Mr. Cheeks Goes to the Hospital: Doc O

Thursday, August 16, 2012

Working hard

Alan slept through the night except a brief-wake up at 3 am to push the button and take a few sips of water. Today was going to be the last day of the minocycline lock. It's not working but as a precaution, we asked it be continued until the port is removed, probably Monday.

We headed downstairs to Rehabilitation (where we see the therapy dogs on Saturdays) to work with the OT. Alan sat in a chair for the first time since entering hospital and played with his trains and glow tubes. We're working on getting him to reach farther and higher.

After OT we went out to The Fountain, where we met up with Miss Becky, Tyler and his Grandma who came to visit before heading home. Tyler blew bubbles for Alan and they played with the gigantic Sponge Bob Magna-Doodle they brought for him! When we went upstairs we saw that the Candelighters were holding a Summer Surprise event in the family room. There was lunch for the families and presents for the kids. Then it was time for PT - Alan walked out the room to get to his wheelchair set out in the hall. He worked hard so we took him for another walk and ate french fries by the fountain.

Doc O from ICU who has been consulting on our case came to talk about getting him off the PCA. We will probably start today with Fentanyl patches 12 mcg/hr while bumping his PCA morphine rate to 1.2-1.3/hr. We hope this puts us on the road to getting off the IV morphine.

Working hard for OT

Throwing pennies

Tyler blowing bubbles for Alan

Playing with Candlelighters gift

Working hard for AJ

Two stickers for standing and walking

Surrounded by fun

Wednesday, August 15, 2012

Bye bye hair

Alan was up since 3:30 am since they were working on him to get his lines going. He really enjoyed watching Mary Poppins and A Bug's Life with Miss Denise and Mister Russ - looks like we'll need to get some new movies. They had hoped Mary Poppins would bore him and he'd fall asleep but he thought it was fun! Denise took Beads of Courage sheets back home to work on tabulating all the beads he's earned since we started this journey back in 2009.

We do not have results from echocardiogram yet. It may take a few days since it needs to be read by a pediatric cardiologist at TCH since it is a very rare specialty and MDA does not have one. Alan's nurse did a blood draw from all lines for cultures. We had to put TPA in white lumen again to get it going.

We went to play room to paint but ended up playing with Play Doh instead. Miss Sheila brought him brand new rolling pins to play with while Miss Krishanda brought out all the cool Play Doh gadgets. Doc O and Riza from ICU who are working on his pain management came by and played too!

He has been very irritated today since his hair has been falling into his eyes. We went to the barber for patients on the 6th floor to get his hair cut. He was annoyed to have his walk cut short but enjoyed the haircut. He kept calling out "It tickles!" and earned a lollipop. Then it was time to go back to his room to get the nephrostomy and G-tube dressings changed. After changing his diaper and the bed he fell asleep. It was a long productive day for him.

Holly, Doc HJ's PA came by to discuss port replacement options. We can't replace the port while he is infected so they are thinking about putting in a Broviac catheter, a type of central venous catheter that can be removed easily. We will look at putting in another port after the infection is cleared and he is finished the second cycle of Ifos. Holly said that they do do not stock double lumen ports in Alan's size, which surprised us since Alan's first port was a double lumen. Pedi Surg at MDA stopped using them because they had so many problems. That may explain why Alan's port was replaced with a single lumen port back in August 2009. Nice to finally have an explanation. Holly will consult with Doc H2 to see how much access he thinks Alan will need over the next month. If his double lumen PICC is enough, they may not even put another line in for now.