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.



Showing Miss Denise and Mr Russ how to play


Working the Play Doh


Snip!


Squish! into the Cars mold. It's Lightening McQueen!


Distracted by Fruit Ninja while his hair is cut


Post-haircut with his lollipop


Sleepy after a long, busy day