Well its been a while, and I know I haven't updated. I'm sorry but honestly it has been a very crazy week to say the least.
Monday the results came back the Emily was RSV positive. The only place that she could have gotten it would have been from either the clinic or the hospital because other than that she hasn't been around anyone that has RSV so its really bothersome that she got that. I knew Friday when we went in to have counts checked that she was sick, but they couldn't do anything until she had a fever. GAH. Since RSV is highly contagious and everyone on the 7th floor pretty much had it, nurses, doctors and child life people or volunteers had to come in with gowns and gloves on.
Emily also had to have a lot of blood checked while we were there to get a baseline for the stem cell harvest and to check for anything that was in her blood so they had a baseline.
We were at the hospital until Wednesday afternoon. Everything went well, had a few frustrations with nurses but we were able to get that straight thanks to talking to one of the other nurses. Emily also had a rough time staying there because all she wanted to do was go home and get some rest that was all she wanted. She didn't want to be there. I can't blame her, because her whole life has been uprooted as well as everyones in the family!
Tuesday she didn't run a fever all day, but they had her stay to give her the antibiotics and then for the next day when she needed to do the bone marrow aspiration. Her counts were still .1 and her hemoglobin was 6.8 so she had to have another transfusion this go round. I don't like these things at all. I wish she didn't have to have them at all.
I won't go into crazy detail but the next day was a busy and rough day for us all. Emily had to have her bone marrow aspiration and they allowed me to come into the room. I for reasons of WOW won't explain about it, but I will say it was probably something that I should have never stayed in the room for because it was just horrible. I couldn't believe that she had to endure that horrible pain and all she really got was a little bit of medicine for pain and anastasia. I cried watching it and wish seriously I had never stayed in there. Afterwards they gave her some tylenol and then the nurse said her Vitamin K levels were off. So, I talked to Dr. Godder and she explained that Vitamin K helps with your blood clotting and if the levels are off it can cause more bleeding. They noticed during the Bone marrow that she had a little more bleeding than she should have had. So they had to run an IV for Vitamin K, and she was ready and waiting for Pop to come and pick us up. She was sitting in the stroller waiting and she started to cough (so I thought) but it was dry heaving. She was complaining her stomach was hurting. So, she got out of the stroller and hugged the toilet. I felt so bad, she was in such pain on her back and was very sore and then she was getting sick! She did finally throw up, and all she wanted to do was to go to sleep. So, pop go there when she was going through that and then she laid down and took a little nap and then we gave her some zofran after the Vitamin K. But after that she was ready.
From the anastesia she got sick and her face was swollen. Get home Wednesday and Brianna was getting sick. So we were trying to keep the girls separated from getting sick. Jessie also came home Wednesday night, so it was so nice that we were all home together with each other and it was great to be with everyone. We left Wednesday with her white blood counts at .3.
Yesterday was Doug and mine's 4 year anniversary. We didn't really have any plans to do anything, but Doug got out of work earlier yesterday than normal, and the night before Brianna kept me up until 4 AM crying. She wasn't feeling good. When Doug got home yesterday he took her temp and she had a temp. So Doug took her to the doctor and she had a ear infection and same thing that Emily has. WHAT A PAIN IN THE BUTT. EEK. So, now we are trying really hard to keep the two away from each other so that they don't get sick. We are also keeping up the GCSF with Emily everyday at home to get her white blood counts back up so that she can have the stem cell harvest done. We did find out while in the hospital that her line wasn't strong enough to do the stem cell harvest, so she will have to have a line put in to get it done.
Its nice to be home, but prior to the next chemo round starting Emily has a lot of scans and harvesting that needs to be done. So next week is full of CT scans, MIBG and whole body scan, so we are a little stressed about the upcoming scans, but we are praying that we see a big difference.
I am writing this update here today, because we are at the clinic to have her counts checked. And oddly enough her counts for her white blood count came back as 11.5. OMG. That is higher than when we started out all of this, but they said it is normal with the GCFS. We are still waiting for the CD34 to come to see if she ready for the stem cell harvest.
Please continue to pray for Emily and all the other families who are going through this horrible mess. This has been a really stressful week and time and just a little much going on for us. We are just trying to take one day at a time and just make it through, but wow. This has been a trying time.
Thanks again for all of your wonderful messages, because they really mean a lot to us and we love to read them. We are going to hold off on the party at Diva's And Dudes because of Emily being sick and also Brianna, plus we are hoping to have a nice quiet weekend of rest and relaxation.
THANK YOU ALL FOR EVERYTHING!
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