Grant's Journey

I apologize to anyone who feels like we dropped off the planet... life is GOOD!! I really honestly didn't know what to expect from our summer. We have seen so many kids have difficult paths with their Fontan's and I almost feel guilty that Grant has done so well! We are almost 2 months past this huge milestone and I can really say that life feels back to normal... even a better normal than we were enjoying before! I have already written about some of the tough things related to home life, but given a few more weeks to heal and recover, Grant is feeling better than ever. We have taken him up to the mountains (as seen in these first few pictures) and he did great! He had more energy and had better coloring than I have ever seen. His energy is awesome. He is playing harder and going longer than ever before. We have been using our summer nights and weekends to finish off the remaining work on our basement and Grant insists on being right in the middle of it all. This is his n...

Pictures are from a recent visit to the zoo as well as a few shots from Grant's fun time in the greenroom after his telethon appearance. I have been thinking about this post for a week now. It is truly incredible for me to say the words post Fontan and realize that it describes our lives! Forgive me for a moment while I reflect. Being told at our 20 week ultrasound that our baby boy did not have a fully formed heart was devastating. Waiting 4 more weeks for an actual diagnosis and then being told that we should abort the pregnancy was awful. Finally learning that there was a series of surgical interventions that could help extend our baby's life and help his heart to function while still missing two of his chambers was daunting, but hopeful. We knew that statistics were still not in our favor and after Grants first two months of life, we were so exhausted and traumatized that I honestly couldn't fathom a time when we would be able to look into our immediate future without ...

If you happen to live in the Southeastern Idaho viewing area, be sure to watch the Primary Children's Medical Center telethon tomorrow. We were asked to share Grant's story this year and I am excited and nervous too! We will be on at 3:30pm on KIDK (channel 3). Our on air time is about three minutes, so we are just trying to figure out how to share the impact that this hospital has had on our lives in such a short time! If there is a video somewhere, I will be sure to provide a link when I know where to get one.

First thing in the morning, holding his shoes and dreaming of being able to go outside to play. I love it. I apologize for the many friends who have been wondering about us in the last few days. Blogging has taken a back burner to sleep and both have been rare commodities around here! So in order to catch up, here is a brief view of what the week since we have been home has looked like. These were all taken since Friday when Grant finally let me step more than three feet away from him to take a picture! Looking back, I honestly think that it probably would have been good for Grant to stay in the hospital for a few more days to monitor him and get him feeling a little better, but I am still grateful that we have been home, despite the difficulty of being here with a little boy who has been feeling pretty crummy. We have spent a lot of time doing this (Kristi, the apps you found us are perfect!!) and his appetite is finally starting to come back too! We have a love hate relationship with...

As my sweet friend Robbie put it, post surgery home life is B.U.S.Y. Sheesh. Sorry for those who have been wondering if we are alive. Our first night home was AWFUL and honestly, yesterday wasn't much better. I have to give the kid a break, he is only 10 days past open heart surgery, and on top of all that, he has two molars coming in. Ouch. Grant has been very clingy and very insecure. He has developed this whiny screech the moment I am not directly touching him and he refuses to sleep unless I am in his bed, Daddy is right next to us, and he is sleeping upright while leaning against me. He moans and cries out in his sleep like he is fighting off some lab tech. It honestly has broken my heart and it makes me wonder if we have traumatized him for life. It is a really good thing that he won't remember this and eventually, time will fade the memories for Kyle and I too. Now before that sounds incredibly depressing, here is the good stuff. He finally got things moving in the bowel...

It's true. I almost don't believe it myself. After yet another AWFUL night (Grant screaming most of the night after people kept coming in to bug him... I even lost it and was bawling after we had a third blood draw of the morning due to the sample clotting off) I just about sprinted out the door. I had my mind made up before the doctors even rounded that we were done being there with a miserable two year old. His spirits are broken and he is hysterical when anyone walks by. Luckily, the CT team agreed with me and we got our discharge papers! I thought we would have to stay local to keep current on labs and X ray, but we agreed to take him to our doctor here, call Bonnie every few days, and be back next week. I am still worried about effusions, but since he is still not pooping, he is also refusing to drink and eat much. We won't know if he is going to have a pleural effusion until he starts drinking and eating, so it is a vicious cycle. I agree that getting out of there is ...

. . .Discharged . . . HOME! (now I will let Allison get to the real post since I am sure you are all dying to know the details. :-)