Monday, November 17, 2014

Getting Sprung!

This is how I look during Maddy's ribavirin treatment. At least I'm not in the tent!


This is the last treatment she has to do then we get to go home. As usual Maddy didn't get to sleep last night so she has been sleeping most of the day. By most of the day I'm mean she started to take a nap around 10AM and has been getting some shuteye between people coming in to bug her for the last 4 hours. This morning when the doctor came in he said she looked like she was feeling better. She even got her voice back so he was happy with that. She has been coughing up that slime from her lungs really hard for about the last 20 hours or so. Dr. Haddad said her lungs are sounding much more clear already. Like I mentioned before the virus killed off the lining of her lungs and she will be coughing that up for the next few days. Then her lungs will grow a new lining. Maddy said it feels like she has CF lungs again. Not a fun experience. But it will pass. So far we don't think there has been any new perminant damage to her lungs. Her PFT numbers on her little mobile maching are about the same as they have been at home so that's good news. At 30% lung function she does not have a percentage point to spare!

So this last treatment should be over by 4ish. Then discharge paperwork and we head home. I don't want to count any chickens too soon but I'm pretty sure we will be home tonight. Maddy should be feeling much better in the next few days if things progress the same way they did last time she went through this kind of treatment. Thanks again for all the prayers. I will only update again if something changes.

Sunday, November 16, 2014

In defense of Health Care Professionals

This is a supplemental blog to respond to what's been happening with Maddy's care over the last few days. Let me start by saying I did not intend to say that Maddy has been getting poor treatment this visit. It's just that not everyone seems on their "A" game this time around. Including me! I don't know if it's because they are understaffed, overworked, or just extra busy because it's flu season. I must also say that I am very grateful to all those who choose to care for others as health care professionals at every level from trained technicians to doctors. I have to live with and help a chronically ill person but they choose to help chronically ill people every day. I also want to say that Tampa General Hospital overall does a great job treating Maddy every time she is here.

That being said I must also make a case for the family of a person who is sick. Whether it be a chronic illness, like my children have, or a sudden sickness that must be treated in a professional setting. You are the only advocate that person has when they are not at their best and need someone to watch over them. In our case, most of the time, both Madelyne and Ethan know exactlly what to watch out for and how to advocate for themselves. However when a person is sick they need someone there to advocate for them.

I don't know what it is about this visit but it seems everything that can go wrong with Maddy's treatment has gone wrong. Some things I have been able to catch before they got weird and some things I have not. Some confrontations with staff over these incidents have been very easy and others have been very trying. Some things are controllable and some things are out of our control. The important thing to remember is that we must all be on the same team. I have to gently remind myself that often, and remember it when approaching hospital staff about issues. No ones perfect, least of all me, so we must take a deep breath and work through it all.

One of my frustrations, that is beyond my control, is the treatment schedule they have Maddy on this time around. How can someone expect to get better while fighting a virus if they are kept awake with treatments all night long? This time around the treatment schedule is beyond our control due to the overcrowding of the hospital when Maddy was admitted. It's no ones fault, but sometimes we feel like the system treats people like machines they can just plug things into when ever it's convienient. I have spent enough time in hospitals to tell you that it's easy to see the paitent as an object instead of as a person with needs. It's the advocates job to point these issues out to staff so that our loved ones are treated like human beings and not objects. In past experiences with bad treatment schedules we have been able to work with the doctors and staff to adjust the clock and make things work more smoothly to allow for proper rest at night. This visit has not been one of those. Again it's no ones fault. Yet it is still frustrating, especially for Maddy.

Much of this blog entry turned out to be a venting session. But I hope everyone can see that I have nothing but respect and admiration for the hospital staff. Yes, this has been a frustrating visit. But I am confident that everyone is trying their best to make sure Maddy gets the best treatment possible. We have just not been on our "A Game".

Just plodding through

Not much progress has been made in the last day but here is whats been going on. I just spoke to Dr. Haddad and he said the virus she got will act like RSV, in that the lining of her lungs will be sloughed off and she will have to cough all that crap up before she feels better. Not sure how much of that I explained back in January 2013 when she got RSV but I remember it was a long recovery even after she got out of the hospital. The doc said 9 doses of Ribavirin then we will see how she is feeling and go from there. That puts the last dose around 2PM tomorrow so I'm hopeful for an exit strategy by Tuesday.

On to how Maddy is feeling and how the stay is going so far. Only two words to describe it "Not Good". She has gone through three IV's so far and the fourth one is already about to blow. She needs to get one of those deep vein IV's that only the vascular access team can put in but they have been too busy to get to her. The nurse put in an order yesterday afternoon to have them access her and as of 11AM today still no team. I spoke to her nurse today about it and she said the team is usually swamped and understaffed so there is no telling when they will be able to access her. This whole situation made a bad treatment schedule even worse.

Here is how last night looked.

7PM - finally gets to eat dinner after it gets reheated
8PM - Respiratory treatments begin. 15 min bronchodilator, 30 minute inhaled antibiotic
10PM - Ribavirin treatment begins. 20  minute or more to set up treatment then 2 hours in a tent while treatment is administered. No one can be in room unless they wear a duck mask and stay 5 feet away.
1AM - IV antibiotic. This was delayed because they had to put in a new IV because vascular access never came the night before. This takes anywhere from 45 min to an hour to infuse. Then a loud alarm goes off to let you know it's finished at which time you page the nurse and hope she comes in to turn it off quickly because the alarm goes off until she does.
4AM - Lab team comes in to take her blood. No you can't get the blood from the IV site you have to get stuck every morning!
6AM - Ribavitin treatment begins. Same procedure as above.
8AM - IV Antibiotics again
8AM - Respiratory treatments, same as 8PM.

And then the doctor wonders why Maddy is so tired and trying to sleep when he comes in between 9 and 10 AM. Maddy of course rarely stands up for herself. This morning I was around to tell Dr. Haddad what went on all night last night so he didn't give her any flack for sleeping today.

Hey, it's 11:20 and vascular access has arrived! Hopefully he will be able to get a good deep vein that won't give her any more problems.

One more thing, the poor kid is still experiencing flu like symptoms, chills, body aches and now this terrible cough from the lining of her lungs dying off. So it's no wonder she just wants to sleep and be left alone.

So thats the update. Hopefully she will start to feel a little better by later today or tomorrow. I have been going home at the 10PM ribavirin treatment and coming back in the morning after the 6AM treatment is finished. I will have to go to work tomorrow morning so I won't be able to get here until afternoon sometime. But I try to e around to get her better food as often as possible. She did have Jayson hang out with her for most of yesterday so that was a good thing. Guess I will update again when we know the exit strategy.

Friday, November 14, 2014

Que the crappy stay music!

So here is the rundown so far. Maddy has pneumonia and tested positive for flu. That means the flu triggered the pneumonia. Because it's a viral infection antibiotics are not much use. So no IV antibiotics at this point. They are treating her with tamiflu and will also start ribavirin as well. In case you don't remember what that is its basically an inhaled antiviral treatment that melts your contacts to your eyeballs if you have them. Here is the blog from last time she was on it.

Today has been pretty stupid. We were still stuck in limbo until about 6PM. After finally getting into a real room they realized Maddy was late getting her prograf. Now this is a big problem because of the diatary restrictions they have on this medication. You can't eat anything for one hour before taking the pills and can't eat again until two hours after taking them. That's a three hour window twice a day where Maddy can not eat. Normally in the hospital they give it to her at 5AM and 5PM. Which is a pain because that means she can't eat until 7. And the food usually comes around 5:30 or six. So tonight they are an hour late which means Maddy can't have dinner until 8PM. Top that off with a stupid nurse who can't understand what's going on and so telling people Maddy doesn't want to eat! Wtf?!?! Of course she wants to eat! She just isn't allowed to unless she doesn't want her anti rejection medication to not work! So now the respiratory people are trying to start the ribavirin, which takes two hours and no one can be near her while that's going, and she has to sit in a little 2X2 tent with a big ventilator blowing on her the whole time. And the resp tech is asking Maddy why she doesn't want to eat? All this is of course going down the minute I step downstairs to get my stuff out of the car and Maddy has no voice from her throat being so messed up from the flu so she's having trouble getting the message to the tech that she indeed does want to eat. And sleep sometime tonight for that matter so they better get this scheduling shit figured out or somebody is going to have a cow! That somebody is both Maddy and I.

Ok, rant over. I will stop writing in run on sentences now. Anyway, I am currently waiting for the respiratory people to come back so I can tell them to bug off until after Maddy eats her dinner. Hopefully they got the clue and won't be back until later. But not too much later or Maddy won't get any sleep tonight. I think it will make the most sense for me to go home tonight when they start the ribavirin and just come back in the morning since they are going to kick me out anyway. Hopefully Maddy will be ok. Guess I'll update again tomorrow.

Slammed in the Hospital again

I am composing this entry from my desk at work, still in the clothes I wore to work yesterday. Gross I know! Maddy got a bit of a sore throat on Wednesday and was running a very low grade fever so she "kept an eye on things" through Thursday. Then around 5:30 on Thursday she spiked a fever of 101 so she called the doctor. Of course they said to go to the ER so off we went. At least this time she wasn't hallucinating! After many pokes and rays later they said she is sick and will be admitted to the hospital. Duh! Of course there were no beds available on the main floor so we were moved to a holding area of sorts around midnight. The rooms are about the same size as a ER room but with a regular hospital bed instead of a gurney. I of course sat up in a chair all night. Dr. Rolf came in this morning and said she has pneumonia. They are going to start her on some antibiotics and keep her until they get her lungs clear.

It's amazing to me how quickly the poor little thing can go from totally fine to being on her death bed. I guess even with all the crap she goes through we forget how fragile her system is. Her cough Wednesday night was a little elevated but nothing scary or excessive. By this morning she sounded like she did just before her transplant again. Scary!

The other scary thing is the antibiotics they need to use to treat her pneumonia are the kind she is allergic to. So they will be doing the whole desensitization thing again. That always scares me.

Anyway I'm going to knock out my Friday work and get back to the hospital to hang with her for the weekend, maybe longer. Please start praying if you haven't already.