Wednesday, July 29, 2009

It Will Be Two Weeks Tomorrow

I am so happy to see things still progressing in the right direction. I can't believe how quickly things have changed. Alex gets up and out of bed every day...usually around 7:00 am. That is amazing compared to what time she was dragging herself out of bed, noon or 1:00 pm. Not only does she get out of bed, she is taking a shower every day and running errands with me!

Yesterday she met with her school counselor and registered for classes that start on the 10th. She isn't taking any online classes because she thinks she will be feeling well enough to actually go to the campus. Later in the day she bought a new desk for her room because she is excited to get started on school work. And another thing? She has a job interview, and it sounds like a sure thing. The Montessori preschool the kids went to is interested in hiring her part time and they are willing to work around her health/recovery!

We are still weaning; her current hydro dose is 20-10-2.5. She is taking half a Florinef in the am and half in the pm and she also started DHEA last week.

Saturday, July 25, 2009

She's Melting!

It is so bizarre! I really don't understand how this happens but Alex's appearance is changing. She looks like she has lost a lot of weight but she hasn't actually lost any at all. Her face shape is different and her belly looks so much smaller. Brian thought it might be the change from fat to more muscle but that doesn't make sense at this point. She is still doing absolutely nothing; well, okay she did leave the house yesterday for the first time, but she sure isn't doing anything to build muscle yet!

Years ago when I first believed that Cushing's was the issue there were times we would see her face shape change. Every once in a while we would be sitting at the table eating dinner and Brian and I would look at her and look at each other and both see it at the same time. That silent communication thing (30 years together) where we said nothing but silently acknowledged that she had changed yet again before out eyes.

I am excited! It feels like we are started down a road to recovery!

Thursday, July 23, 2009

One Week Post-Op

At this point we have reduced the dosage of hydro to 30-15-10, with reductions every day. We plan to get labs done soon and start DHEA after that. We also plan to start the Florinef soon, probably tomorrow, we are waiting to get to a lower dose of hydro before starting the Florinef. I think we will start with 1/4 tab a day and increase by 1/4 tab 'till we get to 1/2 pill twice a day.

We were told to expect recovery to be two steps forward one step back, that seems pretty accurate. Yesterday was a bad day. Alex was having a lot of pain and some major mood swings and depression.

On the positive side, things are changing. Her acne is vanishing, her skin has more color, the stretch marks are fading, the hump is smaller. Her weight hasn't changed, but she looks different. Her face looks thinner and her belly looks different; it looks like a fat person tummy instead of a pregnant tummy. Between the belly and the hump improving her posture looks different; it's hard to explain, but she looks taller and thinner. I didn't realize how much the hump was causing her to slouch.

I know she feels like poop, but we can see positive changes. Things are getting better.

Wednesday, July 22, 2009

Bilateral Adrenalectomies

We spent the night prior to surgery in San Francisco. We were up at 4:30, out of the hotel at 5:30 and at the hospital by 6:00. They called us back to prepare at 6:45. As opposed to the last surgery this prep was completely different. Everyone was more relaxed, the anesthesiologist hung out with us, Dr. Duh came by to chat, and the IV wasn't a problem. They rolled her away from us at 7:30. Someone form the hospital checked in with us and gave us updates every hour or so during surgery. At 2:30 Dr. Duh came to find us and tell us how it went while his team finished up with her. He is really great, he acts as though he has all the time in the world to talk. He said it all went well; her adrenals looked like "Cushing's adrenals", inflamed. He also said she had a lobular spleen, nothing to worry about.

In recovery they were giving Alex Morphine that wasn't working and Fentanyl that was. The switched the Morphine to Dilaudid and that helped with the pain.The pediatric floor was full so they put Alex into an overflow of ped's on another floor for the first night. It was nice, because she got a private room and a nurse with only 2 patients. After 24 hours they switched her into a shared room in ped's.

Because of the recent Crohn's flare they brought in the ped's GI team. With the nausea prior to surgery it was hard to gage what was what and they really wanted her to eat. After the first two nights in-patient they told us she could leave once three things happened; she needed to eat something (she had literally not eaten anything in a week besides 3 bread sticks and 10 Ritz crackers), she needed to get off the IV pain meds, and onto only Vicodin, and she needed to poop (that had been a week as well). After 3 nights she had eaten and gotten off the IV, so they let her leave without a bowel movement.

The ride home was interesting. They gave her a Vicodin before we left and called the Rx into the pharmacy at home. That meant we had to race for home to get her next dose. Sunday afternoon traffic was heavy but Brian did his best to drive 80 mph despite it. She was feeling awful by the time we got her meds, but we made it from dose to dose in 4 hours.

On to recovery!

Wednesday, July 15, 2009

This Is It~ The Time Has Come!

We leave for S.F. later today, when Brian gets home from work. It's lucky we booked a room for tonight; the surgeons office called to tell us she has been bumped up to 7:30am with a 6:00 arrival time tomorrow morning at the hospital. The good news there is that she doesn't have to go without food and water till noon, and with the earlier appointment they only ask you to arrive 1.5 hours prior to surgery instead of 3.

Since the Sunday trip to the hospital Alex hasn't been able to eat anything. The abdominal pain is better and there has been no more bleeding, but she still has diarrhea and is very nauseous. She's taking Zofran for the nausea but it doesn't seem to be doing much good. We saw the G.I. doctor yesterday. She thinks the high dose steroids in hospital will be a nice treatment for the Crohn's. She says move forward, get the surgery done, get on a maintenance dose of steroids and then we will do the scopes again. I suppose the Crohn's was aggravated by stress. Between the upcoming surgery and having the dog die on Saturday it was just too much.

So... this is it!

Monday, July 13, 2009

G.I. Bleeding and the E.R.

Yesterday morning when Alex woke up she was complaining of really bad abdominal pain. What started out feeling like constipation eventually turned into diarrhea, followed by bleeding. I guess maybe that's normal with Crohn's? I don't know; it's never happened to her before. She was pale, shaking, and nauseous as well so I called the advice nurse who told us to go directly to the E.R.

They ended up giving her fluids, pain meds, anti-nausea meds, running labs and ordering a CT. Even with both Zofran and Reglan in her system she had a really hard time drinking the contrast without puking. They consulted with her G.I. doc and let us leave about 10:00 last night. I called the G.I. doc this morning to see her for follow up and we will be going in tomorrow. Alex really isn't feeling any better today, and the anxiety it's causing isn't helpful. She's really worried they will cancel surgery.

Will this stuff ever end?

Saturday, July 11, 2009

Thursday, July 9, 2009

One Week To Go

Dr. F was supposed to call Tuesday night; they rescheduled to Wednesday night between 5:00 and 7:00. I waited till 10:00 and the went to bed after sending their office an email. This morning there is a response saying he is sorry and will call this morning around 8:00. This should be a quick, easy call, I'm not expecting any problems!
Alex has her first lesson driving with an instructor today. She got her permit about 2 weeks ago, but in California it isn't valid until you drive with an instructor. Brian took her out twice and I took her once, despite it being illegal. It seems pretty dumb to me to put a 15 year old behind the wheel for the first time in a neighbor hood full of people, cars, and traffic. Brian found an area where development of a neighborhood was halted by the economy- roads with no people- a ghost neighborhood! It will take 6 months to get her license, 5 lessons with an instructor and 50 hours behind the wheel with one of us. With surgery and recovery I imagine it will take more than the 6 months.

Tuesday, July 7, 2009

8 Days To Go

It's finally getting close! We have a pre-op phone appointment with Dr. Friedman tomorrow night and a pre-op phone appointment with the "prepare clinic" on Monday. The surgeons office called yesterday and has me a bit worried (only because experience has taught me too many things can go wrong). They offered the option of a pre-op with the surgeon for Friday; I declined. I feel like our prior appointment with him was sufficient and really don't want to do the 5 hours of driving, round trip, for no reason. They also said Dr. Duh would like to speak with Dr. Friedman this week to "confirm everything". I sent an e-mail and will also ask Dr. F to do this when I speak with him tomorrow. This is where I'm afraid of there being a wrench in the plan.

I finally heard back from the cardiologist, sort of anyway. I didn't get complete results on the echocardiagram, just a note on a script pad saying she had cardiac clearance for surgery. I told them to fax me everything and that was all they sent over.