~ Day Four ~

We spent the night on the regular floor. The new room was small. We were in the "B Cluster". We shared with 3 other children and their parents. It was busy, some children were hurting~ some cried. The family across from us had their daughter (around 5) in for leg surgery but the parents were argueing amongst each other, the child was running & jumping on the bed. It made a very hard situation even harder. I was very happy when they were discharged. Timothy had not been around this sort of thing and was miserable. It was just very uncomfortable to be stuck in the middle. We kept the curtain pulled a lot.

Timmy still had this odd "stare" and we were getting a little uneasy about it. He seemed worse to me, than he was the day before but everyone said he was coming along wonderfully.

During the night Timmy refused to sleep in the crib. He slept in the chair with me~ the chair pulled out to a cot and was tight against the window on one side & the crib on the other, but we snuggled together there. He fussed often during the night and was just not at all comfortable. We had tried taking him off the codien & using a milder drug, but he seemed too uncomfortable & he was put back on codeine. (I woried about codeine as our oldest daughter had an alergic reaction to it and had seized at three years old) They assured us that he was NOT alergic to the drug.

Several times today, Timothy had this odd stare. He seems more "drugged". We called it the "Jack Nicholson look". At different times during the night & several times in the morning he would begin to fuss & squirm~ (an "odd" fuss/growel) I knew he was in pain like no pain I had seen my child in... they said it was normal.

I was holding him early in the day & he was facing me on my lap, at one point his head went back slightly & his eyes rolled back. I was concerned & told the nurse but she seemed unconcerned. (They seemed very under-staffed for the amount of children) She assured me it was NOT a seizure & went on to help the next child. As each new nurse came in, I told them about it & they said it had to be "documented" by one of them.... but they were never there long enough to see this.

While giving Timmy a sponge bath early that afternoon, he arched his back, groaned and SIEZED! I knew it was a siezure. I yelled for help & nobody went for a nurse. They all sat there (including a resident giving the parent across from us discharge information!) looking at me like I was crazy! Even my husband thought I was overreacting as HE hadn't seen it happen yet. He got a nurse who once again said "It has to be documented"... and then she left.

As we got up to PICU, Brenda met us between the double doors with big hugs & support. (Her little Makensie had HLHS & was in the "bed" next to Timmy's through the whole ordeal) I will never forget her, or her beautiful baby... nor will I ever forget Dianna who also came running back to PICU with two guardian angel pins & put them on my shoulder... we just met & yet they cared so much!

Timmy was out for the night & we were laying in the waiting area when to our surprise... Jeanine & her son Triston came in!!! I couldn't believe it! They had caught the last flight from Alaska and had just got in. It was such a relief to have some family there. It had been hard to weather this, with no one else around~ and she has always been so special. Oh the relief~ it's hard to put into words... we had someone to talk with, someone that was OURS to be with us. Auntie helped so much. She would sit with Timmy so that we could get a rest. Just her being there was such a wonderful thing. We were no longer ALONE.