So, we are on our way home. She still had about 30ml out of the drain in he back so we left it in and I'll take it out on Saturday. Avery is very self conscious about people seeing the drain.
It's really hard to update this on an iPhone! We are headed to Omaha today and then on to Denver tomorrow. Avery has 2 birthday parties to make it to this weekend.
The people at the RMcD house were really nice. The director and the house director were great. Avery loved Laurie, the house director and Laurie was great with Avery. Gave her little jobs and also homework! A loved it all. We are anxious to head back next spring/summer for the revision, or at least to stay at the house!
Chat later!
Thursday, November 17, 2011
Tuesday, November 15, 2011
Avery;s drainage from the drain in her back put out 30ml in 24 hrs. We texted Dr. Siebert tonight and he said he would take out the drain tomorrow. We asked him if he was OK with us hitting the road once he pulled the drain via text. We didn't hear back in about 15 minutes so we texted back and told him if he wanted us to stay, we could and immediately we heard back from him saying he'll take the drain out Thursday to hopefully avoid any probelms. While we absolutely want to do what is best for Avery but it is kind of a bummer that we don't get to leave tomorrow.
Don't know what we are doing tomorrow. Maybe get the A-meister a hair cut and pick up some birthday gifts for the two birthday parties Avery was invited to this weekend.
KU basketball starts in a couple minutes.
Don't know what we are doing tomorrow. Maybe get the A-meister a hair cut and pick up some birthday gifts for the two birthday parties Avery was invited to this weekend.
KU basketball starts in a couple minutes.
oh yeah!
On Sunday we also went to a magic show for kids on campus. The girls laughed and giggled! It was so much fun watching them together. We also made a target run to get hangers, kitchen scissors and a griddle as gifts for the house, bc we had no hangers when we got here, we needed a griddle for pancakes and grilled cheese and we also needed scissors. We got some silly looks but hey, we discovered a need!
The people who work here at the RMcD house are so nice. This community seems to be so generous. I wonder if it's like this in Denver. Avery has gotten so many toys and today she helped the House director sort through old games. There is a little girl who is 2 whose brother is at the childrens hospital that hangs out here at the house. Avery really likes to play with her. She looks just like one of my friend's 2 year old.
The people who work here at the RMcD house are so nice. This community seems to be so generous. I wonder if it's like this in Denver. Avery has gotten so many toys and today she helped the House director sort through old games. There is a little girl who is 2 whose brother is at the childrens hospital that hangs out here at the house. Avery really likes to play with her. She looks just like one of my friend's 2 year old.
Tuesday
Busy busy weekend. We went out to dinner Saturday night with my uncle, Rob and his wife Jeanne who drove over from Jackson, WI which is north of Milwaukee. It was great to see them and Avery just adores them! Plus, Paige and my mom haven't seen them since April, so that was nice too. We went to a nice little Italian restaurant. The food was yummy. I have a funny story to tell but you have to be careful what you say to the girls b/c they may get very embaassed. The girls needed to go to the restroom and it was a small restaurant and there was the 2 of them so I sent them on their own. About 5 minutes later we hear SCREAMING from the bathroom. The whole restaurant heard it and another couple got up and ran over at the same time Greg and I did. I had a vision of something really bad that happened to Avery's surgical site, blood everywhere, large hematoma, something. When we got back there, a woman who worked there opened the door. Both girls were in tears and hysterical because they couldn't get the door open and they thought they were going to be locked in the restroom forever. The door wasn't locked, they just didn't turn it far enuf to get it open. Imagine a clock face, door closed handle at 9 o'clock, to open it, the handle had to got to about 5 o'clock. Big hugs solved all and miraculously, the server brought over pizza dough for them to play with.
Sunday we had breakfast at IHOP and said farewell to Rob and Jeanne. Then, we went the Capital b/c the girls really wanted to see it and go on the tour. After the tour, (Avery adopted the nice gal giving the tour) we went to a restaurant called Ella's Diner. They have a carousel in the warm months but that is closed now. The atmosphere is very kid oriented. After dinner, we took Buggy and Paige to the airport. There were tears and it was hard to say goodbye to the Paigey-poo. Avery fell asleep at 730 that night.
Monday we hung around the house. Greg and I both got a work out in and then we went to Avery's follow up appt with Dr. Siebert. He was running way behind so we waited an hr in the waiting room. But, as luck would have it, a woman came up to us and introduced herself. She asked if Avery had PRS and had the free-flap microvascular surgery. She told us she had the surgery about 2 years ago. She is 35 years old and noticed changes in her face at age 7 and progression stopped at age 15. I do have to say, she looks pretty darn good! She is having a revision tomorrow with Dr. Siebert. She comes to WI from Israel! It took us about 1.5 hrs to get all the bolsters and sutures out. There was lots of screaming and negotiating. "Just a minute", "I want to look again", "I want to choose". OMG! I told her that Dr. Siebert was nicer than me as I was ready to papoose her! I should've given her some Ativan! Why didn't I think of that yesterday?!?! She did not however, get the drain out of her back. Still draining too much. So we are still in Madison. I am going to text him the 24hr output tonight at about 6 and he will let us know if she gets it removed Wed or Thurs. Hopefully Wed so we can get back in time for a birthday party on Friday but we'll do whatever he thinks is best.
We went to dinner at a fancy pants restaurant right across from the Capital last night. Avery had her best adult like behavior. We happened to be sitting right next to a few surgeons. Greg and I surmise that they were transplant surgeons, recruiting. They spoke of hearts, livers, kidneys and a transplant service line. I felt like I was at work!!
We plan to go to the Children's museum today and I don't know our plans for tonight. Avery is digging not having all the sutures in and there is no more syrup stuck on the one by her mouth.
Chat later!
Sunday we had breakfast at IHOP and said farewell to Rob and Jeanne. Then, we went the Capital b/c the girls really wanted to see it and go on the tour. After the tour, (Avery adopted the nice gal giving the tour) we went to a restaurant called Ella's Diner. They have a carousel in the warm months but that is closed now. The atmosphere is very kid oriented. After dinner, we took Buggy and Paige to the airport. There were tears and it was hard to say goodbye to the Paigey-poo. Avery fell asleep at 730 that night.
Monday we hung around the house. Greg and I both got a work out in and then we went to Avery's follow up appt with Dr. Siebert. He was running way behind so we waited an hr in the waiting room. But, as luck would have it, a woman came up to us and introduced herself. She asked if Avery had PRS and had the free-flap microvascular surgery. She told us she had the surgery about 2 years ago. She is 35 years old and noticed changes in her face at age 7 and progression stopped at age 15. I do have to say, she looks pretty darn good! She is having a revision tomorrow with Dr. Siebert. She comes to WI from Israel! It took us about 1.5 hrs to get all the bolsters and sutures out. There was lots of screaming and negotiating. "Just a minute", "I want to look again", "I want to choose". OMG! I told her that Dr. Siebert was nicer than me as I was ready to papoose her! I should've given her some Ativan! Why didn't I think of that yesterday?!?! She did not however, get the drain out of her back. Still draining too much. So we are still in Madison. I am going to text him the 24hr output tonight at about 6 and he will let us know if she gets it removed Wed or Thurs. Hopefully Wed so we can get back in time for a birthday party on Friday but we'll do whatever he thinks is best.
We went to dinner at a fancy pants restaurant right across from the Capital last night. Avery had her best adult like behavior. We happened to be sitting right next to a few surgeons. Greg and I surmise that they were transplant surgeons, recruiting. They spoke of hearts, livers, kidneys and a transplant service line. I felt like I was at work!!
We plan to go to the Children's museum today and I don't know our plans for tonight. Avery is digging not having all the sutures in and there is no more syrup stuck on the one by her mouth.
Chat later!
Saturday, November 12, 2011
Saturday
Hello! Sorry, yesterday was very busy with the discharge and Paige and Buggy coming to town.
They landed a little early but we got them picked up and back to the RMcD house. We hung around and Avery showed Paige around the house. We made an outing to the State Capitol building. We thought everyone could learn a little. After driving around trying to find a close parking spot so Avery wouldn't walk in the cold. All the close spots were only one hour parking and our tour of the Capital would take longer than one hour. Greg ultimately dropped us off close to the capital and then he parked the car. Buggy, Paige, Avery and I waited about 5 minutes for Greg and about 2 minutes after Greg got there, the fire alarm went off and we had to evacaute! So, we got to see the rotunda of the Wisconsin State Capital Building.
After that excursion, we took Buggy and Paige to the hospital to show them where Avery stayed. We saw Meagan the Child Life Specialist and Avery gave her a big hug. Paige and Buggy saw the floor where Avery stayed but no rooms b/c all the rooms were full! Paige also got to see the Gift shop.
We went out to dinner at the Great Dane Brewery and I don't even remember the last time the girls got along like they did yesterday!
Today we chilled in the morning and the girls played in the playroom and art room. Eventually we all got ready and went to the Vilas Zoo. It's a free Zoo here in Madison. It's smaller than the Denver zoo but quite nice. We saw a polar bear, grizzley bear, a buffalo and a badger. They had several indoor exhibits which I guess you must need if you're in Wisconsin!!! Lots of people asked Avery today what she had on her face and this made her very uncomfortable and sad. :( Overall, we had fun though!
We are going out to dinner with my uncle who came into Madison from Jackson, WI which is outside of Milwaukee. Avery LOVES Uncle Rob!!
They landed a little early but we got them picked up and back to the RMcD house. We hung around and Avery showed Paige around the house. We made an outing to the State Capitol building. We thought everyone could learn a little. After driving around trying to find a close parking spot so Avery wouldn't walk in the cold. All the close spots were only one hour parking and our tour of the Capital would take longer than one hour. Greg ultimately dropped us off close to the capital and then he parked the car. Buggy, Paige, Avery and I waited about 5 minutes for Greg and about 2 minutes after Greg got there, the fire alarm went off and we had to evacaute! So, we got to see the rotunda of the Wisconsin State Capital Building.
After that excursion, we took Buggy and Paige to the hospital to show them where Avery stayed. We saw Meagan the Child Life Specialist and Avery gave her a big hug. Paige and Buggy saw the floor where Avery stayed but no rooms b/c all the rooms were full! Paige also got to see the Gift shop.
We went out to dinner at the Great Dane Brewery and I don't even remember the last time the girls got along like they did yesterday!
Today we chilled in the morning and the girls played in the playroom and art room. Eventually we all got ready and went to the Vilas Zoo. It's a free Zoo here in Madison. It's smaller than the Denver zoo but quite nice. We saw a polar bear, grizzley bear, a buffalo and a badger. They had several indoor exhibits which I guess you must need if you're in Wisconsin!!! Lots of people asked Avery today what she had on her face and this made her very uncomfortable and sad. :( Overall, we had fun though!
We are going out to dinner with my uncle who came into Madison from Jackson, WI which is outside of Milwaukee. Avery LOVES Uncle Rob!!
Thursday, November 10, 2011
Thursday - poat op day 3
Wow! What a great day! Avery was awake and playful and laughing and smiling! Her left eye opened more today. She took another shower and got dressed in her own clothes. Her IV didn't work anymore so it came out. We walked down to the cafeteria for lunch and then again for ice cream. There is a place called Babcock Hall (I'm pretty sure) that makes its own ice cream here at UW and they sell it 24hrs a day at the hospital. A few people recommended it including my pen pal so we had to go check it out.
They were still doing every 2 hr pulse checks and every 4 hrs vitals. Dr. Siebert came to see us after his case today and chatted with us for 30-45 minutes! What a great guy! Her eye is a little cloudy which he says is swelling and it will go away for sure by Monday. She has a tiny skin tear from tape that is being covered with triple antibiotic ointment, her steristrips along her back incision are intact and the drain continues to drain and will hopefully come out Monday. The drainage is still relatively minimal and is less bloody. A is being discharged tomorrow!
Paige and my mom come up tomorrow and their plane lands around 130p I think. Avery is super excited to see her sister. Hopefully the weather is a little nicer this weekend when they are in town so we can wander around the city a bit.
Not a lot to report really. She is doing very well and is pretty much back to herself today. She still doesn't like to see herself but she isn't having the reaction of crying and running away when she does. Greg is staying at the hospital tonight and I get to sleep in the tempurpedic bed at the RMcD house. Here's to a great night's sleep!
They were still doing every 2 hr pulse checks and every 4 hrs vitals. Dr. Siebert came to see us after his case today and chatted with us for 30-45 minutes! What a great guy! Her eye is a little cloudy which he says is swelling and it will go away for sure by Monday. She has a tiny skin tear from tape that is being covered with triple antibiotic ointment, her steristrips along her back incision are intact and the drain continues to drain and will hopefully come out Monday. The drainage is still relatively minimal and is less bloody. A is being discharged tomorrow!
Paige and my mom come up tomorrow and their plane lands around 130p I think. Avery is super excited to see her sister. Hopefully the weather is a little nicer this weekend when they are in town so we can wander around the city a bit.
Not a lot to report really. She is doing very well and is pretty much back to herself today. She still doesn't like to see herself but she isn't having the reaction of crying and running away when she does. Greg is staying at the hospital tonight and I get to sleep in the tempurpedic bed at the RMcD house. Here's to a great night's sleep!
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