Thursday, January 24, 2013

Just hanging out

Day two has been good and pretty uneventful. Dr. Haddad came in this morning and told Maddy she only has to be here for 8 doses of the ribavirin so that puts her out of here Saturday morning or afternoon. He has also decided to give her a course of IV steroids while she is here... so there is that. Maddy is not looking forward to the steroid rage. And neither am I.

Dr. Haddad also mentioned that RSV causes the lining of your lungs to die but then it regenerates. That explains the nasty sounding cough. He said its best to get it all coughed out so they have her doing the old fashioned CF airway clearance a few times a day as well. No big deal and easy enough to do.

The upside of the ribavirin is that the following sign is on the door. Which keeps it quiet in the room.

I was able to get some sleep and get back here this morning before they placed her IV. It was a one stick hit so Maddy was very happy about that. She seems to be feeling much better already. She has been sitting up chatting with me all day and does not have a fever any more so that part is all over. Now it's just a matter of her getting past this cough and head congestion. The doc said she would feel much better by the end of the ribavirin.

So that's about it. The next hurdle is to find her something she can eat. As usual the hospital food will not cut it. So the next 2 hour ribavirin treatment I will go shopping at Publix to stock her up for the next few days. Did I mention nobody can be in her room during the 2 hour treatment? Conner will be here this evening to hang out with her so I'll go home again. Then I have to work tomorrow. Oh yeah, she will get released from the hospital right in the middle of a pirate invasion. Wish me luck picking her up at the height of the Gasparilla Parade!

Wednesday, January 23, 2013

First infection since the transplant

Here we go again. It's been one year and seven months since Maddy's transplant. She has not had to be in the hospital for an infection yet which is good. The last time she had to spend more than a day at the hospital was for her Nissen (check past blogs for that one). As you can see by the pic below she is none too happy about being here.

Here is what went down. Maddy woke up Monday with a fever and feeling like poo. The doctor called in an RX for tamiflu to get her started until they could get her in to test for RSV and other viruses. Tuesday Maddy had an appointment with her new PHP because Medicaid had changed her plan back in November and she has not been able to get a regular appointment with her transplant doctors since then because the new PHP won't give them an authorization number until she is seen by them. Thankfully the appointment was already scheduled so we were able to get in and out with the referral authorization with minimal fuss. This morning we were into the transplant doctors office at 6am to give them the cultures and find out what she has so they know if they were on the right track with treatment. They sent us home to await the results.

Meanwhile Maddy was struggling along at home with fever, chills, stuffy nose and a really scary sounding cough that reminded me of the bad old days. Fortunately she had no vomiting or other harsh flu like symptoms. We got the call around 10:30 am telling her to pack a bag because they were going to admit her for three or four days. But they didn't tell her the results of the cultures. Fortunately I had voice tracked my shift for today and loaded music for next week already so I had the ability to take the day off to get her checked into the hospital. Then we waited for them to have a bed available. And waited. And waited. Finally they called at 7pm! Blah, another late night check in.

We just found out the diagnosis is RSV. The docs want to treat with an inhaled anti-viral med, which Maddy has been on before. It's a very powerful drug, they don't let anyone stay in the room when they give it and we can't come back in for 30 minutes or so after. They are also going to reduce her immune suppression so her body can fight the virus a little better. Which has me scared because I don't want her to start rejecting her lungs. But I won't think about that. I'm sure they will take great care of her and she will come out of this just fine.

So far Maddy is pretty chill in the room. No orders for IV yet and they didn't even schedule blood work for the morning so she may get a little break right at the beginning. Which would be nice because her anxiety is a little high at the moment. As I mentioned she does not want to have anything to do with hospitals any more. ;-)