This blog has moved!

Please continue to follow the journey of Ezekiel HERE. 

We have partnered with COTA and have a new webpage where we will be updating Ezekiel's journey and events. 

VIEW OUR NEW BLOG AT: 

http://cota.org/campaigns/COTAforEzekielB/blog

Surgery did not go as planned :(

If you have been following us on Facebook, you might know that Ezekiel’s surgery did not go as planned... As we mentioned in our last post, the plan was to do work on his bladder and urethra in order to prepare for the kidney transplant.  But when they got him in the OR they could not get anything into his urethra to reach his bladder...

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This surgery was our only hope of saving his urethra so he could be like any other boy -peeing all over the place.   The doctors did give us a couple of options that could possibly happen at that time of transplant or when he is older like 5-7 years of age. None of those option have a high chance and all bring about their own issues.

David and I are heartbroken that this surgery did not work.  Ezekiel will now most likely have to grow up with a urostomy bag. Just accepting the reality of that bring out all of our emotions again and we find ourselves randomly crying when we think about it or hear something sad. We know it’s not the end of the world and that he is here with us but we had so much hope in this surgery.

Other then that, Ezekiel did very well with the surgery. When we got to go back in the recovery room, he was just so peaceful while he was still sleeping. As he began to wake up he was humming a soft hum. It definitely made us feel so much better to see and hold him.  He was a little gaggy and fussy after he fully woke up but after giving him some pedialyte he fell right back asleep in my arms.  O how I love this little boy. His smile truly melts hearts.  

What next? Now we wait until he gains enough weight and is big enough to for transplant.

Thanks for all your prayers, we covet them and feel them. Aside from the surgery not going well, everything else went very smoothly for us. Ezekiel did so well in the car and didn't cry once. Also, he is starting to get an appetite again and is eating more on his own. Lately we have had to put his full 4 ounce feeding down his G-tube but the last week he has been eating it.


Please continue to pray that he stays free of any sickness and he grows.  You can click here for current prayer request. 

http://cota.org/campaigns/COTAforEzekielB

We are partnering with Children's Organ Transplant Association (COTA) to fundraise for Ezekiel. 100% of the funds go to Ezekiel for transplant related cost (lodging, food, travel, medications, etc). COTA’s partnership is lifetime and gifts to COTA qualify as 501(C)(3) and are tax deductible to the fullest extent of the law.

My sister Shannon Soucie

My sister Shannon Soucie is creating a committee that will, through COTA, fundraise for Ezekiel. Aside from needing any volunteers who want to help, we have two specific position on the committee we need to fill:

• Web Master -Update and customize COTA’s donation page
• Public Relations - The lead promoter/communicator for the fundraising events

**All positions will be provided with proper training from the COTA team. (it's pretty amazing actually!)

If any of these two spark an interest, or you are just interested in helping out, find me on Facebook and send me a message [https://www.facebook.com/katiebell711].

Feeding Zeke in the car

Zeke in his surgery gown

a trip to see Santa at BassPro

Cincinnati, Children's Hospital

David, Ezekiel, and I just got back from Cincinnati Children’s Hospital.  We had a great trip.  Our 3 days of back to back appointments went so smoothly.  It was amazing to have doctors who have seen cases like Ezekiel’s multiple times and have done kidney transplants many times per year.  They were able to answer many questions we have had since he was born and give a better understanding of the journey ahead.  We are still processing and awaiting to hear from the doctors for future appointments and surgeries but are excited we have a plan for our little guy.  

We had appointments with everyone.  We saw….nephrology, urology, cardiology, plumonary, psychology, Dental, Infectious Disease, the transplant surgeon, the transplant financial coordinator, the transplant kidney coordinator, anesthesia, dialysis dietitian, and social worker.  He also had to get multiple sonograms, x-rays, and lab work done.   Ezekiel has to get an all clear for surgery from all areas listed above.  Here’s a short recap of what will be happening in the near future…

• Cardiology (the Heart) - He will be getting a follow up echocardiograms every 3 months with EKG’s
• Plumonology (the Lungs) - He will be having a sleep study done to make sure oxygen levels are adequate.  Which we had no issues while were in the hospital but they just want documentation.  Not looking forward to this, since we will have to drag everything to the hospital and stay the night while people watch us sleep.  
• Nephrology (the Kidneys) - In order to do his transplant we need him to grow and get fat. Once he is 20 pounds and longer he will be big enough to accommodate an adult kidney (Which we found out that David and I are both matches! I will talk more about that later).  Not only does he need to get bigger but we need to figure out his bladder function.  They will not transplant a new kidney into an unknown bladder or his current ureterosotmies in his back.  
• Urology (the Urinary Tract) - This was the biggest appointment.  We knew that Zeke will have to have surgeries besides his transplant but didn’t know what or when these will take place.  We loved the urologist there, we already have a plan in the short time he was there.  Zeke will have to have surgery in the next couple of months to work on his bladder and urethra.  The root of where this all started.  They will do a procedure called a vesicostomy -an opening from the bladder to the outside of his body.  With this he will be able to have more a functional bladder. With this surgery they will be able to tell function and possibly stretch it if needed and fix/stretch his urethra.  If they are able to save his urethra, we will be traveling back to Cincinnati every 2 weeks for 5 times to get his urethra stretched again.  We are praying they can save his urethra, because it is the only chance he has to have a normal functioning penis.  

David and I are both candidates for donating a kidney to Ezekiel.  They do a blood type compatibility, which we all have the same blood type, and a HLA tissue typing.  HLA tissue typing involves 6 different antigens in our blood that are important for organ transplantaion.  I am a 4-match, which we have been told is very good.  Getting a 6-match kidney donor is very rare, usually only seen in identical twins.  We are still waiting for David’s results but we know he is at least a 3-match because he is the father. Even though we are a match, we will still need to go through health tests and a CT scan to see if our kidney size could fit into Ezekiel.  But at least know we are a match.

So with that being said, we need to have optimum health for ourselves so we can give Zeke the best kidney and have a quick recovery after surgery. The question is “how do we get healthy?

Thankfully, we were introduced to the Shaklee Corporation - the number one natural nutrition company in the United States - and have been using their supplements for over 10 years. Not only do we take vitamins, we wash our clothes, floors and dishes with natural cleaners. But is that enough to get “optimal health?” Do we change out diet, do we need to up our exercise? If you have suggestions on how to optimize kidney health, please share!

With travel, food and hotel expenses, our frequent trips to Ohio will get pretty pricy. Insurance will cover a good chunk of the costs but not all of it. In effort to bring in some extra income we have decided to jump into the opportunity the Shaklee cooperation offers - running our own health and wellness business. We have used their products for over 10 years and have seen them work. We have fallen in love with the company’s values and the bottle line is we trust them. Now it is time for us to share these products to you and others who will benefit from the results they promise. 

If you are interested in either joining with us on our journey to be healthy or just Support us… You can click here to visit EZEKIEL'S SUPPORT PAGE

It's Been a While...

It has been a while since my last post, but life has been crazy.  With a 4 year old going to preschool and very active 2 year old and Ezekiel, life just goes 100 miles a minute.  We have been trying to adjust to my work schedule, working 7p-7a in the NICU on the weekends.  It has been a very rough transition for the girls.  They were used to me putting them to bed every night, or at least know that I am there for the last 4 years. They have been troopers though.  We have some rough times but we are getting through it.  We have to.  

As for Ezekiel, things have been going very smoothly until the end of August.  He was growing very well, better than expected and doing well with physical therapy, which we have twice a month.  At the end of August, one morning we woke up and his Peritoneal Dialysis Catheter was leaking around the insertion site.  We called the Dialysis clinic right away and told us that we needed to come in so they can look at it.  We then went straight to the hospital and got admitted.  Of course we got admitted to the hospital on Friday so nothing happened over the weekend.  We continued to do the same dialysis routine there as we would have at home.  They drew many labs and sent cultures of everything to make sure he didn’t have any infection.  We new he had to go into surgery, just didn’t know when or how long we would need to stay.

Wednesday was the day of surgery.  He couldn’t eat past midnight and our surgery was supposed to be scheduled that morning but of course that didn’t happen.  He didn’t go to surgery until that afternoon.  I thought we would have a very cranky boy on our hands from not eating but he didn’t really care.  Got a little fussy but not bad at all.  

Surgery lasted for about 2 hours.  They placed a new PD catheter and our urologist did an exploratory look around to see if she could insert a catheter into his urethra in hopes to find out the functionality of his bladder.  The PD catheter placement went well.  We did not get to find out his bladder function, however she was able to thread the guide wire through his urethra, which we were not able to do when he was first born.  

After we had our surgery the goal was to let the catheter sit as long as we could without doing full dialysis.  Two full weeks is the optimal time they would like to wait for healing.  Every day the PD nurse would come and irrigate the new catheter.  It leaked the first day after surgery and we had to stop right away with the irrigation but the following days it only leaked a little.  We could tell Ezekiel was uncomfortable whenever we had to change the dressing, but he did well. 

During our stay, he also got a urinary tract infection.  Hospitals are no fun, they are full of germs that we don’t have any where else.  He ended up having pseudomonas in his urine, how he got that I have no idea.  They tried several times to get an IV in him for IV antibiotics.  They litteraly tired everywhere.  With all of the different attempts to draw labs and now IV sticks, there were not many options.  They finally got an IV in his head.  It fortunately stayed in for awhile but ended up having 2 different IV’s in his head by the time we left.  

Fortunately, we were able to wait a little over a full week to then use the PD catheter to it’s full use.  We were stuck there in the hospital but it was for a good reason.   Our neprohrologist thought we would have had to start using it sooner than we did.  Every day though we had to get lab work drawn.  They would wake him up at 4 am every morning to stick him multiple times. 

After 16 days in the hospital we got to go home!  It was nice to be a normal family and get our routine back in order.  

Since then were were doing well, slowing gaining all the weight we lost during the hospital stay and waiting for our trip to Cincinnati Children's Hospital in Ohio.  Cincinnati Children’s is one of the best places he could be for his kidney transplant and our insurance has  agreed to cover it as an in-network hospital for his transplant.  We were all very very happy about this.  Within a couple of weeks our trip was planned out for us.  In October we would be spending 3 days full of evaluation appointments and sonograms with all the specialists that would be involved in his care.  

A New Normal

Our new normal, what is that?  We have been trying to figure this out for 2 weeks now, but either way, here is what a day in the life of the Bell’s looks like.

The morning begins around 7am, if not earlier with the girls.  They are early risers and they definitely don’t get that from me.  Ezekiel gets done with dialysis somewhere between 7 and 8 am. David and I are now outnumbered and have to have a strategy to make this work -We have to divide and conquer! Typically David takes the girls down stairs and they begin breakfast. I disconnect Zeke form his machine and get him ready for the day, shower and then we head down stairs. If everything went well for David, the girls will be finishing breakfast and Ezekiel’s morning feeding will have been warmed and stocked with his 8am medications. Of course that is not how it always goes.

Getting Ezekiel ready in the morning is not a quick task… After I disconnect his catheter from the PD machine I have to:

1. Take temperature and weight. We have to get a consistent weight every morning because it’s hard for dialysis kids to gain weight since the dialysis takes away a lot of protein. He currently weighs a 8 pounds!  Grow boy grow!
2. Change his diapers and the dressing to his catheter. Yes, he wears 2 diapers - a regular newborn size diaper on his bottom, and a size 3 diaper that wraps around his belly and catches urine from his ureterostomy. Hopefully I’ll find some time soon to modify my cloth diapers to work, so we won’t spend all our money on diapers.  Also we change the dressing where the catheter enters his abdomen. This requires me to wear a mask and keep it clean as much as possible.              
3. Record and chart the numbers from the machine for the doctor to see each month. Our machine has a memory card that keeps track but they want us to keep a paper record of them too.  The numbers show us how much fluid was pulled off, basically how much urine was made.  
4. Clean up and set up the PD machine. Nothing is reused, all bags and tubes get thrown out and replaced. To set up the machine we need the 2 bags of solution; a package of tubes, called a cassette; and a drainage bag. Connecting the bags requires me to sanitize again and make sure the vents and doors are closed. 

When connecting and disconnecting Ezekiel from his PD catheter, we have strict procedure to make sure there is no chance for any bacteria to get into the opening and cause Peritonitis - which is a serious infection that can cause damage to the peritoneum and cause dialysis to not work as well. So we have to close and lock the bedroom door, cover all the vents, wear a mask, wash hands with specific antibacterial soap (for 1 minute), and sanitize, sanitize, sanitize!

Our bedtime routine starts around 7. Divide and conquer, that’s how we handle bedtime. We try and have the girls brush their, teeth and put pajamas on while we set up the dialysis machine. Ezekiel has to be connected to his machine for 12 hours so we try to connect him at 7pm. For the most part, the girls do great when we have to lock the doors, but there have been times when they both have been crying at our bedroom door to let them in. In time they will understand. Hopefully if both of us are home one takes the girls and the other takes Zeke.  It will be interesting when I go back to work, since I will be working night shift again.  I have no doubt David can do it and do it with out me!

Feeding and medication

Monthly shipment
of PD supplies

Ezekiel gets 2 ounce bottles every three hours during the day and then a continuous feeding throughout the night - on a pump. Recently he has been a very hungry boy so we got the ok from the Dialysis Dietitian and Nephrologist to start increasing and giving him 4 more ounces during the day.  So now we give him more at each bottle feeding plus we added a 5th bottle at 8pm which is helping him fall asleep better. We tried in the hospital to give him bottles all throughout the night as well, but he was not gaining weight and using up to much energy.  We are so very proud of our little man though, he has taken all his bottles since we’ve been home!  In the hospital he was only taking about 75% of his bottles and the rest was given through his G-tube. Hopefully someday we will be able to just give him bottles but I’m not going to lie, it is nice not to have to wake up to feed him every three hours :)  I would definitely do it though, anything for our sweet boy!

Also, he takes many medications in order for all his electrolytes to stay steady.  All the medications can be given with his bottle feedings except one that we have to give through his G-tube.  With so many medications, David found an app that alerts us when and which medication should be given.

So in the midst of all Ezekiel’s bottle feedings, we have Addilyn who always wants to do some type of craft and be at my side constantly and Eleanor who is a 2 year old -a typical 2 year old, who can be as sweet as can be one moment and crying the next.  And to top it off David, on the fly, thought it would be an awesome idea to start potty training her (without talking to me about it first).  I thought we should at least wait until we get into a better routine with having 3 kids, but o well, our life is crazy and I wouldn’t have it any other way.  I hate to admit but the potty training is working, he just didn’t put a diaper on her one morning and told her she’s wearing panties.  I was not thrilled with the idea, more work for me and more laundry.  But she is doing great, much better than I anticipated.  We are 6 days into it and she even woke up dry last night!  So proud of her!

And the craziness doesn't stop... I forgot to mention we also have 2 dogs.  A 7 year old, named Tucker, who is the best dog ever!  Seriously, he’s the best dog!  And then there is Rizzi, a 8 month old puppy who has so much energy she doesn't know what to do with it.  We got her in a weak moment, not going to lie, but she is such a sweet girl and our girls absolutely love her!  We contemplated on giving her away several times…. at one point, David even told the girls that Rizzi has to find a new home… That ended with tears streaming down Addilyn's face.

All in all, we are adjusting to a new life and new rhythm. It is very hard at times but the reward is worth it! I am finding time to spend with the girls one-on-one and I love being a family of five. Our family is complete!

Going Home!

We were finally given a date for our little man to come home - Friday, March 3rd!!! When we told the girls they jumped up and down and screamed. As the days got closer, our girls would ask about him daily. Every night when we put Addilyn to bed and when she wakes us up in the morning she would ask “Is Ezekiel coming home after my nap time?” Our girls were so ready to have him home and are just so full of love. One time after dinner, David asked Addilyn if she is excited to have Ezekiel come home and her reply melted our hearts. She said, “yes! And then you and mommy won’t be sad anymore?”.

Mixing Formula Training

Infant CPR Class

The last week in the hospital was filled with training and preparing for taking a dialysis patient home. We had three sessions of training on the peritoneal dialysis machine; teaching on mixing the breastmilk formula and how to give medications… Plus, David (and the rest of my family) even took an Infant CPR class. 

As the week went on... it was getting more real, Ezekiel was going to finally come home!!!  In the midst of our excitement, the anxiety swooped in… we have to get the house ready for him and we haven’t even started!!! We have to set up his crib in our room, we have to clean the carpets, we have to have a place for his machine and all the supplies, and so much more... So we got to work and spend the day cleaning. We vacuumed, cleaned the carpets and dusted everything. Addilyn and Eleanor even helped us wipe down our walls and windows. It felt so good to clean, especially for our little guy. 

Friday finally came; it seemed like it would never come. This was day 31 in the NICU for Ezekiel. Driving to the hospital everyday was exhausting; leaving the girls everyday caused minor separation anxiety and just the everyday stress from the whirlwind of life was wearing on all of us. But the day finally came and I believe Addilyn captures our excitement when she jumped up and down on the morning of, saying, “Baby Ezekiel is coming home!!!”

I will never forget March 3, 2017 -it was the day we could stop driving back and forth to the hospital, it was the day we could stop crying ourselves to sleep at night, it was the day we got to finally be a family of five and our son, Ezekiel Joseph Bell, got to come home!

Of course, when we arrived to the hospital we had a minor bump in the road with dealing with insurance, but everything else went as planned. Many of my nurse friends stopped in to say goodbye to us (even though we all know they were just there to snuggle Ezekiel one last time 😉 ). 

I can not express how thankful we are to all his nurses, APNs and Doctors who took care of Ezekiel. There are not words to describe how much they all mean to us, or enough cookies in the world to thank you all.  I hope no one reading this has to know how extremely difficult it is to have to leave your child at the hospital and go home.  But being a part of the NICU family made it easier and gave me some peace, knowing my friends were there taking excellent care of him, snuggling him, and singing to him when I couldn’t. Thank you NICU Nurses, you do amazing work!!!

Being a NICU nurse myself, it was extremely hard to be in the opposite shoes. What is most difficult is that I know way to much of what could possibly happen in all situations, especially with 2 major surgeries in his first 5 days of life, dialysis and looking into the future with a kidney transplant.  

Emotionally I was a wreck inside from day one of finding out (at 20 weeks pregnant) we were going to loose. However, there was hope at 24 weeks... Hope we clung to the entire pregnancy and still cling to today. I could not have gotten through this without all of his nurses, my friends, my family, my husband,  and especially God. I know God has a plan for our little boy and we are watching it unfold now.  God has already humbled both David and I by realizing we can’t do this on our own. Watching people clean, cook, and care for our girls for us during this last month was very hard.  You can ask anyone, I’m not one to seek out help, I like to be the one helping.  But we are so grateful for all the love and support everyone has shown us and continues to show us everyday.  Thank you all for your prayers and please keep them coming!  

We ask for continued prayers on the following 
     1. That dialysis would continue to go well,
     2. Steady weight gain,
     3. We can adjust to the new rhythm

The Start of Peritoneal Dialysis

On February 17th, we got the word that Dialysis had to start.  That was hard to hear, we thought he was doing well enough to hold out longer, the longer we wait the better he will tolerate it.  The other Nephrologist on call said we would possibly go home before we needed to start dialysis.   Even though it was hard to hear, I felt peace about it, one step closer to going home with our little man, I remembered thinking.  Ezekiel has been such a brave little fighter his whole life so far and I know he will get through this too.  

However his electrolytes were slowly becoming unbalanced and it needed to be started.  Working kidney’s keep all your electrolytes in balance and since he only has 10% function on the right, it is hard for him to do so on his own. Our Nephrologist also said it is recommended to start dialysis on patients when one only has 10-15% function left. So we are so thankful that we were able to prolong dialysis long enough to let everything heal up good from his last surgery.  

What is peritoneal dialysis and how does it work?  Here is a good website if you want to read more about what it is all about.  But basically we infuse dialysis solution (water with salt and other additives)  into his peritoneal cavity (lining of abdomen) and let it dwell for a designated time and then we drain it out.  During the dwelling time of the solution is when dialysis is occurring, waste products and excess fluid pass from the blood through the peritoneal membrane into the dialysis solution.  The peritoneal membrane acts as the filtering device, similar to what the kidneys should do.    

Click for video

Our Nephrologist had him start dialysis with low volumes (50 ml each cycle) and will then work his way up to the desired amount for the home dialysis machine, which is 100 ml.  Each day they evaluate how Ezekiel tolerated the dialysis and each day we were able to increase his volumes.  It took him 5 days to work up to the 100 ml goal of dialysis solution in his peritoneum.  While we were working up to his goal, the nurses had to perform dialysis manually.   Now that he is up to the goal volumes they put him on the home dialysis cycler, all we have to do is learn how to program it and hook it up to his PD catheter.  It does everything for us.

Ezekiel has currently been on the home dialysis cycler for about 6 days and doing great.  He is even gaining weight, which was a struggle for awhile.  Infants and children grow a lot slower and have trouble gaining weight we were told, and could take up to 2 years or longer to get to the desired weight for a kidney transplant (which is 20 pounds).   We finally figured out what will help him gain weight, and we are sticking to it as of now.   Currently he is receiving my breastmilk with a special formula designed for kidney patients to increase the caloric intake as well as a liquid protein supplement each feeding.  We give him bottles during the day and then at night he is on a continuous feeding through his g-tube while dialysis is occurring.  We are doing this because he currently does not have enough energy and strength to take the amount of calories he needs every 3 hours.  

Our next step is to learn how to use the dialysis cycler at home. We had our first training session on Sunday, and then again today (Tuesday) and will have one more tomorrow morning.  After setting up the machine a couple of times we both feel very comfortable doing it.  It is a very simple process we just have to make sure when we connect the fluid bags and when we connect his catheter we are as clean as possible.  Any contaminations during the process could lead to peritonitis, an infection in the peritoneum (the lining of abdomen), a very serious infection.  During the process we have to close all doors/windows, cover all vents, wear masks and wash/sanitize our hands many times during setup and especially when we connect the machine to his PD catheter.

Our goal for home is this FRIDAY!!!!  As long as Ezekiel corporates, which we aren’t telling him so hopefully he does.  Here in the NICU it is common when we tell babies they get to go home on a certain date it doesn’t happen.  So don’t tell him :)  We all want him home.  Every day Addilyn asks “Does baby Ezekiel get to come home today or after bedtime?”  I can’t wait for the day I get to say YES he’s coming home!!!!

David in training

Katie in training

The dialysis machine