Douglas had another great night. They removed his second chest tube (I forgot yesterday to mention that they had removed the other one) that helped drain blood and fluids from his internal wounds, and they removed the pacing wires from his heart. Now, the only way that he is being stuck through the skin is his IV line. This is great news.
Since Douglas is doing so well and is stable, I want to reflect a bit on our situation; we are really lucky.
Despite all the trouble and drama that we’ve had over the past week, we’ve also had incredible amounts of support. My inbox is full of well-wishes, thoughts, and prayers from friends and family. We’ve had a lot of family here at all hours to help us, and a lot of friends have stopped by the hospital, too. The medical teams have been fabulous.
- We are lucky that Jenny’s childhood lupus, which doesn’t affect her at all anymore, meant that we had extra pre-natal care. Perhaps the d-TGV would have been found anyway, but there’s no way we could have missed it with all the extra care she had.
- We are lucky that we live only three miles from St. Louis Children’s Hospital, part of the Barnes-Jewish complex, one of the best hospitals in the country, if not the world. There are many children in the PICU that are from much further away (a girl from Florida awaiting a lung transplant, a boy from South Dakota with another heart problem, etc.). It’s so much easier for us and for our friends and family.
- We are lucky that my cousin Colleen Osborn has a townhouse three blocks from our house that she’s letting my parents use while they are in town – thank you so much, Colleen.
- We are lucky that we live in a time (after 1968) and a place (the United States) where doctors know how to identify and fix the problem. For all the problems the American healthcare system has, it is the best in the world for this sort of problem.
- We are lucky that I have good insurance.
- We are lucky that Douglas’s surgeries should be over after this week. There are lots of kids in the PICU that have been there for a long time and will be there for a lot longer. There’s one kid a few days older than Douglas that also had heart surgery, but his condition is part of a larger syndrome that affects many of his organs and systems. Everything in Douglas is healthy except his heart.
- Douglas is lucky that his parents are financially stable adults in a loving stable marriage, and that have many loving friends and family. That’s far from true of all the families in the waiting room.
We are very thankful for everyone that has offered support and help. Right now, however, there’s not much friends and family can do while we’re in the hospital besides continuing to email love and support, and coming in to visit – both are great. Otherwise, the nurses and support staff at the hospital are taking care of our biggest need – helping Douglas get well enough to go home. Then, our challenges will change.
However, there is something you can do to help us; donate blood to the Red Cross. During the arterial switch procedure and with the bleeding that had to be fixed later, Douglas lost all of the blood he was born with. If not for donations of other O+ donors, Douglas would not have survived. If you are healthy and eligible, please donate blood to the Red Cross now, and please make it a regular habit. If you are not eligible, please consider donating to the Red Cross in Douglas’s name.
Another thing to do is to make sure to get good pre-natal care. If you or someone close to you is or could be pregnant, please get all the pre-natal care possible. With our pre-natal care, we knew what problems Douglas would have, and we were in the right hospital with the right support staff to make sure everything possible was done. Without the pre-natal care that told us what to expect, his problem would have been detected at some point after birth, but likely not until long-term damage had occurred. Please take care of new mommies and their new babies.