/2 and having a good time.  We ate corn on the cob from our Oregon garden, it was great! I brought it back with me on the plane.

Sierra said she 'feels good' about her first math test.  She sure worked hard preparing for it. Megan didn't make the jazz band.  Now she says she didn't want it anyway, because now she can focus more on volleyball.

Spent the day working on tax returns and other office stuff. But when Stacy told me about the vad not filling, it was sure hard to work around that pit in my stomach.

Remember, we are the cheerleaders and Lindsey support. Sitting around worrying about her pump, irregular heart beats, monitor warnings, right side heart failure, blood clots, infection, internal bleeding, fevers, blood levels, tummy aches, skin rash, amount of ambulating, sleeping habits, fluid retention, and the color and consistency of her poop isn't going to do any good.  Let the doctors and nurses do their thing and we do ours!

Little Chloe, the 9 month old on the Berlin, just went down to the CVICU for vomitting blood and 3 new clots in her vad. They (Mom) are pretty stressed!   Stephanie and her baby Tristen has been released to the RMH.  The baby with the double Berlin is still in the ICU but unsure on the status.

Till next time. 

Yah, we are the cheerleaders!

Sept 13, Back to 3 West, We're Outta Here!

11:00 pm.  Stacy here.
Lindsey was finally able to go up to the third floor today.  I went to go pick her up from school (already knowing she was moving), she looked at me all bright eyed and said, "Mom, I am going up to 3 west today!" To say she was excited is an understatement. The 3 West crew was even nice enough to put us back in our old room.  It is the biggest and best room up there, we are spoiled.

Her heart is still throwing a lot of extra beats.  The EP (Electro Physiology) team said that as long as her heart rate isn't going faster during those runs of extra beats and she does not feel them, then she is fine.  I don't think Jason and I, or the nurses and nurse practitioners from 3 West, were greatly comforted by this.  She hasn't had a run of V-tach but she is still having LOTS of PVC's and some 6-7 in a row making her Berlin alarm like crazy.  BUT, if they are fine with it and feel they can adjust things upstairs, then we are fine with that.  She is still acting great and the Berlin is filling and emptying fine.  As long as both of those keep up, they are not concerned.  It is really hard seeing these irregular heart rhythms and knowing we are still (statistically) only half way into our waiting time. Lets hope that the right side of her heart hangs in there and she won't eventually have to go back and get a right side pump as well.

We had the wonderful treat of seeing Ronda and Shane Fritz this afternoon.  They came and sat with Lindsey and the kids while Jason and I stepped out to do some grocery shopping.  I know women, eat your heart out, it's everyone's "ideal" date.  We did get to talk and hold hands while we shopped, that was nice.  With school tomorrow we didn't want to stay out too long.  Thank you so much Shane and Ronda, I wish you could have stayed longer so we had more time to visit.  We really appreciate you coming!!

Lindsey leaving the CVICU, with Andrea, the nurse on 3 West she is always prank calling.

Back to our fun floor - 3 West