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.