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

Ezekiel's Lungs and Kidneys

During my pregnancy, the lungs and kidneys were his main concerns, this blog will explain those in more detail - see my last post to read about my pregnancy.  Somewhere between my first initial sonogram at 8 weeks and the 20 week sonogram is when the LUTO (lower urinary tract obstruction) occurred. Which means that amniotic fluid levels were low, and pulmonary hypoplasia was happening (small underdeveloped lungs).  With that, the kidneys were also being damaged at this time due to the pressure build up in the bladder and ureters.

The Lungs
To develop, the lungs need amniotic fluid. At 24 weeks I had another sonogram and this is where things turned around and the Urachus popped open and allowed the urine to escape into the amniotic space.  Amniotic fluid levels were normal and his lungs could have a chance to grow and develop.  Since working in the NICU, I had the chance to ask around and do some research to see if there are any cases that this has happened to. Unfortunately, there was no research out there about having to low of fluid at the beginning and then normal fluid levels.

I remember all the doctors saying, if there are no lungs then we can’t work on the kidneys.  So the plan was to deliver Ezekiel on February 15th at 39 weeks via c-section and for me to receive 2 doses of Betamethasone prior to delivery.  Betamethasone is a steroid that reduces the risk of lung complications in preterm infants, or in my case, the unknown of lung development.  However, on February 1st at 37 weeks pregnant I had a sonogram.  We knew my fluid levels were on the lower side of normal, but we didn’t know if it was due to normal pregnancy or due to lack of kidney function.  So the sonogram revealed that fluid levels were too low to stay pregnant and was whisked up to labor and delivery to prepare for the c-section.  I asked what about the steroids and they said they didn’t have time. 

Ezekiel was then born 3 hours later at 12:17pm and he came out crying!  All the doctors have been very pleased with his lungs.  We had everyone at the delivery as well: 2 Neonatologists, 3 Neonatal Nurse Practitioners, a Respiratory Therapist, and the Transport RN.  (It helps to know people!).  At birth Ezekiel only needed a little support and was placed on Nasal IMV.  Over the next couple of days he was weaned off all oxygen support and was on Room Air. Even after his surgeries he was able to come off oxygen support quickly.  Very proud of our boy!

He did have a little set back about a week ago with oxygen and needed to be placed on Nasal CPAP.  We think we just changed too much all at once for the little guy.  At that time we were increasing on the amount of food he was bottle feeding quickly, was on room air, and doing mini cycles of dialysis to keep the PD catheter clear of blood.

Currently Ezekiel is doing much better.  The doctors put him on a slower feeding schedule to ease up the volume to full feeds, and holding his oxygen steady on a High flow Nasal Cannula at 2 Liters in 21%. Here in the NICU we can increase the amount of oxygen very slowly and goal is always 21%, which is room air.  The plan is for him to get to the full volume of feeds then take him off the nasal cannula.  One thing at a time is the key with this little guy.

Praise God for working lungs! Because the lungs are good we are able to focus on the kidneys...these are a whole different story.


The Kidneys

Right after birth we were talking to the Urologist and Nephrologist every day.   The second day of life they preformed the Mag 3 Lasix test to see how much kidney function he actually had.  The results came back and they were not good.  His left kidney had no function and the right only had about 10%.  The Nephrologist says that it is recommended to start dialysis when there is 10-15% function left.  So the next day, when he was only 3 days old the urologist placed bilateral ureterostomies so there was some place for his urine to drain and kidneys and ureters to decompress.  Our hope was then he would produce a lot of urine to help stabilize his electrolytes.   

During the bilateral ureterostomy surgery they learned that his kidney’s were half of the size they should be and we definitely would be looking at dialysis and kidney transplant in the future.  Our hope was to then get the PD catheter in place and be able to hold off on dialysis for at least 2 weeks so everything could heal.  Over that following weekend the doctors watched his electrolytes very closely and we prayed for pee.  If his urine output stayed up then we would have a great chance of holding dialysis off.  

On Monday, at 6 days old, he had his second major surgery.  That was full of waiting.  Surgery APN called early in the morning saying his surgery could be anytime from 10:30am to 5pm that night.  He ended up going into surgery that day at 2pm.  I was able to snuggle him all morning and was able to talk to the surgeon and all the other doctors.  He ended up having a Peritoneal Dialysis catheter placed, abdominal hernia repair, bilateral orchioplexy, and a G-tube.  Our goal was to fix everything so that things had a time to heal properly before we start dialysis.  

Everyday they check Ezekiel’s electrolytes to make sure they are not becoming elevated.  Some of the main labs they look at are sodium, potassium, BUN, and creatinine.  Our goal is to hold off dialysis as long as possible and if his labs stay stable and his urine output stays strong then we will be able to wait for everything to heal.

That is the story of his lungs and kidneys. We thank God for working lungs and continue to pray for kidney function as we begin Peritoneal Dialysis. I will share more about Peritoneal Dialysis in my next post. In the mean time, be sure to find me on Facebook for updates and pictures.

Thanks everyone!

Beginning the Journey of Ezekiel Joseph

So now that all of you are up to date on our happenings here in the NICU.  We would like to share a little of our roller coaster of emotional pregnancy journey.  When I found out we were pregnant, I told our girls (Addilyn is 4 and Eleanor is 2) that they were going to have a baby brother or sister coming.  They were so excited, especially Addilyn, who automatically said she wants a baby brother not another baby sister.  We told her that we don’t get to choose, God chooses for us, but she could pray to God to have a baby brother, and she did.

God gave us a baby boy!  However, it took us awhile to find that out... and this is where our roller coaster begins.  David and I went in for our 20 week anatomy sonogram.  They started the sonogram and I automatically knew something was wrong.  The only thing we saw on the screen was a big fluid filled cyst like structure, we could not see the baby’s arms or legs, just a head and the cyst.  The doctor was called into the sonogram room and told us that they didn’t know what that was and referred us to the Maternal Fetal Specialist. They drew some blood for different tests and still did not know if our baby was a boy or girl.  

Notice his little head; the black circle is his bladder

The next day we got an appointment and we were so nervous.  We were then given the diagnosis of a Lower Urinary Tract Obstruction (LUTO), which means his bladder has no way to empty, so no fluid would be able to get to his lungs thus lungs would not develop.  The big cyst like structure that we saw was his bladder filled with urine.  With LUTO, the kidneys become severally damaged as well.  LUTO is a rare birth defect that occurs in 1 in 5,000 to 7,000 births, most commonly in males.  Other diagnosis we heard that are a result of LUTO were pulmonary ,.   and prune belly syndrome.  Our doctor gave us some options to do but none gave us much hope and the end result would be the same.  We were looking at comfort care, end of life care, when he was born and would meet with everyone at our next appointment to come up with a plan for his passing.  We were going to loose our baby.  It was just impossible to think of.  To carry him to full term and then loose him was so devastating, and we still were not able to see the gender.  The lab results finally came in a couple days later and we found out we were having a BABY BOY!!!!

Our next appointment with the Specialist was not for another month.  We lived, I should say just survived a day at a time, knowing we were going to loose our baby boy.  I was then 24 weeks pregnant and we went in for another sonogram.  The sonogram looked totally different, there was fluid around him.  Not knowing what could happen was hard.  They did say that the bladder could rupture from all the pressure of urine inside and we automatically thought it was that.  However the doctor came in and said things have changed a complete 180.  From all the pressure in his bladder, the urachus popped open and allowed the urine to come out freely into the amniotic space.  He now had fluid to breath, his lungs had a chance.  The doctor said we were no longer going to talk to palliative care, and he was very optimistic about Ezekiel's chance to live. From them on throughout the pregnancy we had sonograms every 2-3 weeks to check fluid levels and anatomy. The doctor said there is a change that the urachus -that popped open- could close back up and we would be back to square one. 

After weeks of sonograms and various meetings with different doctors, Ezekiel Joseph made his entrance into this world on Wednesday, February 1, 2017 at 37 weeks.  I had a 37 week sonogram to check fluid levels and the doctor came in and said today is the day to have a baby, my fluid level was too low.  It scared us so much.  Our planned c-section was not scheduled for another 2 weeks.  February 15th was supposed to be his birthday, we had plans, plans to receive steroid injections prior to delivery to help his lungs.  But Ezekiel had other plans.  He came out crying and only needed a little oxygen support.  We both immediately burst into tears.  It was so good to hear him cry.  Praise the Lord!

Welcome to our Journey

Hello friends and family!  Welcome to our blog, God Will Strengthen.  This title was a no brainer because Ezekiel is a miracle and we know God is with us.  Ezekiel means God strengthens.  We had this name in mind before we were even pregnant with Ezekiel.  

As of today, our sweet little miracle is 12 days old.  I (Katie) am sitting here watching him sleep so peacefully as I write to all of you, his prayer warriors.  We cannot thank you all enough for the prayers, love and support you all have shown our family.  We could not have made it this far without all of you and the faith of God.  We would like to bring you all along on this journey of Ezekiel Joseph.  Not sure how consistent we will be about writing but we will do our best.  

Before we share how our journey began we would like to update you all on how Ezekiel is doing.  Ezekiel was born on Wednesday, February 1, 2017 and then was whisked away to the Neonatal Intensive Care Unit.  The Friday after he was born he had to undergo surgery to have bilateral ureterostomies placed, which allow him to have a place where urine would escape.  Then on Monday he had another major surgery to place his Peritoneal Dialysis catheter, a G-Tube, along with fixing his abdominal wall hernia and bilateral orchioplexy.  After that surgery the plan was to let him rest for a couple of weeks to allow everything to heal.  However, the PD catheter started to leak that night and blood got in. So the next day we had to start doing mini cycles of dialysis to flush out the blood in the catheter so it would not clot off.  If it did clot off,  he would have to get a new one.  So we have been doing mini cycles of dialysis for the next 3 days.  Ezekiel had some ups and downs but was able to come off all his oxygen completely for a few days.  

The night of 9th, we got 2 dreaded phone calls.  Its never good when they call you at night.  Ezekiel was working harder to breath and was just very irritable and not making his oxygen saturation requirements.  So they put him back on a nasal cannula.   The nurse called everyone in to look him over.  They got x-rays, drew blood cultures, labs and they sent off fluid from the PD catheter.   That morning when we arrived, they were doing an abdominal sonogram to make sure nothing was no leaking from his surgery, and placing him on a Nasal CPAP machine. He needed a little extra help breathing.  After they put him on CPAP he was a lot more relaxed and slept the rest of the morning.  David and I hung around till the afternoon and Ezekiel was feeling much better so we both got some good snuggle time in with him. 

Thanks for reading our first post.  Next we will update you on how our journey began.