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.

Hurry up and Wait Day 17

So we are still here in the hospital on Day 17--hurry up and wait seems to be the theme here. We won't be discharged today and it looks like the new target it monday based on the fact that it is now the weekend and Ian's PICC line and needed labs. The lab here on weekends can't draw from a PICC line apparently--silly if you ask me but since no one did I shall remain silent.

Ian has played with his new Knapford Station (thanks to Grandma and Grandpa for a great gift) a lot. He loves his Thomas the Train. He is currently looking at new boooks that he got for Christmas. I just purchased a new car--the fireworks car--at Target today that was on sale. Brett told me that Ian is asking about other buildings now....he is getting others for Christmas when we return back to Charleston.

Livia has been a good girl taking longer naps today which is nice. Grandma did laundry again today as Ian barfed a bit on his special blankets--aka buddies. I think she has done laundry every day for the last week or so. We haul it out in the hamper and haul it back folded in the popup hamper.

Ian took about a 1.5 hour nap today with Brett on Brett's bed. It was a good rest for both of them and much needed.

I'll write more on the next post.....

Day 16 Still in Hospital

So it is day 16 and we were hoping to get discharged but alas, we were not. Ian's prograf level is exceptionally high and has been for about three days. The doctors want to try to get that normalized before letting us go. I am totally fine with that as Prograf is the drug for Ian's life. He takes all his meds orally and is a champ at doing it. He will even tell the nurses "I'm a champ at meds." which is really cute. He only struggles with the bactrim and we are conquering that by letting him have chocolate milk between squirts of the pink med.

We got our "discharge" training done somewhat yesterday. I still need to be trained to flush and hep lock Ian's PICC line that he will be leaving with. He'll be on 9 meds for 3 months and after 3 months it will greatly diminish to about 4 or 5 and eventually will be down to just the prograf. The prograf is the size of a tic tac pill and we are working in earnest with Ian on getting him to swallow it so it doesn't have to be compounded. We have bribed him with a new Thomas the Train building for his train table if he can master it-- I anticipate that it will be a while.

I am feeling a bit overwhelmed with everything that will be our new "normal". In some ways the wait for the liver was very easy compared to this next phase. Keeping Ian infection free will be our goal--especially in the first 3 months. I've got antibacterial stuff in my purse already to roll for when we need it. Ian is going to miss the first month+ of sunbeams but that is ok. I am glad he is not returning to nursery with the gooey toys.

All of us are wiped today as we stayed up until midnight the night before watching the Hokies play. So silly of us. We'll get better sleep tonight hopefully.

On to day 17.....

Day 15 New Years Day

We celebrated New Years by watching some football bowl games in Ian's room. It reminded us a bit of when he was in the hospital for hte Kisai. I went to my sisters house iwth Livia and parents for New Years day dinner. Brett and Ian had their special dinner at the hospital.

The doctors told us that Ian looks like he can be discharged on Friday if all holds well. We aren't keeping our hopes up on that but it is still exciting nontheless. Average stay in hospital is 21 days so if we can get out a bit ahead of that it would be great.

Ian's prograf level was high today so the doctors are watching it. They are thinkng that his labs were drawn right after the med and that is why.

Livia and I were solo at the guest house last night. I watched the Orange Bowl to cheer my alma mater, VT on to victory. I held Livia the entire time which was good as it made me not so animated. Brett and I were sending texts about the plays throughout--both of us wished we could be there but alas, we can dream for a future year.

Our new year has been a good one and we can only hope for great days ahead.

New Years Eve Day 14

Today is New Years Eve--the last day of 2008! Our theme for the year has been 2008 is great and boy it has been. Lots has happened in our family--new job, new home, new baby and now we can say new liver!!! I wrote in our annual christmas letter that the new liver was the only big thing that didn't happen this year--maybe I "jinxed" us in getting it then by writing that?

Ians labs continue to show steady improvement. I am tracking them in excel--I opted not to do trendlines yet.

He is supposed to get his PIC line put in today--this allows for easy lab draws and meds by IV if needed. He'll need labs at least 3 times a week for the first little bit. I'm not sure if that is happening as he isn't supposed to eat beforehand and he has had breakfast and we just were able to order lunch. A special nurse needs to put it in too and with the holidays I'm not sure if anyone from that team is available.

Grandpa and Grandma are here again today. Grandpa has been tending Livia and Grandma has been playing with Ian so that Brett and I could get some down time. It has been good. We are hopeful to be able to watch the Hokies in the Orange Bowl tomorrow night.

Ian got a "bath" this AM and I trimmed his nails as well. You would think I was pouring alcohol onto his surgery site by the howling coming from his room. My goodness! We managed though. He won't be able to truly bath until the staples are out and then we won't be able to submerge the arm until after the PIC line is out.

What a wonderful 2008 and we're glad we can say....on to 2009 which will surely be a year to shine!

Day 13 Refreshing

So being on the transplant floor means a lot more freedom in terms of visitors, times to see Ian, etc. It is refreshing.

Ian had his drain removed yesterday and was given a sedative to do so. He slept most of the afternoon because of it. Brett and I were able to talk for the first time in about two weeks without ears listening, etc. It was refreshing.

Livia was a bit crabby again. Perhaps she knew that I couldn't find a Christmas dress for her at Target when we went to the clearance sales. Grandma and Grandpa meldrum found one at Kohl's which was refreshing.

I had a nap with livia yesterday afternoon while G&G Meldrum played with Ian and helped him get up and walk for physical therapy. That was refreshing.

So in all day 13 was refreshing....