Saturday, September 5, 2009

Sept 4-5, 2009

Sorry I didn't get to blog last night. Ended up getting in later than I had planned and just passed out. Yesterday was a busy day for Gabe and he had a lot going on. He had a rough night before I got there and was having increasing difficulty breathing. His oxygen saturation was low and his CO2 was high. The poor little guy was working so hard to breath. Nurse "L" was getting concerned and said it was probably because the fluid around his right lung was getting worse. After the morning x-ray they saw what they called a minimal amount of fluid and then did an ultrasound. This was all done early in the morning before he started getting worse. After hearing that Gabe was having increasing difficulty with his breathing they consulted with the radiologist who said there was only a minimal amount of fluid, approximately 35 cc.

This was starting to sound like Groundhog Day all over again. We've been here twice before and each time he proved them wrong with the amount of fluid he actually has. After watching him get worse they decided it was time to act. At first they wanted to just do a blind chest tube insertion without any aid from the ultrasound. We have found through much experience that this does not work for Gabe and we need ultrasound to place the tube in the right place the first time. At first they said they were unable to find an ultrasound machine or someone from Intervention Radiology to place it. I was persistent that they do it with ultrasound and finally they found someone to do it. Thank you NNP "A" for making that happen. As soon as they put the tube in they got approximately 60cc out immediately. As of now he has put out a total of 360cc. I don't think I will have to tell the radiologist, "I told you so". After the tube was place Gabe oxygen saturation went up and his high CO2 level came down. You could tell that he was much happier and wasn't working so hard to breath.

We did however get some bad news out of all this. Gabe's chest fluid has turned milky white which indicates that he does indeed have a chylothorax. This is the condition in which his lymphatic system leaks lymphocytes into his chest around his lungs. This is not good. This will be a long road to recovery we have been told and it should go away on its own with careful diet and fluid management. Dr. "B" said that this will take some time and patience. There is a drug that has been used to treat chylothorax but it has serious side effects and is rarely effective. They have chosen not to try this drug until we have no more options and we agree completely. They have sent the fluid away for testing to see the levels of protein in the fluid and basically tell them what they already know. Just one more hoop that Super G has to jump through to get out of here and we know he can do it. Thank you nurse "L" for all your hard work with Gabe today, you did a great job.

This morning Gabe was looking good and even seemed to drop a few lb's. He seems comfortable now that he is able to breath and doesn't have all that fluid crushing his lungs. The test results were not back from the chest fluid. However, the fluid is really white now and looks worse than yesterday. They said the test we are waiting for isn't going to help in telling us anything we don't already know. They also said that the Glycogen Storage Disease test that we have been waiting forever for is now on the back burner. Dr. "B" spoke with the pathologist and he said that the sample they have is not going to give us an accurate result. This is because the adenoma's in his liver hold onto glycogen and therefore the test would be incorrect. We will just be keeping a close eye on him and see how he does, looking for any signs that pop up along the way. Doctor "B" said after Gabe is a year old, we will be able to tell if he truly has Glycogen Storage Disease. Of course we know he will be just fine.

Nurse "A" is taking care of Gabe today and she is keeping a close eye on Gabe and I. I always seem to cause some kind of trouble when I'm here with Gabe. This morning I wanted to adjust his crib so I could sit next to him on one side. I unlocked the wheel and started to move the crib and suddenly it started jerking violently since I had forgotten to unlock one of the wheels. Poor little Gabe was now wide awake with eyes like saucers and then he puked. Way to go dad! Shake your kid until he pukes. I then got to give him a bath, so at least something good came out of it. Now nurse "A" says I'm not allowed to touch the crib anymore. Way to go Dad!

Keep you posted!

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