July 8, 2015

The last few days have been going really good. On Monday there was a dramatic improvement in his behavior, blood pressure and heart rate. I believe it was a direct result of all of the prayers and fasts that have been said on our behalf. Also the medicine might have helped as well. They finally have him on a regiment that is working really well. He storms very little but for the most part he loves cuddling and sleeping. He defiantly looks very drugged and is out of it a lot of the time. But we are not able to do a lot more therapy with him and he can calm down with being held or in his calming position.

Yesterday I went to a luncheon with Tyson to see how he would handle the stimulation. He ended up being calm and collected the whole time and I was able to stay and enjoy lunch with some other families at the hospital that have kids with long term medical needs. I was pleasantly surprised that he handled all of the people in the room and the bright lights. It was defiantly exciting to see that progress because a week before I couldn't even sneeze without setting him off.

Today we ended up doing an MRI and the normal sedation nurses were not comfortable with his case and the amount of meds he is on so they said that it would have to be done under general sedation with an anesthesiologist. I was very worried and scared about putting him under like that again. During his last MRI he really didn't need to be that sedated and the doctor did it anyways despite voicing my opinion several times. So this time I really wanted to make sure that it was the best thing for him and that there was no better option. Of course I wanted him to have the best and safest thing but I want to figure out if that was really the case.

I decided this morning to talk to Rainbow Kids (a group that helps with patient and family advocacy at the hospital). They came in and helped me understand how the MRI works exactly and that it is much better to do a controlled intubation rather then an emergent one in the middle of an MRI study. But the advocate was willing to go down with me at the time of the MRI and help me talk to the anesthesiologist to explain my concerns and worry and see if we could come up with a happy medium.

During the rest of the morning Grandma Donna came back to be with us at the hospital and learn all of the new Tyson things. We also saw his doctors, the Occupational Therapist and the Acupuncturist. He was tired from his workout after about 5 minutes of head control exercises and fell asleep for about two hours. Then the Acupuncturist came in and he slept through his whole session/full body work up. We found out to day that the Lady who has been doing the acupressure is the top pediatric acupuncturist in the US. We felt very lucky to have her working with us.

Around 1 PM it was time to go down for the MRI it was time to go down and so I carried him down and when we got in the prep room the anesthesiologist was there along with the rainbow kids advocate. She had already talked to him and explained our situation, what happened last time and what I wanted to see could happen this time with the sedation and possibly not being intubated. He discussed what he was going to give him and what his plan was for the MRI. He said that he was going to give him some sedation through his PICC line and then see if he needed more help besides the standard oxygen. If he didn't need any extra support and he wasn't moving around they would just leave it at that. If he needed more he was going to next try placing something in his mouth to help him breath better but it wasn't an intubation. And then third if that wasn't working he would have to intubate but he would use a small tube and try to make it as easy as possible.

I felt so much more comfortable this time and I was able to feel at peace with what he was doing. I stayed with Tyson until he was under and then I left to get some food and wait in the waiting room with Grandma Donna. He ended up not needing to be intubated which was fabulous! He came out of the MRI about an hour after he went in and we went up to the surgery recovery center so that they could make sure he came off of his sedation alright. He did perfectly waking up and didn't have any issues with his heart rate, blood pressure or oxygen levels. I was so happy it went well and that we didn't have to get set back by an intubation and the respiratory issues that usually causes.

For the next few hours we did a little speech therapy and cuddled. I love that he clinks up to me like when he was a newborn. There is defiantly a special connection between us and I love that I get to feel his sweet spirit like that and be so close to him emotionally. It so hard to watch him knowing that he dons't know why any of this is happening to him but I hope that our cuddle time gives him some comfort.

Later in the evening his doctor came back, which I knew wasn't good as soon as I saw him because he was supposed to be gone for the day already and he didn't have a good look on his face. He told me that the preliminary results of the MRI came back and that they showed some inflammation still on his brain which meant that he still needs a few more weeks of antibiotics. There was also more brain damage visible this time then there was last time and his ventricles were getting bigger which would most likely mean he needs a shunt. Tomorrow we will talk to all of the specialists and decide if he needs the surgery and what the results mean exactly. It was devastating to hear another set back because we were potentially thinking of going home this weekend if everything was looking good on the MRI.

I cried for a while and just watched my sweet baby sleeping in peace. My mom then came up to the hospital and just held me which also helped a lot. It is so hard to be away from Cameron when I get news like this but it defiantly helps to have my mom hear supporting us. As I have prayed about it and researched it more I feel a calm sense of peace and I just know it will all be ok. I keep have this saying over and over in my head saying that, "He needs this to survive and it will be ok." I am grateful for that peace and comfort!

Something else that has been a miracle recently is my physical health. I am trying to take care of myself but defiantly not doing a great job. But it is a miracle that I am able to hold him almost all day and not have any sort of pain or injury. I haven't gotten sick or very many headaches even though I drink very little water all day long. I am very grateful for my health right now so that I can focus on Tyson.

I will let everyone know what we find out tomorrow and then we will go from there. Thank you to everyone for all of the sport and love that you give us! You are all amazing!

Funny Update: I am at the Ronald McDonald House right now with Grandma Donna and it is raining cats and dogs outside with lightning and thunder every five seconds. We started hearing a little trickle noise and went over by the window and figured out that our window is leaking! We put a cup under it to hopefully work for the night. But it just one of those crazy random things that will be fun to remember down the road. I don't know if I will be able to sleep tonight....