Monday, November 15, 2010

not home yet and reflux


November 15, 2010

Josie will not be coming home this week and actually not for several more weeks (we think).  The vomiting/refluxing is terribly worse and the only explanation is that the changing pressure in her head is messing with her central nervous system.  For example of how bad her reflux is, this morning between 8am-10am, she refluxed around 6-7 times.  She didn’t get tons out, but each time there was either saliva or stomach acid, not to mention it makes Josie miserable as she tries to get it out.  Then during the ten o’clock hour alone, she refluxed 4 times, plus gagged quite a bit.  Marc and I have been very concerned that they would send us home with her like this – since it is much worse than what we were dealing with in the summer.  We are starting to keep a running log of every time she throws up so that we have a better handle on how often it happens and how much she gets out each time.  We should have started a log earlier, but now have and it has already been helpful when we talked with the doctor. 

We did just talk with the doctor and he said that due to her increased vomiting, they don't see her going home right now.  This is good in many ways and yet it’s hard to stay here even longer.  We did voice our concerns about taking her home in this condition and they agreed that it would be more stressful and they can observe her condition more closely here.  There is a secondary rationale for keeping her here as well.  Since her blood counts have been staying even - not dipping down, and she is handling chemo so well, they would like to proceed earlier with the next round of treatment.  Instead of taking a week off, they will start the next cycle toward the end of this week, which means she would stay in the hospital anyway. 

Last night they took Josie for a CT scan because her head has started changing shape during position changes, such as when we hold her or move her in her bed.  She will get a fairly good-size "sink hole" toward the front of her head where the skull flap is missing and then it seems like fluid fills the back side of her head.  Change her position and her head goes back to "normal".   The CT results thankfully did not show anything dangerous or irregular going on inside.  The only difference is that some of the swelling has gone down around the edges of her head and that change in less fluid is most likely causing the shape changes. It’s similar to when someone loses quite a bit of weight and the first place you notice it is in their face because they have lost some of that puffiness/extra fluid.  Best analogy I could come up with to explain Josie’s head shape change! J

We hope and pray that she can come home soon, but we are also praying that a solution can be found to relieve Josie of this reflux, or at least lighten it up.  She is on several medications to help with nausea and even one that is suppose to help with inner-cranial pressure nausea, but so far not much has helped.    We just wait and see as they try to figure her out - each day seems to bring something new for Josie’s treatment. 

Keep praying...we serve a God who hears!
Marc & Darcia

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