January 12th 2014

So the last time I updated Mia was just headed into PICU because of her decreased heart function.  Well she ended up in the hospital until Dec. 29th. Of the 18 days she was in, 15 were spent in the ICU.  she had severe heart failure but the Milrinone she was on helped a bunch.  Once they got the excess fluid out of her she started getting better.  However because of how fragile her lungs and heart are they took a very long time to wean her from the milrinone onto oral heart medications.
So here are some pictures from my phone.

 Here we are leaving the Ronald McDonald house in SLC on Nov. 25th.  That is Lauren next to Mia.  She was one of the great staff members they have there.

 I made three Gingerbread houses and everyone helped decorate them.  Casey, Mia and Jessica were one team.

 Andrew and Allan were another team.  Although Allan wasn't really interested.

 Heidi and I decorated the final house.

 Andrew made his with a basketball hoop and court.  He also made Allan and a basketball.

 Casey, Mia and Jess'

 Heidi and me.

 Jessica got an award for Kindness at school. cant' see her face!

 The Oncology Clinic had a Christmas carnival.  Heidi and Jessica went.  Mia wanted to but she was in the hospital.

 I got rear-ended one day on the way to the hospital.  Didn't actually hurt my car just busted up the plastic bumper.  A guy two cars behind me tried to stop but the road was a little slick.  He was pulling a trailer with a car on it.  He slid into an expedition and pushed the expedition into me.  I am still waiting to get the bumper fixed.

 Feeling pretty good in the hospital.

Heidi at her Winter concert.  She was in the choir and the fifth grade band.

 She decided to try playing the saxophone this year.  She is standing up in the back.

 During the Holiday, the hospital gets lots of visitors and gifts.  This was the firemen of Boise. Jessica was there that day so she got several gifts also.

 We got a very dry snowfall one day.  It was extremely powdery.  So the girls were playing outside and Heidi covered Jessica in snow.

Here we are on Christmas Eve.  We took sugar cookies up to decorated.  Everyone opened their Christmas pajama bottoms and put them on.  We hung up Mia's stocking and read "Twas the Night Before Christmas."  Then we went home.  Santa filled Mia's stocking at the hospital and left her presents there.  On Christmas morning we had breakfast and opened all the gifts except the ones to and from Mia.  We loaded up and went to the hospital.  There we opened presents with Mia including the ones we got from Santa's Toy Shop. 

 That is a program at the hospital.  Every year they gather together all the donations and put them in a room.  Then a few days before Christmas they take the parents and let them choose as many gifts as they need  or want.

After the presents were all opened we went home and had Christmas dinner.  Both sets of Grandparents were there.  Then just the adults took some dinner back to Mia.  All in all it was a good Christmas.

Mia is continuing to feel and look really well.  Our appointment in SLC last week went really well.  We continue to pray that her recovery will progress unheeded and that she will be able to return to all of her regular activities.

One Month Later!

So we got to return home on Nov 25th.  It has been so nice to be home!  We had a very nice Thanksgiving.  The whole week of Thanksgiving felt like such a nice holiday.  On the following Monday we had a cardiology appointment which was just a quick follow up.  The next day we had an appointment with our oncology doctor and we had fun seeing all of the great nurses at the clinic.  But at that point there was some concern about Mia's potassium and sodium levels.  So we were back the next day for three and a half hours.  The doctor was concerned enough about her levels that he arranged for us to see the pediatric nephrologist the next day.  Boise does not have a pediatric nephrologist so one comes from Portland once a month.  He just happened to be coming the next day.  The visit with him was uncomplicated and quick.  He was fine with what was being done and just wanted to follow up with her in a month.

Then a couple of days ago, I noticed Mia's belly seemed very bloated.  She had also been sleeping a lot.  So I took her in.

She had pneumonia and the doctor admitted her.  Apparently there is nothing wrong with her abdomen other than that she is retaining fluid.  So Mia was dehydrated when we brought her in.  I think she had been getting slowly worse for a while.  She is most likely retaining fluid because her kidneys are not working to full capacity.  So they are not ridding her body of the extra fluid.  This is something caused by her medication, cyclosporine, and exacerbated by her dehydration.  Hopefully added medications will help her kidneys continue to function until she is able to go off the cyclosporine in about four months.  St which time her kidneys should recover most of their function on their own over time.  However she may have some permanent kidney damage.

So I just got a call from her cardiologist.  She had an echo this morning and it looks like the function is very decreased.  So they are going to start her on an IV drug to help restore the function.  The drug can only be administered in ICU.  So they will be moving her shortly and we won't be headed home tomorrow like I thought.  Don't know yet how long they will want to keep her.  This feels a little like deja vu since ICU is where we were at the same time last year.

Post Transplant Day 84

Things were going pretty well.  But last week at her appointment on Wednesday, we found out her potassium was really high.  According to the Nurse Practitioner it was "scary" high.  The doctor said they were in a "minor" panic!  High potassium can lead to heart arrythmia which can potentially be fatal.  Not something to be taken lightly!  In the end she was admitted to the ICU.  She received several meds, one to protect her heart, one to help her pee off the potassium and a couple others to protect her kidneys.  She also received several 1000 ml bolus' of fluid to help flush the potassium out.  She only spent 8 hours in ICU and then was moved up to the Immune Compromised Floor where we usually are.  Her potassium came down to an acceptable level.  In the meantime, it was decided that her heart medications along with her cyclosporine were the most likely cause of the high potassium.  She got to exchange 4 of her drugs for one.  I like that!  The one can cause low blood pressure so we have to watch for that.  She was released from the hospital on Friday.

We had our regular appointment yesterday.  Everything is still okay.  Her potassium is still higher than normal but is okay as far as the doctors are concerned.  Her blood pressure is high, but the BMT doctors like it.  The cardiologists do not.  They would prefer it was lower since she has heart issues.  We are getting all of her tests scheduled next week so we can go home!  She has a Bone Marrow Biopsy on Tuesday and a PET Scan on Wednesday!

On Saturday we went to Temple Square.  It was another beautiful fall day.

 Mia liked the Christus the best

Post Transplant Day 75

The last time I posted Mia had been admitted to the hospital because she wasn't doing very well.  She went in on a Monday and was released on Thursday.  Unfortunately she went back into the hospital the very next day.  She got out on the next Monday.  By then she was really feeling a lot better. Even smiling her beautiful smile for us.  Since then she has been doing great! She is off oxygen during the day and on only 1/2 a liter at night.  We have cut  back on her tube feedings, so she is only getting them over night.  This allows her to feel hungry during the day and eat.  She is off of her IV meds except for her nightly fluids. She has not had any problem with nausea and her diarrhea is gone!

Last weekend Casey bought the kids to visit.  We had a great time!  On Saturday we took them to This Is The Place Pioneer Village.  They had trick or treating for the kids and a story and a costume parade. Because Mia tires so easily we borrowed a wheel chair  from the Ronald McDonald House and Andrew pushed her. 

Friday before everyone got here the Ronald McDonald House was celebrating its 25th birthday.  They had food and cookies and I got to take a tour of the new facility they are building.  It should be open in January and then they will close down the current house and completely remodel it.  Ronald McDonald helped Mia decorate her cookie.

On Monday, Mia and I went to a place called Gardner Village.  It has all these little shops and they were all decorated for Halloween with lots of witches.  We had a cup of hot chocolate.

Mia doesn't have her tube in because she threw it up the night before and we tried a day without it in to see how she would do.

Yesterday was another beautiful fall day.  We were tired of being cooped up so we took a drive out the the Salt Lake Marina

 On our way back into Salt Lake we went through Magna again and found the house we lived in 32 years ago.  It is a duplex and we lived on the left.

We only have three weeks left and we are so excited to go home.  

Post Transplant Day 55

Mia was admitted to the hospital today.  She is retaining fluid (her weight was up 10 pounds since last monday), her blood pressure was up, 130/90, her breathing is fast and her liver function was up.  However her kidney function was fine so they think it is an infection of some sort. Her bilirubin is also up. She also needed more red blood cells today.  She has a rash that could be graph versus host.  All in all she is not feeling to hot:(  Hopefully a cuople of days in the hospital will have her feeling better.

Day +50

    Today is day 50!  We are  halfway there.  We are in our 10th week here and we have 7 weeks to go.   Mia had a harder week.  She slept a lot so when we went in for our appointment on Monday it was no surprise that she needed red blood cells.  She got two units.  She is also back on oxygen 24/7.  Her nausea has really been bothering her.  Sometimes she actually throws up but mostly she just retches for five minutes.  We had a visit from Aunt Linda and Uncle Steve on Monday.  It was very nice. On Sunday we went to Great Grandma Jackman's and watched the second session of conference.  There is not much else to say.  Our lives are boring and that is a good thing.  Can't wait until we get to go home.  I would love to go home early but I am pretty sure there will be no convincing the doctors that we should.

Mia's toes sporting BSU colors!!

Day + 43

So Mia is doing better.  She is off of oxygen during the day and only on 3/4 of a liter at night. One of her IV meds has been cut down from twice a day to only once a day.  Her platelets are coming up and her other counts are doing well.  We also are unhooking her from her feeds for four hours a day to give her a chance to be free!  Also we hope she will start feeling hungry and want to eat.  She still has a bunch of meds she is on and sometimes it is hard for her to take them all.  W still get out each day.  Our favorite place to go is Liberty Park.  We sit and watch the people.  Mia loves to watch kids playing.  

On Monday she wanted to swing and they have these fabulous swings for handicap children.  She enjoyed that. 

 I have been getting lots of sewing done.  Most of it is for Christmas so there won't be any pictures, but these are the girls' Halloween costumes.  

 Jessica is Belle and Heidi is Dorothy.

Some have asked for our address.  Sorry it has taken so long to get on here.We are at the Ronald McDonald House  935 E South Temple SLC, UT 84102

Day +35

Well we finally got of the hospital on Wednesday the 18th. Mia spent a total of 32 days in the hospital.  Today marks the beginning of our seventh week here in Salt Lake City.  We have 65 more days to spend here unless we can talk the doctors into letting us go home home early or we run into problems.  So far Mia seems to be doing very well.  She hasn't had any graph versus host.  She did have a flat rash covering her whole body but it didn't bother her at all.  The doctors weren't sure what it was and it has gone away now.  She was also retaining quite a lot of fluid but the swelling has finally gone down. She does have thrush in her mouth now.  She is on oxygen and a feeding tube.  She has 10 medications as well as IV fluids.  She tires very easily.  We are trying to walk as much as we can to help clear up her lungs and to increase her stamina.

Mia loves her One Direction headphones and the notes that her Young Womens sent her.  She really loves to hear from those back home!

Happy Mia from a few days ago.  We finally got out of the hospital on Friday the 13th.  We had a lovely 24 hours out but she got a fever so it was back to the hospital we went on Saturday!    She is kind of bummed to be back in.  As long as she stays fever clear for 48 hours and nothing grows from the blood cultures in the same amount of time, then we will be able to leave again.

Almost Out

So we thought we were getting out of the hospital last Friday, but Mia got a fever on Thursday night.  A chest x-ray on Friday showed what could be some pneumonia in her left lung.  So Mia was started on an antibiotic.  She is feeling pretty good and is eager to leave the hospital.  She hasn't had any real obvious symptoms of graph versus host so that is good. Not much else to report.

Sep 3 2013

Well Mia is doing very well!  She engrafted on Monday, which was quite a bit faster than expected.  This means that we should be able to leave the hospital by the end of the week.  She has to be off all the IV meds.  She has been getting a lot of fluid with all the IV meds and such.  And she has been retaining it quite a bit.

 

 Here she is just the day before her hair finally started to come out.  We thought maybe she wouldn't lose it because it took so long to finally come out.

 We are wondering if her hair will come back different this time!

 

 Over the Labor Day weekend Casey brought the kids up to visit.  It was very nice and we had a good time.  Allan and Andrew enjoyed hanging out and playing the Xbox 360.  The girls like playing with the Kindle.  Currently there are no working computers at home and they all are missing their screen time.

 

 Once Mia's hair started coming out it came out fast!  She has just a little ring around the front that doesn't seem to want to come out.  You can see that her face is a little puffy from all the fluid retention.

Update

We are a week out from Mia's transplant.  She is doing just as expected.  In other words, she is miserable:(  Her counts have dropped.  She has not needed any transfusions of red blood cells or platelets yet but probably will need some in the next day or two.  She is on 24 hour nausea medicine, but even still she says her tummy hurts all the time.  Her mouth is bleeding and she has some mucusitis.  She has been unable to eat for several days so she is on TPN, which is IV nutrition.  She likes to sit up in the chair and watch the construtcion of the new lobby.  I have not seen a smile in several days.  She just watches me with big eyes.  She hasn't lost any hair.

Jessica's Harvest and Mia's Transplant

We have had a couple of big days these last two days!  Yesterday we started at 7:30 am.  Jessica got her fifth and final neupogen shot.  Not a peep out of her!  Then she had an IV placed.  She was a little nervous about it but did great.

 

Here are Jessica and Mia on the morning of Jessica's Harvest.

 

Daddy and Jessica waiting to go back to have her pheresis catheter placed. 

 Vitals AGAIN!!!

They put the line in with sedation and an ulstrasound.  This is the Utah Jazz room. 

She got a little teary eyed when it was time for mom and dad to leave the room. 

In recovery.  She decided that daddy and mommy made good maids becasue we held her popsicle and her juice. 

 

On our way up to the fourth floor for the collection.  The nurses upstairs were all upset that we came up on our own.  Apparently she should have been brought up in a gurney because she is not supposed to bend her leg more than 90 degrees. There was a report made to make sure it never happens again!

At the end of a long day.  The collection was finally started about noon.  Six hours later they were done but we had to wait to make sure that enough cells were collected. 

WE got the call that 8.1 million cells were collected.  It was enough.  By the time Jessica was all unhooked and able to go home it was 10:30 pm.  Jessica was absolutely amazing.  WE will forever be grateful for her. 

Today was transplant day. 

Mia and her nurse Janet 

Singing "Happy BMT Day" 

The best thing about a birthday is presents! Both Mia and Jessica got presents.

 

Starting to get tired.

 

Here are the nurse and the collection tech checking all the numbers to be sure that theyhad the right cells.

Casey and Jessica left a little later.  Now the real fun begins as we wait to see when Mia will engraph and just how sick she gets.