Back to the Hospital

Unfortunately we had a little sickness going around these past few weeks. Benson started out with it – a fever and a cough. The cough lingered for a bit, but he seemed to recover quickly. Thursday was Claire's day off from dialysis but unfortunately she didn't have a good day. She was starting to get what Benson had and just didn't feel well. On Friday during her dialysis she spiked a temperature to 38.5°C and that makes them suspect a possible infection in her hemodialysis catheter line.  It is routine that if they spiked a temp greater than 38.2, they draw a culture and start antibiotics in case she does have an infection in her line. 

Along with that routine procedure comes in overnight stay in the hospital. So back up on the eighth floor we went. Room 802-our six week home away from home-was taken so we got put in room 817!  Kree and Amie were our nurses and we got to see many other nurses there we had known before. It was kind of fun to see so many familiar friendly faces and get exceptional care by our good friends.  But still not that fun to be back in the hospital.  Being in the hospital it's just not on my top picks of places to stay overnight! Benson and Jared came out for dinner and we got to go on a little walk around the hospital. The worst part has got to be the lack of sleep we both get while we're there. It's just hard to get any good sleep with vitals every four hours and doctors and nurses walking in at random times just wanting to take a listen to her heart! OK I don't need to rant and rave too much, I'm just grateful it was just for one night! I don't know how I did it for six weeks before! I guess we were just blessed with what we need when we need it. Endurance! We got to come home Saturday afternoon and get a great nights rest that night! Claire is doing much better now and turns out she didn't have an infection in her line, just the fever Benson had passed on to her. That's a blessing. 

Sacrifice

It has been two weeks now since we began our new journey. I first have to comment on how mature my kids are. Little Benson, not even two years old yet, know something about sacrifice. He knows he has to sacrifice for his little sister. Today was the first day I actually had to drop him off at a friends house from 7 AM to 1 PM while I took Claire to the hospital. I bent down when we got to Lance Christensen's house and told him once again that I had to take Claire to the hospital to do her dialysis and he was going to play with Lance while I was gone.  I reassured him that I would be back to pick him up after Claire was done. Just about when he's eating lunch. And the look on his his face right then was one of sacrifice. Not that he was being punished by playing with Lance and having a great time at his house all day. But I assure you that given the two options, he would have chosen to stay in the comfort of his home and play with his mommy and baby Claire instead. He knew he had to do this for mommy and Claire. He didn't put up a fuss about it. He didn't even take a step back towards the car. He just said "OK mommy" and walked into Lance's house with a look of seriousness and courage.  What a sweet boy!

And sweet baby Claire-not even one year old yet. She knows a little something about sacrifice too. As one of her nurses has said, "she is so mature in the way she handles being on dialysis."  Although Claire can't talk yet, her face, her mood, and her expressions can say much more than any words. Now that she is familiar with the nurses who work on her, she is tolerant and even excepting of what they have to do to her. One part in particular where this is evident is when they have to change her dressing on her catheter site. She sits there, still as a rock, keeps her head straight forward, and looks at the nurse changing the dressing out of the corner of her eyes. She doesn't move a muscle. It doesn't feel good to have the bandages and tape removed from her skin. But she doesn't whimper, she doesn't wiggle. She lets them do what they need to do. She watches them every step of the way. She trust them. 

And in these small, simple examples, I suppose I can get a glimpse why Heavenly Father allows hard things to happen to good people.  We all have to learn to become like him.  We do that here in mortality through experiences that refine us and teach us a little something about, in this case, sacrifice!

Hemo Begins

Well things here have progressed to a new level. We started Claire on hemodialysis this week. Heavenly Father always knows best what we need and when we need it. And this is exactly it! Over the past few weeks, I have been able to connect with many families around the world whose children have the same disease and all of them have said, "you have to get your daughter on hemo! That's the only way to get her oxalate level low enough for her to remain safe!"  After hearing that from families who have been there, done that, Jared and I called our doctors and told them that we wanted to start Claire on hemo ASAP. What a great perspective change we got, from really dreading hemodialysis, to embracing it 100%! So last Wednesday, August 6, Claire went in for her fourth surgery and had her hemodialysis catheter placed. She will do dialysis at the Childrens Hospital on Monday Tuesday Wednesday and Friday for three hours each day. Then each night we will still do the home dialysis for 12 hours while she sleeps, along with the 2/day dialysis exchanges.  It is the ultimate dialysis plan, as our doctors like to call it! And so it is! It is definitely a challenge as I try to schedule everything as clockwork as it needs to be. But somehow we seem to fit it all in.

The biggest struggle I've had with all of this is what to do with Benson while Claire and I are gone 4 days a week 5 to 6 hours each day. Right now my sister is still staying with us so she has been able to stay home with him. I have been talking with friends in the ward and many of them are more than willing to watch him while we're gone. But I just feel bad leaving him! I know he'll be watched over and in someways it will make the time we do have together more meaningful. I'm sure it will all work out! 

And so our new normal begins. It seems we've had a lot of new normal this past year! We are excited Claire is on hemodialysis. It was a little bit of a rough start on Monday. Long story short, and lots of crazy explanations aside, she ended up needing a blood transfusion Tuesday and Wednesday because she didn't have enough blood in her to start out with. And then hemo pulls 10% of your total blood out at one time to clean it. So she needed more blood initially to be able to tolerate taking the blood out of her to clean. After figuring that out the hard way, we finally got her blood level built up enough so she is able to tolerate things much better now. We are also giving her EPO (a medicine to help her body produce more red blood cells) 3 times a week so she will hopefully be able to create enough blood herself so she won't have to be able to do that every time. I am confident the nurses will get all the kinks worked out and things will begin to run more smoothly in the coming weeks. Claire still has a hard time going to the hospital. Just the looks of seeing a stethoscope, scrubs, and tennis shoes brings tears to her eyes.  Poor little one. What a trooper! She has gotten more used to it though even in just the past three days we've gone.

New adventures. New challenges. New opportunities. Here we come!

Hemo-Dialysis Catheter

It came upon us quicker than we had expected. Mary, Claire's dialysis nurse, called Tuesday morning and said they would like to place her demo catheter tomorrow. So today was the day. Dr. Karr is the surgeon who placed her catheter. He is also the transplant surgeon and as Mary said, he is the best surgeon in the hospital and they would only use the best for Claire. She is still so little and they need to make sure they get a good line to work with. Or the whole hemo thing would just your nightmare.

The surgery was at 9:30 this morning. Claire was not happy at all at being at the hospital. She is all too familiar with the hospital and those funny looking people in scrubs and scary instruments that touch her body. All they have to do is walk in the room and she would just start screaming! Touch her, and the aggression just got worse. All she wanted to see was mom and dad! She didn't like wearing the hospital clothes they put her in and she especially wasn't happy when they had to take her for my arms back to surgery.

This was the hardest surgery for all of us simply because she was so much more aware of her surroundings. She knows that happy things don't happen when you're at the hospital. It was hard for me too, to see her crying like she was. She pushed away every hand that came near her just to prove to all of us who was really in charge! We never did get a blood pressure reading from her. She won that battle! Even during the recovery, in my arms, she didn't want anyone else in the room, looking at her, and even speaking sweet words to her. Except mom and dad. And all I can say is I don't blame her.

Claire is 10 months old, soon to be 11, and now has had four surgeries. She also now has three appendages to her body as well: the peritoneal dialysis catheter in her lower abdomen, the hemodialysis catheter by her upper chest, and her G-tube in the stomach. That's a lot to take in for a little one less than a year old! She's been through a lot and is an amazing trooper. She is a fighter.

We still don't have certain plans as far as what her hemoglobin schedule will be. We will give her until Monday to recover and then start up. Possibly could be up to five or six times a week. Potentially do peritoneal dialysis on the days she doesn't do hemo??  

I'm really grateful that I've been able to get in touch with the OHF, oxalosis and hyperoxaluria foundation. Through this network, I've been able to connect with other families around the world who are going through the same thing. I have found out that all of the patients who have PH1 (primary hyperoxaluria type one) are on hemodialysis. The peritoneal dialysis simply doesn't do enough to remove oxalate from the body. Hemo still doesn't get rid of all of it, but it does a much more efficient job than peritoneal dialysis. They are almost all on it either 5,6 or 7 days a week. So talking with these other families and finding out this information has made it a lot easier for me to accept and even embrace the idea of Claire doing dialysis at the hospital many days a week. Over the past week, Jared and I have become more anxious to get Claire going with hemo, so we are grateful we were able to get her catheter placed so quickly. And we are almost insisting to her doctors that we do dialysis a minimum of five times a week. We truly want to do whatever it takes to preserve the precious parts of Claire's little body. 

The Lord has blessed us with the sweet miracle girl. And what a sweet thing it is for me to remember that one day, Claire will be made whole and complete. And it won't be through tubes and machines, although we are ever so grateful to have those here in mortality. It will be through the great Physician, the Healer and Lord of us all. 

Claire is recovering well from surgery. I'm sure she felt a sigh of relief as she was finally safe in her car seat, and even safer as she saw the sweet face of her big brother back at home. OK maybe not toooooo safe as she looked into his eyes...she's always got to be on guard when he is around because he just loves her soooooo much and smothers her with that love! She went to sleep around 5 PM and hasn't woken up yet. It's 9:24 PM. She's had a long hard day and I expect she's out for the rest of the night.

What blessings we have received this day.

Normal Day-What it's like

Days get to be so normal and predictable for me that I forget that those normal days aren't going to last forever. So I thought I would write about what a normal day is like for us right now. Just so when it's over, I won't forget what used to be so normal about it.

I wake up, sometimes before Benson gets up and go downstairs and exercise. But since Hoff has been here, I haven't been doing that. So Benson usually comes into wake me up when Jared opens the garage door to leave for work around seven or 730. (oh but before that, Jared kisses me goodbye and asks me if I need the car today. If not he takes it to work.) Benson and I come down and eat breakfast, Cheerios for him, Life for me, and usually an egg. Then we usually go shower before Claire gets up, or if it's not a shower day, I usually clean up while Benson plays. I also get Claire's five medication's ready and her morning milk. 

Claire usually wakes up around 9 o'clock at which time Benson and I play in her room until she's done with her dialysis depending on how early we started at the night before. We have to get the 12 hours in. I take her blood pressure, heart rate, give her her meds (Benson helps me push them through her tube) and give her milk through the G-Tube.  When she's done with dialysis, I weigh her, wash her face (especially her left eye since she still has a plugged tear duct) and get her dressed.  Then I clean up all of her dialysis stuff and get the new set ready for the day. Then our morning officially begins as everyone is ready for the day. It's usually 10 o'clock by now we play, we clean, we do whatever we do, and then Claire takes a nap around 11. Benson and I play until dad comes home for lunch around noon.  

It's a great break up for my day to be able to have Jared home for lunch. It's fun to all be together. After lunch, around 1 o'clock when Claire is waking up, we do her first day exchange for dialysis. This consists of hooking her up through her peritoneal dialysis catheter, letting her drain whatever extra fluid was in her from the night before, and then filling her back up again with the peritoneal solution.  Then we are able to disconnect her and enjoy a few more hours of the day until the next exchange. It only takes 10 to 20 minutes to do each exchange. After her exchange, we usually run whatever errands we need to do for the day before we attempt to put Benson down for a nap around 2:30. He's almost to the point of not napping, but on the days he does, it's great! I give Claire her second helping of milk through her G-tube and we enjoy some one-on-one time while Benson is either napping or having quiet time.

We do Claire's second day exchange between 4 and 5 o'clock and then enjoy the evening with Jared since he's not in school for the summer. It's been nice to have him home. I'm going to be sad when he hast to go back to school in the fall. We all eat dinner together and Claire gets her third serving of milk. I also attempt to feed her baby food in the highchair while we all eat her dinner. She takes a few bites (probably just to make me feel good) and then just enjoys watching us eat.

I try to slow down with the household chores I've been working on through the day at night time and just let all of us enjoy being together. Sometimes we'll go on walks in the early evening before we start Claire up on dialysis for the night around 7:30. She gets her fourth serving of milk and her nightly meds then. We change her dressing on her catheter, do her blood pressure, heart rate, and weigh her again before starting up. Currently she's on it for 14 hours through the night. Benson comes into her room to get ready for bed, as she is really not ready to go to sleep by 7:30.  Like to stay in her room and keep her company and play with her as long as we can until she's ready for sleep.  Benson is great at entertaining her!

One of us puts Benson to bed while the other one stays with Claire and gets her ready. We try to have the deed done between eight and 8:30, so Jared and I can have some time to ourselves. We clean up dinner, work on the computer, and every now and then, get a scoop of chocolate ice cream and waste some time watching TV. I always feel guilty after that, because it really is a waste of time, but somehow the ice cream made it all worth it!!  Jared and I try to be up in our room by 10 o'clock. We start Claire's nightly milk feeding at 10 o'clock.  This is set on a pump that runs slowly all night long.  Then we have to set our alarm for 2 AM to put a fresh dose of milk in to finish the night off. She gets 9 ounces of milk through the night on a pump that runs for eight hours. Before bed, Jared and I read scriptures together, pray, brush our teeth, floss, and talk about the day.

In a nutshell, that's what our normal days have been looking like for the past few months. Always changes, excitement, and adventures to be had.  But for a typical schedule day, that's what it would be.

I have a feeling that this normal day we've been having lately will be changing real soon.

And the oxalate number is...

70.8.  The words that came to my mind are, "but if not." One thing I do know about Claire is that Heavenly Father is very aware of her. I have complete faith in that. He knows what her needs are and what the needs of our family are. If it is not his well to have her oxalate at a level where we can keep doing dialysis at home, then I will obey. We will do whatever it takes to keep our baby girl safe. If that means going to the hospital three times a week for dialysis then I will do it gratefully. We will see what the doctors have to say next week and go from there.  

We just got back from our Waite family reunion in Zion National Park. Grandma Waite provided everything for each of her descendants: food lodging and a fabulous time!! We hadn't seen many of our family members for over a year, so it was great to be able to be with them and renew those relationships. What a sweet, loving Grandma we have! You know, whenever I am tempted to compromise some thing, just a little things, or not complete some thing as fully as I am able to, I just asked myself if that is what grandma Waite would do.  Undoubtedly, the answer is no. And I go and do the thing right away and at the right time and in the way I know Grandma Waite would do them. She is such a great example to me of diligence, love, hard work, and as close to perfection as I know! I love her and I'm grateful to be named after her. How blessed I am to be her granddaughter. I love spending time with her this past weekend!

Hoff (Aleena) came home with us after we spent some time in St. George with Dad and Diana. She needed a change up from her normal life in Ogden and I always love the company and help that anyone is willing to offer! Hoff is always such a joy to have around. I hope I will have the eyes to see her sweet Christlike example as we spend time together the next few weeks.

Final Chance

I took Claire into the Kidney center today and it was a great visit. Long…from 1:00- 4:30...but good. Mary, Claire's nurse, taught me how to do the daytime exchanges that we will need to do twice a day from now on. The plan is to do 12 hours of nighttime peritoneal dialysis, from 8:00 am till 8:00 pm. Then do a peritoneal dialysis exchange during the day at noon and another one at 4:00 pm. The exchanges are simply a mini dialysis where I hook Claire up to the dialysis machine and it fills her peritoneum up with a sugar solution. An exchange is made where toxins are taken out and replaced with this solution.  Then I am able to disconnect her and do whatever, wherever. Four hours later I hook her up again and drain it out and fill her up again. Then I am able to unhook her until the nighttime dialysis begins at 8:00. Before her nighttime treatment, it will drain her again and then start the normal 12 hour dialysis. The theory is that the more times she is on dialysis, the more oxalate that will be removed from her body. So in every way, we are optimizing her dialysis... With the fill volume, the last fill volume, and the overall dialysis time. Through faith, fasting, and prayers, Claire's oxalate level will lower, if it be God's will for Claire and our family.