Day 6-8 (Consolidation)

It's been like a roller coaster here the last few days, so I haven't given Mommy much time to write for me.

I spiked a fever overnight Monday morning and they started me on another antibiotic called Gentamicin, so I was in solitary confinement (in my room) again on Monday. Boy, was I busy, though... I did lots of art projects (mixed media - paint, crayons, colored pencils, glue and noodles, buttons, etc.), built with blocks, worked puzzles, and played with the physical therapist and speech therapist. I also had fun dancing to some Laurie Berkner songs with Mommy (see the video below).

On Tuesday morning I rode to the clinic in my new green wagon (thanks, LaName!); I started fussing as soon as I saw where we were going, though. Aunt Renee was with us for a little while, but she didn't come into the OR with me. Deciding to stay in my wagon, I figured they couldn't hurt me too much. Little did I know that they would get me to go to sleep with that white stuff in my PICC line again. I suppose someone caught my head from flopping, because I luckily didn't have a bump on it when I woke up.

I got a new blanket (pink this time) over my PICC line, but my arm was pretty sore as I came out of the anesthesia. I heard the recovery room nurses say something about sending the BioPatch to be cultured. That is the doughnut-shaped circle that goes around my PICC line that has time release antimicrobial stuff in it. I guess there was some dried blood and greenish (ewwww!) discharge on it. They were also concerned about how tight the Coban wrap was around my PICC line site, because the skin under the Tegaderm (the huge plastic sticky sheet that seals in all of the important parts of my PICC line) was really red and irritated.

I'm guessing my lumbar puncture went well. All I know is that my back was a little sore, and I kept wanting to rub it. Unfortunately, the site was under my nightgown and diaper, so it was out of my reach. When we returned to the room, I tried to eat my Cheerios with milk, but several nurses were thwarting my best efforts at eating. Daddy asked them to go away for a little while so that I could eat (I hadn't eaten since the night before, and it was almost 11am), and they did.

Since we hadn't heard where my counts were and if the isolation orders had been lifted, we stayed in the room most of the day. I did more arts and crafts (I'm becoming quite the artiste), and I played with lots of different toys. The little tattoos of fishies and ladybugs that Mommy put on my fingernails were really cool, too! Beth, the music therapist intern, came by in the afternoon, and I really enjoyed her singing. I pretended to make soup when she gave me a pot with lid and spoon to bang, and singing brown bear, brown bear, what do you see? with her pictures was super fun. Nanna B. came to spend the night with me so that Mommy and Daddy could stay at our house with Lily. I'm kind of jealous (have I mentioned how much I miss our home?!), but I guess Lily misses Mommy and Daddy and our house, too; and I really like spending time with my Nanna B. I am named after her, you know...

No fever overnight, so the doctors pulled my Gentamicin and Fluconazole. Dr. Hummel told Mommy that he could only remove (or DC) one antibiotic each 24 hours, but if all went well, he would take away another one tomorrow. I also found out that we would get a four-hour "pass" to leave the hospital on Thanksgiving. Yippeee! Mommy and Nanna B. looked so excited, and they told me that I would get to go to Nanna B. and Poppa's to see Lily, Stanley, Charlie, Clyde, Mason, Avery, Aunt Renee, and Uncle Jon. It sounded good to me. I just had to make sure I didn't get a fever or have any hiccups...

Well, the hiccups happened today. Lily and I played dress up and then we went down to physical therapy with Gretchen and occupational therapy with Jill for about an hour. We had a great time... I pushed a doll baby in a stroller, colored on the chalkboard, climbed up and down some stairs, and even rode a bike. Lily enjoyed shooting hoops and swinging, while knocking down a tower of soft blocks. Both Lily and I got cranky as therapy ended, but it was nap time after all. We headed back to the room, and Lily left with Nanna B. as I was yelling at Mommy about something or another ( I can't remember why right now... there were so many things I was mad about today).

Mommy tried to get me down for a nap, but I didn't want to sleep. I didn't want to eat either, and I surely didn't want to have anyone take my vitals. I said I wanted to play in the play room, but when we went there, I kept telling Mommy, "NO!" She made lots of side comments that I needed a nap, but I knew something else was going on. I think the word many people used to describe me today was "irritable." Hmmm... whatever! I just felt terrible, and I didn't want anyone to touch me. I was getting a fever all day, so I screamed at Mommy, hit her, and I wouldn't eat or sleep. I even turned down birthday cake! When the nurse told Mommy that I had a fever, Mommy's eyes teared up. I think she realized that we weren't going to get to leave the hospital for Thanksgiving, and we surely weren't going to be discharged from the hospital this weekend, as she had hoped.

They took some blood to be cultured and gave me a dose of Tylenol around 7pm. The doctor also started me on AmBisome, rather than putting me back on Gentamicin and/or Fluconazole. The Tylenol didn't really work, so they gave me another (bigger) dose at 11:30pm. Dr. Baker came in and said they would be doing another CT scan in the morning. I guess I'll need some sleep...

1 comment:

Hillary said...

Hello Trisha, Becca, & family,

You are the first people on my mind this morning as I am waking up on Thanksgiving. I know that this is an extremely difficult time for your family and I want you to know how much I'm thinking of you and sending supportive thoughts and prayers. I hope that you are able to be surrounded by loved ones today to help you get through this challenging day. Love, Hillary (LMS)