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.....

Moved to Ronald McDonald House Day 19

We got the word to be discharged from Dr Heffron this AM around 10:20. Ian was on a walk with Grandma at the time of the news. Brett and I immediately started packing up things in the room. When Ian and Grandma came back, Grandma and I left to go check out from the Mason House and check into the Ronald McDonald house. We changed locations for a couple of reasons...Ronald McDonald has separate transplant suites in a transplant wing. The suites have 2 rooms, washer/dryer, kitchen, etc. and were more suited to our anticipated month stay here locally. The suite here at Ronald McDonald house is cheaper than our single room at the Mason House. It is also closer to the hospital. We couldn't get a suite at the RM house until after transplant to explain why we didn't just come here straight from the beginning. A regular room at the RM house is only yours for the night--you have to pack up each day and be reassigned also a factor in our decision not to go to RM house at the beginning.

After checking out a Mason House, we checked into Ronald McDonald house. It is awesome--new as of June 2008. I got a call to sign for one of Ian's meds in the first couple of hours of being here even.

After that call, Ian called and said to come and get him that he was ready. That was around 2pm. We hustled over to the hospital and loaded up two wagons worth of stuff and put it in ox and came to Ronald McDonald's House (termed by Ian). He thought we were going home I think.

We settled in here and Grandma went to be with my sister as there can only be four people at the RM house. Brett went to target solo (his first outing in over 3 weeks) to get diapers, etc. Not the adult time he was hoping for but I think he was grateful for it nonetheless.

So our family is together in one spot that is not the hospital in over three weeks (brett was on business for a few days before we got the call for transplant). Ian stayed up later than we would ever allow just enjoying our time here. We all finally crashed at about 10pm. We are thrilled to be here and so grateful that the RM house exsists--go all those happy meals!

Day 18 Leaving tomorrow?

So today is Day 18. Our routine at this point is for Mom, Livia and I to come into the hospital in the morning after we eat breakfast and I feed Livia. I let Brett sleep some more, shower, eat while I spend time with Livia and Grandma spends time with Ian (typically in the playroom). The playroom has a "flinstones" little tykes car that Ian loves to drive around the floor. We eat lunch together in Ian's room (Ian typically has bread, string cheese and cheetos) then head back to the Mason house typically with laundry in tow. After preparing dinner at the Mason house, we come back to the hospital and eat with Ian and Brett. Ian typically has chicken nuggets, cheese pizza, or grilled cheese. He discovered cool ranch doritos the other day pilfering them from Brett. After dinner and playtime with Ian, we leave and go back to the Mason house and go to bed to start the routine the next day. One of the harder parts of the transplant is not being together as a family. Brett and I have recently talked for about a half hour at the end of each day in the waiting are while Grandma snuggles with Ian in his room after scriptures and prayer. It has been huge for Brett and I to talk about things--not even all related to Ian's transplant even.

So we are currently looking for a portable DVD player for our car given the driving we will need to do in the next year or so. Those reading this with recommendations on what works/didn't work--please pass that info along. We want to invest in one with two screens so that Livia can watch it too when she becomes interested in that sort of thing.

Ian asked me today if we were leaving the hospital tomorrow and if he was getting a new building for his train set...clever little boy! He took meds like a champ and his prograf level is down today so it does look probable that we could leave tomorrow.

We really appreciate those who sendus emails, notes, etc. It really helps so thank you so much.