Admission #4 I think

Well Taylor had to be admitted on the 18th because her counts were dropping really fast and she had a virus, the cellulitis, and come to find out- a bacteria in her blood.  Lasr I posted was that she got allergic to the antobiotic they gave her for the cellulitis.  She was admitted and the next day given something else.  Her blood culture came back positive for bacteria in her blood, so they want to make sure to get her on the right antibiotic.  It took them days to figure out what the bacteria was though (cultures take forever to grow and show info).  She was at the hospital with Daddy and just kept being whinney and crying for mommy.  She did not feel good and slept a lot and watched a lot of tv.  We got to skype here and there which helped.  She really just wanted to go home.  She would start feeling better after the antibiotic and start playing some and nibbling on food.  Then she would get tired again.  She did not eat much at all the entire stay there.  She threw up her NG tube the first night in the hospital and they left it out since she was coughing so much.

On the 19th they took her for a chest xray just to make sure her lungs were ok from the virus and everything.  All was good on that front.  On the 20th her counts were still dropping and her platelets were dropping some too.  That day I got to switch and go up to be with her.  She got to see her baby sister for a bit too, which made her happy.  She misses her.  She is still sleepy and not active and still having fever.  She is coughing extremely bad and has lots of diarrhea.  Her bottom is very sore and needs special treatment to help it heal.  On the 21st she had a negative culture for 2 days in a row.  That was good news, and finally found out that it was Alpha Strep bacteria.  But we did not know if they antibiotic was affective for it or not yet.  She still had the virus and high fever and everything else.  Her leg was much better and pretty much all healed.  On Monday the 22nd her counts were down to 260.  This thing was not going away.  We were tired and stressed and ready for this to be over.  Life was very hectic.  They began her on some meds to help stimulate her WBC production, called G-CSF.  She was still having all the same problems.  Now it was time for Daddy to switch with me again.  I drove home and then he drove up.  We were hoping it would only be a couple more days, but ended up being the rest of the week.

On the 23rd her counts were down to 140 but she had finally been fever free for 24 hrs!!!  About time!  On the 24th her counts were up to 190 but docs were really worried about her not eating.  She has had her NG tube out the whole stay and has not gotten her feedings and is not really eating.   They wanted to get that tube back in and see how she does with feedings, so she got it that night.  This day they replaced her needle in her port since it had been a while and it was getting loose.  They decided to stop the G-CSF since she was going up so they could see how she did.   But the next day her counts were down to 100!  So they started her back on the G-CSF.  They want to watch her and make sure she stays up and then she can go home if things look well.  Finally, on Friday the 26th she was up to 260 and tolerating feeds and they said she could go home.  The kids and I went up for a visit that morning to see her and so I could talk to the nurses about what we need to do at home.  They taught us how to give herr injections and her port IV meds at home and within a few hours she was home!  Whew, what a long crazy adventure!  A bit of stress relief automatically came.  By this time we were completely exhausted and stressed and tired and whatever.  I had begged my mom the day before to come down to be with us to give us some help and a break.  She was able to come Fri night and we were so happy.

First night home she threw up a couple hours into feed.  So we had to slow it way down and slowly increase over the next couple days.  She did well.  Saturday was my bday and I was so happy to have my whole family home with me!  The nurse came on Sun to take her counts and they were great, up to 4390!  Things were going well.  We were able to stop the injections.  She was still on her port meds, which I was able to do well.   The next day we realized her tape was coming off her port access.  So we told the nurses and they said it was a problem and it needed to be sealed and by a trained person.  So we called home health but didn't hear back till that evening when I called again.  She said that the retaping I did was fine for now and she would come in the morning.  Mon night she also threw up a couple hours into her feed.  So we cleaned her up and set it back up at a little lower pace, she did fine the rest of the night.  So, Tues the nurse came and looked at the port and said she would just retape it as well and that we should just take it off after her meds that day and it could heal until she got her new one that was due in the morning at clinic.  So, we did that and it worked out well.  I think I have accrued enough nursing hours over these past 6 months, lol.  Wed she was great she was active at clinic and the nurses were happy to see her back to herself.  She got to go outside and play and we had a nice day.