Some Days Are Tougher Than Others

The past few days I have been writing articles that have been quite positive. I wish that was all there was to write about but unfortunately there are days that are much more difficult to deal with than others.

When we woke this morning we knew that Parker was going to have an I.V. so he could receive more immuno gamma globulins (IGG). These are one of the kinds of immunoglobulins (B-cells) that a normal child produces. Parker's blood is checked each week and yesterday it revealed that his IGG was low. Usually every four to six weeks Parker will have to receive an IGG transfusion to replenish these cells. These cells do provide him with a very humble immune system.

When the I.V. team came this morning to try and set up his I.V. they tried relentlessly to find a vein large enough to use. With each try came another poke. With each poke came another loud cry. After exhausting all of the veins in his feet and hands, it was obvious that a vein in his head would have to be used. Something my wife and I were not looking forward to but knew would have to occur eventually.

It was not until the early afternoon that two exceptional men came to see Parker from the neonate transport team. They spent over 45 minutes with our son, comforting him as if he was their own. Normally, when a vein in the head is used for an I.V. a portion of the hair must be shaved to be able to make room for the needle. My wife and I were so happy that these two extraordinary men were able to insert the I.V. into his vein without having to shave Parker's beautiful hair. We would just have to hold him until the transfusion was complete six and a half hours later.

Today was a very tough day for my wife. In addition, many of the people who read this web log may have also had a difficult day. Unfortunately, there are things that happen each day that put our pain into perspective. When my wife and I first found out that Parker had a form of SCID we were devastated. How could this have happened to us. At the same time that we were finding out about ADA deficiency there was another family that had been going through the same thing at the hospital. It was not the same form of SCID that Parker had but the ramifications of the disease was the same. Their child had no immune system.

The couple had been at the hospital for over 100 days and their child had just had a successful bone marrow transplant. We were so thankful that this couple had decided to take the time to see us. They spent over an hour with us as we sat in a conference room as they tried to explain what it was like to have a child with a Severe Combined Immunodeficiency. For the past six weeks we have been in regular contact with them at the hospital. Whenever we see either of them we ask how their little boy is doing. See, their son had gone through quite a bit prior to his BMT and as a result has been in critical care for the duration of our stay on 8B. Last night, at eight months of age, they lost their precious little boy.

My heart goes out to this family. I cannot begin to imagine how they feel. The only reason I mention this story is because so many families go through similar situations at children's hospitals around the world. It’s when things like this happen that people begin to put things into perspective. Like a poke, an argument with a friend, or a tough day at work.