All you have to do is which the ads for medications that are on in every ad break to realize that in the world of medicine, there are a lot of trade offs. Very few medicines are all good. There are always those side effects. When Hannah was studying medicine, she would always read me about side effects like ‘sudden death’ and we would laugh wondering why would you ever take a medicine whose side effect was sudden death?! Anyway, Max and Addison have taken A LOT of medications in the last nine months and they are still on a lot of medications. And side effects are just part of our existence. The sodium chloride and iron we give them makes them throw up. But it’s worth it so we just clean up a lot of vomit. And in general we try not to google side effects because it’ll tell you a whole lot of scary stuff that will probably never happen. So we take the medicines we need, pray for the fewest side effects possible and deal with those that we do get.
Which is fine when the side effects are vomiting. It’s a more difficult situation when you are faced with what are dealing with right now- hearing loss. I can’t tell you exactly what medication damaged Max and Addison’s hearing because we don’t know. It is probably the lasix diuretic they received such high IV doses of for months with their albumin transfusions. But it could be the IV antibiotics they received while critically ill. It could even be unrelated to medicines. There are other hypotheses as well. In our minds, it is a side effect of medication but we’ll never know for sure. What we do know is that when Max and Addison had their hearing tested at 5 months old, they couldn’t hear. Why is something we do not know and something that, in a way, doesn’t matter. Max and Addison received medications that saved their lives. And one day when I get to heaven, I won’t waste my time asking God why they lost their hearing… I’ll be too busy thanking him for saving their lives. So we won’t know why.
What we will know is the extent of their loss. We will know that tomorrow. After they failed the initial hearing test, we scheduled a better more accurate test for June 25, the day they had their second kidney removed. The ABR test is an actual brainwave test and it is better done sedated so since they were already under for surgery, it just made sense to do it that day. And I really thought they’d tell us they still hear something. Max and Addison seem responsive. They make noise. They startle sometimes. They turn to their names- sometimes. I suspected they had some loss but I also expected them to hear. So when Max returned from surgery during Addie’s surgery and we were told that they saw no indication of hearing, I was devastated. Completely blown away with sadness and shock. And I cried and cried and just couldn’t shake my disappointment. Our wonderful nurses comforted me and tried to help me see how much we had to be grateful for that day; both did amazing in surgery and came back off a ventilators. And I missed the rejoicing for that because I was so sad they couldn’t hear.
The audiologist who did the test told us he wanted to repeat the test in 3 months and that he couldn’t be sure of the results given they were in an OR and under general. He said they will have significant hearing loss but what exactly they can hear is hard to tell still. He gave us some hope that when we re-tested, the results could be different. So we moved on in a way, or really our life moved on at such a pace, the hearing issue fell into the background. Addie became very sick in the next couple of weeks and all our attention fell on her heart and how it was coping with fluid changes in her body. One day in July she had to have surgery to get another central line for IV heart medications and it was a really scary time. The doctors diagnosed her with congestive heart failure and we believed she would get better soon but had yet to see it happen. And she was miserable. And that morning I said to Lori, her nurse, that I didn’t care anymore if she couldn’t hear, I just wanted her to get better. I wanted her heart to be ok. I felt foolish for my tears over hearing when now she was fighting for her life. And, as you know, she did get better. Then worse. And finally much better. And her heart recovered from the whole incident and she is handling dialysis well now. And I’m so grateful. I’m grateful for her and for Max and that they are home and alive.
So I definitely have better perspective this time. I know that no matter what the results are tomorrow, it is not a matter of life and death. And we’ve done life and death enough times now to appreciate how awesome it is that we are not dealing with life or death. Having said that, of course I care. I want very much for them to hear. They are my babies and I want everything wonderful for them. I want them to enjoy music, to hear me tell them I love them, to be able to use their voices to talk and sing and tease each other. I want them to hear because I want them to have the happiest life possible. And if they don’t hear anything now, I still believe they will one day. If we’ve learned anything it is that God uses medicine to work miracles. So I believe that through cochlear implants or advanced hearing aids, there is a lot of hope for hearing in the future. So the results tomorrow are just the beginning of a process and not a final verdict. Still, I won’t deny that I will be crushed if they can’t hear at all. I will be sad for that loss in their lives and for another difficult journey we will have to head down to deal with that. I think any parent would be sad in those circumstances.
Last time when I was devastated I kept saying ‘but I wanted them to have a normal life after transplants’. See, in my head, as hard as things are right now, they always seemed very temporary to me. I think I had built up this fantasy land of life with transplants and once we got there, all this would be in the past and they’d just be like everyone else! And facing the fact that even once they have a kidney, they will still have hearing loss was hard for me. We talk a lot about how glad we are that Max and Addison won’t remember what all has happened to them so far and we like the idea that dialysis will be something we tell them about when they are teenagers and not something they remember hating. And I think I feel like not being able to hear will be a permanent reminder of just how dramatic their first couple of years of life were. So that made me sad. But I’m feeling differently about that now. I’ve really accepted that while I want great happiness and every possibility for Max and Addison, I no longer desire ‘normalcy’ for them. I don’t mourn that their lives will never be normal. I’m ok with the fact that our family will never be like everyone else’s and I want to raise them to not long to just be like everyone else and to embrace their history and their story.
I think because I teach teenagers I see every day how much being normal is valued by teenagers so I worry about that. So I know that my responsibility is to make sure Max and Addison see their history as a special part of their story and a part of what makes them so amazing. And that it isn’t something they need to be ashamed of or want to pretend didn’t happen. And that includes hearing loss. They will at least need hearing aids. They may need cochlear implants. They may end up using sign language or lip reading or other communication strategies. We don’t know exactly what the future holds. But it probably will mean something that makes them different. But that’s OK. Because their scars and their reminders will just be what reminds them how strong they are. So, yes I wish for them that they had perfect hearing and I am sad for them… just as I wish for them that they had kidneys that worked. I would give anything to spare them what all they have to go through. But while I am sad for them having to go through extra things, I am not sad that they are different because they are amazing to me. They have a strength and resilience that I am in awe of. And I already know that God has amazing plans for them. Different plans. Ways of using their lives in a way that He can’t use anyone who hasn’t been through what they have.
All that is to say… please pray for us tomorrow. I’d love you to pray they can hear something because that would make treatment easier. We had some less sensitive tests done a couple of weeks ago that gave us hope they may hear at some frequencies. That and the fact that they do seem to respond to sound does give us hope that the results will be different this time. But, they also may not be and we may learn that again they showed no brain response to sound. So, please pray for Al and I as we face this. Pray for peace and strength. For wisdom as we plan the course ahead. I’ll let you know the results when I am ready to write about it which may be right away or may be a couple of days. I figured I could write this post a lot better before than after so I wanted to get their story out. And ask for prayer. Because it’s another big day for us so we could really use it! Thanks!