Our first home infusion and the week in summary

Trinity's first home infusion was this week, Tuesday March 3rd. I have to tell you, I had a weird feeling that day. I felt like I was dreaming. I thought maybe it was because we have been so used to traveling 700+ miles one way to get these. But as the day progressed, I figured out why.
Trinity was in great spirits giving that her pain was high. We started the blood draw around 10:50 am, her first poke. We got what we needed, things were good. We then proceeded to start the IV, the new home nurse could not get a vein. 3 pokes later, I stopped her and said that's enough. I didn't know how we were going to get our "miracle drug" if the home nurse couldn't start the IV. We ended up going into Sparrow Infusion Center and with one more poke we got a vein. They hemp locked it and sent us home to actually start the infusion. IT WAS NICE just to be at home and not have to travel so far. Trinity, given all that poor girl had to endure, was still in really good spirits. I think she was just OK with it because she was home. It was a completely different little girl. She wasn't trying to jump out of my arms every time someone she didn't know walked in the room. The infusion ran great with no infiltration, which is all I really ask for. With in one hour of starting her infusion, she was on her "PAM high". For those who do not know what that means, once these kids start feeling the drug working, which is with in an hour or two, they perk up and get crazy. They start doing things they shouldn't be because the pain is GONE!! They feel brand new again. The effects are just like a snap of the finger. It is amazing!!!!
So, all said and done, 6 pokes in total, our first home infusion is complete and Trinity is feeling much better. She is sleeping better and eating a little better. (When she is due for her PAM treatment, she doesn't sleep good at all. She wakes up every 30-40 minutes crying. I have to administer Motrin for the 2 weeks before her treatments just to get her to sleep a little better.)
Tysen is back pedaling though. After his round of double antibiotics, not but 2 days later, "the cough" came back. We did exactly what we did before his pneumonia bout, up-ed his inhaled medications. This did not work. I took him back in to see the doctor. Of course, she was out of the office so we saw someone else. She up-ed his inhaled medications some more (now an adult dose!!!!) and sent us for a chest xray just because I told her that is what I wanted. Well that came back and the pneumonia has not cleared all the way. She stated that it is OK and that it is somewhat normal. But I am reminded about what the ER doc said about it being MRSA (antibiotic resistant) and how he thought that the pneumonia was in a really weird spot. Now I am a little scared. The cough continues to get worse. His doctor put him on an oral steroid (why give an oral steroid to a patient that is getting over pneumonia...why suppress his immune system even more!!!!!) It is getting even scarier. Today, after a birthday party for a friend, he complained of chest pain EXACTLY where the pneumonia and chest pain was before. But stated that it went away after 5-10 minutes. I do not know what to do. I know I am going to get him re xrayed this week. Am I making a big deal out of this? Is it really normal for a child with mod/severe asthma to just have pneumonia that does not go away with 2 days of IV antibiotics, and two oral antibiotics? I am confused!!!! And the fact that exactly 2 days after stopping the oral antibiotics, the cough that went away is back? AM I CRAZY!?!?!! I know I am fed up.
Please keep Tysen in your prayers. He really needs to get better. Now he is on steroids and will probably pick up more germs and sicknesses just to top it off! Pray that God will protect him from getting any new sicknesses, protect him for getting extremely sick again and help heal his lungs!!! Tysen has been in good spirits. He is just as worried about it though and you can tell. He doesn't want to feel like that again.
Trinity's first birthday is Wednesday! I can not believe it has been a year already. I just keep saying that over and over again. I am so glad she is doing so well. I remember when we received news that not only were we having a girl but that she has some problems with her bones and it could be fatal. Can you imagine? I, still to this day, can not imagine how I felt when they told me that. I mean I know but I look at her now and think, "wow, were they wrong" She is a beautiful little girl! Always wears a smile. She is smart as a whip. She always gets what she wants. She loves books, loves being read to and loves to read to herself. She is sitting up unassisted. She can say, TyTy, Mama, Dada or just Dad, Caca (for gross), doggy (gagee), kitty (gagee...one is actually a dog size), Hi, and all done. I know there is more but I just can't think of any more. She can tell you what a cow says, what a horsey says, what a doggy says and what a sheep says. She can almost tell you what a rooster, duck and frog says. She is starting to feed herself and prefers it. She is getting tired of baby food and food I feed her from a spoon or fork. She has learned how to throw and thinks it's funny. (Thanks dad!!!) She loves anything with buttons; computers, shirts, phones, just to name a few. She loves shiny things; jewelry, ribbons that shimmer, etc. And hair too. She is just a doll! A Princess!! She has come so far from being that little bun in the oven that might not make it to a beautiful, intelligent little princess. As you can see, she is very much loved. So here is to her, and all that she can be. HAPPY BIRTHDAY TRINITY!!!!