As Good As It Gets

Earlier this month, due to much congestion, Jack returned to the doctors office. It turned out that Jack has Pneumonia and a partially collapsed lung. Since Jack's birth, we have read numerous cases where children with Down Syndrome have often died with complications of pneumonia. So to say the word "pneumonia" scared us was an understatement! Then, to top it off, the doctor noticed that Jack's liver felt enlarged and is worried about congestive heart failure. Of course, Kim left the doctor's office distraught with worry and in tears. After much discussion with the doctor, he decided that he would allow us to do outpatient therapy with Jack. Luckily for us, we avoided returning to the hospital...Kim was thrilled! Since our previous hospital stay, we still had oxygen at home, and, therefore, the doctor allowed us to treat Jack from home. Otherwise, he would have definitely returned to the hospital for another long-term visit. The doctor put us on a strict schedule of outpatient respiratory clinic visits, for suctioning, antibiotics, daily doctor visits either by phone or office (he even gave us his cell phone), and nebulizor treatments every 4 hours. We had treatments we had to do around the clock. During this time, the boys had Baseball practice and games, I had to get up for work at 5:45am, and Kimberly had Zumba she had to get up for and stay late doing almost everyday.

Oxygen containers, Oxygen condensors, tubes, medicine, nebulizors were all over the house. I was just exhausted. I looked over at my poor wife, I could tell she was so exhausted too. I said to Kimberly.... "I feel like Helen Hunt in As Good As It Gets." Kimberly smiled and laughed. She said she was thinking the same thing the night before and it was so funny I thought it too. If you haven't seen As Good As It Gets it is a movie from 1997 with Jack Nicholson, Helen Hunt, Greg Kinnear, and Cuba Gooding Jr. In the movie, Helen Hunts character, has a sick son, she is worn out from all the late nights helping him get better, and she is afraid of anything that might come into the house that could set off an episode that lands her young son in the hospital. I thought Helen Hunt did a great job acting, in that movie, but I thought it was a little over the top with how she was with her sick kid. Now, I think she was dead on!

It is a very interesting sight to walk into a store with a baby that is all hooked up to oxygen. It feels as if you are wheeling in an old grandma (sorry Grandma Hand :) . First, you have the air container on a little dolly that you are pulling behind you, but instead of the air being attached to your old grandma, the air tubing leads up to a little six month old baby. You get a lot of very curious, yet sad looks. Well, five days later, the doctor decided we should try to wean Jack off of the oxygen and so we did. He was doing much better and seemed to be getting better everyday. The doctor said it could take up to two to three weeks to get over the Pneumonia. Jack is constantly all smiles! His smile seems to tell his worried Mother and Father," don't worry about me, guys, I am just fine"... all with his adorable smile.


Then, this last week, Jack began waking up during the middle of the night with constant coughing fits and congestion! Kim would wake up, suction his nose, give him a nebulizor treatment, and refill the humidifier. After a couple days of severe congestion and constant coughing, Kim decided to take him to the doctor. When he arrived, they tested his oxygen and he was measuring at about 75%. The doctor listened to his chest...there was still much wheezing! Long story, short, the doctor is concerned that Jack has asthma, but also wants us to have him tested for Cystic Fibrosis. Now, we have to worry about Congestive Heart Failure and Cystic Fibrosis!! If it's not one thing, it's another! In the meantime, we are giving him an oral steroid to help with the inflammation of his lungs, an inhaler (twice a day), 2 different nebulizor treatments, reflux medication, and he is back on constant oxygen. Again, luckily, we had the oxygen at home to treat him. I guess the one positive thing that came out of this is that we get to park in handicapped parking whenever Jack is in the car. This keeps us from having to trek his oxygen tank all the way across the parking lot when we are at the store or going to church.

We are praying and hoping for good news at the end of the week! All in all, Jack is happy, cute, and so much fun to interact and play with. It's amazing how content a little guy can be who doesn't feel good most of the time. But, we feel he is going to pull through this and are keeping positive thoughts!