Wednesday, December 31, 2008

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....

Monday, December 29, 2008

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!

Sunday, December 28, 2008

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....

Saturday, December 27, 2008

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!

Friday, December 26, 2008

The Day After Christmas--Day 9

We are still in PICU and will be until at least Monday. This is erring on the side of caution but still somewhat of a bummer as we were hoping to be out by this weekend. The surgeon just wants to be careful and I appreciate that but at the same time going to the transplant floor would help things in terms of the juggling act I have been keeping up for over a week now. It has been rough.

I've been to the hospital twice today and got hte report this AM that Ian was calling out for me in the night. Yeah....that made me feel great. I tried to spend extra time and am going back tonight (with soft TP in hand) to play more rounds of go fish, don't spill the beans, and snap--new games from Christmas that Ian is loving. I am grateful to get some others into the rotation as CandyLand is great but only for about 3 times in a row then I need a break from Gloppy and Mr. Mint.

Livia has been a picky princess today in terms of bottles. She is so cute and I love her so I can't be mad at her. I fed her in a steaming hot lactation room in the hospital and I think we both lost about 3 pounds--it was roasting! She did pretty good last night over all.

Grandpa Meldrum is staying iwth my Mom (aka Grandma Meldrum) and I for a few here at the Mason House as my sisters family is sick and we can't have the germs right now with ian high on immunosuppressants. So the four of us are rooming in a single room--my dad was on a pull out chair last night so I could have a bed--thanks dad! We are so blessed to have the Mason House to stay at!

I had my mom and Dad go to target for the after christmas sales--I need some wrapping paper and stocking holders for next year. I think I may try to go tomorrow--hopefully timing of things will work out. They got some new closed lid drinks for Brett as that is all he is allowed in the PICU.

So we are doing well still on Day 9 and continue to count our blessings naming them one by one...

Thursday, December 25, 2008

Christmas Day is Day 8

Today is Christmas and it has been a special day...not like Christmas is normally for most folks where you wake up and rush to the tree to see what Santa brought. Livia and I got up and spent some time together, I showered and ate breakfast and then waited for my parents to come back from the night with my sister and her family. They watched Livia while I went to see Ian and Brett in PICU and Santa came in a big way. The generosity of people here is amazing to us as Ian received many gifts and visits from special people throughout the day. He got lots of Thomas things--a carrying case with a new engine or two was probably his favorite (coaches Annie and Claribel & Stanley to be very specific). We played on the floor again with a blanket.

Livia did not take a bottle today at all (grrrrr) so my time in the mornign was shorter with Ian. I was there at least to help him get his NG tube out--yessssssss!!! He is able to be a good enough eater and take his meds by mouth that he got it out. The doctors continue to be pleased with Ian's labs. We had Ian in big boy undies but because of some of the tubes and stuff still attached, they were more trouble than good so he is back in hospital pants which he doesn't seem to mind.

I am here with Brett and Ian for a few tonight. My parents came with Livia so Brett could see her today. She napped today which was good as yesterday was a bit rough for that. Brett was able to eat a ham dinner (thanks to my sister) and it will probably be his only real meal today. I brought him a milk and banana this morning if that counts for breakfast. It is hard not to be able to be together as a family and particularly hard for me to be running (literally) back and forth between Livia and Ian. The plan is to try one more bottle type for Livia and if that doesn't work then I will keep running for as long as needed. I am hopeful that by Saturday we can be moved ot the transplant floor so in preparation I am taking home some things that Ian received today for Christmas.

It has been a wonderful day--truly! Merry Christmas to all and to all a good night!

Wednesday, December 24, 2008

Christmas Eve Day 7

A week ago Ian received his transplant. So far our first week post transplant has been a bit of a roller coaster like most families in the transplant community said it would be. We've had tears of joy, fear, sadness, and relief sometimes all at once.

I was with Ian for doctors rounds again this morning. The doctors know me well enough now that they brought a copy of the labs with them to hand to me as soon as I asked for the labs. His levels are all looking good. I will be tracking and trending them in excel as soon as I get my laptop that my dad just brought to me today.

Ian is still not fully pink and that could take over a month to happen. Brett and I can both tell he is less yellow in his face, hands, feet and eyes especially. He is in big boy undies today and walked to the potty two times. He was down playing on a blanket on the floor and even got on his stomach at one point to chug the train around a huge track. He is a bit wobbly on his feet which is to be expected given the length of time in bed and nature of his transplant surgery.

Livia hasn't napped at all today and finally crashed on our way here to the hospital. She and I will spend some special time together tonight--I am thinking that we may try to go to a Christmas Eve devotional at one of the chapels near hte hospital. My parents will be with my sister here in the metro area until tomorrow morning and then Ian, Brett and I will have ourselves a very merry christmas in his PICU room. Livia will be watched by grandma and grandpa at the Mason House.

I picked up a small tree for Ian's room today at Target which was absolutely crazy. I usually don't go out this late to buy things for Christmas but the circumstances this Christmas are different. I also got Tacos from Taco Bell for Brett as that is a tradition in his family to eat Tacos on Christmas Eve--not quite like homemade but it was the best I could do. Ian will get some Santa presents here and then a special visit from Santa once back in south carolina. Livia is too little to really know what is happening which is great in many ways. She was not as stellar with the bottle today which is a bit concerning after her great trend.

Ian's new liver is such a great gift--a very special christmas present. As I think of tonight being Christmas Eve with Ian in the PICU, my mind and heart think about the donor family and as before, I have said a special prayer of comfort for them at this time. Thank you donor family where ever you are and God be with you.

Tuesday, December 23, 2008

Bob the Builder Day 6

This morning Ian and I are watching Bob the Builder. He wants to get down to play with his engines so we are going to work on that today--it will be good for everyone. Even Brett can now sing the Bob the Builder theme song.

Brett has gone to eat some lunch and I am here with Ian catching up the blogs while Ian is into his Bob the Builder. Ian slept better last night thanks to Mr. Puppy. Ian was scared to sleep with him for fear of getting him dirty but thanks to my mom's idea of putting a hospital gown on Mr. Puppy, last night was the best night yet for Brett and Ian. I cannot say the same for Livia and I. I am beginning to wonder if I will ever stop feeling tired?

The routine so far has been something like this....wake up with Livia and feed her and pump. Shower, grab breakfast to eat as I drive to the hospital. Grab something for brett as well. Arrive at hospital circling in the parking garage for a spot multiple times (takes about 15 mins to park). Arrive at PICU hoping someone is at the desk to let me back. Wash hands on way in. Be with Ian while Brett sleeps, showers and/or eats. Leave to go back to Mason Guest House which is a bed/breakfast set up just for transplant families that is absolutely wonderful! Feed Livy and eat lunch. Write in blog/do laundry/play with livy/search for a grocery store, etc. Fix dinner. Eat. Prepare a plate for brett. Feed livy. Go to hospital to deliver dinner to brett and spend time with Ian. Leave hospital. Feed Livy. Get livy ready for bed. Bed. Feed livy throughout night. I can't get back into PICU from 7-8 am and 7-8 pm b/c nurses shift change. I also can't get back when the doctors are rounding anywhere from 8 to noon--it is crazy they don't have more of a set time as it drives me nuts.

Livia is doing well with the bottle thus far. Has taken it again two more times. What a huge blessing.

Brett and I cannot eat in Ian's PICU room now even though Ian can. Weird isn't it? We also both can't be alseep in Ian's PICU room--even on Christmas eve so we are brainstorming that one. Santa does make a visit here so that is good. We'll be here in PICU through Christmas.

Ian stood up and walked a bit yesterday which was great. He is able to wear underwear again, etc. too so we'll get that taken care of later today. I gave him a sponge bath yesterday and am combing his hair that is quite in need of washing at this point.

I was here again for doctors rounds and report is great. Ian is doing very well. We are close to getting the NG tube out. Ian has to take all of his meds well by mouth...only one med is giving us a little problem so we are going to try to flavor it with grape. cross fingers. Ian can also get one of his hand IV units out today but opted not to do that yet--I think he remembers the pain of the tape from another removal. He'll have to have his neck IV dressing changed and that was so not pleasant yesterday for Ian.

We feel so richly blessed with how well things have gone to this point. We say prayers of thanks multiple times a day as we know Heavenly Father is mindful of Ian and our family.

Monday, December 22, 2008

Livia took a bottle

Livia took a bottle this AM from my mom! This is huge and a real answer to prayers. Thank you to all who have been praying for us for this.

I was with Ian with the doctors rounded today. Looks like Ian will be here until after Christmas in PICU which is what we expected. One of the meds has to be given here in PICU so until he is done needing it he will be in PICU. He'll get his staples out in 3 weeks about and his surgical drain about the same time. His NG tube can come out when he can take all meds orally.

Ian's labs continue to trend down/up as appropriate. I am a numbers girl and the surgeon told me not to follow just one or two numbers or I would go nuts.

I am heading to the store to get some things we need today--soap, deod., stocking things for Ian b/c I didn't bring any, etc.

Again, thank you to everyone praying for us. I cannot say enough thanks to all those who have helped us in any way. We are so grateful and are humbled by the outpouring of love.

Sunday, December 21, 2008

Full Diet on day 4

Ian appears to have turned a corner with his new liver picking up functions so that is a huge relief. He still has a long road still ahead of him but some of the bigger hurdles at the front are slowly being hurdled.

He got to eat today and what did he choose--chicken nuggets of course but he didn't eat one after they arrived. He had about 1/2 a blueberry muffin, pretzels, and a chocolate milk. He can also walk to the big boy potty if he wants to now.

I got a nap this afternoon and feel better for the rest in general. My sister brought food to my mom and I today so we can have something other than fast food which is most exciting--never thought I would be excited about green veggies :)

Livy is not taking the bottle still so I am running back and forth between the two kids and it is killing me right now. I have asked our social worker if there is anyway that livia could visit once Ian is out of PICU. Livy in general is just a momma's girl and I am struggling (emotionally and physcially) splittign my time between the two kids.

Continue to pray for our family! We appreciate all the prayers and those who are helping us.

Saturday, December 20, 2008

Back in Atlanta -- Day 3

I am back in Atlanta (as of yesterday afternoon) and I must say the drive here this time wasn't nearly as speed laden as the first time. My mom, livia, family friend, AJ, and I got ourselves into the Mason Guest house last night after a very fun yogurt explosion accident. Please do not ask.

I was here when Ian had a bowel movement the first time on Friday afternoon which was great. He is doing well--his labs are showing steady improvement but a little slower than we had hoped. The doctors are monitoring things very closely and are positive by the trending that Ian is showing.

This morning I shifted out with Brett as he had two hours of sleep--I think I got about 3 between feeding livy, worrying about Ian, and the size and "comfort" of my pull out chair that was my bed. While I was here Ian had his catheder (sp?) removed and one of his arterial blood pressure IV lines removed which is great. Taking the tape off him is not fun for Ian at all. He had tape on one of his wrist IVs fail and bled on his ball blanket so I am trying to find a place to wash that for him. When he has tubes/lines/tape removed, I try to distract him as much as possible by playing our engine guessing game, singing songs or other things. Ian keeps asking to go potty in the big potty but that is just not possible right now. We think he may be able to have clear liquids tonight.

I thought I was prepared for the transplant call but no so at all. In three years, I've kept our bags with my sister who lives in metro ATL. Just two weeks ago when we were here for clinic, I decided to take them back to SC to repack/reassess and didn't get to do that yet. Thank goodness I hadn't unpacked anything so could just put them right into the trunk but they hadn't been updated for over a year. Brett and I are having to "live" apart right now and that is one of the kinks in the plan as I had thought we would be together and we are not. The other major kink is that Livia cannot come back to Ian's PICU room so I am having to go back and forth between Ian's PICU room and a family waiting area to feed Livy or from his PICU room to a transplant housing facility about 2 miles away to feed Livy. It is rough--very very rough. As I said on an earlier post, it would be such a stress relief if Livy were to take a bottle as I can pump milk for her where ever and my mom who is here helping me (THANK YOU MOM!) can feed her from the bottle. We are trying a new type of bottle for her later today.

Brett and I have different hurdles with our "divide and conquer" jobs and who has the bigger hurdles--I don't know. He has been amazing and wonderful and awesome and I am so glad we are doing this together and that we can bear our burdens together to make them light.

Please keep the prayers coming!

Thursday, December 18, 2008

Recovery Day 1 and Clean up crew

I'm home in Charleston for a few hours to get the house in "leaving" order as I won't be back for a while. I feel like I'm running a marathon that just doesn't stop....laundry, return library books, take down the christmas tree, pack clothes, hold the mail, etc. One of my key jobs is to get Mr. Puppy--Ian's lovey for him as well as Harold the Helicopter. I totally bolted without either of these items on Tuesday. My parents are here helping me get a few tasks done and then I am driving back to ATL tomorrow morning.

Ian is my hero. He has been a champ through everything. He has only said his tummy hurts once so far which is amazing to me. I've had two c-sections nothing close to what he has gone through and for those I was saying I hurt a lot more than just once. He will have lots of physical therapy to help him get back to the running and jumping, etc. The day before the call we had gone outside for a walk and chalk and running in the back yard and I am SOOOOOOOOOOOO glad that we did that; so glad.

We are trying to decide how to handle the whole Christmas in the hospital thing--Ian knows that Santa is very aware that he is at the hospital and to bring some of his presents there but Santa will likely make another visit to our home after we are back and settled.

The surgical team, doctors, nurses and staff have been wonderful. Just wanted to express our gratitude to everyone who has prayed for us and helped us in anyway. Many many thanks for helping us as we cross hurdles everyday with Ian's recovery.
Brett and Ian both have blog sites with information so check the side bar for those sites....

Wednesday, December 17, 2008

Transplant Day

We got the call for Ian's transplant yesterday morning about 9:15. Brett was out of town on business in Philly so I was solo with both kids. It was too foggy to fly so I had to drive to Atlanta to get here by 4pm. I felt the weight of the world on my shoulders for certain. It was all hurry up and wait--we waited all night and into the next morning. I am waiting in the OR area as Ian is just now going to start the transplant--he's been in the OR for 2+ hours already. Things have been crazy with trying to get Livy taken care of--she isn't taking a bottle which is causing huge problems. She also cannot be in the room with Ian at all in PICU or when he is on the regular floor which is causing a new set of variations in our plan. Anyone reading this wondering what they can do to help--prayers for all of our family would be a huge help; prayers for Ian's health and recovery--Livy to take a bottle and be a good girl for those watching her--Elaine and Brett to have the stamina to make it through this. I will try to post more when I get a chance.

Friday, December 12, 2008

Spilt Milk

So today in our errand running we had an experience...well let's say I had an experience. At our last stop, I was loading the kids when I realized our bread was being squished so I moved it only realizing too late that the bag with the milk also moved and tumbled out of the car. It was one of those moments that seemed in slow motion but yet I couldn't stop it from happening. Milk gushed out of the spilt gallon and I was trying to sprout at least two more sets of arms to console Ian who was melting down over the spilt milk he had no responsibility for, Livy who needed put in the car, and containment issues for the milk I had just purchased. One nice man asked if I had things under control or if I needed a hand. I think most people would have just left the milk and call it a learning experience but oh no not me. I double bagged it and set it on it's side and put in the car to drive 5mph home. We made it home without further spills and I managed to save more milk than I had thought. I snapped a picture of the jug with the nice whole in the side just for a memory!

Monday, December 8, 2008

Holiday Season

So now that Thanksgiving has past and Christmas is right around the corner I figured that I would update my blog on the subject of holidays. Thanksgiving itself was wonderful however the traffic coming home was less than desirable....a 5.5 hour journey took 10 hours. The kids were actually very good considering. Ian loved the tukey and had his first piece of pumpkin pie. I got up on black friday to hot the sales at 5am. I was able to get what I wanted only b/c I sprinted through the stores. My strategy of no cart serves me well.

Christmas time is my favorite but this year I am feeling a bit motr like the grinch for some reason. We got our tree up last night--lights were again tangled despite efforts last year to avoid that. Ian has found the magic of the season this year which is great. He asks about Santa a lot and is a bit weray of our chimney. I managed to get everyone in Santa hats for a quick picture although I want a redo when we are all dressed nicely in front of a decorated tree next round.

Ian is learning Christmas songs and his favorites are Jolly Old St. Nick; We wish you a merry Christmas (complete with figgy pudding verse), and Up on the housetop. He had his first ever roasted marshmellow and didn't like the "fire" on it at all. We'll work on developing that taste.
We've made a countdown chain with various activities on it to help the days and today we are to do a holiday craft so wish us luck and think of us as we glue shiny pom poms on craftsticks, etc.