One Day

We talked to the doctors this morning. They were going to let us go home on Tuesday ("WERE" being the key word in that sentence).

We have to change out the sticker over his triple line weekly. Today was the lucky day (not really). Sticker removal ranks in Jenson's top 3 of hospital things to hate. The adhesive sticker almost embeds itself in his skin after a week so each slight movement brings tears of pain as the nurse slowly pulls the sticker away. It takes over 5 minutes to get it off but it feels like 5 hours as he screams the whole time saying things like, "I not like this. You hurting me. Help me. What did I do?" like he must have done something wrong to be punished in this way. The torture of this removal is physical for him and emotional for me. At least we have 7 days before the next round.

He also got blood this morning. The plan was to give IvIG (immune booster) and platelets later today so we would be loaded up and ready to go. Then a surprise happened.

Jenson spiked a fever while getting IvIG which can happen, but anytime an immuno-compromised transplant kid with a port or a line spikes a fever it means blood cultures, fungal cultures, and automatic antibiotics through each line (4 lines in Jenson's case) while you wait for the results. The cultures grow out over 48 hrs and no news is what you hope to see.

So we wait and now best case for going home is Wednesday. I'd rather stay another day now than leave and come right back.

What is another day in the scheme of this 4 month long hospital visit? Has it really been 4 months? Yes, shockingly we were admitted prior to Thanksgiving. If someone would have told me what the last 4 months would hold, I would have told them they were crazy.

Another reminder to take things one day at a time because we don't know what the future holds.

Kristin