Sunday Update

This seems an accurate picture for how Saturday went.

Well things have been going along here with their usual ups and downs. Thursday and Friday were pretty uneventful. I got to go home and get my laundry dome and spend a little quality time with Missy on Friday so that was good for me. Maddy got to have her BF come visit and  spend a bit of time with her so that was a highlight of her day. I came back Saturday afternoon after the first round of Thymo. It took all day to infuse, its a 6 hour process. Maddy was ready for a walk about by the time it was all over and she was free to move about the building so we took a walk to the waterfront around 5:30. Thats when things got a little rotten.

Maddy's still been having shortness of breath if she tries to walk at a normal human pace. By the time we got off the floor and half way to the waterfront she had to stop and rest. So we had a seat on a nearby bench and chilled for a bit. Then we took off again and when we got to the parking lot we spotted an abandon wheelchair and she asked if I could drive her the rest of the way. No problem, into the chair we got and off to the waterfront we went. I could tell she was getting frustrated and it didn't take long for it all to come to the surface and turn into a full fledge bummer party. She was bummed that she is still sick, bummed that she has to be in the hospital again, bummed that it seems like she will never have a "normal" life and there is nothing we can do about it. All totally understandable and sometimes the only way to deal with it all is to have a little cry and get it out. So thats what we did.

Forty minutes later we were back in the room and she was still pretty bummed out so I put in Monsters University in the hopes of cheering her up. Then she mentioned almost off handedly that her chest was hurting, it felt like it was on fire. This of course concerned me so I asked her why she didn't tell the nurse a few minutes before telling me when she was in the room. Wrong thing to say! I totally blew it and started another round of being very upset. Apparently Maddy had been having a bit of a panic attack and I had mistaken it for a little case of the blues. Anyway we couldn't figure out if the chest pain was from the panic attack or something else so we got the nurse involved. They gave her some stuff to calm her down and called the doctor. He ordered a chest X-ray, a GI cocktail (I'll get to that later, fun stuff) and put her on a heart monitor just to make sure nothing was going wrong. Maddy's chest pretty much felt like it was on fire the remainder of the night. Nothing came back showing any cause for concern so it was either a reaction to the Thymo, a delayed reaction to an inhaled med she had a problem with earlier that day or a result of the panic attack. Either way she is better this morning so we are happy about that.

Ok, let me backtrack a little. Earlier that day the doctors wanted to put her back on that inhaled anti-fungal, you know the gross orange stuff that takes forever to nebulize and SUCKS! Anyway this time within two breaths of the stuff she started wheezing and had a huge coughing fit. An immediate negative reaction to the medication. The respiratory ted stopped it right away and called the doctor who discontinued the med and gave her something to take by mouth that should make sure she doesn't get a fungal infection. BTW, if there is a pill you can prescribe to stop this fungal infection from happening why use the stupid orange stuff that everyone hates, is toxic to everyone in the room and makes the patient have lung spasms?!?! Crazy!

Now on to the GI cocktail.  Here is a picture of the bottle...

Note the 2% lidocaine! It made her throat and tongue immediately numb. She got a kick out of it and we both had a pretty good laugh just when we needed it. Of course she knows what heart burn is and what she was experiencing was not heart burn. But they have to rule everything out so she got some stuff to calm her tummy and numb her throat. It didn't make a dent in the check pain but was a bit of comic relief.

Of course all this went down just as I was supposed to get her dinner. Then add the pervious cocktail into the mix and she was not allowed to eat until after 10PM. I ran out to Sweetbay and picked her up a late night snack so not all was lost.

That brings us to todays news. AS mentioned before her chest pain has gone away, I'm guessing it was a side effect of the Thymo or left over problem from the anti-fungal. Today she was supposed to get the second dose of Thymo but the nurse just came in and told us the doctor canceled it for today. He said one of the numbers they look at in her blood work was too low for her to get the treatment. Something about the white blood cells. So for now she is on hold with the Thymo. The plan was three to five doses of Thymo, depending on her antibody levels each day. Then one dose of IVIG before she goes home. That puts us out of here Tuesday or Wednesday instead of our hoped for Monday release date. The nurse said that taking today off the Thymo shouldn't put us off schedule because they will not give the treatment if its not safe. In other words they are not stuck on that three to five doses number. We are however stuck until at least Tuesday, probably Wednesday before we get out of here.

I was going to take tomorrow off so I would be ready to take her home when she gets released. Instead I will go to work tomorrow and take Tuesday and Wednesday off. I hope that does the trick because we have an event for work on Saturday that I can not miss.

Anyway looks like she gets a "day off" today. Not that it does her any good to have a day with nothing to do. But at lease she is not tethered to a tube for six plus hours. They already gave her Benadryl in anticipation of receiving the Thymo so she is a little tired this morning. Maybe we can have a better walk by the water after she wakes up some. Thanks for the prayers, I'll update again soon.