Byrne Family... of five!: Breathing Updates

No worries, George and Olivia are still breathing easy! Samuel, on the other hand, while he seems to be breathing a little easier, is still working on it :)

Samuel has been home nearly seven months! He first came home on February 23rd, but as you may remember, that didn't go very well... and neither did his homecoming on March 19th. But, since March 29th, it has been nearly seven months that he has been home with us. YEA! We have lots of follow ups with lots of 'ologists, but for right now we'll focus on the breathing... we see our pulmonologist about every three weeks, which is great because it offers a lot of opportunity for feedback and hopefully new orders from the doctor. The more opportunities we have for orders, the more opportunities we have to move forward :) Here's an overview...

(For a recap of the vent, trach collar, and HME, click here... descriptions and photos :) )

March 29th - on the ventilator 24/7, getting daily blood work to test for CO2 retention

April 6th - still on the ventilator 24/7, no new orders at appointment besides trying to keep him home :)

April 21st - still on the vent 24/7, orders to start trying the trach collar for 30 minutes per day. (Tried the trach collar at home back in February and it was a disaster so I was pretty nervous.)

May 11th - still on vent for the most part with short spurts of trach collar. New orders: if he tolerates it, start increasing time on the trach collar by 30 minutes every 3-4 days. Once at 4 hours, then try 4 hours in the morning and 1 in the afternoon - if he tolerates it, increase the afternoon by 1 hour every 3-4 days with a goal of 4 hours in the morning and 4 hours in the afternoon on the trach collar.

June 8th - on the vent for 16 hours and on the trach collar for 8 hours during the day; 4 in the morning followed by a 2 hour rest on the vent and then 4 hours on trach collar in the afternoon. New orders: as tolerated, increase trach collar by an hour every 3-4 days and try to cut out the rest on the vent in the middle of the day and get to 12 hours on trach collar. This is when we got orders for the HME :)

July 15th - still 12 hours at night on the vent, and up to 10 hours during the day on the trach collar, but can't quite get rid of getting a 2-hour mid-day rest on the vent. CO2 levels not good, so no new orders.

August 5th - same as July 15th... ugh. Until you focus on the fact that you're not going backwards... then I guess staying put it's not too terribly bad :)

August 31st - still on the vent all night and doing 10 hours on the trach collar during the day with a 2-hour break on the vent mid-day and on the vent all night (12 hours). BUT, at this visit, CO2 and base excess levels finally decent. New orders - try to be off the vent all day! YEA!

September 21st - off the vent all day and on the vent at night - 12 hours and 12 hours. CO2 still looks good... new orders: try to remain off the vent all day (on the HME) and to be off the vent every 5th night. AGH!!!! That means no switching to the vent for night time every 5th night! HME all day, and every 5th night try the trach collar (provides more humidity than the HME) instead of the vent.

September 21st - a second order, to try the passy muir (speaking valve) for an hour per day with no extra oxygen. I pretty much hit the floor. But I recovered with an "are you sure?" and a smile on my face :)

October 14th - the first order from 9/21 went well and Samuel was off the vent every 5th night... and his CO2 and base excess were great! New orders: to try and be off the vent every 3rd night! What about every 4th night? No clue... but every 3rd night, here we come! Actually, I was very hesitant about it at first, but then I took a deep breath, remembered how much I trust our doctor, and I jumped on board :)

October 14th - the second order from 9/21 did not go as well... Samuel loves his passy muir, but couldn't quite tolerate it for long periods of new time. New order: try passy muir three times per day for shorter periods of time.

There are lots of details not mentioned above... but I needed to see this overview. In the last month I have had a lot of exciting, bowl-me-over moments, but I also have lots of moments when I feel like progress is not happening, or like it's taking too long. But this reminds me it's only been seven months since my little man has gone from completely vent-dependant to now, being off the vent all day and every 3rd night. Wow. Yes, he still has cords and contraptions that help him breathe, but this is the same baby I couldn't walk more than 5 feet with seven months ago unless I was dragging the vent. Unbelievable. Go Samuel!

Some catch-up... even though I missed blogging, we still took photos :) Late August...