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.