Another update

First - I had started a "thank you" post to all our helpers a couple weeks ago. I finally finished it and posted it tonight. But it was posted under the original date. To read it, please go to the Aug 14 post "To all our helpers".

Since my last post, Tom has been doing pretty well - as have his brothers. And as for Tim and me, we're hanging in there.

I was finally able to hold Tom last Thursday. It had been nearly 2 weeks since the last time we got to hold him - before his g-tube/nissan surgery. I held him once in the morning and once in the afternoon. In the afternoon, he smiled at me. It was wonderful.

Tim took over in Indy for a long weekend on Thursday. Tom's ventillator settings and CO2 levels yo-yo'd all weekend and through this week so far. Overall, Tom has been stable. We've just been trying to find that "sweet spot" in ventillator settings that would bring down his CO2 levels - and keep them down. No such luck so far. He had his first trach change on Monday. We can now use some special rubberbands to help keep his ventillator tubing attached to the trach - thereby greatly reducing the risk of his chubby cheeks knocking the tube loose. In addition to the rubberbands, Tom also sports a trach holder or trach ties around the back of his neck, fastened to the "wings" on the trach. (Thank you to Tim's cousin Sue for the trach holder samples!) Unfortunately, the trach ties and the trach itself have created some very tender areas on his neck, but the nurses assure me these will heal and in time Tom will sport his new accessory without any discomfort. Tom was moved to the Infant ICU on Monday night. This is a specialized 6-bed unit where all the patients are infants on trachs. The focus here is development and training - for the patients and their parents. This is definitely the right place for Tom to be.

Before I forget, I also wanted to mention that a couple of the staff here at Riley have definitely earned a shout-out here on the blog. Will is a respiratory therapist that was assigned to Tom before his trach surgery. He went out of his way to get Tom the newer model ventillator that he's currently on. Since then, I've run into Will a few times in the halls of the hospital. Not only has he remembered who I am, but has even remembered Tom's name. He caught me in the hall the other day while I was nose-down in my BlackBerry: "Hey, how's Thomas doing?" Will had only taken care of Tom for one day, but he still remembered him and wanted to know how he was. That's pretty special, if you ask me.

Another person who's earned a special mention is Ann - one of the nurses in the PICU. She was assigned to Tom a couple times, then asked us if it were okay if she requested to be one of his primary nurses. We love Ann. She knows her stuff, is very pleasant, gets things done - and does them on time, and most importantly she spoils Tom. We were sad to leave the PICU because Ann had gone out of her way to get mobiles, music and all sorts of stuff for Tommy. I'm sure Tom misses all of her sweet talk and attention too!

So anyway... Late last week, we got some great news from our insurance company: They've approved a back-transfer to South Bend. This is something that is typically never approved. Once Tom gets on the home vent system (they call it the LTV - short for "laptop vent" because of it's relative size) and is stable for about a week, he can be transferred. This will make things easier on many fronts. Obviously, it'll be easier for Tim and me to split our time between hospital and home when the hospital is only 25 minutes away - instead of over 3 hours away. But more important for the long term, moving Tom back to South Bend will enable our ventillator/home care training to take place in South Bend and anyone else that we'd like to have the same training can participate in South Bend - instead of making the trek down to Indy.

As of this afternoon, the plan for Tom is to make one more change to his vent settings tomorrow morning. The new settings can be replicated on the LTV, so hopefully he'll tolerate the change well. If all goes well, we'll keep him on these settings thru the weekend then on Monday or Tuesday we'll make an attempt at changing over to the LTV. In the meantime, since the variations in vent settings over the last week haven't had much of an impact on his CO2, we're doing one more short course of steroids. The docs aren't convinced they'll make much of a change, but feel it is definitely worth the attempt. He'll be back on "the juice" for 5 days. Hopefully this won't add too much more volume to his already way-too-fluffy cheeks. :)

Though Tom's lungs are among the worst these docs have seen, the docs have all reassured us that he will outgrow much of this. It's just going to take time.

Tim will come down tomorrow to take over for a few days. I'll head home to help Bonnie manage the three hooligans at home, then we'll make the swap again early next week. And so goes our "new normal".

Finally, here are a few pics. Our camera is at home, so I hope to get some more recent photos on the blog this weekend. In the meantime, please enjoy these:

Intubated Tom - pre-trach surgery


Tim & Kristin next to Tommy's bed in the PICU at Riley


Proud Papa Don with Tommy


This is the doll that Tim has affectionately named Patty Picu, due to it's androgenous appearance. Tom's nurse Ann lent us this doll so we could get familiar with how Tom's trach would look and work.


Well, it's very late. Tom is asleep - so I should be too. More to come soon. Thanks for all your positive thoughts and prayers!

Lots of love, Tim & Kristin