Monday, June 10, 2013

Temperature of 107...Yikes

107 degree temperature...never actually seen by the pediatrician! Leave it up to Claire to make it happen. I took her into clinic for what I new was a UTI (I tested her at home) only to get admitted to Timpanogos Hospital with acute pyelonephritis ( a bad kidney infection). Once they decided that her temp truly was that high and she threw up the Mortin they tried to give her, we were asked very nicely to go directly to the hospital! I was told if I promised to go directly there I could drive...Which of course I did.

Dr Edwards thought a couple doses of IV antibiotics and 24 hours later we would be home, well that was 4 days ago....and we are still here. Claire likes to do things her own way and the fever of 105 hung on until last night, the antibiotics they thought would treat the bacteria didn't seem to be working, the urine culture they were counting on giving them the correct medication was in fact not sent to the was found on Sunday on one of the doctors desk, in clinic! The doctor felt soooo bad and I am sure he was dreading telling us. I was frustrated when I found out but have worked in health care enough to know and have made plenty of stupid mistakes that I couldn't be that upset...besides getting mad wouldn't change anything. Her WBC and CRP doubled after 24 hours and continue to be high, though going down slowly. So here we sit, 4 long days confined to a hospital room! She seems to be feeling a little better but now the dilemma is which of the two antibiotics is doing the trick, since we don't have a culture to see what antibiotic this bug is sensitive to they are sort of stuck as of what to do....ultimately we will go home on an oral antibiotic but which one? That is the question! I sure hope they can figure something out because I really don't want to stay here for a full 7 days that it will take to finish a course of IV antibiotics!

Claire has been a trouper but this evening she completely lost it and thew the BIGGEST tantrum I have ever seen...she was kicking and screaming so hard the nurse came in to see if every thing was alright! I don't know how many more days she can take....

I am grateful for all of my friends for taking care of the rest of my family...I am overwhelmed with the amount of help has been offered, simply amazing!

Well, it's getting late and I am sure tomorrow with be another fun filled day, so until then....

Friday, May 17, 2013

Update time...

It's been awhile since I last updated and life has been busy!

Jillian is doing well, next month we have a Cardiology appointment with Echo to check her valve and heart function. I know we will get a good report but I can't help feeling nervous when ever these appointments get close! Jillian is loving kindergarten, which ends in just a few weeks! She loves to read and write stories of her own and she is a pretty good artist. She has started piano, which she is doing well, but as of right now doesn't "love" it. I know from experience that the love of piano doesn't always come right away and I know if she sticks with it, she will LEARN to love it...haha! Thanks mom for making me stick with it, I truly love to play now. Jillian is still really petite but has gained 5 lbs since her valve replacement, which is awesome! Claire now out weighs her by 4 lbs and Jacob is 12 lbs heavier. It is funny to go out with all three, nobody can figure out ages and how in the world we have three so close in age! When we say we have twins everyone automatically thinks Jillian and Claire must be the twins, so it is fun to mess with people.

Jacob is still his same responsible self with a newly acquired attitude, which I assume is coming from school! He is getting more rowdy boy, which is good since he spends most of his day with us girls! He is loving school and of course is into following ALL of the rules! He likes math and solving problems. He plays well with everyone and really has fun with his friends and sisters. Jacob is also taking gymnastics which he LOVES!

Claire, Claire has been the "problem" child this year! About 9 months ago she started loosing control of her bladder after being fully potty trained for 1 1/2 years. She got multiple UTI's and a kidney infection which started the kidney workup by our Dr. When all came back normal we were referred to urology whom were a bit baffled themselves with her symptoms. Then Claire started complaining of leg pain, long story short I insisted on an MRI of her spine and we found she had tethered cord which was causing nerve damage to her legs and Bladder. Surgery is the fix for this, so off we were! On  April 29th she had surgery to detether the cord. Surgery was 90 minutes and went well. We spent 4 days at Primary Childrens, which was awesome as usual. Claire recovered quickly and is back to her same crazy self. We knew this surgery may not "fix" the damage already there but would for sure stop further nerve damage. I was hopeful we would be lucky and it would be a compete fix but it doesn't look like that will be the case, while the leg pain is mostly gone the bladder symptoms are still there. She can go longer between potty trips but is still having accidents and tells me she can't feel when she has to go, plus she has another kidney infection! We have an appointment with the neurosurgeon in a couple weeks and will discuss further testing to see just how much nerve damage there is and figure out how to deal with it and make life as easy for Claire as possible!
Claire loves everything music and dance! She is constantly singing and dancing and is loving her ballet class with Miss Meagan.

After Jillian's big surgery last year, we were sure we were good for a couple of years and were going to adjust our health insurance to a policy that was cheaper but had a larger deductible and out of pocket maximum but we spaced the deadline and had to keep our same policy. This turned out to be a blessing as we had another unexpected surgery! I am grateful for Jason's job and the insurance that comes with it that is for sure!

As for me, I started a new business! I have always loved planning vacations so I stared a travel company. Perfect Cents Travel (thanks Dad and Tamara for the name) is doing really well, keeps me super busy and I love it! It is so much fun helping people plan and book vacations and it is nice to get paid for it also. The travel business is making a comeback and I am glad I am a part of it. Jason has been a huge support and help. He is my tech support and takes care of the Facebook and website maintenance. Plus he has caught the bug and is having fun finding and putting together great package deals to feature on Facebook and the website.

We have big plans for the summer! We have been working really hard at racking up points on our Southwest Visa cards and now have enough points to fly all five of us to Florida in August to take a 7 day Western Caribbean cruise on the Carnival Dream. The kids are super excited, we will also be spending one crazy day before at Disney World so they are beyond happy :) Through out the whole points process I (we) earned enough points that I earned companion status on Southwest which means every time I fly someone can fly free with me until Dec 2014!!!! So hopefully we can take full advantage of that over the next year and a half.

We are also hosting a foreign exchange student from Finland this next school year, she will be here the first part of August, we are excited for another adventure!

We sold our boat so we will spend our summer playing in the pool, lake and seven peaks, camping with family and friends, keeping up on our school skills and working hard!

Saturday, November 3, 2012

Three months later...

It has been three months since Jillian's open heart surgery and I am still in awe at how well she has done. She was able to start Kindergarten on time and is doing great! Her teacher was a little nervous to have her in the class, but after we talked she told me that since I was so laid back and relaxed about Jillian she felt much more at ease. I told her Jillian is in a much better place after surgery then before and we have less to worry about, at least for a couple of years! We have her three month cardiology visit on Nov. 14th, hopefully all is good and we get the green light for yearly visits. For about six months or so I have noticed two large lumps in Jillian's groin area, I have taken her in a couple of times, but by the time we got to the Pediatricians office the lumps were gone. We had her 6 year well visit two weeks ago and I mentioned this to her Pediatrician (who we have not seen for this) and he was concerned, he said he was 95% certain she had bilateral hernias that would need to be surgically repaired! Really! are you kidding me! So off we went to see general surgery at Primary's. He was right, the surgeon said that this is a defect present since birth but sometimes it can take a few years for bowel or ovaries to become trapped. So, yes she will need to have another surgery this year. He said the longer we wait the more chance we have for "stuff" to get caught and cause major problems with her small bowel. She will have this done on December 10th, luckily this is usually a same day procedure and most kids tolerate it well. She will have a cardiac anesthesiologist which is good. At least we have met our out of pocket maximum so this will be covered 100% by our insurance, I am sure they are LOVING us this year! 

In other news, I got a part time job working from home. It has been an adjustment but I am liking it. I do quality assurance surveys for skilled nursing, rehab and assisted living facilities. Basically I call family members or patients of these center and do a quick interview about their experience. The best part is most of what I earn goes to our vacation fund, which means I get to plan more vacations!!!

Halloween has come and gone, winter is on its way! We are finally getting into a school routine, the twins go to morning kindergarten, which means they have to be on the bus at 7:36 am, yep that's right!!! It is hard but we are doing it. I use the couple of hours from 9-11am to work while Claire watches a movie, plays games, colors etc. so far it is working pretty good. 

In three weeks Jason and I will be going on a cruise!!! We won airline vouchers at the silent auction at the heart walk this year, due to this we got a killer deal on tickets to San Juan, Puerto Rico. We leave late Thanksgiving night, spend two days in San Juan then leave on our cruise from there. We will visit St Thomas, Barbados, St Lucia, St Kitts and St Martin. This is my DREAM cruise and I am soooo excited. I am grateful for wonderful parents, both mine and Jason's who will hold down the fort here while we are gone. I will do a complete report with pictures when we get back. 

Sunday, August 5, 2012


Since I didn't have this blog for the first surgery I thought I would post some pictures

A couple weeks before first surgery-4months old

Waiting for surgery

Right after in the CICU

Lots of tubes and wires!

Getting ready to leave CICU

Up on the recovery floor



Waiting for surgery

Right after in the CICU

Lots of tubes and wires

She doesn't want to wake up

Standing for the first time, 24hrs after

Up on the recovery floor, watching the Olympics

In the bath at home!

5 days post op.

As I sit here watching Jillian color with her brother and sister I can't believe she had open heart surgery 6 days ago. She looks so good, her color hasn't looked this pink for a couple years, she has more energy then she has ever had. Jillian has always been a little grumpy, I know this was due to her heart, she never really felt "good".  Since coming home from the hospital she is so happy, She says she feels good!  Her incision site is painful for her but overall I think she feels better than she ever has:)  Here's to five to eight years of feeling great!

I am relieved this past us, I am happy she feels so good but I can't help but feel a little guilty.  We have so many good heart friends and a lot of them have to endure so much pain and heartache. Three of them Matthew (4yrs), Kaidence(5yrs) and Kylie(3yrs) are waiting for heart transplants and will be at Primary's until they get them, which has already been months for all of them!  I can't imagine what this must be like for their parents and families. Their moms stay with them practically around the clock, putting their lives on hold, relying on others to take care of their homes and other kids. These kids are hooked up to more tubes and wires than you can imagine but their spirits are amazing!  They have a way of making everyone around them happy!  Every time I see them or read updates from their moms it puts my life in perspective, I often wonder how much more they will have to or can endure. My heart aches for these families, they are in a position where someone else's child must return to heaven in order for theirs to live, I don't know how they do what they do but they are my hero's!

Please pray for our cute friends, they need them!

Friday, August 3, 2012

Jillian's Open Heart Surgery-Pulmonary Valve Replacement

I had every intention of posting each night while in the hospital, but of course that didn't happen!  Good thing our stay was only 4 days, should make it easy to catch up in one post.

Surgery was scheduled for Tuesday July 31st at 9am, we needed to arrive at 7:30am to get all ready. We had to spend most of the day Monday at the hospital doing pre-surgery visits, xrays and labs.  We also attended a pre-surgery class for Jillian.  She was able to learn about what would happen during her stay and see some of the things that would be used in the operating room like the o2 mask, IV, gown, hat and mask. She also got to smell and choose a sent for the "special air" she would breath to go to sleep.  Most kids would have picked bubble gum, watermelon, grape etc...Jillian chose banana!  She also met a child life specialist named Morgan that would be there the next day and said she would go with Jillian into the operating room and stay with her until she was asleep, which made Jillian and me feel a little better!  The class was really good for her, I am glad we went.

On Tuesday morning we arrived at the hospital at 7:30 am where we checked in, had our pre-op exam and met with Dr Burch the surgeon.  He is from the south and has a accent that makes listening to him really comforting!  He explained exactly what he planned to do and why.  He told us he wanted to put in a 23mm porcine (pig) valve, which would be big enough to last 5-8 years as she grows.  He also would place a conduit that would allow them to do the next replacement via catheter.  This procedure is fairly new, 2 years or so.  The great thing about this is it is done in the Cath Lab, and is only a overnight stay (not open heart).  He then proceeded to go over all the possible complications, that of course wasn't very fun to listen to, but what choice do you have?  After he was finished we met Dr. Pribble, the anesthesiologist.  He was more than ready to get started, so we chatted with him as we walked down the hall to the dreaded doors of the operating room.  This is the place where you say "see you later", hand over your child and turn and walk away:(  This was the part I was DREADING, even though they gave Jillian some versed to relax her she was not going to go willingly!  They told us in the class that we shouldn't say "goodbye" instead to say "see you later" they said kids associated goodbye to leaving, but see you later means you will be back soon.  Leaving her crying "don't leave me" was the hardest thing I have ever had to do!  We handed her over, waved and said "see you later" all the while fighting back tears (don't let them see you cry is another thing they ask you to do-haha) As soon as we turned to leave Jason and I were both in tears.

We went and checked into the waiting room, they said the operating room would call about every hour or so with updates, gave us a pager just in case we weren't there when they called.  The surgeon said the whole procedure would take about 5 hours, give or take depending on the amount of scar tissue from her previous surgery.  We didn't stay long in the waiting room, for one it was packed and for another most of the families there were having rather simple same day procedures such as tonsils, ear tubes or circumcisions and it was difficult to hear them call parents saying their child was finished after only being there for maybe 1/2 hour.

We headed down to the cafeteria where we met my parents and later Jason's parents.  The day dragged on, we received our first update that the anesthesia had placed all of her IV's and lines, and surgery had just began.  We waited another two hours before we got another update, there was quite a bit of scar tissue and at this point they were just getting ready to put her on bypass.  Around 2:30pm Dr Burch came out to tell us he was done and how things went.  He told us everything went well, he had to place a slightly smaller valve, 21mm due to a extra coronary artery that he found laying right up against the pulmonary artery and twisting around her aorta.  Extra arteries are pretty common is CHD kids, just because their heart anatomy is so 'messed' up!  He tried to see where the artery went and what it was feeding, but couldn't and didn't want to mess with it and cause complications, so we will have a CT scan at a later time to look into that:)  He said anesthesiology would have her ready in the CICU in a half hour or so and at that time we could see her.

So, we waited another long 30min, Last time I was too nervous to eat and when I walked into the ICU and saw my poor baby so swollen with so many tubes I almost passed out and the nurse had to catch me from falling to the floor.  I learned my lesson and brought a Cliff bar this time which I ate!  When we got to the CICU I was expected her to look like she did last time, but I was pleasantly surprised she was extubated and they had all the chest tubes and other lines covered with her gown.  She looked really good!  She was pretty out of it for the rest of the day.  Grandma and Grandpa Brunson and Simon were able to see her for a bit before going home, I am not sure if she even knew any of us where there! We hung out in the CICU for the rest of the night, Jillian was in and out of it most of the night. I went to bed in the parent sleep room around 11pm and Jason stayed in the chair at her bedside and at 3am we switched places. It was a long night but uneventful! Fun thing, our neighbor Cory is a NP in the PICU/CICU and he happened to be working that day, so he was able to take care of Jillian until he left at midnight, so that was fun.

 The next morning they weaned the rest of her major IV meds, and oxygen, took out her three (very large and painful) chest drainage tubes, and Arterial line (IV that goes into an artery).  After all of that was done she was given the OK to move to the CSU (cardiac surgical unit) we were upstairs in our recovery room by 2pm:)  The rest of the day we spent resting and trying to get out of bed to stand and walk to the potty. Grandma, Wes, Jacob and Claire came to visit, Jillian was still on morphine so she was quiet and pretty much ignored them.  Later that evening we went on a wagon ride, watched the Olympics and went to bed.  We all slept much better that night.

 We were woken up at 4:30am by the lab tech needing to draw blood, this didn't go over well with Jillian and we had to send her away:0 Instead we went down to xray for pictures of her heart and lungs, when we got back to our room they were ready and waiting to do the blood draw.  Jillian of course freaked out,(who can blame her, I wouldn't want to be woke up out of a deep sleep to a lady wanting to poke me!) so we finally just had to hold her down.  It was quick and the tears didn't last as long as the silent treatment she gave me:)  The rest of the day was spent getting out of bed for walks, eating, drinking and visiting with our friends and family.  We had visits from Aunt Jen, Aunt Tamara, Aunt Melissa, Grandma Simon, Chrissy, Jacob and Claire all of whom brought fun presents and much needed treats for us:) We also got a visited from a few of our heart friends-Brytten, Cindy and Stephanie came up on Wednesday night, and Ali Holder and her husband brought us a cute stuffed puppy.  It was a good day, especially when they mentioned home for the next day.

We woke up on Friday morning and before we knew it we were out of there, stopped at Grandma's to pick up Jacob and home by 11:30am:) On Thursday night Claire had come down with a fever so we had to leave her at grandma's since we can't let Jillian get sick.  We are going to see how she feels tomorrow and probably take her to the doctor to make sure it isn't strep or ear infection. I wish I could be there to take care of her, I don't like not being there when she needs me but I need to be here to make sure Jillian is doing good, and to give her all of her medication she has to take.  I hope Claire feels better tomorrow and that none of the rest of us get sick!

We have been home for 3-4 hours and Jillian is doing really good, all she has had for pain today in Ibuprofen and says she is fine!  It is going to be hard to limit her activity for 6 weeks once she feels good enough to play.  Right now she is just laying around watching movies with Jacob. Crazy thing is, if it were an adult that had this surgery we would still be in the ICU on heavy duty pain meds!  Kids are so resilient.  Jillian has amazed me with her ability to cope and accept that having a congenital heart defect is and will always be part of her life.  She understands that her heart will never be 'fixed' and that is part of who she is.  She is a wonderful, tough little girl with plenty of attitude and we love her!

We are so blessed, and our prayers were answered.  Thank you everyone for you prayers and acts of service we are grateful for such wonderful friends and family!  We are hoping we don't have to do this again for at least 5-8 years!