Lydia "passed" both of her appointments this week with flying colors.  The nurse at the kidney clinic was able to get a good blood pressure so the doctor started to wean one of the blood pressure meds.   I felt a little anxious on Tues. that her blood labs or something else might show something that would keep her there.  I felt relieved when we were driving home.  Lydia was happy to go home also.  For as much anxiety as I get about being there, she must have much more (and rightfully so)!  She was instantly unhappy when the medical people would touch her.    Dr. Book said  she was doing great compared to where she was a few weeks ago.  The wound from her incision is continuing to heal, her voice is getting stronger and her liver enzymes are getting closer to normal.   Yeah,  keep healing Lyds!  You are a fighter and a winner!!

8 Days Home - Yeah!!

It has felt fantastic to be home together for over a week.  The kids had fun dressing up in Alyssa'a dress-ups today.  Lydia's throwing up drastically decreased every day since Wednesday.  She didn't throw up at all today.  She also took a longer nap today than 20 minutes. Yeah!  Spencer, Alyssa, Dallin and Parker are very good sports about not getting as much of our time because of the time that Lydia requires.  They love her very much and are good helpers with her.  I am so blessed to have such great children!  I have worried a lot about not meeting all of their needs during the past year and a half.  Hopefully in the time ahead I will be able to work on and strengthen my relationship with each of them.  Tomorrow Lydia has an appt. with the kidney doctor, then a G.I. clinic visit on Tues.  Hopefully after that we'll be able to just hunker down at home again for several days.  Her immunosuppression meds are really high right now so we're keeping her home and away from germies as much as possible until they can wean those meds more.

Too happy to nap

It has been wonderful to be home doing the "regular" home things the past couple of days.  Our colds are on the mend and we seem to be getting back in the groove family life at the Christiansen home.  I have loved being able to do chores with Parker and read stories to him.  I have loved being able to listen to how the kids day was at school and be with them for the evenings.  I have loved chit-chatting with Brian on the phone at lunch time, getting a welcome-home-from-work kiss and enjoying excellent foot and back rubs from him.  I have loved watching the kids play with Lydia and make her laugh.  I think she is having so much fun here that she doesn't want to take naps.  She napped for about 20 min. yesterday and today, but at least she is sleeping good at night.  She had a rough throw-up day yesterday.  We had tried switching her to a different formula and she threw up continuously causing her to get dehydrated.  I thought we'd be spending the night at PCMC last night, but gratefully her Dr. Book and the nurse gave us a good plan for trying to rehydrate her at home.  It seems to have worked.  She has had a much better day today.  Yeah for being home!  

Looking Good

Well it has been an interesting weekend. Lydia has been doing great. The rest of the family have been going through colds. Janene didn't feel good yesterday. We are all on the mend today with slight traces of it left. We have been praying that Lydia doesn't get it.

Janene took Lydia in for her checkup today. They think that Lydia is doing good. We have had a real hard time getting a good blood pressure machine that works for her. The doctors tried a bunch of times and couldn't get a good reading today either. She didn't like being back to see the doctors. She threw up twice there because she was mad at them taking her blood pressure. The doctors decided to just not worry about us trying to take her blood pressure at home. That is wonderful because she hates it and it is one less thing for us to do.

She still takes quite a bit of time to take care of. Hopefully that will change as the number of medicines goes down. We are down from 17 to 15 medicines now. She has a bad case of diarrea. It doesn't help that almost every medicine she is taking can cause diarrea. This has made her bottom really sore. That has been the worst thing that Lydia has dealt with since she has been home.

She wasn't very sure of sleeping in her bed the first night. She has warmed up to it now. She likes to sit up and play on the carpet with her toys. She gets tired of sitting up. I can't blame her since her abdominal muscles are week. We lay her down and she roles over and scoots around.

She has been happy and laughs a lot. The kids will do silly things and she will laugh at them.
We are glad to have her home. She gets stronger and stronger each day.

HOME!!!

I don't know that I can quite put into words my feelings of yesterday, but here's a try.  It was a very special day.  I'll mention a few highlights.  Lydia woke up free of fevers and happy so this meant she could come home.
Dr. Book, who is Lydia's liver doctor, paid us a farewell visit.  We briefly talked about the long, scary road Lydia has had over the past five weeks and we shed some tears together.  My heart was full as I thanked her for what she has done for Lydia.  I am so grateful for the great well of knowledge that she has.  I feel very blessed that she is Lydia's doctor.

Lydia came home with 17 meds, an NG feeding tube, wound care supplies, oxygen and a blood pressure machine.  I am very grateful for the GI team working so hard to make it so she could come home with these things and not have to wait until she was less complicated.  They worked hard to simplify her care at home and make it as cost effective as possible for us.  They have really gone the extra-mile for Lydia and our family.  

Lydia's face lit up when she saw my mom and Parker who came to pick us up.  She was cheerful as she experienced a lot of "firsts" (in 5 weeks).  My mom got her dressed, I carried her down to the first floor where she got to see the fishies that she loves, I carried outside and put her in her carseat in the car, she came into our house and got lots of loves from the kids, she sat on the carpet and in the highchair and played with her toys.  The only thing she seemed really unhappy about was going to sleep in her bed.  She just wanted to keep playing.

As we turned up our road, I was overcome with emotion as I saw the yellow balloons dotting the street and many balloons and yellow ribbons decorating our house and yard.  Thank you dear friends for sharing in our excitement with such a loving welcome for Lydia.  I feel like she doesn't just belong to us, but to all of you who love her so much.  She has worked her way into many hearts.

Lydia and I walked into a spotless home (thank you Mom, Brian and kids), we enjoyed a delicious dinner together (thank you Nelson's) and we revelled in being back together as a family for the evening.  

She is Comming Home

Right now Janene is finishing packing and getting the final instructions on the medicines. They have been getting Lydia dressed and ready to come home. Depending on traffic she will be home in a couple of hours. We all can't wait. It is going to be a joyous reunion. Many have been helping us get our house ready and bringing meals for us. We thank you all.
I didn't dare post that she was coming home the last few days because it hasn't happened every time we thought it might. Our hopes have been dashed upon the rocks too many times. I had to wait to post until I knew that she was truly coming home. Hopefully I can post pictures and more later. That depends on her medications. It will take a lot to stay on top of how many she has to take for a little while. To be continued.

Another Fever Again Delays Her From Comming Home

She was supposed to come home today. That didn't happen. She got another phantom fever again last night. So, they took cultures again. This mean that they need the cultures to grow for two days. So most likely we will be there another few days.
I got a call when I got home. She might be able to come home tomorrow even though we won't know the results of the cultures. I called the transplant coordinator this afternoon to do some more questioning. We really feel that this phantom fever that comes every once and a while will never be found. I asked a lot of questions trying to get some more reasoning of why she can't come home. If she has to go back she has to go back. That won't hurt us any. We feel that she might heal better at home, and that our sanity will come back.
She is going to come home on 18 medicines. The drug lady said that might be a record. Six of them are blood pressure medicines. Many of the drugs she will be able to get off of after a little while. I know that 18 medicines sounds like that is the reason to keep her, but she really is doing good and getting stronger and stronger each day. We feel she could do it faster at home. She sits up in her crib to play now, and is tolerating being held better.
We hope that tomorrow will be the day but every time they say we can leave it never seems to happen, so we will see.

Out of Small and Simple Things Shall Great Things Come to Pass

Lydia has made great strides in her physical therapy in the past two days. She has pretty much been sedentary for nearly 5 weeks so most of her muscles need to be retrained. On Sunday morning she was able to sit up if someone help support her back, by Sunday afternoon she was able to sit without someone supporting her back. When the physical therapist came in on Monday morning, she was trying to get Lydia to roll over to her tummy and to stand and put some weight on her legs. Lydia was not much interested in doing either at the time. After the therapist left, I was able to get her to put some weight on her legs for a few seconds and about an hour later, she began rolling all over the crib (like she used to do) to find the position she wanted to be in for her nap. That was so good to see. She has never been much interested in being on her legs so this skill will probably be longer in coming, but I'm sure will come with time and effort.

As of yesterday, the two hold ups on her coming home are her need for oxygen and elevated blood pressure. Hopefully those two things will be brought under control soon so she can go home. The doctors are adjusting medications in an effort to remedy those problems and are hoping that she can go home by Wednesday.

I saw a much friendlier Lydia on my stay with her this time. She was giving high fives and knuckles to all of the doctors and nurses that came into the room. She was waving bye bye to them as they left the room and in some cases she was waving bye bye when they were doing things to her that she did not like--I think that was her way of saying, I don't like what you are doing and it's time for you to leave!!

Janene is with her now and hopefully more small and simple things are taking place so that great things can take place soon (like her coming home and being able to be with all of her family, being able to learn to crawl, walk, and eat, and having a body that works well in all ways). What a precious child she is.

Thank you again to everyone for your love, concern, and prayers for Lydia and the rest of the family.

Grandma Christiansen

If No Fevers She Should Come Home Soon

Lydia has been doing really good. The biggest problem that she has had is that she throws up really fast if something goes down her throat. We have to give her a medicine that is swabbed inside her mouth for thrush. That gages her every time. I asked the nurse if we can find out about another medicine that can be put in her tube for thrush instead of in her mouth. We will see what they can do.

Her wound split a little bit. It looks pretty ugly. The doctor said that this is the least of our concerns with how many other bad things she has gone through. I asked him if her scar will be worse now. He said yes but that he would fix this later in a year or two when he fixes the stomach hernia. Since he could only close the muscles up 90%, that 10% opening could cause the stomach to hernia out right where the wound has split. She will just need a minor surgery to fix it, and he would close up this skin better to get a better looking scar.

My mom came down today to switch me at the hospital. It was nice because I was able to go home and go to church with the family, and have a nice day with the family. I thank her for doing this especially since it is Mother's Day and I am the one that should be doing something for her.

A therapy dog came around today to see Lydia. It was a huge black dog with curly hair. Lydia wasn't sure what to think of it because it most likely looked like a bear to her. She was happy and trying to look at it as the dog was leaving the room.

If there are no fevers she could be out of there early this week. We can't wait. She is at the amount of food that they want to put in her daily while she is home. She doesn't have anything hooked up to her PIC line. She will keep the PIC line for blood draws at home. All of her cultures have been negative. She takes all of her medicines through the feeding tube instead of IV. She is set. We will just have to teach her at home how to eat and wait for her throat to close off correctly while eating and drinking.

Janene is doing good. She is a real trooper and a wonderful wife. I never will be able to tell her how special she is to me. She still has pain but it is minor. She described to me that there is always a constant small pain and that it hurts when the wound is touched, or she moves funny, etc.

I am trying not to get my hopes up so that means she will really come home soon. If I get my hopes up Murphy's Law will come around and she will have to stay another week. Thanks for all of your prayers for Lydia, Janene, and our family.

Happy Visits and Excellent Fine Motor Skills

It was another great day with Lyds yesterday.  She is happy and interactive most of the time.  We enjoyed a great visit from Uncle Aaron, Aunt Lyndee and cousin Tessa on Thurs. evening.  We were surprised by another great visit on Friday from Kerin and Bernie, our neighbors and dear friends.  She was really happy to see all of them (but especially happy to see the guys).  She has seemed to prefer guys over ladies for quite a while.  Last night her nurse was a guy and she was even unusually happy with him (for being someone in scrubs).  Then, of coarse, she was happy to see daddy when he got there.  She patted his shoulder like she used to when he held her.
The doctor said she will get another swallow test in a few weeks to see if won't go into her lungs anymore.  Until then it's nothing by mouth, so we'd better get creative in distracting her from pointing to the sink faucets.  She's a good sport though.
Her fine motor skills are definitely back up to par since she figured out how to pull off the steri-strips on her incision. She pulled most of them off leaving part of it split pretty wide and oozing some blood.  I was pretty worried about it, but the surgeon resident who came to put more on said that there were three more layers of suchers below the top layer that they removed so the skin was still healing well.  He also said that the split open part is lower risk for infection than the closed part of the incision because it's a natural way of healing wounds.  Our bodies are truely miraculous!  Later on I thought she was asleep, so I took a nap, but  when I woke up she was asleep but she had pulled off the bandage and new steri-strips that the resident had put on.  Silly lady!  We decided to put a bigger bandage after that and Brian said it was still on this morning.
P.S. Sorry about the scarce pictures.  I forgot the camera one time, then this stay it was out of batteries.  Brian took the charger down so I'm sure he'll get some good ones.

What a blessing for me

It was such a blessing to be with Lydia the past 24 hours. She looks so much better to me. What a difference than less than a week ago when we saw her last. Her color is much better, and her bruises have faded a lot. She was even more alert, and she radiates a spirit that is angelic. I love her sweet smile! I really was blessed just being with her. She was so good. After Janene left in the afternoon yesterday, Lydia played and was happy all evening. I thought she was tired because she seemed sleepy, yet she kept going until after 10:00pm. It was just fun having a one on one night with her. Today was a busy one for her. I can't believe how well she accepts all that is happening to her. I guess she has learned she has to accept doctors, nurses, lab techs, therapists, radiologists, etc. etc. etc., because for the most part she let them do what ever without a word of complaint and then when they said goodbye, she would sweetly wave good bye to them. In every case it would elicit a big "ohh" from all the hospital personel. She has truly won everyone's hearts. She saw many doctors, nurses, and specialistst today. They needed another blood culture which meant two pokes. She cried while they did it but was smiling again once they were through. The poor tyke has no more good veins to poke it seems. The sad thing for me is to watch Lydia cry. You can't hear her cry, or laugh for that matter, because she still doesn't make any sounds when she laughs or cries becasue of being intubated for so long in the PICU, but you know she is crying all the same. They also did a swallow study on her today. They wanted to see if when she swallows, it is going down the right tube and not into her lungs. Unfortuately, they found that she is aspirating the fluids when swallowed or in other words it is going down the wrong pipe. This means that over time she will have to trian her body to eat and drink correctly.  Right now it means no more ice chips which is really sad for Lydia becasue she "luuves" ice chips.
One of the sweetest moments today was when she got her stitches out. She was a real trooper, and again won the heart of the resident who took them out. Some of the stitches were in pretty deep and he really had to tug and pull to get them out, but she didn't cry, she just made little grunting moans and tried to kick his hand away. The doctor kept saying how sweet she was how impressed he was that she was being so good. Then when he was leaving, that little wave really got him.
I got to hold her on my lap and snuggle her and I sang her a funny song it made her laugh. It was heaven. I have a book that is called "What is Heaven?" I read it to her and I couldn't agree more, Heaven is just having you, Lydia. I love you little "Angel baby"! Grandma Peterson

It's so fun to have Lydia getting more back to herself.  She is waving, kissing, laughing and all around acting more like the fun Lyds we know.  I much prefer this than the paralyzed and sedated state she was in for so long.  Physical Therapy has been coming to work with her for a few days.  She sat up for a few seconds yesterday without us holding her.  Yeah!!  Keep it up, strong lady!!  She is still getting fevers off and on, so they will do more cultures and put her back on an antibiotic that they took her off of.  She still has some fluid around her lung that they may drain.  She is in good spirits though and fun to be with.  Grandma Peterson stayed with her last night so the rest of our family could have an evening together.  Thanks mom!  It was great, but we sure miss having Lydia with us.  

Ups and Downs

Lydia did good most of the day.  Her medicine schedule got out of sync becuase of the procedure that they were going to do on her at 8:00 am, and it ended up being at 11:30.  It may have caused a major withdrawl, but I feal like the major withdrawl really came from an overzelous nurse.  I asked the tech to not take her blood pressure because she had just fallen asleep.  She said I needed to talk to the nurse about it, so I did.  Her blood pressure was high but not very high, so we agree that she would give her another thirty minutes of sleep then check her blood preasure agian.  Instead she just gave her the blood preasure medicine.  I should have stopped her but I wasn't thinking very good at that time.  The other nurse and I think that caused her blood preasure to drop too far.  She went into a panic with chills, eyes not dialating, and cold hands and feet.  It took some work for a good 45 minutes to an hour to get her to come out of it.  It has been really hard when different nurses take over.  I know that they all have to live life and go home but they all seem to be on a different page about there patients when they come the first time.  It seems like we have to retrain them on Lydia's likes, dislikes, medicines, stats, etc.  I am trying not to be negative because we are all different and trying to do the best that we can, but it is unfortunate when things like what happened tonight happen.
I came home tonight.  Janene will spend some time with Lydia.  Lydia is at that stage where she is bored and needs more attention.  I decided that I need to get back to work and that Janene and others might have to take over more.  I am going to go back to work tomorrow.  It willl be a good change.  Hopefully it will help with my emotions.  I know I have to do it some time so I might as well do it now.  Wish me luck.

Brian

She Is Doing Good

Lydia is doing good. She hasn't had a fever in quite a while. Some of the doctors think that we will never know why she gets them. It could be about anything. Reaction to medicine, her body healing, anything.

The physical therapist has been putting her in a chair to sit her up and doing stretches with her. They want her to sit up today and play in her crib. She has to get her PIC line and her feeding tube replaced today. The feeding tube slipped out of her intestines a little bit. This caused some of the medicines to leak back into her stomach and she threw them up yesterday once. Other than that she has been doing great out of the ICU. I think she is a little bored. We have to get her new toys and music to keep her entertained.

She got to see her family last night. That will be the best therapy that she can ever get. I really think she will do better when she is finally at home and everything is normal again. We all can't wait for that day. They are saying at the end of the week we should be able to go home. Hopefully that will happen. I have learned not to get my hopes up from Sunday's experience.

OUT OF PICU

Lydia did get moved out of the PICU to the Immunocompromised Unit this afternoon. Yeah!!!  We feel so grateful and so happy that she is doing so well that she can move to the next step in her hospital stay.  When she was so critical a couple of weeks ago I thought that it would be so wonderful if she could be out of the PICU by May 1st, but I really felt like there was very little chance of that happening.  I had many doubts and worries about her recovery.  I know that anything is possible through Heavenly Father's power, but waiting to know his will is sometimes very hard for me to do.  I was impatient.   Now, it is May 2nd, just one day past what I wanted so badly, and my heart feels so happy and grateful for her healing.  I am very grateful for the countless tender mercies Heavenly Father has blessed me and my family with.
I attended our multi-stake Stake Conference today that was broadcast to us.  President Henry B. Eyring spoke about living among a Zion people.  I feel like our family lives in the midst of a Zion people.  We have been encircled about with loved ones, friends, strangers and a ward that are a Zion people.  These are selfless, sacrificing, unjudgemental people who, despite our faults and weaknesses love, serve and support us in ways we couldn't imagine and more than we have room to recieve.  Just as Pres. Eyring spoke of praying with his wife to know where there family should settle near Salt Lake, Brian and I prayed to be guided where we should move a couple of years ago.  We felt very drawn to and good about buying our current house.  Since then, I have often wondered if we made a wrong decision because of the many bumps in the road we have had in trying to fix it up how we had planned.  Looking back, I feel we were guided here not just to fix it up quickly and settle comfortably into smooth sailing life.  Instead, Heavenly Father knew that even though we were about to face some of the biggest challenges of our lives (so far), He was placing us among a Zion people who would help us through it.  The people in our ward and neighborhood have been an incredible strength and help to us along with many others in our lives.  After moving out of our previous ward, I sorely missed the friends and truely good people that we were surrounded by there.  I still miss them, but I have found dear friends and truely good people here also.

Lydia's Doing Good, Dad is Emotional

Lydia was supposed to go to the Imunal Compromised Unit today. They talked about it all morning and then the nurse took her temperature in one ear and it showed a fever. She told the deciding nurse and that turned everything around. It was a major let dwon when my hopes were up to get out of the ICU. I asked the nurse, for my sake, to take her temperature five minutes later and she did. She took three different temperatures. Both ears and her armpit. All three were lower than the first one five minutes before. That wasn't enough to be ok and she is stuck her. Maybe later tonight they will let her out of the ICU is now what I here but it was quite a blow to me at the time. I had already packed everything up and was ready to go. That of course set me up for the emotional brakedown and tear session. The nurse was kind enought to let me vent since Janene was at church and I couldn't call her. Maureen called right at that time and that was helpful to talk to her.
Lydia is doing really good. They just can't figure out why she has these small spikes in temperature. Her lungs, kidneys, and liver are all working good. She breaths raspy but that is just gunk in her throat not her lungs. They are going to do a CAT scan on her abdomin with some contrast going in her just to see if they can find a hidden pocket of infection. In a way I hope they find something so we can be done with this wild goose chase. That will be done today and if it is negative they may move us out of the ICU.
Lydia's personality is totally back since Thursday when the kids came to see her. She is giving every nurse the evil eye like normal, she laughs and smiles at only family, she plays ball, and snuggles her bear. The other procedure that they will most likely have to do is put another PIC line in her other arm. The one they put in a few days ago is right in the crook of her arm so she doesn't have full movement. It is kinking the line and bleading a little. Since we need that line to feed her when we go home we want a good line and not something that just makes us come back later to fix.
I have to leave more in the Lords hands and quit worrying about so much. I have my moms worry geans in me. I know everything will work out but as this drags on it is easy to let my emotions in and worry about things that I need to not be concerned about now. My stallword joking attitude has dissapeared more and more each day. Spencer has been very emotional about getting our family together and normal, as canbe, agian. I think I am as emotional as him and want the same thing. It has been hard. It is worth it for Lydia, but hard.
I think that Janene is truly the stallword one. I am not good at expressing it to her like I should. Without her I would be a wreck. Actually this experience proves it. I am more and more a wreck the longer I am away from her. I love her so much in every way especially for the sacrifice she has done in giving her liver to Lydia. I miss her and my family. Thankfully Lydia has been playing with me now to help reduce my selfish needy emotions. I need to keep working on unselfishness an be more in control of giving out encouragement instead of needing it so much. One day I will be better I just have to keep trying.

Disconecting

They took as many things out of her as they could yesterday. Now that they have the PIC line in her, they took out all of the other IV's, and they took out the drain tube under her lung. She only has the PIC line and the breathing tube into her nose. They are lowering the setting on the air flow also. Her lungs are still the hold up. They have been using a tool that pounds on her chest to loosen the gunk then they suck her out. She really doesn't like a tube stuck down her nose or her mouth to suck out her lungs, but who would. Hopefully she will soon get the gunk out and stay out. It just keeps coming back. If it wouldn't they would move us out of the ICU. It is switch off day so Janene is coming home and I will go down for a few nights. Janene has been doing so good since the surgery. She is a real tough cookie. I would still be laying in bed wanting her to serve me all day long. No wonder that women were made to have babies.