5:15pm: Well, Kristen and I met with the pulmonologists to discuss Reid's respiratory care. We met at 3 for about an hour and was exactly what we thought it was going to be -- their recommendation to perform a tracheostomy on Reid. While his oxygen requirements are manageable, his CO2 levels are not. They feel that a trach would be the best move to help Reid come home and continue to grow. Their fear right now is that Reid isn't going to grow as fast on the high flow due to the extra work of breathing. Staying in the hospital is not going to solve Reid's problem.

Kristen and I have a very adverse feeling about the trach. It is something that we will do if we have to, but is not something that we are going to jump on and wish for Reid. The problem is that there isn't much room to try other things. A high CO2 is not going to be correctable on the support he is currently on.

Instead of agreeing to this procedure, we asked the doctors to devise the short term goals for Reid that encompass his weight gain, his pressures and his gas levels. This way, we have something that is measurable and something to march towards. The problem right now is that every day we come in, we hope and pray that tomorrow is going to better than today. There is something to be said about taking one day at a time, but in the same breath, not making goals is setting yourself up for disappointment. The goals they have come up with:

• Reid needs to be weaned on the pressures by 2-3 liters per week. By next Friday (02.26.2010), he needs to be at 9L flow. By the following Friday (03.05.2010), he needs to be at 6L flow.


• In order to wean the pressure, his CO2 must be below 70.


• If his CO2 is greater than 70 but less than 80, no weaning is made.


• If his C02 is greater than 80, he is intubated.


• He needs to gain 100 grams per week (~3.5oz or about .2 lbs)


• If he needs to have "emergency" surgery for his hernias, he needs to be on or less than 4L flow before the doctors will consider doing surgery with a local anesthetic. Our fear is that he is going to need to be intubated for surgery which is going to cause another step back and further troubles weaning his respiratory requirements.

While we have short term goals, Kristen and I feel our hands are pretty much tied on the outcome. Reid will have to work miracles (which he already has) to not need the trach.

How long will he be on it? No one knows for certain. However, the pulmonologst did say that kids like Reid end up needing this support for about 2 years but there are no guarantees. Reid does have a few things going for him: he didn't have brain bleeds and has a normal, healthy breathing passageway (not narrow or collapsed). It is just a matter of time for his lungs to grow and be able to expel the gas that is currently being trapped. Only God knows how long it will take him.

When we asked if Reid would ever be able to play sports. Probably not. Well, at least not competitively. We can handle this though.

What we are struggling with is how much our life is going to change. The pulmonologist hit the nail on the head when she said that our house would be transformed into a remote/mini intensive care unit. We will, for the most part, be confined to the house as he will be attached to a vent. If we are to leave the house, there has to be very careful planning --- knowing where the closest hospitals are, having a backup vent, having backup oxygen, having backup tubes, etc. We will have a nurse: starting off at 24 hrs a day and slowly transitioning to about 12 hrs a day. Kristen's work will have to change: either quit or work part time. And for her sanity, we cannot see her giving up everything that she has worked so hard to get to. And for me, I cannot ask her to take on 100% of the responsibility - it is not fair.

Long story short, we have some soul searching to do over the next couple of weeks. For some, this is probably a "no-brainer". While it might be best for Reid, coming to terms of how your life (or what you knew of your life) is going to change, is a tough pill to swallow. This is something that I would not wish upon my worst enemy.

Anyway... I am starting to get upset so I am going to end this blog here. Keep praying for Reid and beg for God to help us out!

12:45pm: No changes during rounds.

9:30am: Not a good night. CO2 = 78. He did, however, sleep uninterrupted from 10:30pm to 5am. Waiting for rounds to happen before we call back to see what they plan on doing. Not a good feeling about today...