(to be continued...)
Friday, November 4, 2016
Miracle #2: "I can hear now."
Shortly after we started celebrating Rowan's sight returning, he started having trouble hearing us. For the first day or two, we attributed the difficulty to the fact that he was on BiPAP to assist his breathing. It can be loud, and we figured he just couldn't hear us over the machine and the sound of the air being forced into his lungs. But then he stepped down to high flow nasal cannula, instead of BiPAP, and he still couldn't hear us very well. I started removing his cannula briefly each time I was trying to tell him something, but I still seemed to have to almost yell into his ear. The following morning, he could not hear anything at all if you spoke into his left ear. By that same evening, he could not hear anything out of either ear. And I am not exaggerating, when I say he couldn't hear. You could yell into either ear from the side and he would not jump, budge or even attempt to answer you. If his eye mask was on, or he wasn't facing you even, you could say "Rowan" as loud as you wanted and he would not respond. Neurology came and rang a tuning fork next to each ear, and he had no reaction whatsoever. Unless he was looking directly at your face, reading your lips, and it was a simple statement, he could not understand what you were trying to communicate with him. After so recently rejoicing the gift of his sight returning, we were once again hit with a huge blow...he had lost his hearing.
With everything Rowan was dealing with medically, there were just too many variables that could be playing into his hearing loss. No one could tell us if it would be total hearing loss, or if he would recover some hearing that could possibly be augmented later. No one knew if it would be temporary or permanent. The CMV encephalitis was a front runner in the possible causes, followed by gentamycin ototoxicity, and after that fluid in his ears from the fluid overload he was dealing with when he first moved down to PICU and started dialysis. They checked his recent head CT, which had shown the increased ventricles of the brain again, and noted that there was in fact significant fluid in his mastoid spaces and throughout the middle and inner ear. However, no one really believed he would experience total hearing loss just from fluid on his ears. Most believed the cause to be the antibiotic toxicity or the encephalitis, both of which had high chances that the hearing loss could be permanent.
Again, once we processed or fears, thought through his potential loss, and discussed what that meant for him, and for our family, and we came to the conclusion: if Rowan's transplant ended up being successful, and he continued to wake up, recover, and regain his health...we would deal with the loss of hearing, and be happy that is all he ended up with long-term.
But, we didn't give up hope. We never stopped asking for prayer from our friends, family and Rowan's Facebook and BlogSpot followers. And we never stopped asking God for a miracle. We never gave up on Rowan and his will. We never gave up on God.
There were hard days to come for sure. Seeing the frustration on his face when he couldn't understand what we were saying, the fear each time his eyes opened and he realized it wasn't a bad dream, the sadness on all of the nurses, doctors, family members and friends faces when they saw a less vibrant, less confident Rowan...it was heartbreaking. It nearly broke me each time he looked around at people talking in his room, pulled down his facemask, and tears drifted down his cheeks beneath the mask. We tried hard not to show our concern, fear or sadness. We did not discuss his hearing loss with him. We did not push him or continue to test him. After the first real proof that he couldn't hear, we stopped saying "Can you hear me?" "What about now?" Can you hear this?". It was just all too much. We immediately realized it frightened him.
Instead, we smiled at him...a lot! We kissed his forehead...tons! We got Speech therapy involved early (to give us communication ideas first, not to work with him directly). She gave us terrific advice and great tools. We wrote notes on a white board for him. We showed him cards with pictures on them and asked him to choose, so we could determine his source of pain, what he needed, etc. Most importantly (I think, anyway), we encouraged him and gave him hope. I wrote on the board, "You are going to be ok", "We will fix your ears" and "God will fix your ears", daily, often multiple times a day. Whenever he looked sad or frustrated, I wrote those same messages...again and again and again. His Daddy played music for him from a small speaker, and laid it just beneath or behind his pillow...all of Rowan's favorites, all of our family favorites. Even if Rowan couldn't hear, Brian hoped that the vibrations would soak in and help comfort and heal him. His sister and brother came to visit and didn't treat him any different than usual, even though it was hard for them to not have him respond back in his usual loving, playful, Rowan way. We basically moved forward dealing with his potential deafness, while constantly praying for, hoping for and believing in his eventual healing. It was the best way to cope. It helped us face each day. There was great sadness, and lots of tears, but there never stopped being light. God had already healed Rowan of his sight. He could heal his ears too.
Then will the eyes of the blind be opened and the ears of the deaf unstopped.
A couple nights ago, Rowan was in a great deal of pain. It had spiraled out of control actually. He was begging us for Ativan. The nurse went to get a dose and I told Rowan, loudly, in his right ear, "She's getting your medicine now." I didn't think he could hear me, but Brian and I had decided we had to at least keep trying to talk to him each day. Who knew when or if his hearing would start returning. We did not want Rowan to come to expect silence, and we did not want to assume he would be deaf forever. It was late in the evening, we were all tired, and suddenly Rowan replied with, "Ok, so she's coming with it soon."
Everyone in the room...stunned.
I was shocked and surprised that he replied to me, let alone with a reply that made sense. I said (for the first time in days) "Rowan, can you hear me?" He said "I can hear you...better".
I started jumping up and down, dancing by his bed. He looked completely bewildered at me and said "What is that dancing for?" I told him, loudly in his ear, "It's because I'm HAPPY!". He said, "I need an IV?" To which we all laughed because that was close enough for us. He was hearing SOMETHING!
We tried talking to him in each ear. He seemed to be able to distinguish some words from his right ear (not everything, and somewhat intermittently), but still could not hear anything at all from his left ear. But, that was still progress.
The following morning, we were cautiously optimistic, but tried talking to Rowan in his right ear once again. It seemed that he could indeed hear some in that ear. He still cannot hear in the left ear, but we are definitely seeing him make strides in his hearing on the right side. That gives us such hope! We are believing that this hearing loss can completely turn around, that his hearing can be perfectly restored. Rowan will have in-depth audiology testing done either tomorrow or early next week. That will let us know where he is right now with hearing, as well as how much of it is fluid related and how much is nerve damage from the virus or the drugs. That will give some hints as to how much of this will be permanent, or how much improvement we can expect him to continue to have. But the fact that he is hearing anything we say at all is huge...like really HUGE!
We are calling this Miracle #2!
(to be continued...)
(to be continued...)