Most patient child alive

Brody has been a snuggle bug all day and has been adequately amused with games and movies. He is so patient ( I have no idea where he gets that from?!) I got sad when I let Cameron hear me on speakerphone while he was at my moms and he lost it. We will be in the hospital at least until next Saturday after another Visit to the OR Friday and I don't know if I'll get the opportunity to go home to see cam before then. I feel so guilty when I have to put one of their lives on hold for the other but he's getting sleepover time at Ga Gas and mom moms so he's ok.
- Posted using BlogPress from my iPhone

More comfy but more irritated too

Brody was much more comfortable today from a pain perspective but was just all around annoyed. His 2 IVs infiltrated so his arms blew up twice their size and then he had to be restrained by 4 grown adults to get another one in his foot. He is just so irritated (and so am I) by the constant poking and prodding, vitals, meds, treatments, checkups, etc.

I feel like as soon as I start my victory dance I'm immediately slapped back into reality with a remainder of what a painstaking process this is with many twists and turns. Brody has never had a problem with food being an aspiration risk but when he was suctioned tonight we found chocolate milk in his trachea. I was devastated and lost it. He hasn't used his gtube in over a year and now we have to feed him through it in attempts to keep his airway safe from infection. I'm praying this is only due to things feeling different in there because of the stent in place (which is what his surgeon thinks) but we knew that there would be risks and setbacks that came along with such a huge step forward. Recreating a whole new airway poses a lot of problems for feeding and this is an obstacle we may face. I need to keep it in perspective but it's just so hard for me to take steps backwards.

Goal of the next 3 months of healing is to keep that airway clean, germ free and guide the scarring in the right direction so that it will hopefully have minimal impact ojibwa vocal chords for speech and swallowing.

Thank you for celebrating this surgery with us but please remember how important the many many more steps that lie ahead of us are.

I can't look too far into the future. Today is all that I can worry about right now.


- Posted using BlogPress from my iPhone

Pain, pain go away!

Poor kid is in soooo much pain! They are trying to be conservative with morphine as it depresses the respiratory system but he just had his throat ripped apart and put back together with his ribs... Pump up the meds!

It's going to be a rough night here.


- Posted using BlogPress from my iPhone

Let the healing begin

Brody is out of surgery after 5.5 hours. Everything went great but they has to remove more scar banding posteriorly in his larynx than they thought so they will be keeping him longer than expected. He has a stent in his upper airway above the trach that he will go back under anesthesia next Friday to he removed. After that is cleared he will be able to go home and continue the healing process. He will come back every week or two in the OR for a while to monitor how the new tissue is healing/integrating. It's going to be a looong 10 days!!!


- Posted using BlogPress from my iPhone

OR update

Brody went back at 8:30. They bronched him first- put a camera down to make sure the tissue was still inflammation free and thy he could be operated on today. We recently got the update that he good to proceed with the reconstruction! They are mid airway dissection of the throat now. They will next move to opening at the ribs and harvesting cartilage.


- Posted using BlogPress from my iPhone

Today's the day

Brody just went back to the OR. He will be in for 5+ hours. Poor baby. We're of course excited, thrilled but nerve wrecked. Didn't sleep at all last night... Just waiting now...

All drugged up wearing his blankey (crinkly) as a hat right before



- Posted using BlogPress from my iPhone

Ants in the pants

So the big day is tomorrow. 6:30a arrival time so we'll be on our way at 5:30a. I'm so anxious I can't sit still. The house is spotless, everything is packed and prepared, and I am looking for something to do with all of this energy! I have a feeling it's going to be an all nighter with these nerves.

Here's hoping for all the best tomorrow. This kid deserves it!




- Posted using BlogPress from my iPhone