One step forward, two steps back...the same ol' dance

It's the same dance we learned back at the NICU that Tom has been practicing ever since.

Tom has made good progress overall since we've been back in South Bend. The docs have made several tweaks to his vent settings and have successfully weened him down on both is rate and his oxygen. Today, he's at 35% oxygen and at a rate of 25 breaths per minute. This is actually huge progress considering the setback we had last week.

On Wednesday, we had a "care conference" for Tom. All the major players in his care got together with us to discuss the necessary steps to Tom's discharge and to set a target date to bring him home. The PICU intensivist (doctor), primary nurse, social work, home nursing, pediatrician, etc. each brought to the table the goals or requirements that needed to be met before their piece of the puzzle would be ready for Tom's arrival at home. October 6 is the magical date. We should have our training done (including nursing-type care and understanding all of his gear), the home care folks should have nurses lined up and Tom should have time to get down a bit on his settings. How exciting - thrilling, actually. The thought of not having to split our time between home and hospital, of being able to spend time together as a family and of Tommy finally getting to see his brothers again made me giddy. Light at the end of the tunnel at last. Sure, we know the date isn't set in stone; there are a number of stars that need to align. But having a date to aim for - that's a huge step closer to home.

The next day was a big day for Tom's brothers. Henry, Sam and Joe had their 6-month check-up with the pediatrician. Our friend Gretchen from the NICU stayed with Tommy at the hospital while Aunt Bonnie and I loaded up the other 3 hooligans in the van and took them to the doctor's office. All three checked out just fine - and took their immunizations like champs. Henry and Sammy did their fair share of crying and screaming, but I have to say that Joe is the one that really took it like a champ. Their current weights are very impressive, especially considering their tiny beginnings just over 6 months ago: Joe is the lightest of the 3 boys at home, weighing in at 13 pounds 4 ounces. Sam is 13 lbs 7 oz and Hank the Tank is a whopping 13 lbs 13 oz! Tommy's weight as of tonight is just about 13 pounds even. Huge!

Anyway, on my drive back to the hospital, Tommy's nurse called me to tell me he'd had a particularly rough morning. His oxygen saturations kept dropping, his CO2 was particularly high (even higher than when we first came to the PICU here at the end of July), and he was very uncomfortable. They'd tried a number of different settings on his home vent and needed to be moved back to the hospital vent. (For reference, the home vent could be compared to a Chevette and the hospital vent a DeVille. They both get the job done, but one of them has much better ride and handling.) Needless to say, I was upset. I was very concerned about Tommy. I felt awful that poor Gretchen was there in the middle of the mess. And I was sad at the big step backward. We had just been riding so high after the care conference the day before - and here we were, back on the hospital vent.

Come to find out, Tom had "tracheitis" (sp?). Because there is always mucus/secretions sitting in Tom's trach (as there typically is with any trach patient), its an ideal environment for bacteria and other "bugs" to hang out. Usually they hang out in a nice balance, but every now and then one of them gets unruly and causes a stir. Tom had been experiencing more secretions than normal and they were turning cloudy and slightly yellow - indicating a possible infection. We tested the mucus and voila - tracheitis. Luckily we caught it before it spread beyond his throat and with antibiotics he seemed to quickly shake the infection and has been doing very well ever since. In fact, they put him on his new home vent (a newer model than what he had before) Sunday morning. And since then we've made reductions in his settings - getting him down to the numbers I mentioned above. And the best part is that we're still targeting October 6 for discharge. We couldn't be happier - or more relieved that he's recovered so well.

In other news, Tim took a short business trip to Pittsburgh and we were able to recruit enough help to keep things rolling at the house while I stayed with Tommy. In fact, we've had a wonderful succession of helpers to help us manage our crazy world. We honestly couldn't possibly thank each of you enough. We'll be searching for some steady help - perhaps in the form of a nanny or nursing student - to stand in for Becca and Aunt Bonnie as our steady helpers. Plus, this will allow time for me to focus on work. (Yes, I started back to work last week. Our checking account will certainly appreciate not sending those payments to Cobra any more. It's been a challenge to keep my head in the game, but hopefully it will get easier to find that balance between work and family.)

The helper of the year award, however, goes to Aunt Bonnie. Wow. What a trooper. Bonnie has spent over 5 weeks with us already - and after a well-deserved vacation next week, she's coming back for 2 more weeks with "her boys". Incredible. Amazing. She's been the glue that's held us all together - and has done it seemingly effortlessly. Simply put - as she typically does - "I just felt like I needed to be here." Bonnie told me she's prayed that the right helpers would find their way to us - that the right nurses, doctors, etc. would enter our world and help to make things better for all of us. But I think the helper that's had the most imact is Bonnie. You've been a guardian angel and fairy godmother to our boys and for that you'll always have a very special place in our hearts - and theirs.

Another guardian angel for us has been our neighbor Julie. Not only has she been a wonderful help with caring for the boys at home, she's also volunteered to be trained to care for Tommy when he comes home. She also offered to stay the night at the hospital with Tommy on Friday night. Not only did this give her more experience and training with Tom, but also gave Tim and me our first real date night in ... hell, in I don't remember how long. We attended McDazzle Friday night. That's the annual fund raiser for South Bend's Ronald McDonald Family Room at Memorial Hospital. If you've read our blog at all, you know how much we support and appreicate this wonderful service. The director of the RMFR asked us to be guest speakers and to share our story. We were happy to do so; anything in support of such a good cause. We had a great time at the event and got to see several familiar faces: many of the NICU doctors were there. :) Doctors Okanlami (from NICU and PICU), Dr. White and Vitaliy with his wife Anna were there. Julie also arranged for us to have a room for the night at the Inn at St. Mary's. What a treat. Not only did Tim and I get to spend so much time together, but we also got to have some solid sleep. Both I'm sure were very helpful to us in so many ways.

On Sunday we attended the annual NICU reunion. It takes place at a children's museum in South Bend and NICU "graduates" and their families attend. We happened to be there when a news crew came through and asked to interview us. Sure! So we made it on the news. We've got it recorded on our DVR and - thanks to Kevin for this suggestion - I'm going to try using my digital recorder to capture the show on the TV so I can post it here or on youtube or something. More to come on that. If anything, we'll at least have some photos to share - of this event and a shot of Tim and me with Ronald McDonald Friday night.

We're making progress on our training in prep for Tom's return home and should have all those ducks in a row by the end of the weekend. We did our 24-hour shift here at the hospital with Tommy from 9pm last night until 9pm tonight. It all went very well. We were responsible for all of Tommy's care. The 24-hour requirement is intended as a sort of dry run for when we get home with Tom. Thankfully, we've got the experience of having him home for 2 weeks in July with his NG tube feedings and oxygen gear. Sure, his gear is more intense and complicated now, but if we could do that before, we can certainly do this now. Plus, since one of us is here all the time, we've already gotten so much experience with his feedings and other care.

Well, I think that covers things from our end of the world. Plus, I need to stop typing so I can get some sleep. Hopefully Tommy is on the same page and also feels that I should get some rest tonight. :) We'll post some pictures soon. And we'll certainly keep you posted on our October 6 target date for discharge. Thank you for your continued love, prayers and support!

Lots of love,
Kristin, Tim, Tommy, Henry, Sam and Joe