Gtube Placed!

Hello Family and Friends,

I write to you in a surreal state this evening.

Even more so than Lucas' heart surgery, which was a huge milestone, I feel a sense of relief and a milestone.

Even when the heart surgery was scheduled (and rescheduled 4 times!) we knew that there were 2 small procedures that still needed to be completed. Tubes in his ears which happened on October 3rd. It was a very quick procedure and I took him home that day, but he DID need to be put under anesthesia so that is always a bit nerve wracking. The other procedure was for a gtube. It became clear that he probably won't recover the ability to eat fully by mouth any time soon so a great solution is to have a simple procedure where they make an incision in the front of his belly above and to the right of his belly button and insert a small apparatus that can be opened and closed where his feeding tube can be connected. This frees up his nose and throat from having a tube jammed down it all the time inhibiting his ability to breathe and swallow and keeping his esophagus open. So many benefits all around. This procedure was scheduled for October 21st.

Lucas was sick so it got pushed back to a very special day. My birthday, November 18th! I have to admit I was so very disappointed when they pushed it back. Lucas has been a very strong and active little boy since the heart surgery and he was pulling the feeding tube out of his nose very often sometimes multiple times a day and maintaining the stickers on his face to keep it in was no small task. I found myself shrugging and laughing when they suggested that day. Why not?! 🙂

Fast forward to yesterday, I actually wasn't even sure if they would do the procedure yesterday so it was a blessing that they did. He had been sick with a minor cold the week before and he still had a couple very minor symptoms, but they checked him out and he was good to go! The procedure took about an hour and I needed to stay with him in the hospital overnight because they don't want to actually use the gtube for a feeding until at least 12 hours after the procedure.

I got to be there when he woke up and he was such a trooper. It is a little weird that he's got this plastic-like knub on his tummy, but the amount of hassle and health benefits greatly out-weigh the weirdness.

I have to say it was surreal to spend the night in the hospital again, I was so grateful it was only for one night and everything went smoothly. We got discharged around 4:30pm and headed home. I met Fernando and the girls at Southcenter to have dinner at Olive Garden for a belated birthday dinner and got home just in time to go to bed.

It's an unspeakable relief to see his face clean and free of bulky and usually dirty tape and a tube. He doesn't seem to mind the addition of the knub on his tummy and here we are.

Hopefully past all the procedures that have been coming for more than a couple years and the end of the beginning of the health saga of our little man. He recently had a swallow study where they watched him swallow different consistencies of things with an xray camera. He is still aspirating but he's approved to drink liquids that are thickened and he is free to eat table food and purees as much as he wants so now the work begins to increase how much he is eating by mouth and we have the peace of mind that we can give him whatever nutrition he needs to fill the gap through the feeding tube as long as he needs. It will likely take at least a year to work him up to eating entirely by mouth, I am encouraged that he has an interest in food and eating.

I've been telling people that I'm blessed to have gotten connected to a mom in my area who has a little boy with down syndrome who is older than Lucas, he also had a feeding tube and got a gtube. She was told that he would likely develop enough by the time he's 3 or 4 to have an improved swallow and she found that to be true. So that's my context. The truth is, he'll need the gtube in as long as he still is not eating food entirely by mouth. I'm hoping, it won't be longer than 3 or 4, but this will now be the unfolding of Lucas' story. He will absolutely develop at his own pace, whatever is right for him and it is up to us, as his family, to support him along the way and discover what those milestones are and when they happen. 🙂

Thank you so much to those who are reading this and have kept up on our story. Thank you to you all who have kept us in your thoughts and prayers. We're so grateful to those who have found ways to reach out when we've been occupied or tired, the connections make such a big difference in our lives! We love you all and will be keeping you and your families in our thoughts and prayers. Have a wonderful holiday season coming up!