Posted in Blood, Brain surgery, Cortisol, Cushing, cushings disease, Endocrinologist, ENT, Johns Hopkins, Neurosurgeon, Recovery, Surgery, tumor, Uncategorized

Another account of my hospital visit

While at the hospital, my dad kept track of everything going on! Here’s what he wrote down in his phone:

November 9, 2016 Wednesday

5:15am arrive at hospital and check in.

In pre op. Meds at 7:40am

Moved to operating room at 8:20am

9:30am surgery just started.

10:30am still in surgery. Everything ok.

11am I ate lunch.

No update at 11:30 or 12:30.

12:40 asked and was told they removed tumor and Julie is stable. 

1:20pm doctor came out and said everything went good. Can see in 45 minutes. Need to check her cortisol levels for next couple days.

2:15pm go back and see Jules. 

2:50pm medicine for pain. Throat, head and ears. Nurse did examine, all parts move. Can have more meds at 5pm. Phentinol. A couple blood test. Blood sugar looks normal.

4:15pm more vitals. Blood work for cortisol.

4:35pm code red alarm went off. 

5:30pm more meds

6pm we left. Kevin here.
November 10, 2016 Thursday

9am got to hospital. During night Julie had insepidis diabetes and had to get a shot in her stomach. She said they kept coming in all night checking her and drawing blood. Also giving her meds – potassium and pain. I asked about cortisol levels and they hadn’t gotten results.

10am more rest and meds. Kathy and Mary here.

10:45 finally got cortisol results and said it was a 10. Supposed to be below a 28, which we thought was good.

11:15am came in and said the doctors want it below 5. Ordered some food but Julie not hungry.

12:15 sanitize room. Still no word from docs about cortisol or insepidus. Still drinking lots of water. Did eat container of mango Italian ice. Lots of stomach gas.

1:30pm Kevin went home. He got $20 In change from parking machine. I went to lunch. Julie got another shot in stomach for insepidus. 

4:30pm everything still about the same. Pain in stomach, head and eyes. Still won’t eat. 

5pm more meds and blood test. Julie tried to poop but couldn’t. But did order food. Waiting for that. Kathy and Mary left. Kevin back.

6pm. Still can’t eat. Another endocrinologist came in. No new info. Getting ready for MRI. 

7pm more pain meds and ativan to calm her down for MRI. 

8:52pm Julie back. They said she did good. Results back tomorrow.

9:12pm I left for night.
November 11, 2016 Friday

8:30am back to hospital. Kathy right behind me. Julie doing really good. Last night they switched her from phentinol to oxytocin. Her cortisol dropped from 10 to 5. Now they want her at 2. Did say that tumor was completely removed and pituitary gland looked ok.

10:30am Julie finally ate. More doctors in. Nurse Emily came in and said they need to keep her in icu another day. Cortisol shot up to 9.3. Julie head still hurts. Switched back to phenatol. 

About noon Kevin and I got lunch at subway. Julie wanted a sub. She ate most of it. 

1:30pm Gallia and Ishuii? came in. Said Julie will move upstairs once a room comes available. 

2pm finally pooped and getting cleaned up. Refuses to brush her hair.

2:45pm Kevin left. Nurse gave her dilaudid for her head pain.

3:15pm Julie finally sleeping.

3:45 had to get up to pee. Nurse unattached her from machines. Everything ok.

4:45pm getting ready to move out of icu.

530pm moved out of nccu into private room on 12th floor. Took a little bit to get her settled in. Ate dinner. Getting her appetite back. 

6:45pm gave her some dilaudid. Still has pain in her head. Kathy left.

8:15 more meds and blood drawn. 

8:30pm try to get some sleep.
November 12, 2016 Saturday

9am Kathy here. Restless night. Lots of people in and out. Said she will have to stay another night. I left for a while. Came back about 5. Got Julie dinner. Ate a lot. I left about 8:30pm. Kevin spending the night.
November 13, 2016 Sunday

9am visit Julie. She seems to be doing better. Fingers crossed about leaving today. Another iv for antibiotics. 

10:15am Kathy and Mary here. Nurse said cortisol dropped to 2.8. Waiting for endocrinologist and neurosurgeon to agree on letting her go home.

12noon. Told she could leave. Doing paperwork.

2:15pm left hospital. Picked up all her prescriptions first. $50 co-pay.

Posted in Blood, Brain surgery, Cortisol, Cushing, cushings disease, Endocrinologist, ENT, Johns Hopkins, Neurosurgeon, Recovery, Surgery

Sorry for the delay..

My iPad charger decided to stop working and that’s where it was easiest to post from. So I came up with a better idea for the time being! 

Here’s a graph of my cortisol levels. As you can see, before the tumor was removed they were incredibly high! 


Here are pictures of the bruises I had after surgery. Pretty gross! All healed up now 🙂