Can you handle Good News??
So I posted the blog about "Frustration" on Wednesday and then within the next hour, got 3 pieces of GOOD news.
I posted a blog about the night last night and the frustrations I'm having with immovable stupid doctors. I'm OVER IT.
But the cool part ... I might have some movement on all the fronts! It was late this afternoon after I already wrote the blog when I found out all the cool new things that we've been working on for a looong time.
1) One doctor was being difficult about not putting Iron in the TPN. It's the easiest and safest thing to do. Instead of the iron going over 30 minutes, it goes over 20 hours! Also, it would take me 3 seconds to put it in the TPN at home versus 5 hours to drive to the hospital, get the infusion and drive home. Next, it's better because I only connect him one time a day versus several times by getting the infusion thus decreasing his infection risks. Next, it's better because we don't have to go to the hospital ... where all the sick people are!
So why wouldn't the doctor do it? We didn't know. NOOOOO! End of discussion. So one of my hospital friends bailed me out today. He is the in hospital TPN pharmacist and one of the most kind, decent, humble men you'll ever meet. He loves Manny and is always so sweet to us. He was the one who helped get the Selenium in after MONTHS of me working on it and he got it done. Well today, he called the GI. The GI was on vacation in Miami but he called anyway on the personal cell phone. They came to an understanding that worked for us. It was agreed it could be put in if the Hematologist would write the script, be in charge of it and follow those labs. But bottom line ... Manny is getting what he needs the easy way! I just have to work out the nitty gritty details. (That means about 10 phonecalls Thursday but well worth it.)
The only real issue could be that some people have allergic reactions to Iron. Manny has had two different types of iron and done well with it so odds are he will continue to have no issues. And in the remote chance that he does, I know what to do and how to handle it. So I feel great about this decision. He will need to get his iron levels back up to normal (he's EXTREMELY low right now) and then find the right level maintenance dosage.
2) My pediatrician contacted the Orlando Arnold Palmer GI group I asked her to. They will see us ASAP. That's HUGE HUGE HUGE. I have no clue if they can help us or not but worth a shot. They see us next Wednesday. I am hoping they will be willing to give advice regarding his TPN and even manage it possibly. They might have ideas of what to do for feeding him too but we'll see. I'm not willing to put him through the torture again unless it's a good, NEW plan.
3) Doc came by today. I told him about last night and how weird it was. How he immediately got better with the antibiotics, etc. And how many times he's had these same symptoms of high fever and post nasal drip but the viral panel is clean. So he got to thinking. We brainstormed. He wants me to see an ENT ASAP. We think possible chronic sinus infection. It would make sense! The ENT he wants me to see is the one that Zoe sees. She became a friend, we even went to lunch and started working on a mission trip idea. I called her office and they are no longer taking his insurance (state). I asked to leave her a message and see if she'll make an exception for us. I'm sure she will say yes. She is the only ENT I trust around here! But there is possible hope and help!! Really?? So excited. Thursday I got a call that yes, she will take us. (Shock. Ha). But the problem is ... Doc wanted us to see her in 3-5 days and the first available "new patient" appointment is for Mid March. That is just not going to work. Wondering if I should email her directly and get in sooner. Because if he were an established patient, he could be seen next week. But policy keeps us from it. (But as I just pointed out, we have already run into one policy issue and overcame that.) Still deciding.
So right after I wrote the woe is me frustrated blog post, I got the first good news in a while!
Thought you might want to know!
Now the last piece of good news for the night ... Today as I write this is Thursday, February 7. It's a good day. Why?
Because one year ago today, he got the broviac (central line) he still has. He has not had one central line infection in the year.
Why is that a big deal? In the first 3 months of a central line, he had 8 lines. He almost died by going into septic shock in December 11 due to a central line infection. That line had been in 3 weeks and 2 days.
It's virtually unheard of to a go a whole year with no line infection! So what worked? I got training. I now handle basically all his line care. And we got a special medicine (ethanol lock therapy) that was controversial. All this is due to a Vascular Access nurse named Stephanie.
So today we are celebrating a happy birthday for a broviac!