Discharged

Hello everyone, It's Bobbi here.

We have been discharged from the hospital. It happened yesterday afternoon. To say we were scared to leave is an understatement. I need to make it clear that, in this case, discharge doesn't mean she's better. It only means she's stable. They really encourage parents to do a lot of the care giving as long as the patient is stable. They do this for a few reasons one being the mental benefits of not having to lay around in a boring, stale hospital room day in and day out. The other that it frees up a bed and staff for other not so stable kids. There are many things that can happen and if they do we will be immediately re admitted. For example, if Scarlett starts running a fever, then it's straight back in. We were also only released to the Ronald McDonald house as it is so close and we can return on a moments notice.

They sent us home with an IV stand and a huge bag full of medicines, syringes, tubes, medical tape, and more. Lance and I are now playing Doctor and it's quite scary. We really don't know what were doing but we are trying our hardest. She has 8 oral meds every day. It's very hard to get them down the hatch. Scarlett is quite sick as a result of all the medicine's along with the Chemo Therapy. She is throwing up a lot as well as having diarrhea. We are changing diapers and sheets and doing laundry like mad men. This morning she barfed up her feeding tube which was a very unpleasant experience for all involved.

Being discharged means 2-3 "Clinic" visits a week....or potentially more or less depending on her levels and how stable she is. She will always go in on Thursdays to receive her IV Chemo. Also on certain days she will have bone marrow aspirate tests or spinal tap tests scheduled. Today for example we went into clinic and her levels were quite bad. She needed a blood transfusion. We were there all day. However, once they stabilized her we got to come home, and eat dinner together and we get to go to bed together. We really think the change of scenery and the more home like atmosphere is really going to help Scarlett out Mentally and hopefully physically. We are hoping that by being in a more relaxed setting she will start using her legs more as well as eating more. The hospital is so drab and depressing....

Also, because the Chemotherapy really knocks out her immune system we have to keep her quite isolated from germs. She is what they call neutrophenic (please excuse the spelling) but is means that her body can't fight off even the simplest of viruses and they could become potentially fatal. That means no busy shopping malls or grocery stores. It means trying to keep her from coming in contact with people in general. It's ok though, as her condition seems to change on a dime...one minute she could be happy and the next she could be barfing and crying. Going out shopping might not be the safest/best idea right now.

 We are allowed to go for drives and walks outside. She really loves being outside of the hospital even though we are limited as to what we can do it's so much more than we have been able to do this far. We are grateful for that and that we can be together every night.

We are really hoping to see and improvement in her appetite very soon. Some of the steroids she's on are supposed to really kick start her eating. They say anywhere between day 7-14 it should start. We are on day 11...so any moment now.

Things are changing every hour and we are just rolling with whatever comes at us next.  Lance and I were saying today how the hours just go by so quickly. One thing to the next and then the days done.

Thank you again for all your love and support.