Hi

Hi friends, not much to update. Will is doing great. He is going to be baptized this weekend and meet some of his out of town family. Hope y'all are enjoying the beginning of fall - we sure are!

Post Glenn life

It's our second weekend home after William's surgery and we are having a blast.

We had a scare the other night when one of the bandages fell off of his incision and it looked infected. We sent a picture to cardiology and they had us rush in to the emergency room. It was about 10 pm when we got there. Will's pc stayed late when she heard he was coming. She came down to the ER, looked at his chest and said it looked great! The picture made it look at lot worse than it did in person. We were home shortly after midnight. I'm sure it was the shortest ER visit ever.

Will and I have been taking advantage of our life outside of isolation! We have gone to the mall, the park, out to eat... Any and everywhere we can! It's so easy to take advantage of life and all of the things that "normal" people do. I know I never will again.

Unfortunately being in public you are exposed to people who are unkind. We have had a few comments made me uncomfortable, but I just have to shake them off. People see his NG tube and they know he is different. I wish it wasn't like that, but it is. They ask if he is sick, if he will be okay.. And I don't ever know how to answer. Is he sick? Well, kind of. Will he be okay? I hope so. Some people are not polite. I don't mind the curiosity- I prefer to educate people who want to know what he is dealing with. I wish I could educate people who say rude things, but I am not quite sure how. This is just part of our life now. Will still isn't eating his bottles well, but I know someday he will get that tube out and look just like everyone else. Until then, we will just have to tell him and everyone else how amazing he is... In case they don't already know.

Surgical follow up

Will had his surgical follow up today. His X-ray looked perfect. The only concern is that he is still not taking his bottles, but said we will give it a few more weeks before we start to worry. She said we don't have to come back for two months, but I am used to once a week so I asked if we could come back sooner- one month.

He is feeling much better. We went to the zoo last weekend and he had a blast. Will loves adventure!

Discharge today!

Wow! I can't believe we have been inpatient for a month.. And that will is done with his Glenn! Life should be much easier now. His new physiology is much more stable. We are excited to conquer the world now.. Because we are going home!

Off oxygen!

Will is off of oxygen. He took his cannula off this morning because he was sick of it! He had a sedated echo so he is very tiresome but has been in a great mood all day. We finally got him to take a bottle-- he drank over an ounce! So proud of our little buddy.

Chest tube out

Will had his chest tube and pacer wires out today. He is still on oxygen, just 1/4 L. He is having a pretty good day today. We got to go on a ride to X-ray today. He loved it.

Great day!

Well, will didn't get his chest tube or pacer wires out today... But it was a great day because William was smiling and happy all day. He is only getting Tylenol for pain now and it's doing the trick for sure. He is still uncomfortable having all of the wires and the tube, but he was easily entertained and in a great mood today! He is down to 1/4 L of oxygen and satting in the 80s. My goal was to get off of the o2 by today.. Seems realistic! Speech therapy came by today because he isn't taking any bottles. Hopefully it's just temporary during recovery.

We hope that tomorrow we can lose the nasal cannula, chest tube, and pacer wires.... Aiming to be in Nashville by the weekend!

Moved back to the floor!

Will moved out to the floor today! They took out his central lines, and tomorrow will get out his pacer wires and chest tube. He is feeling better and gave us some smiles and lots of baby talk today. I got to hold him!

Update

They have taken off his nirs and one of his peripheral Ivs. Will took out his own arterial line and foley. His X-rays continue to show improvement. He is able to start eating today and took about 20cc of pedialyte this morning. It seemed to help his throat feel better. Still no smiles but he is awake a lot now.