Friday, January 28, 2011
Wyatt is doing much better. This morning he didn’t look good and was struggling to breathe. He had a lot of fluid around his lung as his chest tube wasn’t draining properly and that was causing him some problems. Since then they repositioned his chest tube and his 11am x-ray looked better and now his 6pm x-ray even better. His lung fully expanded and he seems to be doing better. He should spend at least one more day in PICU. I am hoping that tomorrow he is back to formula again as he still is only taking only IV Fluids. I was talking with his surgeon today he told me that Wyatt was something else. He said this birth defect of no left diaphragm is usually seen on ultrasound or discovered immediately after birth and is corrected between weeks 2 to 4 after birth. He said in many causes the babies need to be on a ventilator. He has heard no cause where a baby has lived for almost 11 months with this condition and in Wyatt's case, he didn’t even need oxygen until recently and even then it was only at night. I am trying to do some research on this condition and to validate what I was told but so far I have found next to nothing on this subject. Any readers of this blog have a baby born missing half a diaphragm? If so, I would love to hear from you.
In case you missed what happened with his surgery yesterday, when Wyatt was opened the surgeons were surprised to find that his left diaphragm was missing. I wish I was there as this was his fifth surgery and the diaphragm, or so they thought, was seen on the previous four. The surgeons built him a new one and attached it so that now he has the separation of stomach and chest. Wow, I was stunned to hear that this was the case after surgery. I suspect that now his breathing should be much improved as well as his eating and hopefully finally put him on tract to spend more time at home and less time in the hospital.
Sunday, January 23, 2011
I think one of the most difficult decisions a parent has to make is a decision concerning medical treatment or surgery for a child when he or she is unable to tell you exactly what hurts or how they are feeling. The decision is easier to make if the situation is dire or that person is in immediate danger or if it involves life or death. The situation with Wyatt is very complex and involves many issues. I am trying to process each issue to make the decision that will provide the best care for him not only today but for the rest of his life. Wyatt is having multiple issues right now from feeding, diaphragm, lung and others. All or some may need to be surgically repaired. Wyatt has proven after each operation, even minor, that he struggles to recover and the post op has proven to be a critical time for him. His diaphragm repair is a major surgery that will require his chest to be completely opened and his recovery will be painful and take days afterwards. I have requested a surgeon who has operated on him in the past. Due to the complexity of the issues and the fact multiple concerns may need to be addressed during surgery, at least two pediatric surgeons will be needed. As all of this is being evaluated with multiple specialists, this process it is taking a few days to complete. Wyatt may not be fit to go into surgery several times and the load on his body and recovery also need to be considered. He is in pain from time to time and I feel that the doctors are treating his pain as well as possible. Unfortunately, pain is present.
Wyatt has eventration of left Diaphragm. What this means is that part of his Diaphragm is not working properly and needs to be repaired.
He has lung disease related to atelectasis and also has moderate pleural effusion around his left lung.
Atelectasis is caused by pressure on the outside of the lung, this pressure on the lung is caused by buildup of fluid between the ribs and the lungs which is Pleural Effusion. The result of this is difficulty in breathing and chest pain. Wyatt had pleural effusion a few weeks ago as well had while in the hospital had a chest tube to drain this fluid.
Due to his feeding issues and related GI concerns, the doctors are also considering a J tube to replace his G tube.
Wyatt appears headed for surgery sometime this week. He is struggling now and at times is real bad. The nurses and doctors are watching him closely and doing all they can to keep him stable, hydrated, nourished and comfortable. I am very happy with the care that he is receiving at Janet Weis Children's Hospital @ Geisinger.
Mary and I appreciate all the emails, responses on Twitter and Facebook and prayers that are being said for Wyatt and our family. This is a difficult time for us and with your support, we will get through this. I will continue to share our experiences as we go through this journey. I hope that this experience helps educate some who read about us and helps others who may be dealing with challenges that may seem overwhelming. Thank you for being part of our journey.
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