As most of you have heard, we lost our sweet boy yesterday morning. He had been in the hospital with a respiratory virus. Friday morning about 2:00 a.m. he got very sick and his heart stopped. The doctors worked on him for well over three hours and air lifted him to Iowa City. The doctors in Iowa City kept him alive until we could get there and hold him and say goodbye. We are unsure of why this happened and why it happened so fast.
We are beside ourselves with grief. Kevin was such a huge and joyous part of our life. We are spending lots of time looking at pictures and telling all of our funny memories of Kevin. He was such an amazing and sweet little boy, we feel truly lucky to have had him for 2 1/2 years. We are trying very hard to concentrate on the time he was here and how he lived everyday like it was the best day of his life. He taught us all how to live and I learned more from him than anyone else. Our grief is intense, but we are taking comfort in family and friends, the time that we did have with Kevin and all of the memories that we will keep with us forever.
Kevin is in the hospital again, and he’s pretty sick. He came down with cold-like symptoms last week and was kind of tired and not himself, then a few days ago his asthma seemed to start acting up and a kroup cough hit him while he was down. So we took him to the doctor on Tuesday and he was admitted to the hospital for respiratory problems.
So far he’s been a pretty miserable boy. I think is the sickest we’ve ever seen him (except for after he was born, of course). He’s completely listless and isn’t himself at all. Tomorrow will be his 4th day there and he doesn’t seem to be improving as quickly as we would like, so we are kind of worried. Luckily his cardiologist is right nearby and has stopped in to see him a few times. She reassures us that she doesn’t see anything heart-related, and that he is just having a hard time kicking the combination of things that hit him all at once.
We hope he’ll recover soon and can come home in the next day or two.
Kevin has always had his little quirks and “obsessions”, but lately it’s his coffee. Just like his mom, Kevin loves his coffee. No, of course not real coffee - just an empty coffee cup from the Porter’s gas station. Whenever Dawn gets coffee from there or McDonalds or Starbucks or wherever, Kevin is obsessed with the cup and wants to carry it around everywhere. He’ll yell out COFFEE! if he can’t find his cup and become quite irritated. We know we are just being facilitators of his coffee habit, but he’s just a boy who loves his joe…
Kevin got to go to the Family Museum the other day for a play group with other kids. He had a fun time and loved driving the play car, of course.
Bath-time with cousin Keaton (”Kiki” as Kevin calls him) is always fun!
Last Weekend we took part in a telethon for the Children’s Therapy Center of the Quad Cities. It was on the local NBC station, and we were asked to be interviewed to give a little information about Kevin, his history, and how the CTC is helping us. Sara has come to our house almost every week for over a year - first to help Kevin with his eating issues and now to help with his speech. She has been wonderful for us and Kevin. He loves to “play” with her and her bag of toys and is always excited when she comes. We appreciate her help and reassurance that he’s doing well when we get worried about him. So the CTC has been great for us, and we were glad to volunteer to be a small part of their telethon.
We showed up at the station, had a bite to eat, then went up to the studio where they were doing the telethon live. Kevin sat and played with toys for a bit so they could get some background footage. We had also visited the CTC location a few weeks ago where they filmed him to get more footage. Our segment wasn’t long, thankfully, but it was fun to see Kevin on TV and to be able to mention Sara and how she has helped us. Dawn did a great job and sounded perfect. I, on the other hand, wasn’t expecting to be asked any questions and didn’t come across sounding as smooth!
We just got back from Iowa City, where Kevin had his semi-annual “big” checkup for his pacemaker and sedated echo. Everything went well and there were no surprises.
Kevin was a wreck this morning, having to get up and out the door around 6:30am. He always has a cup of milk in the morning, but since he was going to be sedated he couldn’t even have water, so he was crying and asking for his “bup” (cup) every few seconds. He didn’t sleep the whole way to Iowa City, but by the time we checked in at 8am he was doing alright. By the time they started checking his temp, blood pressure, etc after check-in, though, he was a full wreck again. They do their best to not make these kids wait too long, but when you have a starving 2-yr-old seeing lots of doctors and getting lots of things checked, every little wait feels like eternity.
We saw the pacemaker doctor first, and she said his pacemaker is working very well with no signs of trouble and battery life still looking like 2.5-3 years to go. When they do these checks they just hold a small “puck” over his abdomen where his pacemaker is and it communicates wirelessly with the device. This time they had a little stuffed puppy that fit over the puck and he seemed to enjoy that. Since he was still pretty cranky during this, they decided to do the sedation after all, since they were considering trying an echo without it. There was no way that was going to happen.
From there we headed upstairs for a chest x-ray. This one was easier than we’ve had before because he just sat in a chair and did really well, rather than being strapped into a silence-of-the-lambs-style contraption. His lungs looked a little wetter than they expected, but that could be because he was sick last month or because the picture wasn’t very clear. They didn’t seem worried about it and said they’ll look again in 6 months. Kevin got his Thomas the Train sticker and we headed back to the cardiologists.
They did some more general checking up and got the echo machine ready while we gave him his sedation. It’s just two syringes, which he’s used to taking, but since these aren’t banana flavored like his usual meds he fought it. He went down fighting, but eventually succumbed to the sedation and was out.
The echo went well. A guy named Roger did it for us, who has done his at least once before. He’s a great guy and talked to us, explaining everything he saw. He had a new machine that let us see Kevin’s heart in 3-d, too, which was neat but still pretty hard to see what was what. Everything looked good as far as he could tell, and Kevin’s leaky valve was leaking only mildly, so it’s good to know that it’s not getting worse. After the echo they did a quick EKG while he was still asleep. Kevin hates EKG’s because they put about 15 stickers and probes on him and he has to stay still.
Finally the head cardiologist Dr. Law came in and told us everything looked good overall. He upped his Enalapril medicine a little and made a small change to a setting on Kevin’s pacemaker (if you must know, the delay between atrial contraction and ventricular contractions was extended just a bit to give the ventricles more time to fully fill).
Then we were all done, so we just had to wake him up. He was still pretty out of it so it took a while. We removed all his EKG stickers and stuck a cup in his mouth and he slowly came around. He acts a little “drunk” when he wakes up and was slurring his words, asking for “mommy-daddy-cup-byebye”, and almost falling off our laps like he couldn’t keep his head up. He drank some fluid so they gave us the okay to go home.
As we often do after his check-ups, we stopped at McDonalds for a Happy Meal on the way home. Unfortunately Kevin was still out of it and screaming. We had to stop and daddy had to sit in back and hold him for a bit while we ate. He finally fell asleep on the way home and he’s still napping away after his long morning.
We always thought Kevin was a smart little guy, but the other day after breakfast he made it clear that he craves a little more information about current events than we are teaching him. I guess he’s an Obama supporter too - that’s our boy!
Kevin had a fun time with Easter this year, even though he didn’t quite understand why he should find eggs and he isn’t that big of a fan of candy. Nevertheless he did manage to find some eggs and have a good time.
We tried not to mention the Easter Bunny too often, because he was traumatized by a visit from the him at his library storytime. He didn’t want to have anything to do with that big bunny, and for a week afterwards he would peek around corners looking for him and saying “bunny?” in his obsessive, worried tone that he has. Eventually he got over it, but even now if we mention the “E.B.” he says “E.B.?” and gives us a look like “how could you?”
Kevin can be a little obsessive, to say the least. He’s obsessed with keys already, and in the last few weeks he’s been focusing more of his energy on obsessing about cows. He loves animals (how could he not, growing up in our house?) and particularly farm animals. Maybe he likes cows because it was one of the first animal words he could say clearly enough for us to understand? Who knows.
He has a book of animals that we read many times a day, and he always likes to go to the cow page (also featured: Bull and Piggy, which he loves to say). When we go past the cow page, he keeps his fingers there so he can quickly jump back at any second. Sometimes if he doesn’t hold his place, we’ll be a few pages past the cow page and he’ll have a panic attack and shuffle through the pages to go back and find the cow. When he finds it he always says “cow?” as if he’s very concerned about the cow and wanted to make sure he was still okay.
He still watches Baby Einstein movies sometimes, and his favorite is Baby Shakespeare because it features a cow. He knows when that part comes on and starts saying cow before it comes on. He always wants to go back and keep watching that part, but I try to make him watch the whole thing so as to not become a slave to the DVD remote, constantly jumping forward or back to the cow part.
I was at the movie store the other day and I looked through the whole kids’ section for the best cow movie I could find, and I found Barnyard. We had watched it before with Emily, so I knew it features a cow as the main character and had dancing scenes. He laughs at the movie and likes it, but then of course gets concerned about the cow in the Baby Einsten movie or the cow in the book, so we have to go check on them.
I guess a cow obsession is okay with me. At least he’s not obsessed with fire or throwing golf balls through windows or anything. Yet. I hope we can go to a farm and see and touch a real cow as soon as spring comes - I think he would get a big kick out of that.
In other news, Kevin is doing much better now. He’s done with his steroids and we’re just doing breathing treatments whenever we think he needs them, maybe one a day. He’s still a little whiny and tired, but other than that he’s back to his funny, dancing, book-reading, demanding self. It’s nice to have that boy back.
Before he got sick, we went to a gathering in Iowa City for the Heart Friends group that we are part of. It was in recognition of Congenital Heart Defects Awareness Day, which is every Valentines day. It’s just another chance for us to visit with other families of kids born with heart defects - we usually see the same people once or twice a year at gatherings. It’s always good to see kids growing and thriving, and not always being able to pick out the “heart kids” from the “normal kids”.
Kevin had a good time playing in the gym with all the basketballs and the other kids. He spent a lot of the time keeping an eye on the big bird that was roaming around. He never wanted to get close to him, but he did end up giving him five and playing catch from a long distance.
Finally, Kevin had a great time eating the cupcakes and cookies that we had around for Valentines day, so I had to post some of those pictures…
I just wanted to post a quick update. Kevin is doing fine, he is getting his breathing treatments every few hours and his oxygen level is staying in the 90’s so hopefully he will be able to come home in the morning. He is still pretty cranky and keeps pointing to the door because he wants to go home, can’t say I blame him!
Matt is at the hospital with Kevin for the night, I came home with Emily. I have been sick for a few days too, so I came home to sleep and will head back early in the morning.