AUGUST 26, 2009
Today started out like any of our other days here, with us getting up at 6:30 and getting around to go to the hospital. This time Logan had to have blood drawn and an MRI done. When we got there we headed up to the fourth floor where they accessed his port. He really didn't like it and cried quite a bit. I felt really bad for him and I hoped that it didn't hurt him too much. They decided to keep the port in so that the nurses downstairs could use it to sedate him.
Deb came into the room while they were accessing it and we caught up with her. It was really good to see her again and I was jealous that she was so skinny, like always. Of course, nowadays, most people are skinnier than I am. She gave us somewhat shocking news, she is leaving the transplant ward of the hospital and is moving to another area. So from now on we will be working with Andre, at least after this visit. I will really miss her, I love Deb, she works so hard for what's best for Logan. But at least in her place we get Andre, he's a nice guy.
After talking for a little while it was time to go down for his MRI. We got down there, and after waiting for about an hour for a room they sedated him. It took two doses of the medication to get him to go under. And then, when he finally did, his eyes were still open, it was extremely creepy so I closed them for him. They took him to get started while Dave and I stayed behind to quick eat our lunches. For some reason we can have pop in the MRI room, but we can't have food.
I had to use the restroom and as I was walking down the hall I saw a familiar face, it was Rachel's mom. She told me that they were still there and they had moved back into the house. It seems that Rachel has GVH of the gut. The poor little thing didn't look much like herself, but she still smiled at people just like her old self. She was going to have a feeding tube put in. While we were in the hospital with her she was able to have her feeding tube taken out. So that was really sad. Her mother said that she also couldn't walk and had to use a walker, they had just started showing her how to use one last Monday. I said goodbye and went to the bathroom. When I got back to Dave I was nearly in tears and was close to a panic attack. I'm so afraid that something is going to happen to that little girl. GVH can be so dangerous. Her mother gave me her website but when I tried it, it didn't work.
Just like last time Logan woke up partway through the MRI and started to completely freak out. I quick ran to his side on the other side of the nurse and started talking to him, but that didn't seem to do a bit of good. So, they gave him some more sedation and he finally went back under. He stayed under for the rest of the procedure.
When he woke up he was a little cranky and he was very wobbly. He looked like a bobble head doll. We gave him some of Dave's french fries and some Sprite and then he was off to sleep. We had decided to go visit 5200 that day so while he was sleeping we took him up there to see Laura.
The trip up there felt so familiar, like walking around in a house that you used to live in. The paintings on the glass windows had changed, but that was the only difference. As we walked down the hall to the doors I felt a feeling of joy and agony wash over me at the same time. I was joyful because my son was alive thanks to these people, and I was in agony because Alyssa wasn't. Part of me just wanted to turn around and go back to the hotel, but I really wanted to see Laura and I wanted her to be able to see Logan and how he looked. Logan was still asleep at this point.
When she saw him she couldn't believe how big he was. I gave her a hug and thanked her for taking such good care of him while he was there. We visited with her for a couple of minutes and then we left and went back to the hotel. Logan was still sleeping so we laid him on the bed.
AUGUST 25, 2009
On Monday we went in for some of Logan's tests. It stated off with him being weighed and measured and all of that good stuff. Then, after that he had to have x-rays done. He had to have them done on his chest, his spine, legs, feet, everything. We actually went to the x-ray place two different times to have all of them done.
Between the two Logan had another pulmonary function test done. It actually took a while for him to give a really good scream for the woman, I was surprised. He was being so good all day long though, he even did really well with the x-rays. I was allowed to stay in the room so that I could take pictures and he barely cried.
After the PFT it was time for his echocardiogram. When Dad and I were there when he had it done he hated it and cried. When Dave and I were there he did really well, so it was a toss up on how he was going to do that day. It turned out that he did really well. The woman turned on some Elmo and he pretty much just laid there and watched.
After the echo he had the rest of his x-rays. This time he wasn't happy. Dave went in with him while I stayed out in the waiting area. I could hear him screaming out in the hallway. There was a man out there who was waiting for his wife and their son and he said "Boy, he is not happy" and I said "No, definitely not."
We got out of the hospital early and since none of us slept well the night before we all laid down on the bed and took a nap. After that we grabbed some dinner and relaxed for the rest of the night.
Logan did not sleep well on Monday night at all. He woke up a couple of times and then one of the times that I picked him up he had soaked through his diaper. I, praying, grabbed another diaper and changed him. He had wet through the bed so instead of laying him back in a wet spot I put him in bed with David and I. He slept through the rest of the night.
AUGUST 24, 2009
Saturday wasn't the best day for us. We woke up and decided to first, after we had breakfast, to go to the Plantation and visit there. We didn't know, but there were guided tours every hour and we were there at about twenty to twelve. We were on the road and there was a cop stopped stopping people for some reason, this made Dave very nervous. I don't know why, but cops always make Dave nervous, as if he's really done something wrong. For some reason the cop was stopped looking at liceses. We handed him our's and he asked us if we were there visiting. We kind of explained why we were there and he told us "God Bless." I thought that was really nice, though we still don't know why he was stopping people.
Logan was sleeping and since we would be walking around the plantation Dave decided to carry him. The sky was looking kind of dark and so instead of waiting for the next tour we just decided to look around on our own. That was a mistake. There were many buildings on the property, and even while using the map, it was difficult to tell which one of them was which. We were never quite sure what we were looking at. The only things that we were sure of were the main house and the cemetary. It was nice to look at everything, and we had a map and a paper that told information on each building, but we just didn't know which one was which. We just got back to the car when it started to pour. And I mean pour.
We had just bought a GPS and so we had it navigate us to the Planetarium. Without a mistake it got us there. We went inside and we found out that the exhibits were free to look at, but the shows cost money. There was a free science show around the time that we were there so we decided to go to that. It was a live science show. Until the demonstration we walked around the building which was a huge pain because we had to keep going in and up stairs which meant that Dave had to keep carrying Logan and the stroller up them. The exhibits weren't all that interesting and I was hoping to find the room with the domed ceilings that are in Planetariums. We couldn't find it. That really bummed me out because that was what I had really wanted to see.
We went to see the show and the guy was very entertaining. He worked with different powders, one which turned ice water into a gel. He said that this one was what was used in diapers. He also showed examples of gravity and centrifical force by swinging a glass of ice water on a board around his head. But then Logan started getting upset and so we had to leave.
Feeling kind of defeated we grabbed some food and headed back to the hotel.
AUGUST 22, 2009
Yesterday we had a pretty good day traveling to North Carolina. Our first flight left at 1:30 and so we were at the airport by noon. We packed quite heavily and it was difficult to manuver all of the luggage through the terminal. Then there was the problem that Logan was being a Daddy's boy and didn't want anything to do with me or being in the stroller. So we ended up putting the carseat which we needed to bring with us in the stroller and Dave carried Logan. Security took forever and by the time we got through they were boarding for our flight. Just like on the last couple of trips, Logan and I fell asleep pretty much as soon as the plane took off.
We arrived in Detroit about an hour later and we had a couple of hour layover until our next flight and it was time to get something to eat and so we rode on the tram that they have there. We ended up eating at a Quiznos which ended up costing way too much for two subs. While we were eating they called my name over the loudspeaker and when I went to the desk they had my purse; I had left it in the bathroom while I was changing Logan. Thank God someone nice picked it up and brought it to a desk. Everything was in there too. After a couple of hours of hanging around the terminal it was time to board our second plane. On my way into the plane, down the long walk I tripped on one of the wheels of the stroller and fell, scraping up my left knee and injuring my pride a lot more. Logan and I fell asleep on that flight too and we didn't arrive in N.C. until about 7:30. We grabbed our luggage and headed off to the Enterprise bus. When we got to Enterprise Dave wasn't sure if that was where he booked the car or if it was with Budget. While he was figuring that out I went back to the airport because we had forgotten the carseat at the airport luggage claim. When I got back Dave had figured out that we didn't reserve with Enterprise, but with Budget. Thankfully it was right next door, so we just walked over.
By the time we went to the market for Logan's milk, cereal and snacks for us, and dinner for us and arrived at the hotel to check in it was 9:00. After we ate we went into the pool which Logan absolutely loved. At first he started with just splashing his hand, but by the time we got out he was splashing his hands and kicking his feet. He would laugh and giggle while he played in our arms. He really liked it when Dave had ahold of him and I chased them around the pool, he thought that was a fun game. After everything was done we finally got back to our room and we had him asleep by midnight. He didn't sleep very well through the night and he woke up about three times, and then he had us up at 6:30
Well, I should get going, we are going to go visit a historical plantation and a planetarium today.
AUGUST 18
Ever since his release from his latest hospital trip Logan has been doing very well. In fact, on the 10th of this month Logan took his first steps. I was right there and it was very exciting to see! He has been doing it more and more lately. Most of the time he side steps, but he will go forward and backward sometimes too. He has really discovered the toilets and now likes to play in them which is absolutely disgusting, so, needless to say, we keep the bathroom doors closed all the time now. I hate it when I find him playing in the toilets, it makes me want to get sick it is so gross.
We had a small party the other day to celebrate the one year anniversary of his transplant. I meant for it to be a party without gifts, but I kind of forgot to tell people that, so he received some very nice presents. He reiceived things like a toy truck, some pegs and a hammer, and even an adorable little chair for him to set in. The pegs and hammer were a gift from his Grandma and Grandpa and while they are really nice, he really likes to use the hammer. This wouldn't be a problem except that he doesn't use the hammer on the pegs, he uses it on us. Dave's Mom, Carley, came and stayed the weekend with us and we had a very nice time. She lives almost two hours away and we don't get to see her often, so it was nice to be able to spend the time with her. Especially since I haven't seen her since before we left for N.C. last summer. Dave's Dad and Stepmother were also able to make it to the party which is nice because they live in Indiana and we don't get a chance to see them very often either. We are probably going to go up for a day to their cottage here in a couple of weeks so that we can spend a day with them.
Logan has a doctor's appointment tomorrow and he will have his operation site looked at from where they put his port in. If everything looks well than he will be able to start taking baths again. If that's the case than tomorrow night he will have the first bath that he has had in a year. I'm really excited to see him be able to play in the water. His Grandpa Howard is also extremely ready to bring Logan into their pool.
We leave this weekend for Duke for Logan's one year check-up. It's hard to believe that it's been a year since he had his transplant. So much has happened. I am so glad that it is all over though and life is almost completely back to normal. I wouldn't ever want to live through this past year again! We are going to vacation on the two weekends while we are down there since, due to all of our medical issues, Dave doesn't have any more vacation time left. In Durham there are some historic sites that we can visit, including a plantation and a graveyard. In one of the neighboring cities there is also a planetarium, so we might go there. We are also planning on going to the beach and spending part of a day at the ocean. I'm really excited about that, I have only ever been to the ocean once and it was about 12 years ago. I'm terrified of sharks though, so I am also a little bit nervous. But we could really use the vacation, and it will be nice to spend the time together as a family doing something other than sitting around the house or sitting in a hospital room together.
We had a very good thing happen to our family the other day, my cousin Jason and Jamie had a little boy, Jackson James Howard Ramsey. This is one of Grandma Sharon and Grandpa Howard's grandchildren. I haven't seen him yet, but from what I've heard he is absolutely beautiful. We really needed this good occasion, losing my uncle has been very hard on our family.
Logan has been sleeping in his crib with me in my bedroom for the last couple of weeks, so that is really exciting, we just hope that he continues with the cycle. We are worried that taking this trip and putting him into a hotel bed instead of a crib is going to mess it all up though. You see the hotel only has two cribs and they are first come first served and I don't think we can haul a pack-and-play along with all of the rest of our luggage. Hopefully though this won't mess with the progress that he's made and he will come back using his crib just like he did before.
Well, that is pretty much all that is going on right now. With the economy I haven't been able to find a job yet, but I'm going to keep looking and hopefully something will come up. Oh, the book is almost finished, I just finished my third draft of it and it won't be long now. I'm really excited, a contact of mine said her organization Save the Cord foundation, might be able to help me get it published, so hopefully they will be able to help. I'm really excited about the possibity of it being published! Well, that's pretty much everything. Talk to everyone later. Love you all.
FRIDAY, AUGUST 7
To say that life around here has been boring would be a lie. We went to the zoo the other day with my brother and sister in law with their kids Tyler and Emma. Logan had been really really tired that day and slept through the entire day. We didn't think much of it until he started breathing strange. He was almost acting like he had the hiccups, but he didn't have them, his body was just hitching like that. So, we decided to call the doctor who told us to get him to the ER right away. He was still lethargic when we arrived there. Soon after we were initially seen they were already talking about admitting him for the night.
So, after about five hours in the ER (I just love how quick they are) they got Logan up to a room. They had been trying to get an IV started, but they couldn't access a vein. We had just had Logan's central line taken out on Thursday and so they couldn't use that, so they decided to put in a temporary central line in his thigh that went into his femoral vein. It took the doctor an ultrasound machine before he could finally find the vein and place the line. His skin under the tape was all bloody and it was kind of nauseating to look at. They then used this to hook him up to anti-virals, saline, and anit-biotics. He was still so tired. We were actually able to get a regular hospital bed and he just slept on my chest. He would wake up in the middle of the night and sit up a little bit, just to later collapse on my chest.
The next morning he woke up and he acted just fine, like the day before hadn't happened. He was happy and babbling, playing in the bed, and jabbering to Dave and I. When the doctors came in I thought that they were going to tell us that he would be able to go home that day, but they told us that he wouldn't be able to go home until Wednesday. They had to run tests to see if he had a virus, and I'm guessing that they wanted to keep an eye on him so if he started acting like he did before.
It was quite a boring four days. On the second day we had switched out the bed for a crib and so Logan was able to play in that. One good thing about the crib is that, using the bars he was able to stand up and walk around it, this made him very happy. His Grandma Sharon and Grandpa Howard came to visit and Grandpa Howard taught him how to high five, so that is now his favorite new thing to do. Mom and Dad also came to visit that day too.
On Tuesday Logan finally received what we had been asking for forever now, a port. This is kind of like a central line that goes underneath the skin. We have been asking for this because it gives them easy access to his blood just like a central line, but since it's under the skin he can go into the water with it. We just have to wait the ten day period after it's put in to make sure that it's completely healed.
The surgery itself was really quick. We went into a medium sized room where they gave him the sedation with us right there and then we left. We were given a pager that would tell us when the procedure was over. We went to the cafeteria to get something to eat while Mom and Dad waited in the waiting room. When we got back I quickly flipped through a magazine and by the time I was done they were paging us telling us that the surgery was done. It's technically an outpatient procedure, so it's quite simple for the doctor's to do. Logan was initally awake after the surgery and was happy and kicking, but once Dave picked him up he went to sleep and after that he slept for a couple of hours.
We got out today afternoon. When we got home Logan took a couple hour nap and he was quite upset when he woke up. He hated when I had to change his pants and wouldn't even let me get his jeans back on. After a while he perked up and started playing around the house. He is currently on Dave's lap.
Well, we got some good news. Brett's mom, the little boy who passed away a few months ago, is pregnant! So that is something that is very happy for that family.
Not much else is going on right now. I am looking for a second shift, part time job, but so far that hasn't panned out, but we'll see. So, until later, bye everyone.
