Monday, October 20, 2008

Monday, October 20, 2008

Peter and I will try our best today to update you periodically! Thanks for being with us along this journey!

at 6:45am: Mattie was wheel chaired from his room to the pre-op area of the hospital. Linda, Peter, and I were with Mattie. Thankfully Linda was there to entertain and distract Mattie, so that Peter and I could answer questions posed by the nurses and the doctors. The pre-op area was a zoo. A real experience at 6 something in the morning. Peter and I had a conversation with the anestesiologist today regarding the PCA (post surgery pain control method) administration. The doctor told me that only Mattie could administer this medication to himself, and that Peter and I were prohibited to do this. I immediately began to take issue with this, because how could Mattie give himself medication if he is in so much pain and out of it? I basically said to her, that she couldn't be serious and that if she thinks other parents don't push this pain button for their children she is kidding herself. Then walked in Dr. Bob Henshaw who put the issue to bed with one word. The word was "yes," of course the parents could push the button. Below you will see a picture Linda took of us while we were in the pre-op area. Mattie was in great spirits! He is simply amazing!

at 8:00am: Peter got dressed up in his bunny suit and walked Mattie into the OR. They told us Mattie would need an hour of prep work, and would be heading into surgery at 9am.

at 11:28am: Linda just reported to us that Mattie is stable and is still in the process of having his bone removed. Meanwhile, Jenny (our art therapist) came up to Mattie's room, and we made some praying cranes out of origami. A wonderful distraction!

at 1:00pm: We got a call from Emily, our surgical liaison. She let us know that the tumor is out, the margins look good (the area between the diseased and non-diseased tissue), and the reconstruction is beginning. Mattie has lost some blood, but is stable.

at 2:00pm: Dr. Jeff Toretsky called me on my cell phone to let me know that he was in the surgery room observing Mattie's operation and that things were looking good. He talked to me about the margins and the size of the repiphysis and answered other questions I had. To my knowledge the shoulder portion of the reconstruction is done, and Bob is working on the elbow portion of the humerus.

at 2:46pm: A group just came up to get Mattie's bed, so things are progressing and he will come up in his own bed. Our nurse, Brenna is going to check on Mattie's status to see when we can meet him in the PACU. The surgery is still taking place, and probably will for at least another hour.

at 3:10pm: Dr. Bob Henshaw came to our room. The surgery is complete and Mattie is getting wrapped up and put into a sling. Bob was happy with the way the surgery went. He said there were no surprises. Mattie did have to get his axial nerve and the cap of the shoulder joint (so the prosthesis is now connected to the scapula) removed though, but in the grand scheme of things, it appears that Bob was able to remove all of the tumor. Bob will check on Mattie tomorrow, and plans for Mattie to be on the perineural (like an epidural) pain management system this entire week. We are awaiting Mattie's arrival or our trip down to the PACU. Overall, Bob was happy, and if Bob is happy so are we.

at 4:00pm: We were just visited by Debbi (our sedation nurse, aka our angel), Denise (our social worker), Catherine (our case manager), and Kathy (nurse practitioner). Kathy went down to the PACU to visit Mattie, and just called. Mattie is out of surgery, wrapped up, and coming out of sedation. He was alittle agitated, so they gave him some more medication. I spoke to Bob as well, who confirmed Mattie's status. Mattie has been the buzz of the hospital today, and we are awaiting his arrival. The debate about the PCA (pain management) administration continues. At the moment, they are now making the nurses responsible for the administration. We shall see how this works out. In the midst of all of this, we have had two visits from Jey. Jey has become our friend. He is a CT tech, and has gotten to know Mattie well. Jey checks with us each day we are in the hospital. Jey exemplifies what quality care is all about. Mattie has quite a following here!

Stay tuned as more details unfold.