Tyson is still wearing the EEG monitor and he has shown signs of two different seizure like activity in the past 36 hours that were about 15 to 25 minutes long. The neurologist isn't calling it a seizure exactly but it is like that in a way. I am not quite sure what that means or what the difference is but it is interesting. He still isn't having any physical signs of seizures so we understand that to be a good thing. He is having a lot of different physical signs of neurological damage, like stiffness, eye twitching, and jerking motions.
But on the bright side Tyson is starting to wake up more often and for longer periods of time. He moved both of his legs on his own for the first time yesterday which was great! He is also lifting his arms more often and responding to pain with his facial expressions. We also redecorated his room today with pictures of him and us as a family and everyone who comes in comments on how cute he is. I don't know if that is what they say to everyone but it is nice to hear.
Around noon yesterday the PICC team came in and put it in his arm. They originally assessed him in the morning with an ultrasound and decided that he had great veins for it and that they didn't need to go to radiology to put it in, they could do it at the bed side. When they came back to do the actual procedure they had us step out but they explained to us how it all would work. They would first insert it like putting an IV in. Then they would put a little bit of lidocaine around that point and put in a bigger needle to widen the area so that the line could go in easier. The linen is now in his vain and travels up his arm almost to his heart. They said that this is a way better long term option for him because putting Antibiotics in smaller veins tends to wear them out in the long run. But they said that the procedure went perfectly.
We also talked to the Infectious Disease doctors yesterday and he told us that after looking at Tyson's MRI it is one of the worst cases of brain damage and infection from bacterial meningitis that he has ever seen. He also said that based on his review Tyson will be on antibiotics for at least 4 to 6 weeks via IV. That could all be in the hospital or some at home depending on how he is progressing.
The doctors also talked about starting some spontaneous breathing trials with his ventilator to see how he does breathing almost completely on his own. Pretty much what happens is that the turn almost all of the settings down to 0 or almost 0 and see how he does with minimal support. He is basically breathing through a straw so there is some added support to help compensate for that but he will be pretty much doing it on his own and they will monitor how well he handles it. If for some reason he doesn't breath for 15 or 20 seconds the ventilator will automatically start breathing for him in a CPAP mode until they can figure out the problem or reset the settings to his normal ventilator settings.
Yesterday they also did an x ray in the morning to look at his lungs and they were about the same as they were before. They were seeing and hearing a little bit of collars in part of his lungs but they said that is normal with vented babies. When they put the PICC line in they also took another x ray to double check that it was in the right place before they started using it. The x rays are taken in his room at the bed side.
The doctors also said that we will do a conference meeting on Monday with the neurologist, ICU doctors, and Infectious Disease doctors to discuss Tyson's case and plan for the future and see what they expect him to be like in the future. So hopefully Cameron and I will be in there with one or both of our moms.
I also received two very interesting phone calls yesterday. The first was from the Idaho Department of Health and they just wanted to review Tyson's case and make sure that he didn't get his meningitis from someone and didn't pass it on to anyone else. They also wanted to check that he had received his vaccines. It was frustrating for me because it was a very accusatory conversation and he made me feel bad that Tyson received meningitis even though the vaccine isn't complete until he is a year old. I know that Tyson getting this is totally random, it wasn't caught from someone else. It was a strep bacteria that was floating around and happened to get into his spinal fluid and get infected. But its hard to have conversations with people who don't completely understand his case because his is not a normal meningitis case and he has had a lot more brain trama then almost anyone who gets meningitis.
The second call was from a survey company and when they called they asked if Tyson was there and if they could talk to him. I was kind of taken back by that question but I said that he was a baby but I was his mom so they could talk to me. She then asked how our transport went the day before and was wondering if we had a doctor visit or where we took the transport. I only wish it was a transport for a doctors visit! I told her that we were transported from the hospital to the air port for a life flight to Salt Lake. She immediately apologized for bothering me and told me to have a nice day. I am glad she was considerate but she didn't have paperwork that said that he was 6 months old and that he was life flighted?!
The last eventful thing that happened yesterday was during the time that the nurses were changing shifts. It happens in a time period of an hour and a half in the morning and evening and they only allow parents to be in the room during that time. Immediately when I saw his new nurse I had a sinking feeling in my gut and I just didn't feel right about her taking care of Tyson. I sat and watched her for about 5 minutes and she looked tired, she was sneezing, coughing, had a ruff voice, and sniffling. I then went and asked her if she was sick and she told me that technically they don't allow them to come to work sick (which makes sense when you are a pediatric ICU nurse!!) but sometimes they have to come anyway. At that point my red flags and sirens were flying in my head. I then went right over and talked to the charge nurse. He told me that it would be difficult to switch nurses but he would try to get that to happen. Then my mom and I walked back in his room and I was about to loose it and explode at someone just from the stress and emotions of the day and this new situation. So I ended up leaving and going and sitting with Grandma Donna and then my friend Colby came to visit and so I visited with her as well. When I got back to the room about 45 minutes latter the nurses were switching and everything was going well. My mom told me that the new nurse was giving her some attitude and the charge nurse was pushing back on not wanting to switch but my mom wasn't having it so we got a new nurse and she was very caring and attentive to Tyson all night long.
That was our long emotional day but we are excited that he is becoming more aware and alert. For the past few days since we arrived here in Salt lake I have been thinking about the life flight and being up in the clouds in the air plane. One of my favorite places in the whole world is up in the sky in the middle and slightly on top of the puffy clouds. I just feel like I am closer to heaven and it reminds me that even though I am a very small part in this world I am important to my Heavenly Father. During our flight this past week I was able to feel the Holy Spirit and know that my Heavenly Father is watching out for my little family and precious son. He loves Tyson more then I do and I know that everything that is happening is based on his will and love for us.
I was also reading last night on LDS.org tips for helping mothers with children who have disabilities. There was one passage that gave me such peace and comfort knowing that being my child's advocate is what is best for him. Many people who know me know that I am usually a very kind timid person who doesn't like to rock the boat or offend people. So stepping up and telling other people how it is and what I want for my son in regards to his care has been difficult on some level for me. This whole experience is definitely changing me in some ways to be strong and not worried about others feelings when it comes to my babies life. This is the quote I loved from the LDS.org website:
"Like many others, you may feel unprepared for the challenges of nurturing a child with a disability. We are reminded in "The Family: A Proclamation to the World" that mothers have a special responsibility to nurture their children. Because of this the Lord has blessed mothers with the insight and understanding necessary to make decisions regarding the welfare of their children."
This whole process is not easy, I break down, I get angry, I feel bad for myself and I don't want this to be my trial. But I know that we are growing through it and we are growing stronger because of it.
Visitors: Alyssa and Frank, Matt, Lance, Great Grandpa Phil, Colby and Family
