Tuesday, September 24, 2013

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!

Sunday, September 15, 2013

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.

Tuesday, September 10, 2013

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.

Tuesday, September 3, 2013

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.