Home Day 43

We are home now....got in late last night. I am exhausted and fighting a bit of a cold on top of it so this is a very short post right now. I think the exhaustion, stress, and climate have combined against me for this cold. OJ is my friend.

We are good--Ian is excited to be home and despite the late hour (almost midnight) we let him play with his train table as he was dying for it.

Ian is at labs today right now with Brett here in Charleston at MUSC. We have to go back to ATL next week for Clinic on Wednesday.

Until then, I am wearing a mask and using lots of germ-x. More later....

Month Day 41

Today is Ian's month day--the 27th of each month. So I did our usual pictures on his month day and today's are of him playing blocks and moon sand. Speaking of moon sand....not sure if I am fond of the stuff. It goes everywhere. I think I prefer playdoh.

As we weren't sent home yesterday, we had to go to target to get more TP, milk, etc. I also bought swiffer wet cloths to clean our suite as the dollar store sponge mop has already broken and is useless--go figure for a dollar I was hoping it would last about 3 weeks instead of the 2 weeks that it did.

We head to clinic tomorrow and I am anticipating that we will have to stay for another week at this point. We also have labs and need to get Ian's PICC line dressing changed which should be swell fun. I have tried to prep Ian as much as possible. I reordered Ian's meds and our insurance was "present" this time so the copayments were much more reasonable this time thank goodness.

I am getting both an oral history from Ian and am writing down things that he tells me about this experience. It is neat to hear his perspective on things.

I haven't seen the season premier of lost yet and won't until we get home. I am watching American Idol with my mom however and it is my first season. I am enjoying it and am anxious to see how it plays out.

More tomorrow after clinic.....

Still here day 40

So we're still in ATL at RMH. Ian's prograf level was really low from today's labs so they want to keep us here. We'll have labs again on Wednesday and go to clinic. Honestly, I would have been suprised to leave today and have thought that this Wednesday would be the earliest we could leave.

The doctors did not change Ian's prograf dose right now---not wanting to knee jerk based on one lab draw. So we'll see what happens Wednesday.

We are packed up somewhat which is both helpful and painful....helpful as it tidies the place a bit nad helps me visualize what needs to be packed into my tiny corolla better. Painful as I had to dig out jammies, etc. for tonight.

Ian is doing well over all. I keep telling him not to pick at his incision site as it will make it hurt and get infected. He listens OK on that one. He still likes to open his syringes for when I flush his line, etc. Today I couldn't find the m&m's for his evening meds so we had to use mike and ikes instead--they worked just fine. He continues to inhale chocolate chip cookies and I am worried for when we leave RMH that I will need to bake weekly. Until this point, I am embarrassed to confess that I have made cookies about 10 times in the last 8 years of marriage. Recipes for tasty (and easy) cookies are welcome :)

Livia is growing even more. She is in size 2 diapers and will some of the 3 months size things are getting tight. She is a chub and honestly I love it as Ian never really had rolls b/c of his liver disease. She loves her Einstein gym, the bouncy chair and pretty much being on the floor so she can kick and play. Ian still struggles a bit with knowing how much is too much for her in terms of hugs, etc.

Brett made it back ok to Charleston flying standby (thanks to Caylors for hte buddy pass). He will drive this next weekend if we are still here. He is going to be meeting with two pediatricians this week to find a new one....our previous one in SC is fine just a massive long wait each time of more htan an hour. Ian's transplant team has indicated that if he is sick, they want someone to see him right away and we just don't see that happening with the current doctor.

Lots of people have been asking how I am doing...honestly, I am doing OK. Sure I'd like to be home at this point, etc. but I am trying to stay mentally strong and focus on all the wonderful blessings of Ians' new liver. The first thing I do plan to do when I get home is.......lay on my own bed for a few and maybe even take a nap.....then I'll worry about the stack of mail, unpacking, etc........

Day 38 Picture People

Brett arrived safely yesterday but on a later flight than we had anticipated due to mechanical difficulties with the plane. Ian fell asleep on the way to the airport as did Livia.

We didn't hear from the transplant team yesterday and that is a postive as his prograf level didn't need changed.

We had a lazy day today with Brett here. This afternoon we went to picture people at perimeter mall for family photos. The pictures were really cute and I almost joined the portrait club. I ended up with our freebie photo and one of the two kids together. I may buy more online later as the pix will be available for 60 days.

Target

This post will be pretty short as my computer is slow and livia is still up.

Clinic yesterday was ok. Slow to be called back. PICC line dressing change was better than the last time but still trauma.

The big news is that we may be looking to head home to Charleston early next week. We've got to have good labs tomorrow, Friday and again on Monday. If they are clear, no fevers, etc. and--and this is hte big AND, there has to be a lab in Charleston area that can turn lab results around fast enough (a day for prograf levels is key). I feel confident that MUSC will have that capability but they need to verify, etc. We'll be set up on home health as well. So lots to do it make it happen. I am nervous to go home b/c then we are 4.5 hours away from the transplant team should anything go wrong but at the same time I am anxious to get home. Brett is flying in this weekend--we think. Still to be set up.

Went to target today. I had Ian wear gloves and a breathing mask too to safegaurd him. It was good to get out. We went to TCBY for "ice cream" (ate in the car) and then to PDK airport.

More tomorrow....

Yesterday passed in somewhat of a blur....a lazy morning, lunch at IHOP with Grandpa Herbst and Grandma Jenn then leaving, Daddy leaving, and then a pick up of Grandma, dinner, meds, and bed.

I managed to get all the pictures from the camera downloaded--almost 200 of them. I posted a few on my facebook page. I was pretty selective about what I put on there not wanting to expose Ian too much, etc. It is amazing to go back and look and rememeber different things from our experience. I think Ian's coloring started to really change around Christmas and that is about right for when his billirubin level really started to come down.

I have mederma for him to use--we are doing neosporin on places other than his tummy still right now. I hope to get the all clear from the doctors on Wednesday to start using the mederma to lessen the appearance of the inscision line. I used it for his other surgery and it worked well. Ian will win any scar story contests hands down. The doctors have told us some kids make up stories to go with it--bar fights, shark bites, etc. We'll see if Ian comes up with anything for his letter T--right now it is for Thomas the Train and (or what we've talked about) and he seems to appreciate that. I may try to go back and post some pictures here with the blog at approrpriate entries...we'll see if I can carve out that type of time.

So Ian is fighting meds a bit today--not sure if it is for the show with Grandma Meldrum being back or what. Morning meds were eventually taken but not without a threat to take away Disel 10.

I took Ian in for labs this morning. The staff have the inaguration coverage on in every patient room. He did great for labs over all. He tends to squeak a bit when they first call him back but then realizes it is no big deal anymore. I took some pictures of Ian getting labs and will get them downloaded at some point. He didn't get his PICC line dressing changed today so that means tomorrow at clinic we'll need to get that done. I'm bracing for impact of the weeping, wailing, and gnashing of teeth....

Temple Trip Day 32

So what to do today on Sunday when we aren't ready to go to church....why go to the Atlanta temple grounds with Grandpa Herbst and Grandma Jenn. It was chilly and I couldn't find Ian's hat so I let him use mine. The gloves were his though....I know now that a mother invented mittens without the finger compartments....goodness!

I was able to get pictures downloaded off the camera today so I'll be posting some of those on my facebook page soon--I say soon as that depends on how Livy does tonight/tomorrow as she is determining my spare time allotment right now. Although she is clueless, I am loving seeing her in new clothes that Brett brought from Charleston. I had only a few outfits (like 5) for her here and so now she has a broader spectrum now....complete with hairbows that Brett asked if she really needed when packing up the list of things to bring.

Ian got showered today with presents from Grandma Jenn and Grandpa Herbst including four, yes four, new Thomas engines. He got Farmer McColls chicken cars that cluck when you touch them, the aquarium cars that are magnetic on the top and sides (a plus for when Santa brings Cranky in Charleston--we still haven't had our Christmas there), Bertie the Bus, and Disel 10 which was the hit of the day. Ian is actually sleeping with Disel 10 next to his bed tonight. Several great new books were also given--The Very Busy Spider is one of them. He was so excited and I was too. Thank you Grandma and Grandpa!

Grandma Jenn also did haircuts for us this weekend while visiting and I got new highlights--I feel so trendy :) Ian was a bit leary of seeing me with the foils but relaxed a bit when he found out he was only getting a trim--not highlights like Mommy.

Dinner here tonight was odd in the fact it was really adult food being severed at RMH which is for children--so things like asaparagus, crab quiche, etc. Ian had a roll downstairs and chowed a string cheese when we got upstairs. He got to stay up late tonight because of G&G being here.

It has been wonderful to have Brett here and I am sad that tomorrow is arriving so quickly. He is going to try to fly back on a buddy pass this Friday to be here. My brother and his family are flying through ATL and we are hopeful to see them Saturday and then Brett's sister and family are driving trhough ATL and we are hopeful to see them Sunday.....all contingent on being "germ" free of course. It is late so I'm going to wrap this up.

Day 31 -- Month to the Date

So a month later......

Wow! I can't believe that we have made it a month out from transplant. The first month is a big milestone . The next milestone is 3 months, then a year. So in honor of the month, I thought I would do a brief summary recap.....

We got the call to come to Atlanta on December 16th. I drove with both kids to get here by 4pm leaving around 10am from Charleston. We made it! Ian didn't have his transplant until the 17th and hte surgery lasted about 9 hours. He received a full liver and was fully closed after the transplant with about 30 staples. Brett stayed with Ian the whole time he was in the hospital and I visited between Livia feedings. He was in PICU for 12 days, transplant floor for 7 days and at the Ronald McDonald House for 13 days thus far. He is currently on 9 medications which he takes the majority of them twice a day. He has a PICC line (like a semi-permanant IV site) that he has had for about 3 weeks for lab draws. He is currently on a T/Th lab schedule (but was MWF until this past Friday). We go to clinic (a big doctors visit at the hospital) every Wednesday afternoon. He has had his staples out for about a week now and all of the steri-strips are off now. He has said the best part of the hospital was coming to RMH.

We are so grateful for all those who have made his transplant possible in any way. The doctors and medical staff, friends and family, etc. We appreciate the thoughtfulness in sending packages, notes, gifts, love, etc. We are humbled at being the receiptants of such much love and support. Thank you and may Heavenly Father bless each of you as he has us!

Day 30 Aunt Beans House

So I'm typing this on Saturday as things got crazy yesterday.

We had labs in the morning and confirmed that there wouldn't be labs on Monday due to MLK Jr Day. We got stocked up with saline and heprin to continue to flush his PICC line. He was a champ at labs and weighed in at 14.6 kg or 32.2 lbs.

We came home and got ready to go to Sam's Club to get a big package of string cheese b/c someone (Ian) is eating 3 a day. We then headed out to Aunt Bean's for lunch and some play time at a house with carpet :) Ian had....a string cheese for lunch big suprise. He had a great time at Aunt Beans with his cousins (who were made to "bath" in germ-x before seeing him). The highlight was playing with bathtub paints and the foosball table. We left Aunt Bean's at 4pm and that was a mistake as it took two plus hours to come home through rush hour ATL traffic--it was worse than normal because a car was on fire in the middle of the interstate and shut things down for a few. Ian and Livia thankfully slept for most of it.

On the way home we got the joyous news from our transplant coordinator that Ian was moving to a T/Th lab schedule instead of a MWF schedule. That is a good step of progress and is quite exciting.

I was solo going to dinner through the "beeping door"--we didn't make it without the alarm going off. While waiting for dinner to be served, Ian discovered the play area for the RMH-by saying "hey look there are toys in there". Yipes! I have have been hiding that area from him all this time just b/c of the germ factor. Hopefully he won't remember it for a few.

Ian and Livia stayed up so late last night--probably b/c of the really long nap in the car. They fell asleep around 10:45 not due to lack of trying. Livia would wake up each time I tried to put her down and Ian wanted Mommy to lay with him and was trying to see Daddy come. Brett finally arrived about 20 minutes after the kids went to sleep. Nice timing! I was so tired that I went to bed to be rested for tomorrow's activities.....

A chilly day 29

Today was a cold and windy day so we didn't go anywhere today--no Brusters.

Ian played out in a common sitting area with Grandma--Candyland as usual. I got a nap with Livia during this time and it was wonderful. I stayed up late last night posting to the blog. I tried three times to post and lost the information and had to retype it three different times. Growl.....

Brett comes back tomorrow and I am very excited as is Ian. Grandpa Herbst and Grandma Jenn are coming on Saturday and will be here through Monday afternoon. They are excited to see Ian as well as Livia. Ian is anxious to show them his new trains.

Other than Candyland, we did some preschool things today and read some stories. We had dinner in family kitchen area or as Ian calls it "through the beeping door" which did indeed beep on us tonight as we were not faster than the allotted 15 seconds to make it through. We had pulled pork BBQ tonight and it was a great meal--very much appreciated by us as most of the meals here are spaghetti or lasgana. Ian continues to have a nice appetite and string cheese is the favorite right now along with pretzels.

We did laundry today and tried to tidy up some as well. The floors are all vinyl and show dust mightly. If anything falls on the floor it becomes "gooey and gross" and goes in the trash. This causes some tears for Ian when he drops things like his yogos today. I replaced them.

Meds weren't that big of a battle today which was nice. He likes to suprise me or Grandma with empty syringes. He earned another 3 Thomas stickers today towards another suprise of some sort. He likes to get some Mike and Ike candies as well as the stickers.

He got a bath today and he is somehow not liking getting wet...even hand washing is an issue (thank goodness for germ-x). I got his hair washed and him scrubbed through the protests. After bath, I flushed his PICC line. He has stopped squeeking about that as he has realized that it doesn't hurt....that and he likes to open the syringes and hand me the end of his line.

Labs tomorrow, then a trip to Aunt Beans, and the arrival of daddy so tomorrow should be filled with good things!

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.....

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.