Hello I am Zane Huber and I am 6 years old now! Below are my pictures and the story of my life.
Phil & Kari-March 17th 2001
Hi there, I’m Kari, Zane’s Mom. Here is a little background on how Zane’s World began.
Phil and I met in 1995 on St. Patrick’s Day, and were married on that same day, 6 yrs. later. I was a florist/wedding planner and Phil was a trailer/diesel mechanic. It sometimes is true what they say, “love at first sight” I knew he was the guy for me.
A few years later, Phil and I were very happy to learn we were pregnant! Unfortunately, we had a miscarriage. The following year we became pregnant again, everything was going well, and 4 months into the pregnancy, we lost the baby…this was very sad and very hard. We had told the family and we were all getting very excited. After some tests were done with our doctor, they said “they were not sure why,” these things just happen sometimes.”
In 2003 we became prego again! We were super happy and watched the pregnancy very closely with our doctor. I really enjoyed being pregnant, besides the morning (I mean, all day) sickness. I developed a love for Root Beer, Mexican food and tomatoes, which I owe all to Hannah.
All was going great, until July 4th when I began to bleed. We went to the hospital and doctor decided to give me the steroid shot that would accelerate her lung growth. It was to be followed up by another the following week. I never made it that shot…My water broke that following Wednesday and Hannah Paige was born on Friday the 9th of July at 11:11 am (which just happens to be the EXIT code for tuckers,) That’s what our cousin Wanda tells us : ) Kinda Funny! Hannah was 4lbs. 13oz.’s and 18 in. long. A mere light weight in our family. She was born early, about 29 1/2 weeks, it was very scary for us and our family. She had some complications but surprised us and the doctors. Hannah was able to come home with us after only 15 days. She is now a spunky, bright, loving girl.
We loved having Hannah and knew we wanted more. We suffered a few more early miscarriages between 2005/2006, both Phil and I were poked and proded to find out what the problem was. In the middle of all this, we hit the jackpot when we got prego with Zane. I was going to the doctor every few weeks and did every test imaginable to make sure all was well. Amniocentesis was very nerve racking… We felt blessed and comfortable when we made it to the 32 week mark! Yes, very happy!
On February 16th Phil was getting ready for work as usual about 3am. I sat up to give our goodbye kiss and I felt a gush….it was blood…and lots of it. After Phil called the doctor he was asked to bring in what ever fluid or blood he could collect from the trauma, so they could look at it. I jumped into the shower and was in the car and on our way in no time, to the St. Joseph’s emergency room. The ER staff had us wait WAY TOO long and doctor came looking for us, he was not happy that we had to wait. He checked baby’s heart rate and immediately rushed us in for emergency C-Section.
Zane was born on February 16th 2007. He was 32 weeks gestation. Zane had a very traumatic birth and was born after he lost over 60% of his blood. This was caused by Vasa Previa, the survival rate is very low for babies. We were so blessed he survived. He was small and perfect, but very pale, ghost white, from the blood loss. His eyes were dilated, so they were black. He appeared alien like. Hard for a mom to say about their beautiful baby. The doctor said this was caused from the adrenaline. Zane’s Apgars were considered normal and his breathing was steady. Because of the massive blood loss and the time it took for the doctors to figure out what was wrong, many health problems arose. Zane suffered DIC , (dissemenated intravascular coagulation.) He had left hydronephrosis (swelling of the kidney due to back up of urine.) Blood clots in bladder, Gallbladder sludge (sitting bile and particulate matter in the Gallbladder.) Gross Hematuria (blood in the urine.) Oliguria (low urine output.) Hypotension (low blood pressure.)Non-cystic periventricular leukomalacia (white matter brain injury)
Touching Zane for the first time at St. Josephs
Zane spent about 13 hours at St Joseph’s hospital, where he was born. Phil and I had no idea the extent of Zane’s condition. His for mentioned conditions were not brought to light until he was transferred to UC Davis.
After I came to… and a brief recovery from surgery, Phil wheeled me down to see my beautiful baby boy at 6pm. At 7:30 that night, the staff came and told us, Zane was being moved….we were confused and scared. It was painful, knowing I couldn’t go. Phil was so torn, but we knew, he had to be with Zane. He raced to meet the UC Davis ambulance in Sacramento. It was one of the loneliest nights of my life…It still hurts right now, thinking about it.
The next evening, the hospital actually put a nursing mother, of a healthy baby, in the same room with me…with lots of happy family. It was so hard, that I had to say something, they apologized for the insensitive over site and I was again by myself.. thank goodness!
Phil bounced back and forth from hospital to hospital trying to comfort both of us.
Phil brought Hannah to visit Mommy!!!
But after 2 days I checked myself out, I had to get there. I remember how it DROVE ME CRAZY having to be wheeled around in a chair because I was not healed yet. I paid the price though, I had a few complications of my own, jumping the gun to get out of hospital (but what mom wouldn’t)
Our family and friends were so amazing and supportive…Istill shake my head… remembering all the emotional support.
Phil had been with Zane, so he was use to the changes Zane was going through. Nothing could have prepared me for the roller coaster I had just got on. When I saw him he looked so good, like a big healthy baby. But Phil had to bring me to reality…Zane was swelling because his kidneys were not working and the multitude of fluids he was being pumped with.
Seeing Zane at UC Davis for the first time.
Because of the DIC, Zane had numerous blood transfusions. He seemed to puzzle the doctors at UC Davis, they were always troubleshooting and consulting on what to do next. After several days of no improvement, he was given NOVO 7, Zane’s blood disorder improved dramatically. Once he was stable the next step was a to insert a Broviac line, basically a surgical catheter for children. This was supposed to be relatively simple…but it wasn’t.
They had us sit in the waiting area, we were with my parents, bother Kevin & wife Sabra. They updated us, that all was going well, moments later we heard the alarms go off and the lights start flashing…all staff rushed in we were left with no one around…we looked at each other thinking, “that can’t be Zane??” I saw the receptionist (who we became very close with) flash me a look, but she wouldn’t say anything. We soon found out that Zane had an adverse reaction to the medication & flat lined twice. No words to describe that feeling…we were all shaken up.
Lots of praying followed.
As soon as Zane was stable, UC Davis decided they had done all they could, Zane needed a specialist, a Nephrologist. They highly recommended UCSF, the best in the country.
Looking back, we had wonderful doctors and nurses at UC Davis. One of them would put Zane’s blankets on rotation with me, so every day, I would get the blanket he had slept with and he would get mine. His scent was so comforting to me when we were apart. I actually wore them on my shoulder.
After 7 days, Zane was transferred to UCSF. This night is still so vivid…
It was very stormy… rainy, windy… the whole bit. They decided to transfer him late, the drive was very tense. It was stressful following behind the ambulance in that storm….praying he would get there safe.
Greg, aka Manny (brother in-law) was with us, he had come to support Phil while I was stuck at St. Josephs. He was so awesome through all of this. Supportive in every way.
We followed the ambulance to San Francisco. Once there, I remember feeling protective and lost. The nurses were so wonderful to us. One even found us a room at 2 AM. Thank God, Manny was able to help us with the room, other wise we would have slept in the waiting area. It was hard to leave Zane, but we were loopy. The next day, we went through our life story again, with all the doctors….this gets exhausting! The hardest part of that meeting was to hear that Zane had end stage renal failure, other minor health problems and that he would probably have some brain damage….this was completely devastating. I knew brain damage..but..renal failure..what the heck was that? We were so overcome… that’s when we met Nurse Rachel (Zane’s Angel) She knew, the doctors, had to give us a worse case scenario. She knew they gave us the feeling of ” NO HOPE.” She took us aside to give ” HOPE” back to us… We will always be grateful to her for that. To this day, we still have a wonderful bond with her and see her whenever possible on our visits to UCSF.
We stayed a few days and made the decision to get back to Hannah. We missed her soooo much. We needed our family back together. We were so grateful to Canny and Uncle Kevin for loving her while we were away.
SSSHHH… don’t tell anyone, but we had to fib, just a little…Hannah was not aloud to see Zane because she was only 2 1/2. : ( and you have to be at least 3.) So, on our way back to San Francisco after picking her up, we told Hannah she was 3…YEP! It took us a while to convince her later that she wasn’t. It was one of our best decisions..she did great at the hospital!
Zane was supposed to stay in the hospital for quite a while longer, in fact we were debating on setting up temporary residence at Ronald McDonald House (a wonderful organization!) where we had been staying. We were very surprised when UCSF told us after only a month, he was able to come home in a few days and he was stable enough for circumcision. Here comes another nightmare….
Zane had had complications from the circumcision, they could not get the bleeding to stop. Zane underwent another blood transfusion. He had to stay longer, we felt awful…we would have never made that decision, to have that surgery done, had we known. Luckily after 3 days it was under control and we began our ever-learning road of how to be nurse and doctor to Zane. We brought Zane home on March 10th 2007 Yay!
While we were at the hospital, even though we had private insurance, we were asked to apply for assistance to help with medical costs …we never qualified. The guidelines were so low. (I don’t think they’ve been changed since the 70’s.) We were getting concerned about, how we were going to make it. Zane’s birth caught us off guard of course…we were not prepared for how expensive it gets to travel and stay in different cities and hospitals. We had some wonderful friends, who privately got together to help us…. Thank you, Mable, Scott, Butch, Kenny and all our friends that lent their support. It helped with gas, lodging, Oh, and parking!!! Ugh…that gets expensive!
So, We continued taking Zane to UCSF every month for his renal appointments. This was in between the other doctor visits. I felt like we were always in an office. But very thankful we lived somewhere we could get great health care. Zane was on numerous meds, some covered by insurance, some not. This can be exhausting, the insurance company run around…to this day it’s so frustrating.
As Zane grew we discovered he need glasses at 18 months, they really helped. We never had a problem keeping those on, he loved ’em.
When Zane was about 2 1/2 UCSF approached us about Zane needing a kidney transplant. They were concerned that if he needed one in the near future, he was just not big enough to receive the kidney. They asked us to consider a feeding tube..I said, we would like to try and do it naturally through a high calorie diet. They supported this and we tried..but as we came to learn, kidney disease causes a lot of things. One of them is failure to thrive and not a lot of interest in food. It was a huge challenge. After about a year Phil and I decided a G-Tube would be best for Zane. In December of 2008 he got his Mickey-button and was on our his way to getting chubby. Thank goodness for Phil, he was so patient and smart. He was my rock…what ever I could not do at first, he did. I have to admit before Zane, I was very Squeamish…and I was always afraid I was hurting him. He has turned me into a pretty good nurse!
In between this, UCSF, asked about, us, family and friends, being screened to be a kidney donor for Zane. They were amazed how many applications we submitted. We were so grateful for everyone who was able to open up and offer this to Zane…amazing. Phil and I, of course were the first to step up, Phil insisted he be the donor, he had a good feeling about being the match. I protested because, financially I just could not see us losing his time off work and what about complications,… would we lose our insurance! Phil still insisted, he said I just can not bare to see you and Zane in surgery at the same time. Phil went through the very lengthy and costly screening…He was a 3 point out of 6 point match. This is good and he could have been the donor, but there were a few other factors and Phil was ruled out because of some family health history. Phil swallowed the bitter pill of rejection, not an easy one. It’s hard to be told “you can’t save your son’s life.”
I was next to start the screening process. To our relief I was a match! Not just any match but a 6 point match! Zane’s doctor said “it’s like hitting the kidney lotto!” But on this roller coaster of life, there was bad news… I was almost ruled out. It appeared Zane’s blood was combative with mine. Not sure, but it’s possible it could have been from his prior blood disorder at birth. After more tests, we found it was not my blood that his was combating, it was his own. Yes, it gets VERY COMPLICATED.
Doctors predicted Zane would need the transplant by the age of 4…when we passed that marker, we wiped our brow in relief, you see, the longer we can keep Zane’s kidneys stable the better. Kidney transplants are not permanent and can be unpredictable. Average life of a transplanted kidney is 10 years. There are cases of shorter and longer spans. Zane will more than likely need 2 in his lifetime. The next prediction for transplant was 6…yes it’s a roller coaster! Zane’s doctor’s have been impressed and happy with Zane’s stability. His kidneys are now functioning between 35 & 40%. We have recently seen his creatnine levels rise in our last few visits, but still stable. Doctors plans are to try and avoid Dialysis altogether if possible.
Meanwhile…Zane was tolerating his G-tube feeding pretty well, we were relieved. It was hard though, every night I had to use so much tape to keep the tubes in place, that in the morning we both looked at each other with UGH eyes….I hated to peel that off every day. We do our best, I try and keep it light and drag ANY humor I can into it. He is amazing and so darn strong and super funny : )
After a year of the G-tube, his gastro team noticed he was getting quite chubby. But he was not growing taller on his own, because of his kidney failure. They said he needed the help of growth hormone. Again, we had to think about it, putting Zane on another medicine was hard to swallow. After counseling and educating ourselves at home, we knew we had to give Zane this edge, there are only a few windows in life for the growth hormone to work. So, in September of 2009 we learned how to give nightly injections. This really sucked…..Phil is great, he did all the injections and Hannah…amazing…she would distract Zane with toys or make funny faces. While I hugged and kissed him. Zane responded Awesome! to the growth hormone. He started growing and started to catch up to his age group in stature.
Through all of this, mind you, I have been grateful for our insurance. Phil works very hard to provide good healthcare for us. With that said, it has been a complete nightmare sometimes trying to get things covered. 95% Zane’s procedures and medicines have either been hard to get approved, or we get the run around. Some have come back to bite us in the butt. ( I have always JOKED ) that they have our picture hanging in the insurance office and use it as a Dartboard ; ( because there are so many claims. We have… slowly spiraled… into just hanging on financially sometimes. Over the years, 20% of several $100’s of thousands of dollars in medical bills takes it’s toll on your finances and your credit. A few times we were actually sent to collections….while trying to negotiate between the care givers office and the insurance company. Go figure!!?? One person say’s “everything looks in order” and the next month you find out, they never took care of a darn thing! Then there are the times when the paperwork gets messed up and codes are entered wrong…I think a good %, is a rotten game they all play.
Back in January of 2013 we lost our co-payment assistance for Zane’s growth hormone. It was the only help we have ever received for medical bills. The growth hormone was $3,500 a month. The co-payment assistance picked up the remaining 20% of that. I check every month to see if any funds have become available, so he can restart therapy again. Nothing yet…
This is one of the reasons we are here today, trying to be proactive. It was a very hard decision to reach out and ask for help. We wouldn’t have ever done this without my brother Kevin. He started this website and told us “bring it to life Kari and Phil, it’s all yours. It’s been rough, re-living these feelings we’ve put aside after Zane’s birth. But our wonderful family and friends, tell us it’s for Zane, “Suck it up!”
Kev and Sabra, along with my brother Darin and his family’s help, started a haunted house and pumpkin contest in 2005 in their back yard, just for fun! They did it annually, “Good Times!” When Kev and Sabe moved in 2011, they asked if we could build it at our house, we said sure! We had friends and family out that year and Dan (a family friend, who has a lot of experience fundraising in Lodi, said, “I can’t believe you do ALL this work for fun!) He suggested we open it for fundraising, to help with Zane’s medical needs and bills. And that is where we are today.
Zane has become a very smart, funny, secure and loving little boy. He has amazed us! We are super proud of him. Along with his sister, they are the lights of our life….we are so blessed.
We had wonderful support from our families too. Thanks Dad and Jude and Steve and Nancy for the lunches in the cafeteria and the $$ money you would give on the sly without word, just a smile : ). Mom and Walt you were so supportive of everything…thank you! My Thanks, Sabe for the pretty clothes and body spray to help me feel beautiful. Kevin and Darin for being my big brother rocks and supporting our kids as if they were your own. Susie for the great hugs and all the prayers. Our nieces and nephews for the awesome art work, we love them to this day! Manny, without you, this would have been a whole lot tougher, thank you! The prayer chain all around the world…cousin Wanda. To all of the friends and family for the unconditional support. You know who you are : )
Zane will be heading in for surgery on his foot in December, I will keep this updated.
To Be Continued……………
Zane with Dr. Lee his renal doctor
Zane having blood preasure checked
Kinda funny, out of all the procedures Zane has done, this has always been his least favorite. I say, “Zane, it’s just giving your arm a hug.”
Hannah & Zane, not even 10 minuets after leaving UCSF on our most recent visit in September 2013
Zane had a stable visit and sonogram this December 2nd.
Some pics from our December visit.
Zane getting his sonogram…such a tough guy. This, to date, was our easiest, you can tell he’s getting older : )
Zane going into Triage.
We always pack chalk : )
Zane, with the lovely Nurse Rachel. She took care of Zane, as if he were her own when he was born and we have kept in touch ever since. She is an exceptional human being.
That was a long day…now we are off to Acampo and will be returning for foot surgery at the end of the month.
A complimentary pic of Zane’s toes before surgery
Well Zane had his foot surgery yesterday, we really worked hard to get to this point. Trying to keep him well through October, November & December…whew… some weeks were successful and some were not, but we made it there, well and happy.
Zane arriving at UCSF with his Mario and Yoshi protectors!
Doing Christmas arts and crafts while we wait : )
Daddy & Zane right before surgery
Zane had 2 fused toes on his right foot that we had decided not to worry about when he was a few days old, because of his other major health problems. But as he grew the toes became painful at times. He lost toenails about once a month and the bone in one of the toes was beginning to curl because it was supposed to grow longer than the other. After much consideration over this past year and under the care and consultation of his doctors, now was the best time to have this surgery. Better now than after transplant.
Hannah, Nurse Lindy & Zane post surgery
Zane with Cookie the Mouse
Zane thought it, Very Cool, to ride in a wheel chair at discharge
Zane had the best team at UCSF and an amazing doctor who performed the surgery, we are so grateful to them. They had to do a skin graph from the groin to mold around the two toes, there was not much tissue between the toes because they were so close together. We are keeping a close eye on those, to make sure they stay nice and pink. The tissue will start to grow and attach itself. He is very sore and not use to having this kind of discomfort : ( but we have him on pain meds to take the edge off. He is in a cast up the knee and has a hard time maneuvering around. He has to keep it elevated for a few days….and no bathing for 2 weeks…. FUN HUH! 8 )
We appreciate all the prayers and love sent his way. Thank you, to our wonderful fam who brought things to comfort him. He has enjoyed reading cards and text messages from all.
xoxo Zane’s mom, dad & big sis
Below a few pics a few days after surgery
This is where his skin graph was taken(groin)
Ok, we are now returning for our check up…let’s check on those lil piggies!
He had lots of art work..it was sad to see it go. And as you can see he and his cast got around!
Our lovely Nurse Shelley
OOps! We need a lil soak…
Some TLC from Mommy ; )
A little rough, but Dr. Hanson, says “they look great!”
Things were going well, but we ran into to some trouble….they got infected. So back to the doctor for some antibiotics.
Whew! Have we been busy since this picture. Zane did get an infection. We were able to clear it up with antibiotics. He has healed nicely and proved his new toes make him run faster, he proved it when he ran like crazy at our annual family Easter baseball game.