Briten

My Life

Good Numbers!

Wow, I can’t believe it has been over 6 months since I have posted on here. Life has been busy. I have a long list of posts that I should write: a kitchen remodel, trip to Denver, short trips we took of the summer etc. But the one I feel I should write is about Ian’s last visit to his doctors at Seattle Children’s. This blog was not intended to be just about his ‘kidney journey’ as I have categorized the posts, it was supposed to be a bit of a journal for my kids to read one day. Ian’s kidney journal seems to be what I write about the most. Probably because my memory fades fast and I don’t want to forget the details of this journey. Also, last week was the 2 year anniversary of Ian’s surgery.

It is true that time heals all wounds, or at least most. Last year I was pretty emotional thinking back on his surgery. This year not as much. I can still remember the emotions but I don’t feel them the same. It was an amazing experience that I will never forget. I will never forget how scary it was to send my little boy off to the operating room. How it felt to pray with all my might that he would be okay and that they wouldn’t find anything wrong that couldn’t be fixed. I will never forget the peace I felt or the relief after hearing the report of the surgery from the doctor. I will never forget the horror of finding out that my youngest had the stomach flu as we were driving Ian home the day after his surgery. I will never forget the prayer of thanksgiving when we realized that Ian had probably escaped getting it while he was healing.

Well, with that said, his last appointments to Children’s were in October, yep, October. I am just sitting down to write about it😦 Epic fail! But since the only one I’m accountable to for this blog is me…. well, I’ll let it slide🙂

Feeling bad that I didn’t schedule his appointments earlier, I opted to just get them done as soon as there were appointments and not worry about them being on the same day. So he had his renal ultrasound and visit with the urologist on October 9th and then his blood work and nephrology visit on October 29th. I didn’t post after the October 9th visit because I wanted to wait until we had the info from nephrology. Then life got busy with the holidays and the news turned out to be good so  I didn’t feel as rushed to post it. I should have felt more of rush so that everyone knew the good news.

Without further ado: The ultrasound was good. The right kidney grew within normal limits. The left kidney did not grow. This was a little disappointing because last year it had grown, although we are not expecting it to. Not growing is actually good news because the doctors actually expect that it might shrink as time goes on. The visit with the urologist that day was uneventful. Since Ian has not had any UTIs and the right kidney is growing properly the visit is pretty boring. Which is good! I had thought that he didn’t need to see us unless Ian gets an UTI but he still wants to see us yearly. I don’t know when/if that will change. Probably after he turns 7 since most kids tend to outgrow renal reflux by then.

Ready for 'pictures' of his tummy :)

Ready for ‘pictures’ of his tummy🙂

The next appointment was definitely more exciting but then again anytime there is a blood draw involved with a child I’m sure the appointment is ‘exciting’. Ian does not take this part of his appointments very well. He was pretty upset so the tech decided to go and get some help to hold him down while she did the blood draw. When she left the room I asked Ian if he thought we should say a prayer. He said he did and wanted me to say it. I prayed for comfort and peace for him. That he would be able to calm down and feel our love for him as well has how much he was loved by his Heavenly Father. As I spoke I could feel his body relax. He was sitting on my lap and I had been tightly holding on to him so that he would not run from the room. He had been crying and , yelling “get me out of here”. By the time I said amen he had almost completely relaxed, he had stopped crying and yelling. I can’t say that he sat there with a smile on his face but he was not yelling has he had in previous appointments. I am so grateful for a loving Heavenly Father who sends comfort to a little boy going through something that adult may view as ‘not that bad’ but is terrifying to a little boy.

We saw the doctor not too much later. His blood pressure was good. High blood pressure can mean the kidneys are having trouble. And the blood work shows that his creatinine levels were back down to a .5! Yes! Which puts him back into the high 80s for kidney function! This the absolute best we could have hoped for and not what we were expecting. We’re still a little new to how this relationship between the creatinine level and the kidney function percentage works but for now we are just happy that his numbers indicate a good level of function. We’re also happy that Dr. Hernandez is letting out the leash a little. We have been seeing a nephrologist every 6 months but he says it is okay to wait a year now. That actually makes me a little nervous but I feel better that we will see him in the fall and then Ian’s pediatrician in the spring. If she sees anything out of the ordinary she can order tests or send us to see him.

Ian was pretty funny that day, whenever someone would ask him a question he was answer with ‘nothing’. The nurses and doctors got a good giggle out of that.

After his appointment we headed to Safeway in the U District for bagels and lunch things then headed to the zoo. It was an absolutely beautiful day as far as weather. Perfect for the zoo.

We still feel like we are on a roller coaster but we’re at a point in the ride where we’re on our way up. We just hope that around the next turn the is not a steep drop off.

Leave a comment »

Toddler beds can have fun sheets too!

Okay, maybe a bit of a strange title but if you have a pre-school age child that sleeps in a toddler bed you understand. Sheets that fit toddler beds are, well, babyish. In the past I have tried to remedy that by making my own fitted sheets. This works very well. It is really easy and doesn’t cost too much. But lets be real, your toddler/pre-school child is eventually going to move into a bigger bed and they don’t always have the right fabric at the fabric store. For example, my kids saw some skylander and Planes sheets at Target and really wanted them but they slept in a toddler bed and crib at the time. They were a great price and made out of that minky soft fabric (which you can’t get in character prints at the fabric store) so I bought them. Thinking I would just cut and resew them into toddler size sheets. But of course that takes time… time my kids don’t have…..! So i took a shot at putting the twin sheet on a toddler/crib mattress. Guess what …. it worked!

Here is how to do it.

Start with the top side of the mattress facing away from you.

Start with the top side of the mattress facing away from you.

P1070166

Put the side of the sheet that would normally go on the short side of a twin mattress on the long side of the crib mattress.

Wrap the sheet around to the front side of the mattress.

Wrap the sheet around to the front side of the mattress.

P1070168

Continue wrapping the sheet to the back of the mattress, putting the corners into the corners of the fitted sheet.

Flip it over.

Flip it over.

Okay, it isn’t exactly perfect but it fits pretty well and my sons were supper happy with their Skylander and Planes sheets and I didn’t get have to cut them up and make them unusable for their twin beds later in life. Likely Eric will be done with planes by the time he is in a twin bed. However, when we first got them in January Ian was in a toddler bed and he is not in a twin and is able to use his sheet to its ‘full potential’.

Leave a comment »

The Dream Mile that was just a dream….

Nate has been so excited to run the Dream Mile for years! In fact at the beginning of third grade he filled out a paper with his goals for the year. One of them was to place 3rd in the dream mile. Last year on May 28th the fulfilled that goal. He ran the dream mile about 2 days after having the stomach flu and came in 3rd! It was so exciting! We had been so excited that he had even qualified let alone placing 3rd! Since he was still recovering from being sick, I think we were all thinking that next year, next year it would be his race. He might just have a chance to win it! incidentally, the poster his class made for him last year is still hanging in our hallway. Yep, it was that big of a deal to him.

A few days before the qualifying race, that sounds much more exciting than it really is: the 3rd-5th graders run the mile in PE class. The teacher times them and the 12 boys and 12 girls with the fastest times get to run in the Dream Mile. But anyway, a few days before the race I mapped out a mile course near our house and he ran it in 6:45. He knew he needed to be under 7 so he was satisfied and didn’t practice again. He ran the qualifying race a couple of days later in PE in 6:45. We planned to have him run it again before the race but he got a mild cold and it rained I think so we just left it.

He found out last Thursday that he qualified for this years race. He came home from school that day not feeling too well. I attributed it the fact that he had gone on a field trip that day to which he had worn jeans (serious shocker if you know him very well) and walked around all day in the warm sun, it was in the 70’s that day. But when he came home Friday after school I knew he was sick. He came home laid down on the couch, fell asleep and didn’t really get up until 9 the next morning. Tom took his temp Friday evening and it was 102. He slept most of Saturday. Still had a high fever. Sunday he felt a little better but had a headache. By Sunday night he didn’t feel that great. Monday morning he was doing okay. We went to the movies that afternoon and when we got home he went to bed and his fever was back to 102. I took him to the doctor Tuesday morning and the chest x-ray showed signs of pneumonia. I hurried to the pharmacy and picked up his meds and had him start taking them right away. By Wednesday morning he showed very little improvement but by this afternoon he was feeling a little better.

We have been praying all week that it would down pour today so that they would have to delay the race a couple of days so that he could participate but no luck. Who would have thought that you could get rain when you wanted it in the Seattle area. I guess maybe we should have been praying for sun, that probably would have been a sure-fire way to get rain!

We had been telling him that if he felt like he could try to run we would let him. Okay, it may sound bad but we even had told him that we would keep him home from school until after lunch today to give him extra rest before the race. Of course he woke up this morning with a fever so we didn’t send him to school anyway.

Nate is very competitive and several of his friends had also qualified for the face so he was so looking forward to running against with them today. I knew he really wanted to run. At about 1pm today I asked him how he felt. He said okay and that he wanted to try to run. I asked him to take a deep breath. He tried but couldn’t because the pain was too bad. Tom took his temp and it was still slightly elevated. I walked away knowing there was no way he could run today but I didn’t want to be the one to tell him that.

While I made a quick run to the store for bread Tom had Nate get ready to go to the school for the race. Tom told me when I got home that he had told Nate to get his shoes on and run a little bit in front of the house to see how he felt. He was so tired after putting on his shoes he didn’t even attempt to run.

It was over, this years Dream Mile was just that……. a dream.

But we still wanted him to enjoy the atmosphere of the race and the pomp and circumstance surrounding it so Tom drove him to the school (we live so close to the school I find it more work to drive then to walk but Nate realistically couldn’t walk that distance with how he felt.)

I walked to the school a little bit later with the younger two boys. I had such mixed emotions as we walked. It was a bitter-sweet day. We were so excited for him qualifying for the race and happy he was feeling better but sad that he would not be able to compete.

Tom took Nate to his class where his classmates were really excited to see him. However, three of the boys were a little glad to hear that he would not be running that day since that meant that they had one less competitor.  He went with the other racers to the gym. He got his race t-shirt, warmed up with the group and made ‘the walk’ from the gym to the field.Project1

He stood in line with the other racers as they read off all the names of the participants.Project2

He waited with the boys while the girls ran their race. He walked over to the starting line with the boys and lined up. At this point Tom and I got worried: is he going to try to run? Putting on his shoes to go to the school made him tired.P1070114

Luckily the PE teacher stepped in and told him to step out of line. P1070115

He then had to watch as the other 11 boys made their way round the course. During most of the race he stood by me and I asked him if it was hard to watch. He admitted that it was, he so wanted to be out there running with his friends. I guess the lesson for today was that bad things sometimes happens and you have to miss out on some fun things. I have to say, he sure handled the disappointment well. My little man is on his way to being a man. I’m sure in the dark of his room as he tries to fall asleep tonight a tear or two may be shed for a lost chance at running the Dream Mile but I hope he understands that while it was hard, it was the right decision. Sometimes making the right choice is harder then we want it do be.

Next year Nate, you’ll be there next year and it will be your year! It doesn’t matter if you win as long as you do you’re best!

 

Leave a comment »

Easter April 2014

Easter wasn’t as exciting as I wanted it to be. It was …. well…. just another Easter. I think I was struggling this year to make Easter more spiritual but didn’t know what to do, we had just gotten back from a long trip and my sister’s wedding is on my mind all the time. Easter just came, we celebrated and it left…. Anyway, here are a few pictures of what we did do.

P1060961

Buddies in the Bunnies

P1060972

Easter Egg Cake

The boys helped me make this cake. I found a recipe for peep play dough and had bought peeps to try it. I decided it would be the perfect addition to my cake. So I had Ian and Bryce make pink and purple peep play dough. I would not advise making it. It was not the good but with enough powdered sugar we got it to a consistency to roll out and use a pop bottle cap to cut out the circles for the egg. The Yellow was actual Wilton Fondant that I happened to have  in the cupboard.

Easter 2014

 

 

 

P1060973

Aftermath of the boys opening their Easter basket. No, my boys are not as messy as it looks. The Easter Bunny left a trail of candy on the floor. When they followed the trail it led to a video game!

I kind of feel bad that I don’t make or buy my kids Easter outfits. I always looked forward to a new Easter dress each year. I guess I don’t have the motivation because I have boys and they are not interested in matching or wearing things I pick out for them. Oh well. One less thing to worry about at Easter.🙂

We did do our annual Family Home Evening tradition of talking about the week leading up to the death and resurrection of Jesus Christ. Along with that we make Resurrection Rolls. If you haven’t seen them on around you should search for them. It is a fantastic object lesson. The older boys remembered doing it in the past and were excited to do it again.  Another activity we forgot about doing this year that I am going to try to make sure is an every year tradition is the Resurrection Egg lesson. This blog has a great version: http://whatthesehandsdo.blogspot.com/2012/04/easter-lesson-and-activity.html     If you haven’t seen this lesson it is definitely worth looking at. The rolls and the eggs are great lessons that can be adapted to any age children and I don’t think they will ever tire of participating/hearing it.

 

Leave a comment »

Tickets Please

That’s how I feel today, like I am standing in line for a roller coaster. Only I don’t want to be on it, I don’t like roller coasters. But atlas, I am already riding the roller coaster of life and there is not getting off, not yet anyway.

What is the source of this? Ian had his 6 month check up with the Nephrologist (Kidney Specialist) at Children’s hospital in Bellevue today. We had to be at the hospital before 9:30 this morning so not knowing what the traffic was going to be like and not wanting my parents to miss their Thursday at the temple we had a friend walk the boys to school. Tom had a meeting in Tacoma for work that he was going to try to make, so we drove separate cars. Amazingly, he arrived just as we were finishing checking in, we had the carpool lanes, he did not.

Once checked in we headed down to the lab for a blood draw. She took us in right away. Ian was very nervous. I sat in the chair holding him on my lap trying to distract him. He was pretty upset. Screaming and crying, almost in hysterics. He has had this done several times. Believe it or not, he is actually doing better. Maybe by the time he is 20 he will be able to sit still and just wince when they draw the blood. That of course is assuming that he has blood draws twice a year until then. Okay, maybe that is a little sarcastic. I’m trying to belittle him. He really gets upset and is really scared. I have seen him take much worse things better than he take blood draws. I feel so terrible for him and totally helpless. He calmed down really fast once it was over. During the blood draw the tech left the door to the room open and the window between the lab and the waiting area. When we came out Tom and Eric were waiting for us. Tom said they had been upstairs but heard Ian crying so they cam down. He was afraid that something was wrong. I guess he has never been in the room with Ian during a blood draw before. When I told him Ian did better than last time he was surprised. I think the tech should have at least shut the door. It is a good thing there were no other children waiting for their turn!

After this event we headed upstairs to wait for our appointment. But we had one more thing to do before they called us back. A urine sample. On a normal visit to the doctor Ian has no trouble with these. He can pee in a cup with the best of them. But today…. after the blood draw…. he was terrified it was going to hurt. In the waiting area there was a Wii and I told him he could play a little. Unfortunately there was another kid on it. We waited a few minutes then I suggested we get the sample over with and maybe the Wii would be free. Once I convinced him is wouldn’t hurt he had no problems.

I returned the sample to the lab and came back just as they called his name. We went back to the room.  On the way they checked his weight and height (One indicator that your kidneys are not working properly is that you don’t grow. Checking his height is not just a formality) Then of course they took his blood pressure. He actually likes his blood pressure being taken. They call it an arm hug. When we got to the room Ian saw the BP machine and he said “Yes, an arm hug, I love those!” The MAs always get a kick out of him saying that. After taking his blood pressure she left. A few minutes later the nurse came in. She took his BP manually. After she did that Ian leaned over and whispered in my ear “what else do I have to make it thru?” I giggled but inside my heart broke a little for him. He is so sweet and so brave! I’m not sure his brothers would be able to take all that he goes thru as well as him.

Doctor Hernandez came in soon after that and briefly went over the history of Ian’s case: We know he has decreased kidney function, possibly from damage done during his infection. In September 2013 his creatinine level was 0.5.

Then he gave us the results of today’s tests. Ian’s creatinine level is now 0.6 (Probably could hear a strange sound escape my mouth at this point. Not sure if it was disappointment or relief. We wanted his levels to remain constant, definitely not go up. However, an increase of 0.1 doesn’t seem that bad right? Unfortunately it is.) That change of 0.1 puts him at about 70% kidney function. I began to panic at this point. (We have been told for the last year and a half that he was at 85% function. We were told not to worry until he was at 65%  It was bad enough to be 20 percentage points away from the level we should be worried at but 5 percentage points!?!? Not only that but 0.1 made the difference of 15%!) The doctor follows his revelation of the 70% function with “We’ll worry when he gets to 50% function.” Really? What changed in the last 6 months? We were supposed to worry and 65%, now that he has gotten close to that you’re just dropping it to 50%?

Tom and I were in too much shock to even have enough brain function to ask why it is okay for him to have less than 65% function now and it wasn’t 6 months ago. Hopefully, in September, when we take him in again, if the level had stayed at 0.5 we wouldn’t have to go back for a year, we will ask that question.

Going into this appointment we were really hopeful that his function would have gone up since the September ultrasound showed that both kidneys had grown. Thankfully this decrease in function does not change the treatment/life plan. However, I did feel like he put more emphasis on the plan. Ian is to avoid all NSAID drugs, this includes ibuprofen. A nephrologist (preferably from Children’s) should be consulted before any NSAID drugs are given. We are also to make sure that he stays hydrated. This is really important because his ‘good’ kidney may still be vulnerable to infection and damage, due to the pop off that occurred after surgery, if he gets an UTI. We will check his numbers again in September and have an ultrasound again.

I think we just sat for a minute after the doctor left. Still trying to process the news. The doctor was encouraging but the news was not what we were hopping or expecting.

After we exited to the waiting room Tom left for his meeting in Tacoma. The Wii was free so the rest of us sat down so that Ian could play for a while. Meanwhile, Eric caught the attention of a volunteer. Eric would hide then she would move and peek at him. After a while he climbed on my lab, covered his eyes with his hands and said “who turned out the lights?” It was really cute.

I noticed an outdoor play area at the hospital so I took the boys out there to play for a while. Then we headed to Bellevue Square. I had scheduled Ian’s 5 year well check up with his pediatrician for later that afternoon and didn’t want to go home and then try to get them to leave the house again. We grabbed lunch at Safeway then headed to the play place to play.

The main reason I scheduled this appointment for the same day was so that I could discuss the results of the Nephrology appointment with Dr. Robertson before I forgot the details. As we were discussing the appointment I was reminded of why I think I have one of the BEST pediatricians around. I mentioned to her that we had been told to worry about function when he was at 65 and now they are saying 50% but….. and she said “but you are his mom and that is your job.” Ian then says “you worry about me? Why?” I said “I’m your mom and I love you.” As I said this she said “we love you.” It is really great to have a doctor who obviously cares about my kids. I have seen her worry and even have tears in her eyes as she talks about them with me. She is the BEST!

As for the difference (65% vs 50%) she said she thought that the creatinine level was a bit of a sliding scale and that if may just be that he is 5 now and last time he was 4 so he lands on a different part of the chart. She said we’ll just trust Dr. Hernandez. I know this is true but I will probably be thinking about it a lot more over the next 6 months then the previous 6 months.

And so we continue on this roller coaster ride with Ian. I’m grateful for the high points in the ride and even more grateful for the love and support we have from family,  friends, doctors and our Heavenly Father during the low points of the ride.

Thank you to all who continue to think and/or pray for Ian while he is on this ride. I hope and pray that things will stay relatively level where his kidneys are concerned.

 

 

Leave a comment »

CTR Pretzels

Ian saw a picture in the Friend magazine at church the other week where a family had made Choose The Right (CTR) pretzels and thought we should do the same. So Monday March 10th for our Family Home Evening activity we made our own CTR pretzels. They weren’t quite as good as Auntie Anne’s from the mall but they were pretty good and we had a fun time making them.

image

Leave a comment »

National Pancake Day 2014

March 4th was National Pancake Day. Where do they come up with these things? I mean really there is a national Ice Cream Day and probably every other food you love to eat. May 15th is National Chocolate Chip Cookie day. Better be prepared🙂 Okay, sarcasm aside. It is actually kind of fun to ‘celebrate’ these wacky holidays. So, in honor of National Pancake Day we had pancakes for dinner. Not just any pancakes. I started out making something that represented each boy. A basketball and a letter N for Nate. A baseball and letter E for Eric.  smiley face and Letter I for Ian and of course a B for Bryce. Before I could figure out what I would do for Bryce he requested a pokemon. Really, I may be good but that good? Well, I attempted it and here are the results:

Victini

Victini for Bryce

Charizard, the 2nd evolution of Charmander (does that make me sound like I know something about Pokemon?) For Ian

Charizard, the 2nd evolution of Charmander (does that make me sound like I know something about Pokemon?) For Ian

Squirtle for Eric

Squirtle for Eric

Thanks Nate for being satisfied with the letter and the balls!

Thanks Nate for being satisfied with the letter and the balls!

Leave a comment »

SO CHEAP.RH Olympics

Okay, I am going to try this post one more time. I have written it twice before and both times something has malfunctioned and the post was lost. Here it goes again.

On Saturday March 1st our ward had a fun activity, SO CHEAP Olympics. We had fun events with titles of sports found at the winter olympics but the say they were played was just a little different. We had Hockey, not too exciting here just try to make a goal from different marked locations in the gym. Curling, in this event you curled ribbon with scissors. Tom got to participate as a curler for out team.  We also had the Super Combined. This was a three legged race through ‘gates’. The gates were cones with arrows telling you which way to go through. Super fun to watch! The last event was Speed Skating. In this even you tried to see how far you could slide across the gym floor in your socks! It was great that everyone could participate, the young and the older. I think most people who participated had a good time!

image

image

My “Daddy Doug” popped in for a quick selfie as he was leaving his wards activity.

Leave a comment »

Ian’s Surgery

I was a nervous wreck all weekend, waiting for the results of Ian urine test and worrying how Ian would handle the experience and how the boys would deal with it.. We had waited until the Friday before the surgery to tell them about it. We waited for such a long time because we didn’t want them to worry about it. I wanted those couple of days to be as normal as possible. That whole week turned out to be more crazy then we could have imagined but I’ll get to that…

Friday before the surgery I talked with a Child Life Specialist about how I could best prepare Ian for the surgery and help him through that day. I had already downloaded and printed a special book from the Children’s website and Ian and I had gone through the book. We had practiced doing surgery one of our stuffed animals. His favorite part was putting a silicone cupcake paper over her nose to make her go to sleep. He spent a lot of time putting me, the stuffed cat and anyone else who would comply to sleep with it. Luckily she felt that I had done everything I should do to prepare him. She was going to meet us Tuesday morning with more doctor play stuff. and support us in anyway. She was also going to try to push for me to be able to go with him into the operating room and stay until he was asleep. The nurse had already assured me that this would be okay but the CLS seemed to think that it might not be possible. This really made me nervous. I was sure that the best way to keep Ian calm was for me to be with him. But all we could do was wait and see how the morning went.doctor play 2

The Sunday before the surgery we asked friends and family to fast and/or pray specifically for Ian. This gave me so much peace. The Lord had watched over and blessed my little Ian through so much of his life. His birth, (One day I will write what I remember about that), his kidney infection and through all the testing he has gone through. I knew that he would bless him now especially with so many people praying for him.

Monday afternoon we finally go the call from the pediatician saying that his test had come back negative. We were a go for surgery, baring any sudden fevers of course.

Tuesday morning came…early… I was up late Monday night cleaning and making sure that we were as ready as we could be for the next couple of days. We had planned to leave around 6:45 in the morning. My mom arrived right on time but we were not quite ready. We did manage to leave the house before 7 AM. I was a little worried that we wouldn’t make it there by 8. Ian stayed awake the whole ride into Seattle. I don’t know if he was nervous or not. He was very quiet.

We arrived at 7:35. We had 25 minutes to kill. We decided to hang out in the car and play a little before going in.

Ian didn't want his picture taken. What a face!

Ian didn’t want his picture taken. What a face!

IMG_0289

On our way into the hospital on a sunny January morning.

*It is now one year to the date since his surgery. I really wish that I had finished this post last year. I don’t really remember the day quite as well anymore.But I’ll do my best.

We checked in and got all or our necessary badges and stickers. Ian’s Brown (is small square security blanket) even got a sticker identical to Ian’s bracelet.  That way, if it got separated from Ian they would know where to take it.

Waiting to go back to pre-op room.

Waiting to go back to pre-op room.

We didn’t wait very long before we were called back to the prep-room. There Ian changed out of his street clothes into a hospital gown.IMG_0293IMG_0295They had told me all along that I would be able to go back into the operating room until he fell a asleep. The first time I had heard otherwise was when the Child Life Specialist called the other day. When the anesthesiologist assistant came in to talk to us we asked him about it.  He didn’t think so but he said he would check. He later confirmed that I could NOT go back with him, the room was already set up with the robots and know non-medical persons could enter. I think my heart just sank into my stomach. Ian is so attached to me and so far he has handled all of his procedures better when I was with him. How was he (and I) going to make it through this? The anesthesiologist understood our concerns. Their solution was to give him a liquid sedative. Unfortunately he hated the taste of it and didn’t really get any in his mouth. The doctor assured me that this would be enough to make him sleepy. It wasn’t! He was wide awake. Their last solution was to have Tom hold him then hand him to me for a hug and then I would hand him to the Assistant. The theory being that he would think that I had handed him back to his dad. We did it and I guess it worked. I don’t know if Ian knew that it was not his dad but he hung on to him and let him carry him away from me and to the operating room. That was one of the most scary moments of my life. (I am crying now as I write this a year later.) It doesn’t matter that I knew that this was necessary, that I knew that we had placed him in the hands of most capable surgeons in the Northwest for this kind of surgery. There were too many questions unanswered about what they would find and what the outcome would be. Even under the most perfect conditions things could go wrong.

Tom and I remained in the pre-op room for a few minutes, tears running down our faces, trying to regain our composure as we headed out to the waiting area.

We were told the surgery would last about 3 hrs but could be as long as 5. We were given a pager. They would page us if they needed us for anything and to give us an update about half way through the surgery.

We sat for a little while in the waiting area reading and playing with the ipad. After a little while we decided to get something to eat. While sitting in the cafeteria the pager went off. I looked around wondering whose pager it was. Tom right away knew it was us and immediately got nervous. We tentatively headed back to the surgery waiting area. The woman at the desk said that a nurse wanted to update us on the progress of the surgery. We waited until the phone there at the desk rang. I answered it with apprehension. A kind voice on the other ends told us that everything was going well! They were about 1/2 of the way done and would be finished early! A wave a relief came over me along with a fresh set of tears. We were so happy that things were going well. It made the next 1 1/2 go a long quicker. While we were waiting I over heard someone say something about the free wifi (how did we not know this?) so we hooked up and watched some Downton Abbey. That helped the time go by much faster.

When the pager rang again Tom jumped and the butterflies returned. We again went to the desk and were told that the surgery was over and the doctor would be out shortly to talk to us and then we would be escorted back to Ian’s room where we would wait until he was brought there after he had woken.

Dr. Lendvey was very pleased with how the surgery went. He said he learned a lot from the scope portion of the surgery and that the re-implantation went as planned. So what did they learn? Ian has a gigantic bladder. (We had already kind of figured this out. He can hold it 4-EVER!) Also the ureter that runs from his bladder to his right kidney is slightly larger than normal but the left side is very large. He could almost get the scope all the way into his kidney. This told him, and us, two very important things. One is that the malformation was due to not forming correctly during utero. Second, the reflux on the left side NEVER would have fixed itself, therefore surgery was the only way to repair the problem. This was such a relief to me. I had been so worried that we were unnecessarily doing this surgery and putting him at risk for complications.

After our chat with Dr. Lendvey we waited for a few minutes before being escorted to Ian’s room. Originally we had been told that Ian would spend at least two nights there in the hospital. However, the doctor said that he would look into this because kids that have much more invasive surgeries then this one go home after just one night. Also, since his surgery was so early in the morning there was a possibility we could take Ian home the next day. His room was pretty big. A hospital bed for him and a pull out couch for his caretaker (me). There was a sink in the room but no bathroom😦 fun story coming about that one🙂

We waited in the room for a while until a nurse came in and said that Ian was in the recovery room and calling for his mom. She said she would take me back there so that I could be with him. They had originally told us that we could not go to recovery unless there was a problem. On the way to recovery she said that Ian had woken up a little upset and was obviously in pain but didn’t seem to be able/want to communicate with them and just kept calling for me.

What a sight he was. You can only understand the emotions that went through my heart if you have had a young child go through surgery. I can not even explain the feelings. He looked so small, so fragile, so helpless. Having seen my oldest in the NICU hooked up to monitors, having tubes coming out of him and his little wrist taped to a board, having seen Ian hooked to machines in the Hospital almost 2 years ago did not prepare me for seeing him this way.  As I walked up to his bed side I could tell that he was in pain and could hear him calling for me. I gently put my arm around his head and held his little hand. As soon has I did this his body relaxed and he fell deeper into sleep. With me there it seemed that he would allow his body to stop fighting the morphine and allow it to work. I just sat/stood I’m really too short to sit and hold him like that so it was sort of a kneeling position.

The anesthesiologist came in to check on him after a while and told me a cute little story about him. She said that he was so sweet and quietly laid on the table. When they got the mask, that would deliver the medication to put him under, ready to put on him, he grabbed it, put it on his face then covered it with his little brown blanket and closed his eyes. She said he was so sweet and brave.

After some time in the recovery room, I have absolutely no idea how long I was there and I don’t remember what the criteria was for him to be moved to his room, they rolled his bed down to his room. The urology section of the hospital was filled so he was in a different area. The plus to this was that he pretty much had a nurse dedicated to him.  He did pretty well after coming to his room. The only issue he had when he was fully awake is that he was upset that his tummy didn’t feel right when he touched it. No amount of explaining to him was helping. Finally Tom took a picture and showed him. I was afraid he would get upset (typically he wants band aids covering every little scratch and then he covers the band aids with clothes so that he is not reminded that he has an owie) but seeing his wounds really helped him calm down. Here is what he looked like:

Taken Jan 15th 1:39 pm less than 2 hrs after surgery.

Taken Jan 15th 1:39 pm less than 2 hrs after surgery.

Now that he was calm he could enjoy the best part of being in the hospital: unlimited access to popsicles.

IMG_0297

2:10 pm on Jan 15th

Once Ian was settled Tom went home to spend time with the other boys.

While he was gone we had a little bit of a setback.  I decided to hold off on giving his pain meds because he was doing so well. This unfortunately put him into a downward pain cycle that was hard to get out of. I didn’t realized that he should be medicated on a schedule regardless of whether or not he seemed to need it. From then on we kept him on a tight schedule for his pain meds. We were hopeful that this would allow him to get off the morphine. He needed to be off the morphine in order to go home.

P1030840

He was pretty tired but doing really well (6:10 pm)

By evening Ian was doing pretty well so Tom decided to bring the brothers in for a visit.

Ian and brothers Childrens hospitalAfter the brothers left we had a fun playing with the camera on the iPad.

Camera funGlowing finger

He was so tired but it took him a while before he would let himself fall asleep.

P1030849

Okay, now for the story about the bathroom. At about 2 or 3 in the morning I needed to use the restroom. The bathroom in the wing where his room was said “patients” only. Not wanting to break the rules I exited the wing and used the restroom. Then I went back to the entrance to the wing pushed the button, turned and showed my badge to the camera, following all of the instructions that I had been given earlier and doing it exactly as I had several times before that moment. But this time nothing happened. I waited. Then did it again. Again, nothing happened. I stood out there for what felt like 20 minutes, but I am sure that it was only 10, repeating the process. I was really beginning to panic. I had no idea how I was going to get it. I can not even tell you how relieved I was when the door finally opened. I used the patient bathroom until late in the morning.

Ian was feeling pretty good in the morning and really enjoyed eating while he watched TV. He never gets to do that at home.

BreakfastThrough out the morning different doctors came by to see him. One prescribed the medicine that he would need for pain once he went home. I was really hoping that would be today. I had been in contact with Tom and he would be coming in soon. My mother-in-law would be watching Eric so that we could focus on Ian. Finally around noon Dr. Lendvey came in to see him. He said that everything looked good but he was concerned that Ian didn’t act like he felt good. He was worried that Ian was not handling his pain well. I told him that I thought that he felt fine he was just being shy. He agreed to let us go later in the afternoon as long as he seemed happy and not in pain. Ian cheered up once the doctor was gone and did really well until Tom made it to the hospital. Tom gave him a big hug and squeezed just a little too hard. No harm done he was fine in a couple of minutes. I saw the Dr. a little while later in the hall and told him about the incident but that he was okay now.

Alas around 2:30 we had completed all the paperwork and checks. They let us go. On the way home we called my parents to let them know that we might not make it home in time to meet Nate and Bryce after school and asked if they would be willing to pick them up. Then I called my mother-in-law who was watching Eric to tell her that my parents would take care of getting the boys. She said that was great because Eric had been throwing up for the last hour or so. What? Yikes! How can I be taking my little boy who just had surgery on his abdomen home to this?……..

Well, the outcome to this twist of events is a whole different post. I will only say that I called the surgeon and he kind of laughed (nice huh?). He said short of getting a hotel room there wasn’t really much we could do. Lots of had washing and get lots of fluids if he does get sick.

I have to give a shout out to my great Visiting Teachers. Let me explain what a visiting teacher is for those who don’t know. In the LDS church we have a program called visiting teachers. In this program 2 women are assigned to be partners and then they are assigned a short list of other women to visit, usually 3-4. Visiting teachers (VT) are asked to visit (in person, phone call, email or snail mail) the women on their list every month. They are to look after their well being and have a discussion about gospel related topics. My fantastic visiting teachers, Christi and Susan, brought Ian a bucket of things to help keep him busy during his recovery. It had a stuffed animal, treats, books and other fun things. Ian felt so special and he loved all the things in it. They had even overheard him asking for a particular book at the school book fair and got it for him. I was such a wonderful gift for him and me. Through them I was touched by how much my Heavenly Father loves Ian and our family. He sent two fantastic women to look after us and make sure we felt loved. They also both brought us dinner the two days following his homecoming as did another friend. Thanks!

Many thanks to all who fasted, prayed and sent us good vibes. I assure you that they were felt and appreciated!

Leave a comment »

Root Beer Tasting

Some people go to wine tastings others go to beer gardens……

The Wilkinsons have Root Beer tastings.

Albertsons has a section on their pop aisle where they have individual bottles of sodas, mostly made locally . One night when I was shopping ALONE I had the idea that it would be fun to try a few of them. I started to pick out a few and noticed that there were a lot of root beers. Tom had recently told me about a root beer store in Seattle and we had been thinking  about going and trying a few. So I thought, we could do it right at home. The bottles were a dollar each but they had a deal where if you bought 5 you got a 6th free. So I got 6 root beers. Only one was a brand we had tasted before; Dad’s Root Beer.

While I was at a meeting Wednesday night Tom set everything up. There was a small cup of each root beer for each person in the family and a scoring sheet. Each set of six cups was given a number. We had no idea which root beer was which number.

image image Each of us tasted each flavor and gave it a score out of 5. 1 meant we didn’t like it and a 5 meant it was really good.

image

Ian’s face shows how much we all ‘loved’ #5

image

You must ‘cleanse’ your palate with a piece of bread in between flavors!

Root Beer!

Bryce scoring #1

Bryce scoring #1

After everyone had scored all six flavors we tallied up the points to see which flavor tasted “the best”.

Nate with his score sheet

Nate with his score sheet

After totaling up the points Tom revealed which number was which.

Winner: Bedfords

Winner

Loser: Dad’s

Do you agree that Dad’s is not that good? Personally I still prefer Thomas Kemper or Henry Weinhards for premium brands or good old MUG!

Bryce with his favorites

Bryce with his favorites

Ian with his favorite

Ian with his favorite

2 Comments »

Follow

Get every new post delivered to your Inbox.