Four Weeks Later Day 28

Labs today were a bit traumatic with the PICC line dressing change. A wigging, crying, and struggling Ian summs it up pretty well. No mother should have to go through that.

Clinic visit was short which is good. We had favorable reports from all the doctors. Ian's prograf level hasn't changed in about a week so that is good and one step closer to our journey home to charleston.

I did some PT exercises with Ian today--kicking a beach ball around. He loves it!

Livia is starting to think about rolling over and maybe trying to grasp at toys. Brett is bringing the next size of clothes for her this weekend when he comes as she definitely needs them. She was a bit fussy today.

Tomorrow is a trip to Brusters for a banana split--Grandma's treat! Yummy.

PDK Airport Day 27

Today is four weeks from when we got the call to come to Atlanta....not four weeks to date but four weeks to day. What a journey we have had since that call and we continue on our journey. Four weeks ago we were in the ATL area and almost to the hospital; racing to get there by 4pm a time which turned out not to be his surgery after all.

We had an outing today to the PDK airport. It is a small airport for private planes and was a perfect spot for airplanes and helicopter sightings. We were going to eat lunch at the cafe there as we were told that it has great food but it was closed when we went. The airport had a cute playarea for the kids and was home to the Georgia Angel Flight offices. This is the airport we would have landed at had our angel flight worked from charleston. I took pictures of Ian there. I've posted one of him at the playground area. Note the gloves on hands are not only because it is cold but because they are a germ barrier layer. And of course, we used germ-x after we were done.

We drove around to see buildings and look for a train. From our RMH suite we can hear them but not see them. For Ian, this is torture as he is a train enthusiast. We can find the tracks on our way to the hospital but haven't seen a train on them in quite some time.

Livia is really growing. She likes to sit under the baby einstein canopy/gym that was at one time Ian's. She loves to listen to the music and flashing lights. Ian is a great big brother and helps me tell her about the things she can see.

RMH had a charity meeting today so the parking lot was packed. We had leftover lunch stuff from that meeting for our own lunch today. Tonight dinner is being served by the Braves employees and we are planning to go to the family kitchen to be a part of that. We sit a our "own" table though.

Tomorrow is lab day and clinic. It will be four weeks from transplant date so I'm sure there will be lots to talk about in the next post.

Outing on Day 26

Ian and I went to labs today. It was about a 7 out of 10 in terms of the trauma meter. The nurse told me that all the kids go through this phase of not wanting to be there and at the "end" they march in like they were in a band they are so used to things.

After labs and some quiet time we had an outing. This outing consisted of Livia, Ian, Grandma and myself and we went to the Dollar Store--well only Livia and I got out of the car. We went to get a mop as our transplant suite does not have one and we are not allowed to share the general RMH mop in our transplant wing due to germs. I also purchased some swiffer cloths as the floors are all vinyl and the dust is very visable. Grandma has already mopped her room but is waiting until after the foot traffic (aka Ian) goes to bed.

When we got back from the outing, we purchased soda from the coca-cola machine down in the kitchen for $.25. Ian wanted Lemonade and I told him he wouldn't like it and he didn't belive me--he bought it and didn't drink any. I refrained from the "told you so" lecture and poured him a glass of chocolate milk which he loved.

Tomorrow we are going to a small airport nearby (PDK) and watching the planes as Ian loves seeing them from our window here. Hopefully the weather will cooperate.

Sunday Day 25

So I bought shiny Thomas the Train stickers for a reward mechanism for Ian taking his meds like a champ....one sticker for each med taken well. We'll see if it works. After 30 stickers, he gets a prize. I am very much crossing fingers on this one.

It rained most of the day here yesterday. We all went out for a brief walk in between rain showers. We were hoping to go a little farther but we didn't want to get wet--especially Ian getting wet. I went grocery shopping (at Kroger---what a treat) and got caught in one of the showers. I was worried the pancake mix box would become dough before my eyes.

I read Brett's blog daily as it is interesting to get his perspective on things. I find it interesting that we both commented on the lack of routine as being hard. I am a creature of structure and routine and it really has been rough having no set schedule. Ian at home knows that every Thursday is house cleaning day and that Monday is go to the happy face sticker store (aka wal-mart) for groceries, etc. I am trying to get us back into a "groove" with quiet time, etc. coming into play as it will help us all. Livia has no real schedule yet and I wouldn't have one for her really even if we were at home as she just barely turned 3 months.

There have been some definite funny/humorous/break the tenuous moments occurances and I'll share a few here....

*Speed limit of 13 mph around/at the Mason House--not 10 or even 15 but 13mph. What a random number. (The house was "on" emory property even so it wasn't like it was in the middle of no where.) I took a picture of one of several of the signs posted.

*Ian and Brett watching Luke Skywalker and Darth Vadar in a movie Ian calls "Star Burst"....so funny that I chuckled out loud and he corrected himself to Star Wars.

*My mother changing the sleep number of her bed to become more firm and turning on the air pump at midnight to do so not knowing the horrendous noise that would ensue.

*A manager at RMH asking/confirming that I was at least 18 to check in.

*The beeping alarm drill to get through the transplant wing door in 15 seconds.

Tomorrow is my first day going into labs with solo and I hope it goes well. Cross fingers.

Day 24

So Brett headed back to Charleston yesterday and my mom came back from my sisters to join me. I am glad she is here to help. It would be rough doing this solo with two children--very rough. We thought Brett had six weeks of short term disability to use but his work told him that he was going to need to switch to FMLA after using only about 2 weeks of disability. FMLA is great but there is no paycheck with it which we need very much right now. It was hard for me to let Brett go back but he will return on weekends.

Ian has improved slightly with his med taking--I am threatening to take away Thomas engines which works marvelously. His Aunt Amy and Uncle Ryan just sent three new engines yesterday which he is loving! I am going to get some Thomas stickers and set up a sticker chart and if that doesn't work, I'll mix some of the meds in yogurt. The prograf will always be separate just to make sure he has that med as it is so important.

We went for a walk today outside for just a little bit. Good physical therapy and the fresh air is welcome for everyone. There is no broom here in our suite, along with no toilet paper, paper towels, soap, etc. So between the kindness of my sister and the local target we have some of the things we need. The beds are sleep number beds which are like air mattresses on a box spring. There is a separate wing for transplant families and to enter the main house and kitchen area you have to swipe your key and then move through the door and close it in 15 seconds or an alarm goes off. It is hilarious to get our family lined up to hussle through it--I wish I could record it. We've made it through twice without setting off the alarm and the key to that is that someone has to carry Ian through the door.

I'm going to go to the store to get some groceries with Livia. Still not ready to take Ian out yet so my mom will watch him. Shopping carts are particularly germy.

The COTA campaign funds are such a blessing and a stress relief to me. Ian's meds for one month are$2000+. Thank you to all who helped us in any way--time, money, other resources--it is a big blessing. Ian's webpage for COTA can be found at www.cota.org under Ian H. The picture is a bit out of date.

Livia had her month day yesterday--the 9th. I took pictures of her with Ian here at the RMH. She has grown so much within the last month--she is close to rolling over now.

We'll see what Day 25 brings tomorrow.

Day 22 Wiped Out

So I'm calling it that I am offically tired. Tired of cleaning up body fluids. Tired of fighting Ian on meds. Tired from Livia not taking a pacifer. Tired from lack of sleep. Tired of not having a routine to help give our day some structure and therefore help my sanity.

Other than being tired things are OK. Ian's labs yesterday were "off" a bit likely due to his illness. When we first arrived they told us that we needed to be readmitted. Major bummer. They started IV fluid for Ian. He perked up during that process and started to eat some goldfish crackers given to him by the transplant coordinator. This convinced the transplant doctors to not readmit him. YESSSSS!! Prayers were answered. Ian had to go for labs again today (he normally would be only a MWF schedule). We also were told we may need to come in for fluid again but so far no phone call yet.

Ian got his staples out yesterday---eek! Trauma. After two being removed without meds, he finally was given something to help him relax a bit. The med makes him essentially drunk. Never having been drunk myself it was most funny to see Ian slurring his speech and not able to walk, etc. We had to wheel him down to the car in a wheelchair after clinic. I saved three staples only to loose them in the parking garage (they were in the top of my stroller and I collapsed it not remembering they were there). He has steri-strips on that will just fall off on their own at this point. He had a shower--of sorts--yesterday in celebration as well as special chickens--Mc'Ds chicken nuggets which we ate at Ronald's house :)

Brett hasn't gone back to Charleston yet--at this point it may be the weekend before he goes. We'll see.

Ian and Livia are both now up from naps....more on the next post.

Days 20 and 21 Tired

So now that we aren't in the hospital, I probably won't be updating this as frequently just because in part there won't be as much to tell.

Yesterday, Tuesday Day 20, was ok until dinner. It turned into the worst night with Ian in a long long long time. He barfed about 5 times and had potty accidents of the worst type two other times. We used up every bit of bedding in our suite and jammies (4 sets) that I had for Ian. There was a washer in the unit and I managed to get somethings washed after the second round of barf but drying them wasn't going to happen as unit was so noisy and right by our bed that we couldn't hear Ian if he was calling us. Brett had to do most of the clean up duty--thank you sweetie--as I was feeding Livy almost everytime. Brett got about 2 hours of sleep. We called the transplant team twice in the night wondering what we should do--we have clinic tomorrow so based on that, his symptoms, and the lack of fever we're to wait it out.

Brett was going to head back today to charleston....to pay bills, etc but that may be on hold at this point.

Ian is napping now no doubt tired rom his restless night. In fact everyone but me is sleeping now and I think I may join in.....