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....

Day 12 means On to the Transplant Floor

Ian was moved to the transplant floor--aka butterfly floor. He is very excited as he is more moble now and gets to see Livia and other visitors more freely. We are still be cautious as to who comes to visit right now with germs being our enemy big time. We had pizza in celebration of his move. It took a long time to get moved--the hurry up and wait scenario again. The doctors had to write the offical orders for him to move--everything else was done and he couldn't be moved on just verbal direction.

He continues to be on antibiotics to treat any trace of infection. We are hopeful his neck IV line will come out tomorrow. The antimicrobial disk came out tonight so the dressign had to be changed--bummer. Ian hates the tape.

The transplant floor is much noiser in terms of visitors, etc. hopefully brett and ian will get some sleep. The transplant floor room is also much smaller so I took some things home today. We anticipate being on the transplant floor for about a week to two weeks before being discharged for local stay of about two to four weeks then discharged home.

Livia was crabby today. Grandma and Grandpa did great trying to get her to nap, etc. I just bathed her and put her down, am typing this and then heading to bed myself as I am wiped too. We didn't attempt a bottle today so I can't report on that.

I think Brett is tired too. Hopefully Ian will let him sleep tonight. I am so greatful for all the help we have is so many ways. A box of goodies from CCS (Brett's former colleagues) arrived for Ian and us! It was a lovely ray of sunshine.

I am hopeful tomorrow will bring well rested Herbst family members to enjoy a great day!

Fever on Day 11

Ian had a fever last night. It spiked around 100 degrees. Fevers are normal after transplant but it is being watched very closely. He is also have some adverse reaction to the antibiotics and so he is having blood cultures done, etc. We should have results starting to come back today but others take 48 hours. The doctors are not concerned so we are trying not to be either. Another antibiotic has been started to help curb any possible new "bugs" that he may be contending with.

I went to sacrament meeting at my sisters ward today. It was great to go to church for just that little bit. Brett and Ian of course could not attend. One of the speakers talked on service and it was so timely with all the service that is being rendered for Ian and us. My sister made meals for us for a whole week--I don't even know how to begin to thank her.

I am going back to see Ian tonight and deliver dinner for Brett. Ian and I will, I am sure play Hi Ho Cherry-O another game that he has recently discovered. It is very cute to see him with the spinner as this is the first game he has played with a spinner. He continues to enjoy go fish, snap and don't spill the beans. Memory is also in the mix.

I played engines with Ian today on the floor. He gets frustrated when his long train doesn't stay together when chugged. He is also very particular about which engines line up next to each other. (Only Thomas should pull Annie and Claribel; Gordon must lead the line, Percy should pull the Chinese dragon, and so forth).

Livia had a good night last night overall--stayed in the pack and play until 3am which means she is not in the bed with me. I know we are going to have habits for both kids to break when we are done this but for now it is just about enduring and survival.

Yesterday I was able to watch a few minutes of a college football bowl game with my parents while I fed Livia--yes multitasking as always. It was great to just sit and watch the game. I am hopeful to watch the Hokies play in Ian's room with him on the 1st--he is very cute when he makes the time-out symbol, etc. I also went to target for some "retail therapy" and it was wonderful. I bought a christmas shirt for myself and stocking holders for next year. I also needed to get the next size of clothes for Livia as she is getting too big for almost everything that I packed. I bought two sleep and play outfits for her to tide us over for a few.

We are hopeful that tomorrow brings us to the transplant floor but we will see....

Day 10 - Still in PICU

We may be moving to the transplant floor tomorrow instead of monday. This is great but will depend on Ian's ultrasound tomorrow morning so it may still not happen.

Livia was a good girl last night for the most part. Grandpa and Grandma have been a huge help with her. She is cooing and "talking" to them so cutely. She had a diaper "failure" in the night which caused some mild drama.

Brett and I may be able to go and eat lunch together with Livia today as my parents are probably coming to see Ian today. Brett is resting now--trying to get some extra sleep from his night time duty. Ian was up several times to go to the bathroom apparently but did well overall.

Thanks to all sending prayers, love, and notes/emails to us!