Today was our long-awaited ophthalmology appointment. Discussion about seeing an ophthalmologist started nearly a year ago. We had an appointment in December, but had to reschedule due to being inpatient at the hospital. I have been anxious waiting for this appointment because I feel I cannot handle any more bad news. I don't want to hear that Jayson's vision is impaired, or declining. I don't want to hear what could be causing his nystagmus and strabismus in his eyes. I have reached my peak of bad news. But I put my big girl pants one, took a deep breath, and moved forward.
I was told this exam would be quick, ten minutes tops with the doctor. I got concerned as the exam persisted and as the doctor repeated certain tests multiple times. She decided Jayson's eyes needed to be dilated. I expected that, so I was prepared. She left while his eyes changed, and came back. The exam went even longer. Then I heard good news I was scared to hope for, "His optic nerve looks fine. His vision is good." Really????? Wonderful! I wanted to do a dance. But, I knew there was a "but". "But, he's got some serious problems and they are not typical. In fact, in all of my experience, I have not quite seen anything like this." Again. Again Jayson is so unique the doctors are stumped. "His left eye has some serious nystagmus in both directions when moving his eye horizontally. Typically we see nystagmus with our Chiari kids, but it is vertical, and usually just going up or going down. His nystagmus is quite abnormal, and it's in only one eye which is not very common. Then, his right eye does not have any nystagmus, but it has some strabismus and pulls inward. But, it won't look right of midline, at all. I wondered if it was that it didn't want to, but I believe it can't. When he wants to look to the right, he has to move his whole head. His right eye will not look that direction. Additionally, his left pupil was larger than the right, which is not common, and he has an open tear duct in his left eye which explains why he frequently gets eye infections. With some of these concerns being so abnormal, I would commonly expect a brain tumor. However, he has had an MRI and we didn't see a tumor. I think he needs to be seen by neuro-opthamology." Neuro-what? Wow. We have reached the point where we are seeing specialists that I never knew existed. That was a lot to take in, but really she didn't tell me much I didn't know. I focused on the positive- my boy can see, and it looks like he does not have a real threat to his vision. Such a relief. The doctor advised we wait until the summer to get our referral to the neuro-opthamologist. Even though all of these eye issues existed before the Chiari surgery, the neuro-opthamologist will attribute any of these things to swelling and post-surgery complications. So, we will see our new specialist in late summer.
February 27, 2013
Today I witnessed a miracle. Not just the tiny miracles I don't take for granted, but a HUGE, life-changing miracle. Jayson had his swallow study today, and I already had a good feeling about it. I knew he was going to pass, but I didn't know how amazing I would feel. I sat him in the same chair he has sat in on multiple occasions. He looked around and checked out his settings, and then he saw his cup of thin liquid. Every other time we have had to start with thick liquids and slowly try to move down to thinner liquids. Not this time. We knew he was capable of doing more. He was not given a bottle or a sippy cup. He was given a regular cup with thin barium. I brought it to his lips and he opened up eagerly. He didn't spit it out. He didn't swallow it. He let it sit in his mouth, and he looked at me as though he wanted to say, "What am I supposed to do with this stuff mom??" I was told to give him a little more. He opened up but still no swallow. They told me to give him a good amount and force him to swallow and see how it goes. I was a little anxious, but I filled his mouth with barium. We could see on the xray that it collected in his laryngeal area, and then went down... to the right place. I gave him more and he swallowed. Some more, and more swallowing. He passed. My little guy passed his swallow study 100%. I dreamed of this day. I envied other moms who celebrated this day. Now I was living it. My boy was a living miracle. A little over two months ago he was aspirating nearly everything, including his own saliva, and now he can drink thin liquids. It was so much to take in.
My typical reaction when Jayson has a big success is to be hesitant to celebrate. He can make good progress, and then regress. I also recognize that this was a short, quick test, and that he often aspirates after many minutes of eating and getting tired. But this time was different. I knew he had his brain surgery and there was good solid evidence that his swallowing should improve, and it did. I felt little anxiety. I felt confident. I felt excitement.
As I left Riverton Hospital, I got tears in my eyes as I pictured myself on the juice aisle. I imagined myself thinking, "Hmmm.... what juice would Jayse like to try today?" I got excited at the idea of giving him something to drink and seeing his reaction to new tastes and textures at home. I got butterflies in my tummy as I pictured me giving my son a juice box sometime in the future. What a blessing; what a miracle.
We had another appointment today, and I was hoping for another miracle. We have been so upset, torn, confused and distressed about this tube change. I was meeting with a surgeon today, and I hoped he would tell me he would be willing to change out Jayson's feeding tube for us, and that he would be willing to do it safely and take extra precautions.
The surgeon was nice, courteous and professional. But it didn't take long for me to realize this was not going the direction I had hoped. He had not see a tube like Jayson's before, and he had a hard time believing there was anything unique or challenging about it. He offered to pull it out right there in his office. Wow. Not the reaction I was hoping for. When I tried explaining to him the different opinions I had heard he said there must be something he is missing. He said he needed to make a call and he stepped out of the office. I could hear him through the wall talking to someone... our old GI doctor. Great. I got nauseous. I could hear his voice sounding interested in helping me and inquisitive as to how he could get my doctors' support. Then it transformed as he said things like, "Oh, I see. I understand. Okay. Yes, I understand." He walked back in the room with a serious look on his face and said, "You know, it has become clear to me that you need to work with your GI doctor. She is very invested in Jayson, and I'm afraid I am not able to help you. Good luck." Shot down. What is with this woman???? I know darn well that she is NOT invested in Jayson. At least, unless it somehow benefits her? Why is she sabotaging all of my attempts to get help? I don't understand. What is she to gain out of this??
I walked out of the office and almost made it to the hospital doors before breaking down. I found myself on my common bench, again crying uncontrollably. That bench has absorbed so many of my tears. I let out tears of fear, frustration, anger, confusion, and my heart and mind thought, "Why? What now?" I was doing everything I could to find a solution. I was doing everything I could to protect Jayson and keep him safe. Still, no plan. What was I supposed to do? I was getting desperate. I was emotional, and it was time I showed it. I wrote our favorite doctor who is our special care pediatrician. She is a problem solver, and has helped us in so many ways. She didn't help us the previous week when the Risk Management person spoke with her, but perhaps she wasn't aware of my despair and desperation. So I wrote her an email, not withholding my fear and emotion. I hoped she would write back and give me some home, some idea of what to do. She did the following day. And she wanted to see us the following week, on her day off. Bless her. I would be counting down the hours until we could see that woman and hopefully come up with a plan.
I wish you and your family all the best. My arizona eye care center have seen this post and she's currently studying what she can do for you as well. Keep the faith!
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