Monday, June 15, 2009

Home away from home

We are back. At the Chilton (Children's Hospital) that is. Room 439 this time. We were discharged Friday morning and had a good time at home until Xavian started vomiting and not eating. Saturday night Matt and I were giving Xavian his meds and starting his nightly feeds when he threw all his meds up. His feeding tube started coming up too. We decided we couldn't wait until our clinic visit on Monday to get him checked out. Matt said he would take Xavian to the ER while I stayed with Dante because he was already asleep. We called the on call nurse to let her know (we had already talked to her earlier that day). She said she would call the ER to let them know we were on our way. Well, when Matt got there she had not called yet. In fact, as far as we know, she never called. She had a good 30 minutes to call. ARRRGGG! That really made me mad. I still have to talk to our nurse about that. Matt said that the doctors in the ER said that his glucose was low and we did the right thing bringing him in because at the rate he was vomiting he would have been dehydrated by Monday. They also said that he looked good for having gone through 3.5 rounds of chemo. Once they started the bolus (fluid) he had a surge of energy. They also decreased his feeds to 5mL/hour throughout the whole day.

I got to the hospital Sunday afternoon to trade out with Matt and could tell Xavian was feeling much better. He was moving all around and talking. He even spent a lot of time with the nurses at the nurses station. They wore him out because he took a good nap.

This morning the doctors decided to increase his feeds to 10mL/hr. They will continue to increase the feeds and decrease his iv fluids as long as he tolerates the feed. He is also getting blood as I type because his hematocrit was low. They also had to add potassium to his iv fluids because that was low as well. His platelets are low but he is not getting some today. Maybe tomorrow. He has not had fever so that's good. But, the doctors seem to think that he will because his white count is sooooo low. So, looks like we will be here for awhile. I am praying that it won't take as long for his white count to come back up so we can go back home.

All this back and forth from home to hospital is so taxing on my sanity, sleep, health and every other aspect of life in general. I really need a whole week to catch up on sleep but will take a day (if I could get it). We still don't know what the future holds for Xavian when it comes to more treatments or not. As soon as we know something we will update. I tend to update the CaringBridge site more because it's easier to get on and just post a little update. You can follow it here...

Please pray for...

1. Rest and Peace for us all

2. Xavian's white counts to rise

3. No fever

4. Xavian's complete healing

5. Other families fighting this stupid illness (cancer) together

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