So, the good news is we have WiFi here at the RMH. The not so great news is it is a bit fussy-if not being used for awile it disconnects. So while Mikaela and I were setting up her IV antibiotics, my last blog was posted before I was quite finished. At least it was pretty much all about our Belly Dancing event. :)
Friday, Nov. 19th started off bright and early with an echocardiogram at 8:15. While we were there I received a text from Christie asking if it would be ok if she came for a visit-absolutely!! :) Mikaela was not feeling well -sleepy and dizzy. After the echo, we stopped for bfast in the CHP cafeteria then back to the RMH were Mikaela fell asleep. And slept and slept and slept. Christie arrived-we visited until Mikaela woke up really not feeling well. I called the dr and he sent us to the ER. They started meropenem (IV antibiotics), thinking it could be another case of cholangitis. And after several hours and going over her medications about a million times (ok not really-but it felt like it) we were admitted back to 7b. As crazy as it sounds, that place is felling pretty comfortable. We know most of the nurses and staff and they are getting to know us too. It's kind of weird that when we are in VT or out in the world needing a liver/kidney transplant is odd but when here on 7b everyone has a transplant, is waiting for a transplant or is in the hospital due to something related to transplant. At least we know we are not the only ones going through this and everyone has their own unique story. Since, it was pretty late, Christie headed to the RMH to spend the night. It was a great surprise in the morning to have a nice cup of hot tea and breakfast delivered! Early afternoon Christie had to head back as her kiddos were coming home from college. Libby arrived for a visit mid-afternoon from DC. It was great to see her since we hadn't seen her since last Christmas. We did some quiet activities (puzzle, coloring, word search, reading of random silly facts nobody really needs to know...like did you know - a turtle can breathe out of its bottom? and a fish has a memory that only lasts 3 secs?) After dinner some more of the same. Libby decided to spend the night so we settled in to watch a movie (Bedtime Stories).
Mom, Gram, Nichole and the kiddos brought Luke up early afternoon on Sunday. It was so good to see him!!! Libby stayed with Mikaela while I went to the parking garage to help get Luke's things and take them to our room in the RMH. We all met over in Mikaela's room, went do to the cafeteria while we were there, Mikaela didn't look well and was "freezing" so we went back up to her room, got her tucked in and asked the nurse to take her temp-yep it was rising from 5pm to 7pm it went from 99 to 102.4. They started her on Vancomycin (another antibiotic). Libby headed back to DC about 4:30. Mom, Nichole and the crew about 5:30. By the middle of the night, the fever seemed to be down and never did come back -thank goodness. If she has a fever, she can't get her transplant so we really, really don't like to see a fever.
We had a few quiet days. Luke loved having a xbox in the room(1st thing he noticed-he and Mikaela did some racing but mostly he raced and bought fancy cars that he souped up and asked what I thought he should do or what accessories he should buy-I went ahead and told him even though I really don't know much about cars. And who cares what's under the hood, I mean you can't even see that. I think he was mostly just being nice. :) Eventhough we had planned to go to the zoo and science center during Luke's visit, it was nice hanging out, laughing, talking and having Luke run to the cafeteria to get things for us-he is lightening fast! Only one small problem, he came back with a Twix or KitKat everytime! He even hid a couple in his shoe at one point!! He didn't want me to notice but, I did when he put on his shoes to head to the RMH.
Thanksgiving was different but, we tried to make the best of it. When I woke up both kids were still sleeping and I was feeling very thankful to have them and have them both with me. I was missing Mikey and the dog very much too but I was good with our decision for them to stay in VT knowing if we are here for Chirtmas, they will be with us then. I was thinking it is weird not to be chopping, sauting, stuffing or mixing something up for later. I thought about all the Thanksgivings in TX when Gram and Grandpa would come down to visit for a few months from Iowa. I thought about going out to Linda's for a big dinner and walk around the neighborhood afterwords with the boys in the stroller or on bikes. I thought about mom's cranberry salad and how this has always been her favorite holiday and how one year Mikey, Luke (1st Thanksgiving) and I went to MA to spend the long weekend with her and gram (the 1st Thanksgiving w/out Grandpa) and mom cooked enough yummy food to feed a sm. army instead of the 5 of us (mom invited another travel nurse to have dinner with us) and a 4mo old. I thought about the few Thanksgivings Nichole and I have spent together since getting married-one she and Steve came to VT and we went to Mom's in Newport. Then to Burlington to watch Mikaela dance as a reindeer in the Nutcracker. Another time was when the twins were born (Nov.16) and we stayed through Thanksgiving. And when they turned one and we stayed through Thanksgiving again! I thought about all the years having Thanksgiving on Wilson Hill with all of my in-laws and listening to all of the cousins running around and playing and watching them grow into wonderful young people. I thought about how the Macy's Day Parade was always the sound of Thanksgiving morning and football was the sound of the afternoon. I thought about the "kids table" and how the faces around it change but the thought of moving up to the "grown-up" table appeals to all generations. I thought about how the last few years we have spent Thanksgiving in VT on a smaller scale and how one of the best ever was the year we moved into our house and it snowed like crazy so the four of spent HOURS outside exploring our new backyard and building snow forts then having a fire in the fireplace after a yummy dinner. WOW-being in a quiet hospital room on a holiday really gives one lots of time to reflect. I am happy to look back and have so many wonderful memories for all stages of my life-I really am blessed to be surrounded and loved by so many special people. Back to Thanksgiving present 2010...Mom came up to spend a few days with us. It was nice to have her here. Luke and I went to the RMH to get some "thanksgiving dinner". After we ate, we went to get to go boxes for mom and Mikaela but, it was GONE. I guess everyone was happy to see the traditional Thanksgiving fixins. Luke stayed at the RMH to get rid of a headache and I headed back to deliver the bad news to Mikaela and Mom. We decided to head to the cafeteria to see if they were still serving Tday meals. They had run out of turkey so chicken would have to do but, they still had most of the traditional sides. Although not the same as a home cooked tday dinner, it worked. There was talk that Mikaela could possible be discharged Friday but, if not maybe she could get a day pass so we could go to lunch and get a bit of fresh air. Black Friday not the perfect day for an outing but, hey at this point if the docs said ok, Mikaela was game.
Well Friday's labs came back with a bit of a surprise---Mikaela's white blood cell count was VERY low and she couldn't even leave her room without wearing a mask so, going out of the hospital was no longer an option. Ok- Bummer but, we have done this before so, now let's make a plan for some things to do for the day.
Saturday everything was pretty much back to normal for Mikaela. The doctor was trying to get eveything set for at home antibiotics which was a bit more of challenge on a holiday weekend. She did say it would be ok for Mikaela to go out if she felt up to it and still wanted to---WOO HOO! Cheesecake Factory and Target...here we come! Christie was on her way from MD. She was going to get Luke and take him back to VT so mom could stay an extra week. I couldn't believe our week was up. It went so fast. We asked Christie to meet us at the CF and then being way stuffed, we headed for Target. We bought a couple of games (to help pass the time)and Luke got an iTunes card. When we got back to the hospital, we played an intense game of CLUE. ok so it really wasn't too intese but being a murder mystry game I was thinking I should be dramatic-Anyway, since Luke and Christie were plannning on heading out pretty early we called it a night about 10:30. I went with Luke and Christie to the RMH to get Luke packed up. He stayed with us in Mikaela's room. We had him in the lobby at 6am sharp on Sunday to hit the road. Later that day, mom took me to the grocery store to get a few things. We had heard that Mikaela was going to be discharged on Monday unless something went really crazy but, everything seemed to be staying stable. Mom headed for Nichole's about 7:30. Mikaela and I played some more clue, watched a bit of tv and hit the hay.
Monday, Nov. 29
Mikaela did once again get discharged to the RMH. :) The first event was CLEANING-top to bottom everything got scrubbed down and bleched. It smelled great and sparkled too. Crazy to say but we actually got into tiding up the place. It felt like such a "normal" thing to be doing. And, of course with the two of us and the space being a bit tiny, it took practically no time. Then the tutor came for about a half an hour. Around 5pm a visiting nurse came to show us how to use the IV pump (I wish they were all the same but, hey now I can use several different kinds) and get us started with the home IV antibiotics. We are doing a 21 day course so, we should be done the middle of next week.
Tuesday, Nov. 30
FUN DAY with Nichole. Mom stayed with the Vennare munchkins so Nichole could hang out with us for the whole day. After tutoring at 11:00, we headed for lunch and then some shopping at the Ross Park Mall. You can really forget how big malls are in the city. Both Mikaela and Nichole LOVE to shop or at least look. I like to go with a plan and specific mission and get out! After they mentioned they should ditch me,(GASP) well I just followed along and enjoyed watching Mikaela try on some things and looking in some stores we don't have. Mikaela was having fun and that was the most important thing. She even found a couple of shirts-and on sale too! After we had done all the damage we had the energy for, we headed back to the RMH and Nichole headed home.
Wednesday, Dec 1st- WHAT it is really already DECEMBER!!!! Where has the year gone? Pretty mellow day. M wasn't feeling too great. She had some trouble sleeping and so she slept until 2:00pm! I was getting a bit nervous-thinking maybe her ammonia was going up but tried not to worry too much. She woke up still not feeling the best but seemed ok. She had her session with the tutor. I was glad she was getting labs done Thursday.
Thursday, Dec. 2
Labs, appt with Dr. S. Numbers looked pretty good. (ammonia 62, bilirubin up a bit, creatinine 2.7)Continue doing what we are doing-call if temp, bleeding, acting strange. Follow up labs on Monday, Scope on Tuesday. Nephrology appt on the 14th.
Talked with Christie and Jean (Christie picked Jean up in NY on Tuesday)-everything going well in VT. Melisa had delivered a very yummy meal. Luke had had a couple of friends over after school, they ate most of the brownies Melisa brought, the friends had gone home and Luke was sleeping. Mikey was thinking about taking Shelbie for a run. Sounds pretty normal. :)
We had dinner and then found High School Musical on the Disney Channel so we were watching that but had to go upstairs for tutoring from 9-9:30.
Happy 16th birthday to Kelly!
Friday, Dec. 3
Mom and Gram were going to come down for a visit but Gram needs to have her cough checked out to make sure it's not pneumonia. And she may have pink eye-we DON'T want that. Poor Gram. Itchy eyes, coughing and away from home. Well, while I have been typing away, Mikaela has been working on a puzzle. Her tutor just came. They went upstairs and M wants me to meet them up there so I guess I should wrap this up. I will post some pics tonight or in the morning. Her tummy is really causing discomfort today-hope it settles down. Mikaela wanted to go for a walk and get some fresh air today but I'm not sure she is feeling up to it.
Hope everyone has a wonderful weekend. I know it is a crazy time of year. Try and find a moment or two to relax and enjoy! We miss you all. XOXO
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