July 11, 2015

SOO we are still at the hospital.. yesterday morning we were told that we would be leaving today. And I didn't believe them, but by the end of the day they had almost everything in order for us to go home. The only big things left were to get the discharge plans, the perscriptions, the antibiotics and PICC stuff and his blood pressure cuff. So this morning I showed up to the hospital with my suit case all packed and ready to pack up Tyson and his hospital room and head home.

But after a few hours this morning we found out that finding a pediatric blood pressure cuff and monitor is pretty much imposible. The discharge planner and Grandma Donna called everyone in the valley that they could think of. Everyone said that it wouldn't be covered by insurance and that they would have to order it in which could take up to a week. I will also have you know that I have been asking and reminding the doctors for two weeks prior to this that I want to go home with a blood pressure monitor. The medication that he is on can have drastic effects on his heart rate and blood pressure and I don't want to be blind to that going home.

Around 2:30 this afternoon I was told that the discharge planner found one in South Jordan that would work but I would have to go down there and buy it. So I get in the car and drive there and when I get their I have to wait like 20 minutes to be helped and the lady who finally helps me informs me that they told the hospital that they don't have a pediatric cuff or monitor. The only size they carry is an adult small. And even though my child is huge for his age that cuff is still too big for him. So I get back in my car and I have Grandma Donna order one online from amazon. That one will get to our house on Tuesday. But I find it so crazy that they just don't carry them anywhere in the salt lake valley!

Later that night I find out that our home health company won't have a pediatric nurse come to see us till Monday and even though she will have short visits I really want the first nurse that we see to be trained in pediatrics.

And to complicate everthing a little bit more Tyson has been doing some retching (throwing up motions without actually throwing up because he cant). At first we thought it was because we changed his medications to be only every 3 hours instead of the almost every hour that he was getting before. So this morning we decided to space them out a little bit more so that if it was making him nauseous it would potentially help. But later in the afternoon we saw that he was still doing it. We don't think it is a virus because he doesn't have any other symptoms and the doctors think that his G tube could potentially be blocking his intestines and not letting the food drain properly. I am also not comfortable leaving with this issue and I am hoping we will do an upper GI test tomorrow to find some answers.

So all in all I don't believe we are leaving until we are actually in the car. I'm sorry to give everyone false hopes but hopefully we can get everything resolved and it will be in the next few days! Thank you for your prayers and support!