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UPDATE March  15, 2020 …..  we got the call for Skyler’s new kidney Saturday Feb. 22, 2020.  It was 11:00pm and I had just finished hooking Skyler up to dialysis.  His doctor in Cincinnati was the one calling and asked me how Skyler was doing, was he running any fevers or showing to be sick in any way – over all asking how he was.  I was wondering why he called so late asking these kind of questions and on a weekend.  AND THEN IT HIT ME!  The doctor continued by saying they had a deceased donor for Skyler.  A really good, close to perfect match!

It was a long almost 4 hour drive from Akron to Cincinnati.  We got to Cincinnati Children’s Hospital around 5:30am that Sunday.  Skyler was immediately taken to a room where they started blood work and all kinds of test to make sure he was in fact healthy and ready for the transplant.  We finally heard all was a go with the donor kidney at about 2:00pm – Skyler went into surgery at 2:30pm and was out of surgery around 6:30pm.  By the time they got him into a room, I saw him around 7:30 and he was talking some and asking about the donor-he wanted to know if the donor was okay and doing well.  MY SWEET LOVING BOY!  The doctor who did the transplant had told me as well that he asked the nurses and her the same when he was waking up in recovery. 

The next two days Skyler spent in the PICU.  Late Tuesday evening, he was moved out of the PICU and into a regular room.  Skyler really did not get moving until Thursday as he still had the catheter in and he was not having it-lol … he moved from bed to a chair and that was about it.  Once the catheter was removed he was happy and willing to walk around the hospital.  That Thursday morning after it was removed, we walked to the gift shop where he was all too happy to spend money on a few fun toys-lol   There were some issues with his oxygen levels on Wednesday, but once he was moving around that all cleared up.  

Skyler had one more surgery before we left the hospital on Tuesday March 3, 2020 – this surgery was to remove his PD tube from his abdomen.  That surgery was a success, and we were kept overnight so they could monitor Skyler. 

We were finally given the all clear to go home on Wednesday March 4, 2020.  Skyler is doing well but he is isolated from family, friends and the public for 6-8 weeks.  He his allowed out to go to doctors appointments only and when he is out he has to wear a mask.  Right now he has transplant clinic appointments twice a week for the next 2-3 months.  This will go down to once a week, then once every other week.  At some point we will only have to go in for monthly visits. 

For the next 3 months, Skyler is taking about 12 different pills.  After the first 3 months most of these will go away.  But he will be on about 3-4 pills a day for the rest of his life.  These will be the anti-immune medications.

Right now Skyler is having fun playing xBox with his friends and being social via facetime.  

Thank you everyone for the prayers and all the support!

When Skyler was diagnosed with Chronic Kidney Disease, it was hard to know what his future would hold.  Skyler’s journey with CKD started because his migraine doctor noticed high blood pressure.  After a follow up appointment in early January 2019 and still seeing high blood pressure, I scheduled an appointment with his pediatrician who sent him to have blood work done.  That same day, late at night I got a phone call to rush him to the emergency room.  This started a 4 day stay in the hospital. 

January 24, 2019 is a day I will never forget–Skyler was diagnosed with Chronic Kidney Disease and it in fact affects both his kidneys.  A biopsy was ordered and later showed the cause of his CKD was called Nephronophthisis – a type of genetic kidney disease. 

My folks and I spent the next couple of months learning all we could about the renal diet.  This was pretty hard on Skyler having to completely change his eating habits and especially the amount of water he had to drink daily.

Come March I was told that he would have to be put on dialysis.  I had decided to go with Peritoneal Dialysis.  This type of dialysis is done every night while he sleeps.  He gets no breaks, and he will be on dialysis until he has his kidney transplant.  April 24^th he started dialysis at home.  PD dialysis keeps him out of the hospital 3-4 times a week/4-5 hours each time so he can live a more “normal” life.  But with this, he is unable to have sleepovers at a friend’s house or even at his grandparents house (which he loves to do).  Another favorite summer activity is camping (glamping as we like to call it ?) and we are unable to do this as much either this past summer.  

Skyler has been added to the deceased donor list but we are also looking for a live donor.  A kidney transplant is not a cure for kidney disease, but is a treatment. After his transplant, Skyler will be on immunosuppressant medicine for the rest of his life. He will be carefully monitored and will have to follow many precautions to avoid infection and sickness. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.