Taking Meds - Taking Time

We thought Oceana was better Wednesday as her fever leveled off and the gram-positive cocci had not reappeared in any other blood draws since the positive result Monday morning. Thankfully, the antibiotic did its job! Wednesday night brought more fever though, enough for the day clinic’s staff to decide to postpone the scheduled lumbar puncture for Thursday. Oceana was delighted at this news. She really dreads these procedures. Two spinal taps postponed in one week!

Unfortunately, Oceana is less than thrilled to take the necessary meds, as minimal as they are. She has decided that she doesn't need Tylenol anymore and since this is considered a comfort drug, the nursing staff has agreed not to force this one. Of course, when enduring a fever of 39.6 C°, the nurses aren't pleased with Oceana's choices. No, she must take Vitamin K, since this is considered to play a big part in helping to coagulate the blood. Oceana has had bloody noses this week that were in part a direct result of low platelets. Being hemophobic, Oceana does not do well with these. Actually, Dad doesn't either but he knows how important it is to just focus on "making it stop." Vitamin K is dissolved into water and given orally. Apparently, it doesn't taste good, as swallowing the orangy liquid triggers instant vomiting. Alas, child, you must take the medicine. It can’t keep taking an hour anymore. As we attempt to finish this blog entry the update is that finally she took her all her doses of “K”, whew!

The other unwanted med is Bactrim. It is necessary for preventing pneumonia. Originally, liquid Bactrim was the order. Eventually, the taste made her vomit. Then we tried broken tablets mixed in applesauce. That ended with the same result. Now we are trying crushed tablets into capsules but can't find capsules small enough as she is afraid to gag. Help? I will search surgical supply stores to look for smaller capsules. I hope that we can find a solution as it is very difficult to get Oceana to cooperate. She is tired of taking meds, "why can't it just go through the IV?" Oceana wishes she could do so by having Dad take the medicine and the "touching" dad in order to receive the med. It is just not possible, so sorry Oceana.

Make-A-Wish foundation CHOP volunteers stopped by yesterday to interview Oceana. Well, anyone that knows Oceana knows what she asked for! Of course, meeting the band Green Day! Her backup was a surprise though. If Green Day does not come through, she would like to meet Tim Burton.

So far, no more fevers, here’s for a “restful” weekend with pleasant plans for some Skype-ing.