MONSTER JAM

We were privileged to be able to participate in the JDRF Pit Stop kick off for the Juvenile Diabetes Research Foundation, walk to cure diabetes. We had a yummy, free dinner and listened to some motivating stories. Then they gave us free tickets to MONSTER JAM! The boys were SO excited and had a blast. It was a little scary for Isaac and very loud but fun. A very nice security guard saw us standing outside, covering Isaac's ears and gave him a set of earplugs so we could enjoy the rest of the show.

One quick story...I'm sure you can all understand. It is very stressful to get everyone ready, especially their special diets and meds, get downtown and then find where you are supposed to be. It was raining and cold and we probably walked about a mile so Matthew wasn't handling it very well. We finally found the heated tent for the dinner and they had already started the speeches. We had to check in, load up everyone's plate and work our way through tables and chairs to the very back of the tent. As soon as we sat down, an advocate came and tried to get us to be advocates as well...meet with politicians to help continue to receive funding for research for a cure. Anyway, the kids started digging in so when I was done talking and saw that everyone was settled, I dug in too. Here we are at a diabetes dinner and we forgot to test Isaac and give him his Insulin before he ate. Oops!









This speaker is actually the driver of the Maximum Destruction truck who also won!

Thank you JDRF for a wonderful night!
And, thank you all who have donated to our walk! There still is time to help us reach our goals.

Date night

Mike and I very rarely get to go out on a date together. Our kids and their medical needs are a little too much for a teenager to have to handle. Fortunately, we have some friends who were willing to take them on and give us a much needed break. After giving a crash course in finger pokes and insulin shots, we finally got to sneak away for a quick, quiet dinner at Outback Steakhouse. YUM!
Here is the proof that the kids were safe and happy. Thank you Little family



!

Monday's Memory 18

In conference they decided the best thing to do would be surgery and do the fenestration the right way. Not a great option, but at least there was an option. This would be Matthew’s 5th heart surgery. Again, not a good feeling going into this one. These are the words of the cardiologist: “I have indicated to Matthew’s mother that it is difficult to provide any statistical evaluation of the risks involved. Clearly, there is some mortality risk for this procedure. There is also a risk of postoperative bleeding or wound infection. There is some risk of neurologic injury related to either cardiopulmonary bypass, or creation of the fenestration. Most importantly, I have indicated that we have no assurance that recreation of the fenestration will relieve the plastic bronchitis. However, given the expected mortality of 50% or more for plastic bronchitis, Matthew’s parents agree that an effort to recreate a fenestration is reasonable.”

Surgery day came. One month before his 6th birthday. Waiting for surgery is a lot harder with an almost 6 year old who is hungry and understands a little more about what is going to happen to him. Mike said his goodbyes to Matthew and waited in the waiting room. I think I got to go back with him to be put to sleep this time. Most surgeries they did let me go back. That is quite an experience. I am comforted seeing for myself and knowing that he was calm drifting off to sleep but then they rush you out of the room so fast. I always have to hold back the tears.

Obviously, they had to get through a lot of scar tissue so surgery took a while. We finally saw our surgeon who said it was a tough procedure but they got it done. We waited for Matthew to be moved to the ICU so we could go and see him. We waited and waited and waited some more. I grew very anxious and felt like something was wrong. It was taking too long. I stood up and started pacing the waiting room. My heart was pounding. I started praying really hard that Matthew would be ok.

Finally, I couldn’t take it anymore. I said I’m going in. Mike followed and we burst through those ICU doors. The nurse at the front desk saw us and started shaking her head No, like STOP! I stopped. My heart dropped. What was wrong? She looked over to his bed and asked if it was ok for Mom and Dad to come back. I heard some rustling around and then Matthew’s nurse said yeah, they can come back. I turned the corner and saw the backs of a couple of people turning the opposite corner. Matthew’s nurse was busy getting him set up. I could see in her face they had had a scare. We know her well. She’s been Matthew’s nurse almost every time coming out of surgery and I had seen that look before; after Matthew’s first surgery when he gave us a scare. She told us Matthew’s saturations had dropped into the 40s and they couldn’t figure out why and they couldn’t get them to come back up. They just all of a sudden came up-they had no explanation of why. I know why! Heavenly Father heard a very scared mother’s plea and He took care of things!


Waiting for surgery


Our fabulous nurse Gaylene


Right after surgery...it always looks the same...he is just bigger

Monday's Memory 17

In September of 2005 we did another cath to see how Matthew’s pulmonary arteries looked. We thought if they had grown that maybe we could close the fenestration to increase his oxygen saturations and hopefully help him be able to walk across a parking lot without dying. They looked good and so we closed the fenestration in the lab with a special kind of plug. During this catheterization, something happened that gave them a scare and so they had us do a sleep study at home wondering if Matthew was breathing ok at night. But, that all came back fine.

In December, we cathed again and further opened those stents. Anyway, after all of this tweaking and fine tuning, Matthew was feeling better and better but was still coughing up these things.

Finally, 1 year after the Immune Deficiency diagnosis, we got the rest of our answers. It is not clear to me when the actual “casts” began to appear…if it was with all the illness and asthma stuff or if it started after we closed the fenestration. It is believed and makes the most sense that they started after closing the fenestration. One day in early January 2006, I took Matthew in for a cardiology follow-up. I once again mentioned to him that Matthew coughed up these things. He started to blow me off as he had in the past, obviously annoyed that he was hearing this again. But then he paused and said “You know, there is something called Plastic Bronchitis that can happen with the Fontan. If it continues, we’ll have the Pulmonologist look at that and maybe put a scope down in there and take a look in his lungs.” And, those are his exact words! My heart started to burn…my mind was saying THAT’S IT!!! THAT’S IT!!! I just knew it. I had searched for an answer for 2 years and I just knew it…this was it!

There was no way I was going to wait for it to continue…we were done! I went straight home, opened up the internet, called Sara. We searched. We couldn’t find hardly anything about Plastic Bronchitis. The few that we did find were Doctor’s medical publications/journals and those ended up with the patient dying. It didn’t look good!

I called the Pulmonologist and said I am bringing you a sample of this stuff he is coughing up…what’s the best way to do this? I caught a couple of samples from Matthew over the next week or so and went in on January 26, 2006. I handed that Pulmonologist the cup and he took one look at it and confirmed it…Matthew had Plastic Bronchits. He went out for a little while and came back and told me everything I had already read…he was looking at the exact same internet pages on how to treat this that I had looked at. It is extremely rare and so there are just a few theories on how to treat it. Since we didn’t know the cause it made it even more tough. We did know that Plastic Bronchitis has a 50% mortality rate. We HAD to try everything to stop this!

We started a few more meds (expensive and very hard to find meds! 14 meds total). We were doing nebs 4 times a day along with many other oral meds. We bought every kids movie there was because Matthew’s life was spent in my bedroom or in the hospital hooked up to something, masks, IV’s, the toilet. We had to put him on steroids indefinitely. That was the worst part! The steroids turned Matthew into a monster. His temper was short. He was angry and emotional all of the time. My angel had disappeared. He was throwing chairs at the door when I had to put him in time out. I cried A LOT! I didn’t feel like anything was working.

His doctors finally came together and worked hard for us trying to come up with a solution. I cry when I read their letters from our visits…things like “mother is aware of the high-risk nature of this problem” and “he clearly has plastic bronchitis which is unfortunate with a 50% mortality rate. It was a very scary time and it seemed everyone was moving in slow motion. We had BIG decisions to make.

Pulmonology did CTs and talked of doing a labectomy (removing part of his lung – IF we could find the exact lobe this was taking place in) while cardiology ran several tests since we thought this was due to the Fontan procedure he had done 2 ½ years before. They decided to try to re-open or re-create the fenestration to relieve pressures in there. This was one theory of why you can develop Plastic Bronchitis. They took him to the cath lab on March 29, 2006 and made a new fenestration with a stent. His saturations were lower all that day (that was the goal – that’s what happens with a fenestration). BUT, the next day it was obvious that it had closed. He was back up to 97%. They took him back in the lab on the 31st and sure enough there was an obstruction of the stent. They got it to open up again and he was saturating around 88%.

By his follow up visit in April it was apparent that the hole had again closed. He was saturating too high at 95 – 97%. They needed to see if the fenestration was still open. To do this, they needed to have an IV in his foot to run contrast through just the right part of his heart. After many painful attempts from several different nurses we quit and decided to do it at a later date with some laughing gas and numbing meds. Matthew was hilarious on laughing gas. They were able to see that the fenestration was not open. It had closed.

Another conference was called with the entire cardiology staff to figure out what to do with this kid. I honestly wondered if this was the end. If this didn’t work what options did we have left. We are not even sure that Matthew is a candidate for a heart transplant with everything they have changed in him and his immune deficiency issue. His body would surely reject a new heart…and even if he was eligible, he would need lungs as well. I was mad that we had gone through all that we had just for him to choke on one of these stupid things and die! I had to let myself go to that place…the dark, dreaded place that nobody likes to mention. Where am I going to bury him? How can I tell his brothers he's gone? How can I bear this?! How does everyone who’s actually lost a child bear this?…it hurts! Nobody will listen to you talk like that but it is there and you suffer alone. (That is one of my biggest pet peeves is having someone tell you “Don’t talk like that. Or, you aren't allowed to feel that way.” That’s not helpful! I can be real. I don’t dwell on it and let it ruin my life but I can’t pretend that it’s not a great possibility.) Talk about feeling alone! I found that only my faith in the atonement of Jesus Christ, calling upon Him, could and did take that sorrow away from me and I knew we would be ok if and when it happened.

"A Walk To Cure Diabetes"

Dear family and friends,
As most of you know, our little 2 year old Isaac was diagnosed with Type 1 (Juvenile) Diabetes on November 17, 2009. After recovering from the H1N1 virus in October, Isaac suddenly was very thirsty, irritable, hungry, tired, and just not himself. At first we thought maybe he was just going through a growth spurt but after several weeks of this we took him in to be tested for Diabetes. Sure enough, his blood sugar levels were dangerously high. An hour later we were overwhelmed with information about how to do finger pokes, insulin shots, counting carbohydrates, and the devastating things that can result even if diabetes is controlled well.

While having the health conditions of our other children helped ease the shock of this new lifestyle, it still has been difficult and there is not one minute of the day that we can forget about Diabetes or Isaac’s future with it. It will never go away and is a constant battle. Isaac gets 5 finger pokes a day to check his blood sugars and 4 insulin shots a day. He can’t eat when he really wants to or has to eat when he might not want to. We have to count carbs before eating and watch his activity level. It is always a balancing act to keep him within safe limits.

The insulin Isaac receives keeps him alive but it does not prevent the eventual life-threatening effects Diabetes has. That’s why we as a family are very excited to join the Juvenile Diabetes Research Foundation (JDRF) in “A Walk to Cure Diabetes” at the Mall of America on Saturday, February 27th to help find a cure. JDRF is the world’s leading funder for Juvenile Diabetes research and they believe that we can find a cure in Isaac’s lifetime. Some of the most exciting things they are working on are new types of insulin that regulate themselves and only have to be given once a day; an artificial pancreas in effect. Also, a two-drug combination therapy that causes insulin producing cells to regenerate. These may be only a few years away.

As parents, we can only do so much for our children to ensure that they are safe, healthy and happy. Won’t you please join with us and help us do what we can not do alone? Find a cure for Diabetes! You can join our team – Isaac’s Posse - and walk with us at the Mall of America on February 27th, or you can make a tax-deductable contribution on-line by going to any one of the following links. No amount is too small!

Team Leader: Rebecca Zenn
Michael Zenn
Joshua Zenn
Matthew Zenn
Noah Zenn
Isaac Zenn
We know our goals are ambitious but we feel like this is the best way to ensure that we are doing all we can to fight for Isaac and the many others like him. Thank you so much for your support!

Sincerely,
Isaac and his Posse
Mike, Becky, Joshua, Matthew & Noah
**Please feel free to pass this along to your family and friends and help us spread the word.

Monday's Memory 16

Unfortunately, the easy surgery in April 2003 and the birth of Noah in July were the calm before the storm. Matthew’s health went south and stayed there for a good long while. Beginning just a few months after his Fontan procedure, Matthew had something going on every couple of weeks for the next 15 months. Seven pink flags in his medical records mark every time during those months that I told the doctors about “coughing” & “mucus” issues just at regular visits. I remember calling the Docs a lot for treatment over the phone when he was sick and he was hospitalized twice for the same kind of illness. Once was taken by ambulance which was kind of silly but still quite frightening. (Silly because I had taken him to urgent care and they always over react at urgent care because they are terrified to deal with such a complex body. He wasn’t anywhere near the point of “urgency” that he was that time I posted before…when he was saturating at 50 and they had me drive him to the hospital. I would have been perfectly comfortable driving him there again.)

I remember it being freezing and snowy like it is now and having to carry my baby Noah in one arm and my 4 year old Matthew in the other arm into Walmart and every other place we went. I remember being SOOOO tired and just going through the motions, feeling so helpless. Matthew couldn’t even walk into the store without coughing. He looked so small, and weak and was ALWAYS sick. It was awful. He always had hives too. He seemed to break out for no reason at all. It was never consistant.

He was put on every kind of asthma treatment possible and when those didn’t work we started testing…testing for Cystic Fibrosis, every kind of allergy and disease…you name it! Everything was negative.

What was wrong with my boy?! I was desperate for some relief and some answers!

I’ve already posted about the events that followed where Joshua got sick as well and ended up in heart surgery to replace his valve and then Matthew was hospitalized two weeks after Josh came home (December 2004). That’s when we finally got SOME help. Hypogammaglobulinemia and T-cell dyscfuntion...one answer. The IVIGs Matthew receives now, as I mentioned in the previous post, are an absolute miracle!

Matthew did improve very much but there was something more. Cardiology did a catheterization on December 30, 2004 and saw that his pulmonary arteries were still small. They decided that it would be worth a try to place stents in them to help open them up. That was done on February 2, 2005 in the cath lab and he stayed in the hospital for 2 days struggling with edema again.

He continued to have issues with “mucus”. This may disgust some but Matthew would cough out these large chunks of very sticky, kind of stringy “mucus”. Sometimes they would come up easily and sometimes not. I have pictures, but I will spare you. That’s the only way I knew/know how to describe it. I told every one of his doctors. They kept telling me to talk to the Pulmonologist and when I talked to the Pulmonologist he would do another test that would come out negative or start another type of medication that didn't work and then tell me that people with asthma can have this issue.

I just couldn’t accept that for an answer. It didn’t feel right…I KNEW there was something else going on. I researched for hours, days, and weeks on the internet. I’d call Sara and she would research with me over the phone. He seemed to fit so many things mostly but nothing exactly.

We had one particularly frightening night when Matthew woke up having one of these episodes. I heard him coughing and so brought him into my room and we sat on the floor together. He coughed and coughed and began choking on this “stuff” in his throat. It wouldn’t come out. He started to panic and really was in trouble. I always WAY under react…in my mind I’m thinking…should I call 911? Most people would have just called…but not me I had to plan the whole trip.

I played this out in my head for several seconds going back and forth…what should I do? Finally, he was bad enough I started to jump up for the phone but instead I called to Mike (who amazingly slept through all of this noise) and said “Mike, Matthew needs a blessing!” Mike sleepily sat up not realizing the urgency. He started talking to Matthew and asking him if he wasn’t feeling well. I yelled “He needs a blessing NOW!” Mike jumped up and came and placed his hands on Matthew’s head and Matthew immediately stopped coughing. He was calm and began to take some nice deep breathes during the blessing. I can’t even remember if he ever coughed that thing out that night or not but it doesn’t matter. I am SO grateful that we have the priesthood on the earth today. To act in the name of Jesus Christ and use that power to bless and to heal and to save through our faith. I am very grateful for a worthy priesthood holder in my home that I can call on in the middle of the night…we’ve needed many middle of the night blessings. What a wonderful gift!

Poor Baby!

Here's a little laugh for you. Poor Isaac can't decide if he needs a nap or not. He's lasted longer than all of the other boys did. One day last week, I decided I was going to let him stay up. His brothers were home and he was happy. At 2 pm he came up to me and said "Can I have a nap?" So, I put him down. Of course, he slept until after 5 pm and stayed up until 12 am. Needless to say, he didn't get a nap the next two days because I don't like doing 12 am. I happen to enjoy my sleep very much! But then, we struggle with this...with no nap, this is Isaac at the dinner table. We can't win!

Remember...he gets a shot of Insulin right before dinner so if we don't get his carbs in...we'll be in trouble. We'll have a coma on our hands. That's why he is eating a sucker even though he had only had a couple of bites of dinner.

Monday's Memory 15

I know it’s late but here it is! (Busy day.)

Our poor Noah is often forgotten. The quiet middle child! Noah came on schedule in July 2003. He was my biggest at 9 lbs. Another VERY painful surgery for me, even worse than the last, but a very healthy great baby boy! His older brothers were so excited to see him. We checked several times during the pregnancy for heart defects. He seemed perfect! After birth we still asked for an echo to be done just to be sure. I think they did hear a murmur. The echo showed that he had a small atrial septal defect (a type of congenital heart defect in which there is an abnormal opening in the dividing wall between the upper filling chambers of the heart, the atria). A third child with a heart defect…how in the world does that happen? Even our cardiologist said “What is this?” We had him checked out about 6 weeks later and…nothing. It seems to have closed. They didn’t do another echo though so…it’s always in the back of my mind. Hopefully nothing shows up later.

Noah was such a mellow, happy, easy baby. He was sleeping through the night by 10 weeks. It was so nice!

And that’s it. Uneventful…we like uneventful!

(I haven't had time to look for my pictures...Thanks to Sara for getting these for me. I don't know how she had them but glad she did.)