A Different Halloween

This is on Monday night, October 12th.
This is on Saturday, October 31st. The dates between are when our lives were turned upside down and changed forever---in some sad ways, some inconvenient ways, but mostly in ways that change perspective, increase faith and give a sense of undeniable gratitude.
I have to be honest, I've never really liked Halloween--it's just not my thing. I don't like creepy things, the kids are always cold and on a sugar high, etc. But, this Halloween was very different. This Halloween we were able to bring Luke home after a 17 day stay in the hospital. What a joyous Halloween!
And here is the story: From Monday, Oct. 12-Wednesday, Oct. 14, Luke a slight runny nose and acted a little whiny, but nothing alarming. On Wednesday the 14th, he woke up from his nap a little earlier than normal and had a fever of 104. I gave him Tylenol and what initially concerned me is that he was acting really lethargic & he was throwing up. So, I got him an appointment with the after hours clinic at our dr. office in Logan. We went in that night around 7:30 and the dr. quickly concluded that Luke had swine flu. I wasn't as sure, so I asked to do the conclusive 36 hour test. They agreed to do the test, but still sent us home with Tamiflu. By Thursday, I was more worried about Luke. He was increasingly more uncomfortable and he was throwing up--a lot! By the afternoon I called the dr. office back and said I thought he was dehydrated because he hadn't held anything down for 24 hours. My dr. said to come back in and they would admit him at Logan Hospital for the night to get him rehydrated with an IV.
So, we went in, he still had a high fever, it went above 104. They got him on the IV and throughout Thursday night, he was miserable. He didn't sleep at all. He would fall asleep for 3-5 minutes and then just cry and toss and turn and shift his body all over--I kept trying to hold him, rock him and he was just so uncomfortable.
Friday morning, Oct. 16th, our Dr. came in to check on Luke and said that the results came back the he did not have swine flu, but he still thought it was probably just a bad virus. I told him about the night and how the only way Luke would get comfortable in my arms was with his head completely slanted back with his chin straight in the air. As I was talking, the dr. just stopped me and his eyes looked like a deer's in headlights, something clicked in his brain. He later told me that all of Luke's symptoms from the last 3 days just flashed before his eyes and he realized that he had meningitis. (the first of several blessings along the way!) They did a spinal tap and they saw instantly that the spinal fluid was cloudy--not good. The dr. kept telling me that it was more than likely viral meningitis, that's a lot more common, etc. They started on antibiotics through the IV just as a precaution in case of bacterial meningitis. He told me it could be up to 24 hours before they knew if any bacteria was going to grow from the fluid.
40 minutes later, our room phone rang and it was the dr. saying that it had already come back bacterial and he had already been on the phone with Primary Children's to know exactly how to proceed, etc. I was stunned and the first thing I said was, "Is he going to die?" The dr. said, "Cortney, he might." The air was literally taken out of me, I couldn't breathe and then I just started sobbing.
The next hour was just making arrangements for Life Flight to come get Luke and take him to PCMC. He was was there 20 minutes after they arrived. One of the many gut wrenching experiences of this whole ordeal was watching them take him away in the helicopter and not being able to be with him. The drive to Salt Lake was the most anxious, longest, most horrible car ride I have ever had!
So, to spare you all the details, I will just give a quick overview of his stay at PCMC. He got there on Friday, Oct. 16th and left Saturday, Oct. 31st. From Friday to Sunday, he was in the ICU--he pain level was extremely high during this time and it was so hard to see him this way. They were preparing us for any possible outcome. It was an extremely emotional and hard time.
There are too many details to go into for the next two weeks. I won't give you a play by play of PICC lines, IVs, the pure torture he went through, etc. But, very long story short---he was on an EEG for over 24 hours, he had two MRIs and two CT scans of his brain during our stay there and all came back looking normal, with no signs of brain damage, fluid collection or residual pockets of infection. During this whole period, there were many ups and downs. He was extremely swollen for several days from the heavy antibiotics and his sodium levels. Then when that was finally taken care of, he had fever spikes for several days that needed to be under control before we could go on, etc.
On Wednesday, Oct. 21, Luke was given a hearing test called the ABR (Auditory Brainstem Response). One thing that we quickly learned is that bacterial meningitis can often have an adverse effect on your hearing. At this point, we were just so overjoyed to have our son still with us and that there was no sign of brain damage, etc. that we were willing to accept any other obstacles. Well, that is just what we were greeted with--an obstacle.
During this hearing test, Luke did not have any response on either ear up to 95 decibels. This test was repeated two days later with the same results. The infection had completely taken Luke's hearing from both ears. It was the most heart breaking news I have ever had as a parent or just ever in my life. I love this precious son so much and to hear that he would have something to deal with in his life that would make life more difficult was so hard to bear.
With the news, we were also told that he was a prime candidate for Cochlear Implants. In coming weeks, I'm sure I will blog more about this, so you can google it for now! In essence, in the coming weeks/months Luke will go through the implant process that will not restore his hearing, but provide a way for him to hear. It is not the same as natural hearing, but it is wonderful technology that will provide a lifetime of hearing.
We have been totally reassured that his long term prognosis is wonderful--he will have a successful, fulfilling life that is just as normal as you or I.
We are so incredibly blessed to have Luke--we have seen several miracles along the way through this whole situation. At times I feel completely emotionally drained and at others I feel so spiritually fed. Luke is an exceptional child who is strong and just so darling! He is laughing and playing again, interacting and funny. We still have our son & we will support him through this and we will have the same high expectations of him that we do for all of our children. I am confident that he will achieve great things in life & I am thrilled to be a part of it!