We just found out at 2:30 pm this afternoon that Drake is completely deaf in his right ear, but he can still hear normally out of his left (for the time being at least). The doctors think there is a good chance for him to start losing his hearing in his good ear over the next 18 months or so. We do have a treatment option that would potentially increase the chances of saving his hearing, but it does not come with a cheap price tag and I am not talking about money. His quality of life for the next 6 weeks would be greatly compromised, short term side affects could potentially be severe and long term side affects are still unknown.
Like anything there a few twists that need to be considered as well. For starters there is still a chance for him to go deaf with the treatment, and there still is also a real chance for him not to lose any more hearing without the treatment. Also the additional hearing loss is commonly delayed for up to 2 years, but you have to start the treatment within the next couple days. With this virus, nothing is really too predictable of what is going to happen, regardless of what you do.
Ganciclovir would be administered every 12 hours for one hour sessions for the next 42 days via a semi-permanent IV at home. Common side affects occuring in patients include: granulocytopenia, neutropenia, anaemia, thrombocytopenia, fever, nausea, vomiting, dyspepsia, diarrhoea, abdominal pain, flatulence, anorexia, raised liver enzymes, headache, confusion, hallucination, seizures, pain and phlebitis at injection site (due to high pH), sweating, rash, itch, increased serum creatinine and blood urea concentrations. Ganciclovir is considered a potential human carcinogen, teratogen, and mutagen. It is also considered likely to cause inhibition of spermatogenesis. (may not be able to have kids) It is a toxic drug that will kill lots of good cells, along with the bad virus cells.
Potentially by attacking the bad CMV cells it will help his brain develop, protect his eyes from retenitis, and save what is remaining of his hearing. The specialists and doctors we are working with are leaning towards having us do this procedure, but I am just not comfortable with it at the moment and may never be. Its a grey area in medicine and therefore the decision is left up to us as to what to do from here.
I have spent the last 3 days researching and digging up as much information about CMV and Ganciclovir as humanly possible. I have googled and googled like a mad man; read and analyzed and disected many case studies, experiments, trials, etc that are well past my level of education; I have been reading CMV testimonials, horror stories, success stories, and such and just trying to learn what I can in order to make as educated of a decision as possible. I also wanted to talk to other doctors as well to get their take on the situation as a whole and am just very thankful and appreciative to Barb and Tony Munther and their cousin Karan. They gave me all kinds of information this evening that really helped me understand what is going on and gave great advice on what questions to ask and just generally how to make a big decision like this. Their advice and experience was invaluable.
I just want to have a complete peace about the decision we make. Even though I kind of eluded earlier about some of my thoughts about the line between doctors and God. I would want you to understand that those are just simply some of the many thoughts running through the mind of a 26 year old parent who is about to make a decision that will not only impact the rest of his life, but will more importantly impact his sons life forever. My decision at hand is not at all one where I need to choose between placing my faith in doctors or placing my faith in God. I am not choosing one or the other, I realize that they both go hand in hand. I am simply looking, praying, and desperately seeking for God's direction so I can peacefully know what decision to make.
We pray for a miracle, but realize that getting to this point we are at is already a huge miracle. Drake has already overcome so much. We pray for him to be able to hear, but more importantly we pray for God to use Drake however He best sees fit.
Once we peacefully come up with a decision of how to proceed we will not second guess it regardless of the outcome. We also ask to not post comments on whether or not to do the treatment, we just simply ask you to continue to pray for Brook and I, and especially Drake through this time. Jesus's words from Luke 22 come to mind: "Father if you are willing, take this cup from me; yet not my will, but yours be done"
As I wrote the above words, my face was almost squinting the whole time and my mind was just in a bit of turmoil. Brook has since fallen asleep and I am just sitting here in the stillness of the cold night reflecting on the day while I ponder a few relaxed yet deep thoughts about life. I smile when I think about some of the cute things Drake did throughout the day, and I tear up a bit when I look back at a few of the harder moments spent with Brook today. Tear stains dont quite show up on a computer monitor like they used to on some of Grandpa's Christmas letters.
Brook had a hard day today. The unknown is indeed scary. Reality that our normal life has changed forever is really starting to set in as we schedule audiology, optimology, developmentaloligy, bloodology and pediatricology doctor appointment, evalutations, and checkups for the next 2 years.
Like I keep eluding too about the NICU roller coaster, the day actually started out great. We got a good nights sleep, got the kids out the door, got to the hospital just in time for Drakes morning feeding and were just refreshed. Drake was just bright eyed and bushy tailed all morning and we just needed to pass one simple hearing test in the afternoon. The day was rolling along, our meetings with all the doctors were going great and we were seeing some real light at the end of the tunnel. Everyone was just excited and in good moods, and the air was just a bit lighter.
Ben Harter actually was Drakes physical therapist this morning and he tugged, pulled, flipped, and flopped the boy in all directions and thought he was doing pretty good with most things developmentally. Mom came down about 11 am and the OSF cafeteria cooked up another fabulous buffalo chicken wrap for lunch today. All was going great until the gravity weight of the NICU coaster just decided it had enough of being at the top of the world. Looking back at our last 8 days in the NICU I figure about 6 hours is the longest you can stay up at the top of this particular coaster. When the squiggly lines for Drakes right ear stayed pretty well straight across the monitor when 80 decibels were being pulsed directly into his tiny ear, I was privileged yet again to experience another one of those world slowly quits turning moments.
The next 4 hours were pretty tough as we tried to gather all of our thoughts and emotions together and formulate a plan of what to do from hear. We decided we needed to just get out for a bit of fresh air for awhile and went out to Target to get a few things. Then we went home and ate dinner with the kids and just played and colored with them for about an hour or so. Mike and Diane brought us dinner earlier to the hospital earlier and we just took it home to eat it. It was really nice to have some real food for a change and just a badly needed change of pace.
Back to the hospital about 9 pm and we just held Drake until his 10:30 feeding.
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