Counts, Counts come up where ever you are!!

Austin taking his nap for today.


Yes we are still here in the hospital. Austin's counts are still down. Patel came in this morning and said they are coming up. Where he saw that I don't know, but he is the doctor. He said GOAL is to go home Friday, but that doesn't mean we will. If we go home with his counts too low, we will end right back here. Rather just stay and stick it out. So we will see what tomorrow holds. I am NOT thinking we are getting to go home. But we can always have hope. But what ever is best for Austin is what is best for us. When Patel came in this morning Austin was asleep, like he always is. Patel really wanted to see his eye, so I rolled him over. He was VERY pleased with it. So am I. It has gone down a lot. Yes it is still somewhat there, but like a nurse told me it isn't noticeable. So if you look at it, going through this is worth it seeing the outcome of the fast response. Patel also didn't like that they didn't access him in both of his ports. He said he was having trouble getting the correct amount of fluid Austin needs. So he wants the nurse to access his other port to run more fluids. This was 8:15 this morning he told me this and it is now almost 5:30 and they have NOT accessed his second port. They came in here to just weigh him with the wrong kind of scale and woke him up from his nap. I asked why they were weighing him now and the guy told me because they didn't weigh him this morning. I said yes they did. He said well does he not like the scale. I said he is trying to take a nap. So he went to go ask the nurse and came back and said she said it was okay not to weigh him. What happened was someone screwed up. They always weigh him at between 5 and 5:30 am. I do remember him getting weighed this morning. Oh well. Then the nurse came in and said we still need to access his port so let us know when we can. I felt like saying why didn't ya'll do it earlier??? When he was awake all those hours!!!!

Sorry I haven't posted more often. There are some days where it isn't a good idea that I post. It would be nothing but bad words. I don't know if you can tell or not, but is taking me a long time to write this post, and I add more and more things that happened. (like the weight and port issue) LOL. Honestly I have gotten very frustrated this time around. But trying to deal with it the best way I can. They are pretty full on the floor, or so they tell me. So when you look out our window (which faces the nurses station)you see no one. Last night we had a little incident in our room. The nurse came in to hook up his antibiotic and Austin was up playing. After she left I looked down and notice there was blood in his line backing up. I didn't freak out because I have seen this happen before but then it started coming out a valve they use to inject meds or piggy back other lines. It was all in the bed. So I called the nurse in. Our nurse was in another room so they sent another nurse in. It is a night nurse that we really like. She was stunned at what was going on. The only thing she could do was clamp it off and start over with new tubing. What apparently happened was there was a hole in the valve and blood and antibiotic was just coming out. So they had to clean up the bed, change the line and start over with new antibiotics. They also found a crack in this cap that connects the line to the line to his port. Oh what a mess.


Austin playing with the light stick last night. If you look closely by his leg where his ID braclet is you can see the blood start to back up in his line. Right after I took the picture I saw the blood and called the nurse.

So Austin is asleep right now, but soon I will make them come in and access his other port. They said the would de-access his other line and let him have a bath and then they will have to put numbing cream on and access them both. He will not be too fond of having a sponge bath. He hates them. He will scream.LOL

I had some hospital visitors today. A couple of Patel's staff came by as they were leaving from bringing a NEW patient to the floor. Then our social worker came by and we had a nice long chat. Then a little later the nurse that worked at Patel's office, stopped by. She works on the third floor clinic where we go get transfusions. Of course I talked my head off. Since I don't get a lot of adult conversation in. LOL Well I am going to go now. Jason should be here in a few minutes with dinner and hopefully Austin will be up to eat and get accessed again. Poor little guy!!!!

Elizabeth