More Surgery

Well, Tom has been pretty stable for a couple days now. His ventillator support hasn't really changed much. His blood gases have been pretty consistent. And for the most part, he seems to be comfortable (except, of course, when he coughs up the mucus in his chest and throat caused by the irritation of the ventillator tube).

We started the full dose of the "viagra" meds today - it's actually called sildenofil. Tom's blood pressure has been gradually getting lower, but is still in a good range to continue this medication. It doesn't seem to be having a profound effect on his pulmonary hypertension, but is at least helping.

Each morning we're invited to participate in rounds with the doctors and other PICU staff. Some days I think they regret inviting me to join in. :) I'm sure those of you that know me best - and those from the NICU at Memorial - can imagine the scene: notebook in hand, pen poised and a list of questions at the ready. I have to say that I'm thankful for the opportunity to get in front of them to ask my questions. I've been able to affect change in Tom's care and have brought issues to their attention. Let's just hope I don't annoy them too much before we move out of the PICU. I don't want to become one of "those" parents...

Twice a week, Tom will spend time each with physical therapists and occupational therapists. They'll work with him on movement, flexibility, developmental milestones, etc. This will help make sure he doesn't get too far behind in his overall development while in the hospital. A dietician even stopped by this week. She took some measurements and made some changes to Tom's feedings to ensure he gets enough calories to support healthy growth and development.

Yesterday (Friday) we met with Dr. Ackerman and a couple other folks on her team. We discussed our options for Tom's long-term plan and agreed the best option is the tracheostomy (or trach) and ventillator. This will give Tom the best opportunity to be the healthiest he can be.

A tracheostomy is an opening in the front of his neck that lets air move from the outside (he'll have a ventillator to do this) into the trachea (windpipe) and lungs. A trach tube is put in the opening thru the skin and into the trachea. The procedure is scheduled for 11:00am on Monday. It should take about an hour. The same surgeon that did his nissan and put in his G-tube will also do this surgery.

Following surgery, Tom will need to stay in the hospital for about 4 weeks - give or take, depending on a number of different things. The trach tube will remain in place with stitches for the first week so the channel to the trachea can heal. This is much like getting your ears pierced - the channel thru your ear lobe heals so the post of your earring goes thru it without any pain or discomfort. He'll be hooked up to a ventillator coming out of surgery and will eventually be switched over to the ventillator system that he'll use at home. After the first week, we'll begin to get training on how to care for Tom, his trach and his ventillator. Once we get to that point, we will look into the possibility of transferring him back to South Bend to complete his recovery and our training. If our insurance company doesn't like that idea, however, we'll do all of this in Indy.

When Tom comes out of recovery from surgery, he'll come back to his room in the PICU. Once a bed opens up (one is scheduled to open August 24) in the Infant ICU, we'll move there. This is a 6-bed unit filled with infants on trachs and ventillators. We visited the unit earlier this week and the babies seem very well cared for - and loved. We met a boy not much older than Tom that was happy, mobile and obviously loved his nurse. This is where we'll spend the rest of Tom's time in the hospital.

So we've still got a long road ahead - even after we bring Tom home from the hospital. He'll have the trach and ventillator for quite some time. It's difficult to estimate, but most kids like Tom have their trachs 18-24 months. Let's hope it's not that long for Tom. But even if it is, at least he'll be mobile and able to play (with limitations, of course). He won't be stuck in a bed like he is now with a regular ventillator tube in his throat. We'll be able to take him out - with some additional gear and extra effort. And most importantly, he'll be able to interact and play with his brothers.

We're moving tonight to another room in the PICU - a little quieter and a better location for nursing assignments. We don't have a phone in our room and we're not supposed to use our cell phones in the unit. So if you need to get in touch with us in a hurry, call the unit directly and ask to speak to Tom's family. The number is (317) 274-2871. Otherwise, continue to call the house, call our cell phones or email us as needed. We'll be in touch!

Thank you to everyone for your continued support and prayers.
Kristin, Tim and Tommy