Wednesday, January 14, 2009
Getting Out of PICU
Devree Is So Loved!!!
Our game plan for today is to get Devree out of PICU. The intensive care unit is pretty noisy with people coming and going. There are also quite a few clicks and beeps that happen repeatedly.
Devree told us that she was sleepy, but it was too noisy to get any rest. However, we are creative people and discovered that you can go to sleep just fine in PICU if you have your IPOD in your ears.
The other big thing ahead of us is telling Devree the news. She had a lot of sleepy and groggy feelings leftover from the anesthesia. It just made sense to hold off until today. Devree’s goals for yesterday were to get the tubes and equipment off of her so that she could sleep properly. She did a great job. She was swallowing and eating before the doctors expected.
Part of our little Devree’s objective was to get those dogone leg balloons off. They fill with air every so often to massage her legs. This keeps blood clots from forming. One of the side effects is that they are sticky against your skin, and they inflate and deflate just as you are falling asleep. Little Miss Devree definitely has an opinion about them. She got them off by showing the nurse that she could move her legs all by herself (You show them Devree!!!).
Goal number two for today is to actually talk to Devree about what is going on. We don’t know exactly how she will feel, but when Shana and I think how it was for us, we just pray that we can know the right things to say. She is a tough cookie though. Keep praying for her.
That was Todd. He tends to get wordy and a little business like. We are doing quite well. Oh Happy Day that Devree spoke and can move and is amazing the doctors. She wants to do everything right now and is anxious as she says "I don't like being sick!" I feel better because now all of those Residents, and other stuff can see that Devree is not just a piece of meat. She is a wonderful girl who has her opinions and makes them known. It has been a wonderful staff but there were times when Todd didn't see that Devree was being treated not appropriately. As a mother I kept my tongue (AMAZING SINCE I AM SHANA AND I DON"T HOLD MY TONGUE VERY WELL!)and just kept talking to Devree and holding her hand, or rubbing her legs, kissing her forehead and let the staff know how amazing Devree is. I told them how she plays the flute and piano, and reads and buys her own books, and keeps writing her books. Of course she loves "Twilight" and loves the character Alice and that caught a lot of peoples attention because they have read Twilight too.
I think that Devree will handle the news well. Probably much better than her parents that were once again devastated. I feel like Miss Piggy on "Muppets in Space". Miss Piggy is trying to do her famous Karate chop and this other guy is beating her up. She first starts out confidently saying "Is that all you got?" Then she gets beat up some more. And she less confidently says "Is that all you got?" Then she gets beat up some more and slurringly asks "Iiiisssss thaaaaaa allll yoouuu gooooooooot?" We are waiting for the final words of her cancer and treatment plan. But we are confident that Devree will pull through.
I stepped out of the room so Devree could get up and have a bathroom break. While I was gone, Devers asked Shana what the doctors said about her tumor. Shana said that her response was, “So, that means I have to stay here longer?" (in the hospital not PICU). Her mom said, “Probably so”, and Devree said, “Ok”.
Getting up is a really exhausting thing for her to do right now. So Devree is sleeping. We welcome sleep for her. The rest helps her to recover, and is the most pleasant way to spend your time in PICU.
So this is Shana. I had to have a few tears reading all of your messages. Wow we feel loved and prayed over and cared about. No she wasn't on the Rexburg temple roll yet. I feel that all of your prayers have helped sustain Todd and I.
As Devree asked about her tumor, I told her softly and matter-of-factly that the doctors weren't able to get it all because it was wrapped around some vital nerves she needs. There was some more little tumors that they could see under the microscope but were unable to get them because they were far away from the surgery site. The tumor is cancerous. She digests this and she asks "Does this mean I have to stay in the hospital longer?" I told her "Probably". She says "Well maybe I will get that pixie haircut after all". And then she was feeling some pain in her surgery spot. She didn't have any pain medication all night. So I told her how important it was to ask for pain medication before it gets too bad because she needs to rest so her body can recover. She was so worried about talking to us and not listening to her ipod because she told us "That is just RUDE". I told her to go ahead and sleep because that is how her body and brain will recover. She is having a more restful day. We are still waiting for a bed to open up to move her upstairs.
1/14/2009 3:30 PM
We are up in the regular ward. Devree is at the end of a hall and shares her room with one little baby about 4 months old that has breathing problems. Devree has been sleeping and sleeping because her body is so wore out. She sleeps on her good ear so she doesn’t hear that much. One of the nurses said that anesthetized sleep is not that restful. So Devree is quite tired. She has been able to sleep a whole lot better up here on the third floor compared to the PICU.
Todd and I went for the Wednesday lunch concert held over in the Stanford Hospital. There was an accordion player that also sang with 2 violinists and one bass violin player that picked it and also played it with a bow. I told Todd that was the most romantic lunch he ever took me to. I felt like I was at a European café with old time lovely music.
The oncologist just came in to speak with us. They still don’t have news. But we talked about different scenarios. It sounds like the oncologist’s want to do a spinal tap and then they said 2-4 weeks to start treatment to let Devree heal a little better. So it sounds like radiation will probably be a big part of therapy. Which means we will come here as an outpatient everyday for 6 weeks straight. They might do chemo-therapy at the same time or they might start it after. They will put a place like a station next to her heart to take blood and to give her the chemotherapy. But at this time we don’t know.
1/14/2009 3:49 PM
I never knew you could be so happy watching someone sleep.
Devree has mentioned several times that her right side of her face tingles. Our neurosurgeon’s assistant came in to visit, and we shared that information with her. Her face lit up in response. We had to ask, “So it’s a good thing then?” She said, “Yes. This is indication that Devree’s nerves are beginning to heal in her face.”
Now we just need to get past this cancer thing.
1/14/2009 4:35 PM
Dr. Edwards just came by for a visit. The report that the right side of Devree’s face was tingling is of interest to him. He told us that it was a good sign, and then took off the bandage over the stitches.
We were told that Devree could take a shower and wash her hair tomorrow. If the recovery keeps going this well, we could be released to go home on Friday. There will be at least two weeks of recovery time before we can take any steps toward treating the cancer.