Zach's teacher...

In October I mentioned to Zach's teacher that I was doing the 31 for 21 and if she so felt inclined, to write a little blurb about Zach. She emailed it to me today and it filled my heart with joy to read it.

Teachers, especially special ed teachers, are truly unsung heroes. Zach's aides and teachers mean so much to our family and I am so thankful for them.

Zach Hiatt embodies exuberance as well as heart.  Zach is in my class at school, and I am lucky enough to be Zach’s teacher. Zach’s smile just lights up our room.  Every morning, he’s got the greatest hello for everyone.  When he shares something during group time, his story is punctuated with gestures and demonstrations like when he says, “I’m Buzz Light Year, to infinity and beyond!” with a swish of his cape and a leap.

Not only is Zach exuberant, he’s got a great heart. One day, I was having some medical issues so I took the morning off of school to see a specialist.  When I returned, the sub teacher was finishing reading a book to the students.  I quietly sat down on the floor next to Zach.  Zach beamed and leaned into me and said, “Rhonda, we missed you.”  My heart melted.  It felt good to be missed.  Then Zach said, “Where were you?” and I said at the Dr.’s office.  Zach then said, “Are you, O.K., Rhonda?”  When I told him I was O.K., Zach said, “Did the Dr. give you a lollipop?” That cracked me up.  It felt good to laugh.

I feel so privileged to be Zach’s teacher, and I often wonder, “Who’s teaching who?” because I learn so much from Zach’s love of life and his tender, good heart. I love watching him grow up and learn new things—every day it’s something new with Zach!  The latest thing is “I got it, Rhonda.”  Thank you, Zach, for all you bring to all of our lives!

Teacher Rhonda

Thank you Teacher Rhonda. For everything that you do.

Chris' surgery...

Sunday afternoon Chris, my mom and I drove down to the Burbank/Glendale area and got checked into our hotel. Took part in the hotels complimentary happy hour and then took a walk to find dinner. After that we called it and night and we all went to bed. Monday morning we were to report to the hospital at 10am to get checked in and for things to get going. When the hospital called me on Friday to go over the pre-admitting stuff, they also informed me that he was scheduled for a transesophageal echocardiogram, or TEE, at 12pm. They also needed to do pre-op lab work.

We left the hotel at 9am, not knowing what to expect from LA traffic. We made it to the hospital fairly quickly and the thoughtful guy Chris is, he went and filled the van up with gas so we didn't have to worry about it when it was time to make the drive home. We parked at the hospital and headed in to find admitting. We got through admitting about 9:30 and the guy who did all our admitting paperwork walked us to a lobby and told us to wait there and someone would come get us. We waited a very long time but there were also others who were there for tests and what not who had been waiting over an hour so while we were annoyed we didn't think anything of it. At 10:50am my cell phone rang. It was a nurse from the Short Stay area calling to see where we were. Once we rushed to where we should have been all along they got things going. The drew his blood, started his IV and got him hooked up to the monitors. They explained that the doctor performing the TEE wanted the blood work back before they could proceed so they were rushing that process. Things were moving right along and on schedule to start the TEE at noon. The specialist doing the surgery came in around 11:45am to check in with him. Shortly after they informed us that his blood work had been lost at the lab and they would be coming to re-draw it. They called the doctor doing the TEE and let him know things would be delayed about an hour. Shortly after, they found the blood. It had gotten stuck in the tube between the nurses station and the lab. By this time the doctor had already delayed getting there for the TEE and the specialist doing the surgery was not happy. Blood results were finally in and they inform me that they are going to do the TEE and then take him right in for surgery so it would be about 4 hours or so until the doctor came to talk to me.

We decided to grab some lunch while we waited but first we were going to unload some of the stuff we had in the car. We had a laptop, Chris' PSP, magazines, etc. Too many things to be dragging around the hospital that we weren't utilizing. We asked a nurse where the cafeteria and she explained that they had some food for sale but that their main cafeteria was under construction. We decided that since we had so much time, we would leave and grab some lunch and come back. We paid the $6 daily max for the parking garage. The parking garage that does not have in and out privileges. I drove around for a bit and found an El Torito. It was packed but we went for it anyway. We sat down and decided on their lunch buffet. The server came by and informed us that it was $3 Margarita Monday. Yes Please! I took a couple sips and it was heavenly. Cheap low quality tequila was just what I needed to take the edge off. I told my mom I felt guilty for not being at the hospital but admitted that it was a great distraction. I was getting a plate of food when my cell phone rang. I stepped outside to take it since it was really loud and crowded (It was $3 margaritas after all). It was the hospital. The nurse was frantic asking where I was. Long story short... they forgot to have Chris sign the consent form. FOR THE SURGERY. And being that he was already sedated he could not sign it. So I needed to sign it. And they couldn't start the surgery until I signed it. I told her I was on my way. I went back inside to tell my mom and decided that I couldn't have been very far from the hospital and I wasn't going to deal with parking and leaving again so I decided to jog/walk back to the hospital. I grabbed my handy IPhone, pulled up my GPS, and took off. It was a little less than a mile away. I probably made it back faster than I would have driving. As I am walking in the hospital my phone is ringing again. It is one of the doctors in the cath lab looking for me. Because... you know... Chris is LAYING ON THE TABLE. I sign the form. Asked 5 times if there is anything they could possibly need for me to be there for and walked back to lunch.

We finished up pretty quick and got back to the hospital. We expected to wait another 2+ hours to hear something so we set up camp in the waiting room. Shortly after someone called the volunteer desk to ask if anyone was there for Chris. I got a sinking feeling in my stomach. The doctor came out and sat down to talk to me. He explained that they were not able to do the ablation. He said, several times, that Chris' heart is "very abnormal". When they went in they shocked his heart back to a normal rhythm and his heart rate was low, which I could have told them would happen. Then he started looking around and he explained that all of the electrical currents in Chris' heart reacted very abnormally when he went near them. Because of that he did not feel comfortable doing the ablation because he felt there was no way he would have gotten off the table without a pacemaker and at his age they obviously want to do everything they can to avoid that. He called Chris' local cardiologist and discussed what was going on with him and they both decided that they wanted to implant a loop recorder. Basically what this does is record every beat that his heart makes. It is not attached to his heart the way a pacemaker or a defibrillator would be. Every so often he will check in with his cardiologist who will download all the information and can see exactly what his heart is doing at all times of the day. Chris has always had a pretty low heart rate but they want to see what is going on at night. This will hopefully buy him at least 5+ years without needing a pacemaker. Because Chris was sedated and could not consent to this procedure they could not do it until the following morning. I was finally able to see him a couple hours later. He was starving and uncomfortable. He had to lay flat on  his back for hours after they surgery because of the incision sites. They went in on both sides of his groin so he was pretty uncomfortable and had to have 10 lb sandbags on each incision site to help the blood clot. After feeding him some dinner I called it a night.

At 7:30 am this morning they placed the loop recorder. It was a fast procedure and Chris was awake through the whole thing. Afterward he had to be watched at the hospital for about 5 hours and then we were able to come home. His chest is really sore and it is hard on him to not be able to pick up the kids and we have to constantly remind the kids to be gentle with daddy. Zach and Chris rough house quite a bit so it is hard for Zach to understand and I feel like we are constantly on edge that he is going to charge Chris with a slam hug. We will followup with Chris' local cardiologist later in the week and talk about where we go from here.

The latest with us...

I completely failed at hitting 31 for 21. I think I barely hit half. In my defense, I have had a lot going on and I really feel that I succeeded in my mission. I think I truly raised awareness and helped educate people on Down syndrome.

Now on to my excuse as to why I failed...

The last few months have been a challenge, to say the least. The time has finally come to update blog world on what is going on.

For those of you that don't know my husband, my 37 year old husband, had a stroke. Ever since then, we have been consumed with doctor appointments, decisions, and lots of stress. After the failed attempt at converting his heart his cardiologist referred us to an electrophysiologist to talk about surgery.  There are no electrophysiologists in our county. Our HMO referred us to a doctor in the Los Angeles area which is about 3.5 hours away from us. We traveled down there a few weeks back and met with the specialist who informed us that he needs the surgery and he needs it soon. The surgery that he needs to correct his heart abnormality is a Cardiac Ablation. On top of that, he also informed Chris that he needs to be prepared for a pacemaker. He said there is about a 95% chance that he wont need one, but that it is something that is a possibility. In the state that his heart is in, for a guy his age, he should have a heart rate close to 200. His is in the 70s. The fear is that when they correct the abnormality and get his heart beating in a normal rhythm his heart rate will be so low that a pacemaker will be necessary. Which is exactly what happened when they did the cardioversion back in August.

After many phone calls and schedule changes we have a date. Chris' surgery will take place next Monday November 8th. Anyone that can spare positive thoughts and prayers, please send them our way that he wont need a pacemaker and that the surgery will be successful.

Happy Halloween!

This year Zach insisted on being Dance A Lot Robot and Hannah wanted to be Jessie. I am so thankful I know a very talented woman!