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Home today, going to hospital again tomorrow

posted Jun 17, 2013, 3:52 AM by FightingFor Mya

Well, I took Gia with me and went down to see Mya this past Thursday. She was soooo excited to see us! :) She was bouncing on the bed and wanted to play lots of games. It was great to see. I borrowed a friend's portable bassinet/cradle and had Gia in that. It worked out perfect! I left it down there because I think it will work out fantastic for when we go down to spell Ray.

All the nurses and doctors think Gia is the cutest!:) She did really well on our visit, so I think I will continue to bring her down with me.

Mya was at Day 0 on Thursday. No immune system whatsoever, her ANC was at 0. She was given the stem cell transplant around 10:30pm. They warned us that the material that the cells were frozen in could cause Mya to excrete a strong smell. They said that the smell usually goes away in a couple of days. She does have an odor from it, but it isn't bad. The nurses said that the older kids and adults smell ALOT worse. They think it will be gone by Sunday.

Yesterday (Friday), Mya still had a lot of energy. She wanted to go to the play room! So, after I got Gia settled (fed & sleeping!), we walked across the hallway. She played kitchen and played with the cars. The nurses & doctors had been surprised with the amount of energy she has; especially since her hemoglobin is only around 6.5 or so. Usually at that level, she is huddled in bed and barely watching tv!

Mya is off the liquid formula because she can't keep it down, but she is getting nutrition from a IV, so we are hopeful that her weight won't dip too much. She went into the hospital over 14 kilos; we are looking to keep her in the 13's if possible. Afer a week off the chemo, she should be able to go back to the liquid formula with no vomiting.

Ray tried to go to work yesterday, but was too tired to do it. He just did a 9 day stretch in the hospital. I told him that from now on, he won't be in so long and that he should be able to get into work more frequently.

I'm going down again tomorrow for Mya's birthday and plan on staying over into Monday and will go home Monday night. Hopefully, Ray will be able to make it to work on Monday.

Will let you know all about Mya's birthday in the next couple of days.