July 1, 2015

Since the beta blocker didn't do very much today the doctors decided to increase the beta blocker and also increase the times that they are giving the anti anxiety med that was originally just being used at nights. We haven't seen any difference with the beta blocker in the last 24 hours so hopefully increasing it will help. They have to be very careful on increasing these doses because he is on several different types of medications that lower heart rate and blood pressure. They monitor him very closely and make sure that the medication isn't overcompensating and lowering his heart rate and blood pressure too much. 

This afternoon I was able to get out for a couple hours and go and do a little shopping. I went and found some noise canceling head phones to hopefully help Tyson while he is sleeping. He has always been a light sleeper but recently any little noise wakes him up immediately. And for anyone who has spent time in hospitals you know that it is not necessarily the quietest place to be. 

We also decided that because he had such an intense day yesterday that we would really try to limit his contact with people and keep the room quiet and dark as possible to hopefully help his storming and sleeping in the night to come. 

I decided that I wanted to do some skin on skin time with Tyson today. I wanted to try it to see if it would help lower his heart rate or blood pressure. At first he didn't really like it but eventually he fell asleep while laying on me. One of the doctors came in to look at him while we were doing it and I think I made him feel a little uncomfortable. This particular doctor is only about one week into his residency so he always has to check with his superiors about things but he is very good at explaining things to us and helping us understand what is going on. But Tyson and I ended up doing skin to skin time for about two hours and we both were able to take a really good nap. He also did some binki work and it was probably the best time that he has done it. 

During the last few days we have noticed that his arm that has the PICC in it sometimes gets discolored or almost purple looking along with being puffy. We had the IV team look at it yesterday and they said that the blood was having a hard time returning back up his arm while the PICC was placed. Usually we hold Tyson's arms up a lot during the day because that is the position he stays the most relaxed but while I was doing skin on skin time with him it turned pretty purple and we had the doctors and IV team come and look at it. They noticed that when his arm was up it returned the blood really well. But just to be safe they wanted to get an ultrasound done to double check that there wasn't any clotting. So around 10 PM we went down to do an ultrasound. While Tyson was laying on the table and the tech was taking pictures he just fell asleep right there. I was astonished and told the tech that he needed to do that every night to get him to fall asleep. 

After we were finished I carried him back upstairs while he stayed asleep and then we also changed his diaper while he was asleep which was amazing! We got the all clear around midnight to say that we could run his antibiotics through the PICC and also take labs in the morning. There was no clot that they could see with the ultrasound. 

After about 9 PM that night as well his storming was drastically better! Normally when he is awake during the last few weeks his heart rate is around 175 to 205 bpm but last night he was staying between 165 and 180 bpm which was so great! I don't know if it was from the medication change or the skin on skin time but something defiantly helped him! 

I left around 1 AM to go and sleep while my mom stayed with Tyson. I hope that he had a better night sleep then the night before but I will find out when I go back today. Thank you for all of the love and support that we continue to receive! This is a long journey that we are on and I know that we are being carried by everyone's faith and prayers. 

I also love that I have developed a spiritual sense of knowing almost immediately if something is right or wrong for Tyson as far as all of the different medical decisions that are being made. I am always being prompted about different things we should try or do that end up helping him greatly. I am so grateful for that blessing and for the strength to speak up immediately when I feel something is wrong or shouldn't be done. I know that this is a direct blessing to the hundreds and thousands of prayers being offered on our behalf!