The Hardest Decision

I am not going to sugarcoat it... This has been the worst 3 weeks of my life. This blog will be an update entirely on Ethan. As I wrote in the last posting, I didn’t want to jinx all the wonderful things that were going on with Ethan. But somewhere along the way, something happened.
The week before Thanksgiving started well. We discussed “Sprinting” Ethan off of his CPAP machine since he was doing so well on it and he was showing a lot of improvements. This is where they take him off the CPAP and put him on straight oxygen for a short period of time to see how well he responds. They gave him a bath one night and he had the CPAP machine off for a half hour and just gave him oxygen and he did very well. He was a bit tired after, but overall did well. He was also at full feeds and the doctors felt we needed to add more calories to his diet to help him gain more weight. Then the Wednesday before Thanksgiving Ethan had to have some blood work done to start figuring out some of the other issues we needed to tackle. He didn’t seem to tolerate that very much and started having more spells. My first thought was that he looked pale and needed another transfusion. Since he was starting to produce his own blood cells, the doctors wanted to wait to do this. If they gave him another transfusion too early, then it would send a message to his body not to produce more blood cells in the future. Well, the spells continued and he ended up having to go up on the CPAP machine to a higher support until that Saturday night when all started going wrong.
I did my normal checking in and found out that Ethan had coded in the middle of the night and they had to do chest compression to bring his heart rate and breathing back up. They kept an eye on him the rest of the following day. However that Sunday night he coded again 2 more times and they felt the only way to save him was to re-intubated him again. Also they stop his feeds again in fear that it wasn’t making the situation any better. BACK TO SQUARE ONE! All that he accomplished got flush down the toilet.
Coming out of the holiday weekend, I talked to the doctors and we decided further airway tests needed to be done to figure out what was causing all of this. Also, we needed to get a better look at his hips since we weren’t seeing major improvements in his therapy. In the meantime, he has been doing well on the ventilator. Last Thursday they did an ultrasound of his hips and Friday they did a couple procedures to look at his airway.
The results from his ultrasound showed that Ethan has subluxation of his hips with dislocation as well. In talking with Ortho, they stated that physical therapy, rehab, splinting his hips and many other procedures is lower on the scale of needs. They can do all of that. However, it will take several years of therapy and there is no guarantee that it will work or that he will even be able to walk. Also, it will not be easy on him and he will be in pain.
Then the doctor gave me the test results of his airways. In his left nostril he has a lesion that was blocking he camera and they couldn’t get it down far enough, so they were going to get an Ear, Nose, Throat doctor to come look at it. Babies breathe through their nose, so that could be one of the reasons he is having a hard time breathing. In his throat the pictures showed that his airways were extremely floppy and that very red with irritation. In his lungs showed a white substance, which was more likely milk, which means he is having severe reflux. Then at the base of his lungs his airway was extremely floppy and would clamp down at any stimulation, which doesn’t allow air to get in.
What does all of this mean? Well, he would need a tracheotomy for his breathing and a feeding tube surgically placed in his stomach for food. Both of which he would have for several years and again, there is no guarantee that this will fix the issue. If we proceed with this decision, he is going to need 24/7 nursing and training care when he comes home to us. Not to mention of course the pain he will be in.
After hearing all of this I thought it would be best to get all of the specialist, the doctors, nurses and staff together to put all the pieces together. There is so much care that he is going to need and we needed to figure out what is going to be best for Ethan. Ultimately we do not want our son living a life of pain and suffering. So we had that meeting today and it was the worst couple hours of my life.
They started out by telling us that Ethan has an abnormal chromosome in his DNA. Now, this would not be a problem if either Brady or I had the same chromosome in our genes. To run this test would take another week to 10 days. Then neurology told us that his head is not growing which means that his brain is not growing. The reason our heads grow is because it is making room for our brains. Also his muscle tone is very bad which leads them to believe that he has severe Cerebral Palsy. He has a delay in his reflexes and his movements are entirely abnormal. From their diagnosis they feel that Ethan would not have any quality of life. He will not comprehend normal activity and will be confined to a wheelchair. Lastly the Pulmonogist said that based off his evaluation doing a tracheotomy would probably not help his airway issue. If his brain is not growing and functioning properly, it more than likely will not send a message to the lungs to grow on top of the fact that he needs constant pressure in his airways to keep them open. This kind of ventilation support cannot be done in a home setting. And lastly, his leg issues that I previously mentioned.
After all the doctors stated their case it was said to us that the entire medical team feels that it would be in Ethan’s best interest to discontinue care. He does not show that he will have any normal life and it will be filled with lots of struggle and far too much pain. Brady and I kind of felt that this meeting might bring us to this kind of result. We have been talking and crying the past few days about what is best for Ethan. I don’t want to play God and make these kinds of decisions. I don’t want to, I should have to be the one to close those beautiful big eyes for the last time. We just needed a sign from God that would help lead us in the right direction and that direction presented itself to us today. We believe that the best thing we can do for him is to give him back to God….
If you are crying right now, don’t worry. I am too. I can’t tell you how hard it is to write these words and bring you this news. He is my little Superman who has fought so hard and been so strong, but we can’t let him suffer his whole life. I never would have imagined that we would have to make this kind of decision.
We are still working on the details of what will happen but the plan is for us to surround Ethan with our love and support on Saturday and allow him to pass. I can’t tell you how hard this is. At this point I am at a loss for words. I will try to keep you updated to what is going on. Please check back daily.
In the meantime, please pray. Pray that my little Superman knows how much we love him and for the strength and courage. I know that God is gracious and merciful and will accept my precious boy with open arms and an open heart. I just hope he gives us the support we need to get through this. Thank you.
Here is a couple pictures we have taken in the last day or so. He is so precious….