I was going through some pictures on my camera and came across some from back in July. My skinny minny.
And here she is now. After two months of TPN and a healthy liver. My little butterball.
We met two of our little liver friends in clinic today. Like Eden they will be needing a liver transplant as well, and will hopefully be going the living donor route in a few months. I wish them the best of luck and can't wait to see there "before and after" pics.
After being discharged from the hospital a few weeks ago I had barely stepped through the door at home and Seth and Ethan started tugging on my shirt asking if they could see my "crack." I am not sure where they came up with that one. After that they asked to see my "crack" at least a few times a day for the next week.
So here is a picture of my "crack." Which I have been told is actually smaller than most living liver donor incisions. Typically they are just as large as the recipients.
Its amazing what a difference a healthy liver and a few weeks makes. Eden has always been a happy smiley little girl but we could never get her to make more than a little forced laugh. Well today Daddy was blowing raspberries on her belly and rubbing his whiskers on her and she got the uncontrollable your going to make me wet my diaper giggles. It was music to my ears. More than that she seems to be more alert and although she still won't eat anything she reaches out her hands for a taste of what everyone else is eating. I can't wait to see what else she amazes me with in the weeks to come.
(Since I still haven't figured out how to post video yet you will have to wait for Doug to post a video of the giggles, but I promise I will get it on here.)
8:37AM What we hope will be the last day of post from PCMC. Eden is up and about this morning, glad she has her favorite monkey back. Erica will be on her way up this morning, and then I guess we sit around until they say we can go home. Probably won't be until the afternoon since her morning labs, usually dont get back until 3Pm.
4:37PM Everything looks good for going home tomorrow, cross our finger, knock on wood, and all that good stuff. Everyone is happy with her progress - we attribute to all your prayers, and fasting. Today they took her off feeds for four hours and we tried giving her a bottle. She wasn't opposed to putting it in her mouth and chewing on it, but she didn't really eat any of it. Eden is munching on some Cheetos right now. Johnson's brought mommy up, and Aunt Carrie came too. She brought 2 more monkeys. I think Eden has a monkey for everyday of the week.
10:11AM Well we are doing good this morning. Mommy is coming up for education today, she should be here soon. Eden had a bath this morning. One of the nurses brought in a toy so Eden is having fun. although her favorite monkey fell on the floor so, he had to go in the closet to till the next laundry day. Eden threw up for the first time in two week, didn't like the nystanton this morning. So we will see what her prograf level is this afternoon since that was one that came back up. I have been keeping busy doing some shopping online.
5:22PM Drains are out!!!!!!!!!!!!!!! One step closer to going home
10:38AM Another good night, it was going to be bad cause they were going to have to try and flush Eden's PIC line every 30 minutes cause it was not drawing well. Luckily the nurse decided to find out when the cap was changed last, and it had been a while, so that took care of it, and it draws fine, so we could sleep. Surgical called and said they would remove both drains today :) we just don't know when yet. They want two residents to do it so it can be done at the same time. But one was in surgery so hopefully soon. Just need to know a bit early so we can get Eden loaded up on morphine first. Other than that not much going on today, Occupational therapy came by and worked with Eden trying to get her to stand up and move around. they are going to look for a walker so Eden can move around. Speech is supposed to come as well and work on eating with her. Doing laundry again so we have clean stuffed animals.
7:38PM Had a good visit with mommy and Grandma Lai, Aunt Yvonne came up too. Boy was Eden happy. Watched TV and had dinner. Then she was pretty tired. So she is asleep already. Long day. 1:24PM Well we definitely slept better last night. One crying spout but that I can deal with. Eden is sleeping once again. nothing on TV, so got a movie on, and have been catching up with friends and family on the phone. Erica is supposed to come up sometime. she is doing well, went Christmas shopping yesterday, so must be doing alright. Surgical is supposed to come up today and remove the drain on her right side. the nurse today figured out that the left side probably drains more because she is always facing that way. So maybe tonight turn her bed the other way and the left side will hardly drain and we can get it out. then we can get out of here.
9:11AM Well didn't sleep that well last night, neither did Eden. We have requested not to have last night nurse again. Seemed to just take too long, and kept waking us up every hour it seemed, then it would take a while before Eden would calm down again, repeat repeat repeat. So I just got up at 6:30 and Eden was about 7:30. Hopefully a bath in a bit will help her take a nap for a while. talked to surgery when they stopped in this morning about getting drains out. They are still putting out some fluid. 20 and 50 from the other. He said they would like to take them out at the same time. So crossing fingers for today, but pretty sure by Monday.
5:46 PM Sorry for no update until now, have been a bit tired, and just never got around to it. Eden continues to do well. They need to bring up her prograff level some, so there is no rejection. We were hoping that maybe one of her JP drains might come out, but it didn't. And nothing really happens on the weekend because most people are off. So hopefully Monday. Tuesdays we are supposed to have some education classes before discharge so hopefully by thanksgiving we will be home. That would make it the best thanksgiving ever. Eden has been climbing around in her crib. Didn't want to try her Macaroni and cheese though. She didn't mind the crackers, there are still crumbs in her bed. I have been busy working on a blog for Utah Liver Families. http://utahliverfamilies.blogspot.com/ Also today got sad news that a long time friend that served mission with dad and was our Branch President in Hong Kong died. Our thoughts and prayers are with William Hsu's family.
7:21 PM Mommy came up to visit along with Grandma and Grandpa Johnson. Eden was eating it up. She was such a ham. Daddy was mean though and said 'bye bye' before mom left and Eden started getting all teary eyed. Occupational therapy brought a big red mat so Eden can get down. She also got a high chair too. mommy brought up some Mac and Cheese so we will try that tomorrow.
9:49AM A better night only one crying spout at 2AM other than that pretty quiet. She has been happy all morning. Is is having fun right now sucking on Cheetos. The doctors said she can eat anything she is willing to try, so maybe a little applesauce later on. See how she does.
I love to hear mommy and my brothers on the phone :)
I sleep in funny positions.
2:00PM Eden is finally up, although it was a bit of a struggle she didn't want to get up yet. So got some water and gave her a bath. She is more active now. Some liver friends sent her a big bow so did her hair. She is too cute. Thanks Lizzie.
9:00AM The Price is Right :) Well glad that someone is still sleeping. We tried to go to bed around 9PM last night but it was more like midnight before some restless sleep. Eden had several crying spots and moving sleeping positions. So asked for some more pain med for her so she could sleep. She was up a bit at 4 when they did her vitals but now is sleeping peacefully. So I have been able to go eat and take a shower already without any crying.
11:47AM Just sitting around not much new. They are upping Eden's feeds and are going to try some Oxycodon instead of the morphine it last a bit longer, which is good with all of her recent activity. She is sitting up more, and climbing a bit. Today is laundry day for me she is not happy when I have to leave to change the load. She got to talk to mom and the bobos on the phone which made her really happy but at those dreaded words 'bye bye' the crocodile tears begin. She is just tired of sitting in her bed all the time. will hold her for a bit and maybe we can sit in one of the wagons and walk back and forth in the halls.
7:13 PM Erica is on her way home. eden was not to happy anytime anyone had to leave her room, so the only way out for me now is when she is asleep. Grandma Lai had fun visiting. Nice break from the boys.
1:18PM I am a slacker sorry to those looking for updates. Eden is doing well, many doctors have been by today to check up on her including Dr. Book. She is doing well. They started her on milk though her NG tube and see how she does, start it off real slow show no puking like at home all the time. They did a chest X-ray and everything looked really good. She had a dose of lasix and so that helped draw out more of the fluid her body is holding. Her skin is a little more soft. Other than that she is just resting. Erica has still been a bit nauseous she did make it down with me to Pathology. We got to see Eden's old liver, it is cut up some but it was neat to see. They have some better pictures in her medical records from just after they took it out. However I had to go to medical records to request those and it can take a bit I will post them when we get them. Erica said not to post the picture we took as not everyone can handle those type of things. Fairly quiet day, just waiting for doctors to write discharge orders for Erica then my mom will come pick her up. Erica hasn't been up to see Eden yet, but should be by in a hour maybe. Saying goodbye will be tough. When Erica was talking about going back downstairs yesterday Eden did not want her to go, she started getting upset even before she said good night.
9:09 PM Time for bed, Erica came up to see Eden again. They had fun. Eden is going to have to put up with dad for the next week, we will see how that goes.
Eden just had her dressing on her pic line changed. She also had to get a new IV today. This time it got put in her right foot.
Dr. Book ~ Eden's regular GI doctor will be back tomorrow. Along with the surgeon. We hope they will both be pleased with the progress the girls have made.
2:47 PM Mommy came up to see me :)
We have matching IV covers.
Daddy did my hair, don't quit you day job dad.
9:30 AM Not too much new. Everything is about the same, they made rounds this morning, and things still look good, so no concerns. They are going to start Eden on some food through her NG tube. I help her for a little bit this morning, while the nurse changed her bed. She got some more morphine, and now it is nap time for Eden. She slept really well last night, and I didn't do too bad either. I got up around 6:30. Watched some TV on the computer and then went down to see Erica. She was up already but it was taking a bit to wake up, she was a bit nauceous so she was having some Sprite and some crackers. I am sure she will give me a call in a bit and want to come up and see Eden. We are holding up well. The boys were even nice to Grandma and didn't get up till 8. With the time change usually they have been up at 7AM.
8:46Pm Up in Eden's room, she is doing good, had a bit of a nap so that is a good thing, hopefully she can sleep through the night. The come in to do vitals at midnight and four so I will probably head to bed so I can get some sleep amidst the interruptions.
There is a giraffe on my head, that is so funny!!!
Erica was getting pretty tired, she was still in the chair but I am sure she will be over to the bed soon. Good night.
Just checked out of the RMH and moved all my stuff up to Eden's room. Eden got moved up to the 4th floor. She is in Room 4002. The tel # there would be 801-662-4002. A way to get a hold of us once Erica goes home on Monday. She is doing well got a lot of her lines taken out. She just has her PIC line in her left arm and an IV in her right hand. Only thing down her nose is a NG tube which he is used to. So she is a lot happier. Course that might be the morphine they gave her a little while ago. A lot quieter up on the 4th floor only thing is not one on one care like in the PICU.
Erica is doing good, she has a milkshake and grilled cheese for lunch. Better than my navy bean soup and french fries I think. She says she will go for a smoothie for dinner as she is not too hungry.
10:07AM This morning I couldn't stand the leaky toilet at RMH so headed to Smiths to buy a new valve. Install it tonight.
Got up to Eden's around 9AM. I guess she didn't really sleep much last night, so when I got there she was sleeping, but then rounds began. They decided to take her Foley out so won't quite know her output now. We will measure in grams since the they just weigh the diapers. This morning though in one hour she put out a whopping 65ml, the next hour was 11ml so I guess she got it out. She has started to have some BM so that is good too. Possibility that she will get moved out of PICU today and to the Immune Compromised Unit. If they do that then maybe will loose the room at RMH and stay with Eden.
Erica was up in the chair when I came upstairs, she had some Cream of Wheat this morning and applesauce so she is moving along too. They are going to transition her to Oxycontin today and try to loose the happy button :(
10:17Pm Back at RMH doing laundry so Eden can have her stuffed monkey. She has 2 bears a giraffe already in her bed, but monkey if a little more familiar and smaller so she can hold him. Her blood test are looking better, levels are coming down. She is also peeing more. One hour she did 22ml so that is like double of yesterday. Pee girl pee. Met a friend from Ricks College outside the PICU his baby daughter has been in for the last 12 days because of Swine Flu - it is serious for little ones. There was another family from Erica's parents ward that has been in too because of it. Sad. We have 3 vases of flowers now in the room - smells wonderful. Thank you!
7:22PM They are doing shift changes right now, so can't go see Eden, here are some photos from a bit earlier.
Erica's Happy Button
Do you really have to do that now?
I am not gonna smile
3:37 Pm Haven't been up to see Eden yet again, but Grandma Lai is here so probably in a bit. I guess the urinalysis came back and it is some blood. The Doctors are not concerned as nothing showed up on the ultrasound. They think that maybe she just pulled a bit on the cathader or something. They will continue to watch the rest of the day.
Erica got her drain pulled out. It hurt, I have the nail marks in my hand to prove it. Pretty wild. I don't want to be there when they pull out Eden's two. Hopefully they give her something to knock her out when they do.
12:25 Pm Eden decided today was the day to have her breathing tube come out. They wanted just to do some trials today, but while the were working she got one of her hands up underneath and pulled it out. I guess enough is enough and she knows when she is ready. She is doing good, the put some oxygen on, but they think she should do fine, and not have to be back on at all. They removed one IV and the drain that was going down her nose, so not quite so many tangled up lines. She is a little more alert, they are waiting for all the droggy medicine to finish through her system. they said maybe sometime this weekend might be able to hold her. They got the dressings off her stomach. It looks bloody but that is just dried blood mixed in with the glue they sealed her up with. The scar will be pretty much the same as before, now it just goes to the left as well about 4 inches. This morning however Eden has started to get some blood in her urine. Three possibilities. 1. Could be a blood vessel that has clotted, not likely though as there is still flow. 2. Some bleeding. 3. Just some broken down proteins. They sent off for a urinalysis and will not more this afternoon. Will also know more once ultrasound makes their way up, I guess they are short handed today.
Erica is still hogging the chair which is fine, although she took my fuzzy blanket. they should be taking out her drain today, and then the pain medication ball tomorrow. She has taken well to chicken broth. We will walk down and see Eden together a little later.
9:06 AM Eden is doing well. Her urine output has gone up a little but about the same. Today they are going to take off the dressing on her tummy. So I will post some pictures a little later. They are also going to try some sporadic breathing treatments today to see how she does with breathing on her own. If it goes well then they will most likely take out her breathing tube tomorrow. Hopefully then she will be a little more alert etc.
Erica is still on liquids today, but hopefully tomorrow be on soft foods. The plan so far is to go home Monday. When I came this morning she was already sitting in the chair. They are going to stop her IV fluid today, she will still have an IV in though for her pain medication. Once she is on some food then move to oral pain medication.
9:19PM Popped downstairs. They said Eden's labs looked good, they will redraw at 11pm. The last hour she peed 12ml. So we hope things will increase over night. I am headed back to the RMH. Good Night
8:38PM Sorry it has been so long in-between post. Especially those of you who were pressing refresh every 20 minutes all day and got nothing new will now.
Eden is doing better she was previously peeing around 5ml and hour this morning, by 4pm it picked up to 10ml, and when I went up before heading to dinner she was peeing around 14ml. So it looks like her kidneys are remembering what they are supposed to do. She opens her eyes on and off but they don't stay open for too long. She got visits from Grandparents and one of her uncles today. Also got flowers from some great-aunts and a bear. Her brothers and other grandma sent a card up to which included a picture of a triceratops. I think they might be watching too much Dinosaur Train at home. She is resting well, the only thing she dislikes is the nystaton medication that has to be given orally.
Erica has been up and about more. She walked up and back to go visit Eden today, has had no trouble getting up to go to the bathroom. they are pumping her so full of liquids you would think she was a race horse. (I'll probably be in trouble for that) She sat in the chair in the room for several hours today, it was a nice break from sitting/laying in the bed. Only problem today was when going to the restroom once today her IV was caught under the pole and came out. No bleeding but we had to call the IV team to put in a new IV. Thankfully they were able to put it in her hand. David on of the Techs joked if the previous one came out he was sure that he could find a spot on her scalp. Erica also got a card from the boys including some funny looking people. I will post some pics, after checking on Eden real quick.
9:13AM Good morning to all of you that read and don't write comments, we love you anyways. Everyone is doing good. I got to the hospital by 8AM this morning so I could catch the doctors while they were doing their rounds. Ultrasound came up early for Eden this morning, so they were there when the doctors were. The ultrasound looked clear so no problems there. Just small hurdles now, all the big ones are gone. doesn't look like they will have to do surgery again at all. Just one day we will get that belly button fixed, for now it helps I guess give everything a little more room. Our only concern right now is for Eden's kidneys to wake up do their job, so they have taken off the diuretics today, and the prograff to give the system a break and hopefully that will help her loose some of the fluid that has built up. They will also limit the fluid intake, and start her IV nutrition (TPN).
Erica is in good spirits, pain is under control. We will try to get up some more. Been up once already, maybe go for a little walk, and then take a wheelchair up to go see Eden. Still gets a bit nauseous getting up too much, but the bed is starting to get old too she says.
5:55PM Went up to check on Eden. She is doing well. Her lungs are still a bit wet, so probably won't get her breathing tube out till Thursday or Friday. She has some great nurse taking care of her. They say she has been real easy. She needs to pee is about the only issue we are facing right now. She was on 3 diuretics at home before and just one now, so her body is not used to the decrease. Once she pee some more that will help with drying at her lungs and reducing the pressure on her skin.
5PM found some cool shirts for the girls. Erica has been up again, now just resting, going to head up and check on Eden.
3:15 Sorry it has been a while. We were waiting till Erica got moved upstairs. Erica is now on the 3rd floor Room 3068 the number here is 801-662-3068, however if I am not here it probably won't get answered. Erica is still kind of loopy with all pain meds, so her phone is off. Other than that she is enjoying sips of water, here and there. I ran back to RMH to get some lunch, and now back on the computer watching TLC reruns. They have taken most of the IVs out of Erica, she just has one in her right wrist for pain meds. She previously had on in her neck, and one on each wrist and an arterial line as well. She also had a NG tube for a day, so she can sympathize with Eden. It wasn't the greatest feeling down the back of the throat.
Eden is doing well the nurses put some yellow ribbons in her hair. She is kind of bloated still, so they started her laysixs to help talk of some of the extra fluid. You could really notice it in her feet, kind of hard instead of soft. Ultrasound went really well, no bleeding so things look like they are on the up and up.
10:10 AM Both Erica and Eden are doing well. They doctors have been by and thing are good. Still need to wait and see on Eden's Ultrasound to see how things are internally. They won't be giving her any food today, just IV. They don't want to add anymore fluid to her body, they would like her to loose some of it. They are going to reduce the oxygen she is getting to try and make he work a little harder in the hopes that this evening or tomorrow she can get the breathing tube taken out. Then tomorrow start her TPN nutrition through IV. She is sleeping now, she opened up her eyes a little.
Erica is doing well, still working on controlling the pain. They have upped her dose to help. She was able to get out of the bed and sit in the recliner for a little while. She had a bit of water, and apple juice. Course it made her a little nauseous so then had to get medicine for that. So she is back in bed now resting. They are sleeping now. So I am playing Hospital bingo on the TV. See if I win.
Looks like ultrasound finally came up after the Dr. put some fear in the them since when the nurse called they weren't very receptive she said.
8:22 Everyone is doing good, tired. Will head down the hill to get some sleep now. Good night princess
7:13 Now have to wait again. It is shift change in the PICU. So can't go in and see Erica and Eden again until 8:00. The grandparents have headed to get the boys and rescue Aunt Carrie. Dr. Scaife and the team of doctors came to talk to us, said that everything went very well. Both patients were stable, and no hiccups during the procedure. They were able to close Eden easily. Sometimes they say that they can't close because not enough room, or because of asides but everything fit fine. With ultrasound afterwards they said everything was perfect, which is not very often they can say that. Tomorrow will be the big day though we have gone through the storm, but still need to get to shore. If there is no bleeding tomorrow it means that connections have worked, and they won't have to go in again, which is common. So we hope for the best. Thanks for all your comments and for checking on us and keeping us in your prayers and thoughts.
I will be staying at the Ronald McDonald House in SLC tonight and spending most of the day I am sure up at the hospital. Then sleeping at RMH.
5:40 Have got to see Erica already. She is doing good, sore. Making sure to keep up on the pain meds. They are closing Eden up now. They have made all the connections. Then just need to have ultrasound check that nothing moved while closing up, and that everything is good. Then she should be in the room next to Erica's in the PICU.
4:14 Erica is in recovery and waking up some. Still have to wait 30 minutes or so before can go see her. They are working hard on Eden. They have 2 of the connections complete already. They are working on the third. Best news is that the portal vein was open not closed as we thought earlier. So didn't have to use other donor veins, so hopefully less likelihood of rejection if only one donor. They said Erica is awake and talking some, but in a lot of pain so trying to get that under control.
3:13 So they are starting to close Erica up, and should be able to see her soon. They have Eden's old liver out, and are starting to hook up all the attachments.
12:37 PM They just came in, said that everything is going well. In the next 30 minutes or so they should have Erica's liver split, and ready for Eden. Eden is a little behind though so it will take a bit of time to finish getting Eden ready before they make the switch. Then they will close Erica up, and should be able to go see her in ICU after about 45 more minutes. So get to see one of my girls in the next 2 hours.
9:21 AM They just took Eden back. It took a bit longer they were waiting on the blood. They were going to start platelets right from the get go. Nurses came in and said that they started on Erica and were just beginning incisions. So far all okay.
7:45AM - they just took Erica back to get started. They were going to give her some feel good medicine to help calm her before they knock her out. I think we could all use some of that to take off the edge. So Eden and I are just hanging out till they are ready for us. Dr. scaife was taking out a Appendix before he starts with Eden today. Met with a lot of doctors, and anesthesiologist. Bigg bummer was they still had to draw labs for Eden twice today because of a mix up of accounts. Maybe it wasn't such a good think to have a bunch of EL initials in the family, things can get mixed up.
It is 6:14 we are up at registration for surgery today. It should begin with Erica around 7:30 and then Eden close to 8:30 - 9:00.
8:00 PM Night before Bishop Hawker and one of our home teachers came over and gave Erica and Eden blessings.
First, sorry for no explanations with the last post. The pictures posted funny and I couldn't figure out how to add text in. Suffice it to say the kiddos had a good time. Eden especially loved wearing her costume and digging through the candy. Don't dare put any in her mouth though. Silly kid!
So back to the title of my post. I have recently become a paranoid germaphobe. Clorox wipes are my new love. I don't know how much good they actually do, but they're better than nothing. I don't think I can handle postponing surgery again so I don't want to risk any germies making there way in. Also, Doug has now taken to showering off all the school kid germs as soon as he comes home. Per my "suggestion". He is a good sport about it, though, because I don't think he could handle postponing any longer either. To top it all off the boys haven't been to school for the past two weeks, and are starting to drive me crazy but it will all be worth it in the end. Just six more days till surgery. We can make it without getting sick. In the meantime, pray we stay free of the sickies and I don't go crazy waiting. :)