Nov 7, Fighting with Gage and the feeding tube.

Haven't had any more of those crazy amnesia episodes.  Hopefully it was just low blood sugar and we can move on. We are all encouraging but not pushing more juices, milk, fruit, and food, rather than just water, which is what she prefers.

This morning Lindsey and Gage were fighting over something. Lindsey grabbed it and threw it on her bed out of Gage's reach. Gage threw a fit and jerked her feeding tube...... OUT! We didn't see it but you would have thought he jerked her Berlin out. Oh the wailing and gnashing of teeth! The way she was crying and Gage running away we were looking for something horrible. We all calmed down and she spent the day feeding tubeless.  Tonight we get the wonderful opportunity of replacing the tube, yee-ha.

They did a dressing change at noon today and frankly it looks worse.  But you can be the judge of it.  It is a good thing we have been taking pictures so we can compare from last time.  You can see the redness has increased. She has another dressing change in the morning and Katz (the surgeon) will be here to look at it. They checked her white blood cell count and that was all still normal.  I'm guessing they will start IV antibiotics again. Which will throw off her INR which means more lovenox shots, but that is just my guess.  None of us were expecting the cannulas to look worse. grrrr

Meghan Cleary came by today. She goes to CAL and has treatments here at Stanford. She spent the evening with Lindsey while Stacy and I ran kids around to church and school activities.  Very nice of her.

This last week Jake has been shipping calves back home.  They bought some cattle scales and used them for the first time.  It sure would have been fun to be there.

9:40 pm. Just finished putting the feeding tube in. NOT a fun experience.  Basically they grease up the tube and shove it in her nose while she drinks water to help it go down. Lots of tears, coughing and gagging.  Not many pleasant words for her younger brother Gage.

Lindsey and her latest Wacky 6 victim, Meghan Cleary.

 These are pictures from today, 11/7/12

 And this is a picture from last week, 10/31/12.

Nov 6, Amnesia - bit of a scare.

Lindsey loved the comments back to her from her post. She will do that again sometime, but tonight she is tired and ready for bed.

Bit of a scare today.  She is doing great right now, let me repeat, she is doing great right now.  But during PT around 2:45 today she was taking a bathroom break. Halfway down the hall she had a bit of an amnesia spell. For a few seconds she couldn't remember where she was, what she was doing, or where her parents were. She did NOT pass out, or get weak.  She felt and continues to feel fine.

Denise, her nurse, brought her back to her room and they did a full check up on her and have found NOTHING wrong. Blood pressure fine, (90s over 50s) no clots in the VAD, blood chemistry okay, INR (blood thinning) okay. The doctors did a neurological exam, to see if her mental and motor skills were compromised and she seems okay. So for now, they have ruled out the big items, ie. blood clot to the brain, (stroke) and brain bleed.  They are leaning to possible low blood sugar, since she still doesn't eat anything (except the nightly feeds) and is quite active. She is asleep now and they are watching her stats and VAD closely.  They are going to follow up tomorrow with a few blood tests. Amazing how one 'little' thing can get you on edge.  Tomorrow we are going to encourage more juices and food. Just see how it goes.

We did go on a shorter walk tonight. We needed to get her out of this room. She still gets down if she feels good and doesn't get out of this room.

Her Berlin pump did get switched out this morning for a good one.  The wheel needed repair.  I told them all we need is some wrenchs and a small hydraulic jack, but since it is a life support system, they seem to think it needs to be fixed by a skilled professional. Go figure.

This weekend we have Jeff and Jenny Yeck coming for a visit. We are going to do something crazy and actually GO and do something with our friends. Like go to San Francisco, or Half Moon Bay, or Santa Cruz, or Alcatraz Island for the DAY.  We have never done that, but there are really good people here willing to help us pull this off.

Also next week I am going to make a trip home with Gage.  We will go home for 4 days and fly back on Friday, November 16.  Gage is excited about that!  We are looking for someone to stay here with Stacy and help with the kids while Stacy sleeps here with Lindsey. It would be the nights of Tuesday, November 13 through Thursday, November 15.  If anyone is interested, please drop us a line.

Tonight I made an attempt to explain politics and the election to the kids..... that hard to do!

Sandra, one of the physical therapists, made Lindsey her own ID badge with the little zipper clip. So this is her showing it off with Grace, her night nurse, and Denise her day nurse.  They were also showing off here matching 'stylish' glasses.

 And of course Gage getting in on the photo.

 

Nov 5, Monday, Lindsey here

Hi
At shool I read about skunk,s. The will on my berlin broke so I cant go on my big walks. That,s ok. My Dad and I played wacky six. Hunter and Gage was realy wound UP and noise during prayer.

Thank you for all your letters

WEN CAN I HAVE MY HEART!


                                                                LOVE LINDSEY LOU BINGHAM

                                     
 Good night every one.I love you.

Nov 4, Day 138, Uneventful weekend

Didn't post on Saturday because there was NOTHING to report. And I mean nothing.  She is doing great, no pokes, good walks, spirits up, no sports or activities for the kids. Honestly it was on the boring side.  It's hard to have a nice Saturday with NOTHING to do.  But we also hate to leave her behind if we DID have something to do.  It's quite a dilemma. And if that's our only concern, we are doing GREAT!  Weekdays are better because there is a structure.  With school, PT, walks, playroom, massages (for her), echos, homework, it occupies our day.  But hey, we are not complaining, just commenting.

On Friday we did meet with her teacher Kevin for his one and only 'Parent-Teacher' conference. She is doing good with her school work.  Focusing mostly on reading comprehension. There are 2-3 other kids in her class, but none of them are regulars and some of them come and go. She is the only one that has been there from the beginning of the school year.

Talked to the doctors more about the transplant process. Guess there are 12-13 kids on the LPCH transplant list.  We only know about a third of the them.  Lindsey is the only one with her size, blood type 'O', and antibody issues. So its more of a matching process than a list, because of the uniqueness of the donor needed.

We met a 16 year only who has DCM (same as Lindsey) since she was 2 years old. She had made it this long but was now on the 'Heart Mate' (the Berlin for older larger patients).  She wants to meet Sierra and ask a bunch of questions.

Today, Sunday, there was a social at the Steven's place.  Really nice family.  We didn't realize there were so many new people in the ward.  There are about 10-15 new young couples who have moved in in the last couple of months.  Shoot, we have been here for 5 months, so we felt like old timers (not really)!

I was impressed with Lindsey today.  She felt good enough to let both Stacy and I stay for the entire Sunday service. Usually we only go for the 1st hour then one of us comes back, but today she was okay with us staying.  It helped that John (Chloe's dad) played games with her.  Thanks John.

Tonight, John and Shelly made strawberry shortcake for all of us in the Sabrato Room.  It was sooo good.

Saturday morning at the LPCH fountain. 

Nov 2, Safeway shopping cart

Sierra had her IVIG today. Started this morning at 7:30 am.  She did good, did some homework and slept mostly. 

Lindsey's blood thinning level (INR) is still low, so they are increasing her cuminin and continuing  the lovenox shots every 12 hours.  She is definitely getting tired of that.

They switched out Lindsey's Berlin Pump, which is the blue and white pump you see us pushing around.  Her VAD still looks great.  She hasn't had a clot since August. But her Berlin Pump was showing the miles.  It had scratches and stickers all over it, and it had a squeaky wheel on one side. It sounded like one of those Safeway shopping cart with a bad wheel.  Hopefully this new shiny machine won't alarm tonight. 

We received a link to a cute youtube video the hospital did for the trick-or-treat trail.
In the video is Amanda, Lindsey's friend who comes by our room to visit.  She received a heart and liver transplant back in June, and is having some complications.

http://www.youtube.com/watch?v=WmGWEkqtDTM

Stacy had her heart appointment at 12:30 today. As we knew, she checked out just fine. No heart issues.  They talked quite a bit about the genetic testing, which this Dr has been involved in.  There is still no definite 'smoking gun'. But basically they want to test both Sierra and Lindsey for the possible flaggers found with Lindsey. 

It's always an interesting day going back and forth between Sierra's room on the 1st floor, and Lindsey's room on the 3rd floor.  It's all good, they are both doing well.

Wish it could have worked out to have a babysitter tonight. I sure miss my wife sometimes especially on Friday nights.  But Lindsey's spirits are so good right now, we don't want to jinks it by leaving her alone to long.

Nov 1, Jordan Jaguars and the Oakland Raiders

First we have to say good-bye to our good friends Kade, Stephanie, and Tristen Thomas.  This morning I drove them to the Oakland Airport and they are heading home.  Tristen is doing great and they are excited.  It was nice having fellow Oregonians here on 3 West and at the RMH from Adrian, Oregon.  We will miss them and look forward to having camping trips with them up at Anthony Lakes.  Take care of those cute kids and we will see you soon.

Now we need to finish our Halloween events and pictures. We have more fun pictures.  After the hospital activities, I brought the kids back to the RMH for dinner and pictures. The Oakland Raider fan club and Raiderettes were there cooking dinner, mingling with the kids, and taking pictures. I think the pictures say it all.

Today it was back to work, school, PT, eating outside, and fun walks. No real issues with Lindsey, just the same ole stuff.  She is now back to weekly dressing changes, thats good. But still getting lovenox shots every 12 hours, thats bad.  They have to be getting close on getting her blood levels stable. 

Megan had her final volleyball game.  We were originally told the game was in Ralston, about 30 minute drive north.  When we got there (20 minutes before the final game) there were NO teammates.   In a panic, we made some phone calls back to Lindsey's room and she looked up Stacy e-mail.  Sure enough the game was moved back at Jordan.  Somehow we missed the memo and hurried back. To put it nicely, you could feel the tension in the Big Red suburban as dear ole' Dad was a movin' and a grovin' on Highway 101.  Big Red landed safely back at Jordan Middle School 10 minutes after the game had started.  Megan calmed herself down (I little) and hurried in. She played quite a bit, made a couple of good saves / hits and the team beat their rival Termin for the final game of the year. They were pretty excited.  Lindsey got a kick out of helping us out of our predicament and was a good sport about us all being gone.

Tomorrow Sierra as her monthly IVIG 12 treatment beginning at 7:30 am.  Hard to believe it has already been 30 days since we did that.  It will be really nice when her dang antibody rejection calms down.

Other than that, its just another day (#135) in paradise.

 Kade, Stephanie, and their beautiful baby Tristen.

Megan getting some air!

 

 

 A few more Halloween pictures

 More Halloween

 

The Oakland Raider fan club at the RMH

 

 Sierra and Megan didn't know what to think.

Neither did the boys, but look at Hunters face. They will love this picture when they are 16.