September 29, Day +222

Here we are once again in the hospital. 222 days post transplant and we are in the room adjacent to our original room. Rafi has been running some very high fevers the past few days. Last night was 104.2, the night before, 104.8, ugh. We will be here in the hospital for at least 2 more nights, perhaps more. The nice thing is that We have found the source of the fevers for a change. It seems every couple of weeks Rafi spikes a fever but instead of constantly being admitted to the hospital, we’ve been able to give either IV or oral antibiotics at home that tend to do the trick. Not this time. On Monday Rafi spiked a 102.6 fever and after speaking with the clinic, we decided it best to do her bath and bandage change, and then go into the ER to get some blood cultures taken. So we did, and in the ER, after they flushed her lines, Rafi got a 104.8 fever. After some celebrex and tylenol, her fever went down so we were sent home. The next morning however she spiked another fever and it was high so into the hospital we went.

Everyone figured that there was an infection of some sort in her central line. When you flush it with saline and then spike a high fever that is a sign that all is not right. Sure enough, the cultures came back positive as a staph infection so here we are for a few days. Now we are on several IV antibiotics and for 12 hours a day, Rafi has ethanol in her central line to try and kill off the staph infection. Let’s keep our fingers crossed. The other option is to send Rafi into the OR to have the line removed and have a new one placed. We really don’t want to do that, so we are hoping the combination of ethanol, vanco, and ceftaz does the trick.

On Tuesday, when Rafi was speaking with her aunt, Emily, Emily asked if she had spent the night in the hospital. Rafi responded, “No, I was in the eerra.” Too funny.

Prior to all this happening, one of our nurses, Lyndsay, who Rafi calls, Stinker, arranged for a friend of hers to bring over their two little girls for a play date. Jackie really wants to integrate Rafi back into playing with children her own age because one of the largest pitfalls of this past year has been Rafi’s inability to have time with kids her own age. Rafi has always been a little shy and we were hoping that she might just really like playing with kids her own age now that she has come out of her shell to a large degree. On the day of the play date the two very cute little sisters came in and just hit it off with Rafi. It was very exciting for us to see Rafi actually interacting with kids her own age. We hope to be able to have some more time with that family. On another note, in a couple of weeks, we have some friends coming into town with their daughter, Lilllie Ann, who is Rafi’s age. Lillie Ann was part of the play group Rafi was involved with back at home. It will be great to see our friends and to watch Lillie Ann and Rafi create a mess out of our apartment.

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