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...

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!

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.

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.

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.

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.

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!