Jeff has officially been discharged from NIH today....YEA!!!
He will have to have blood tests every Monday and Thursday as they monitor his white blood count and liver profiles. We'll be back at NIH on 3/16 for an MRI and CT scan of the liver with a subsequent clinic visit the following day. After our clinic visit on 3/17, we will know when/if Jeff will have the second procedure. They are also planning on stopping the night time IV beginning tomorrow night but then Jeff will have to get up at 2 a.m. for a snack. Dr. Drennan explained that Jeff's insulin was 19 this morning (within normal range) and it was 198 when we first arrived. They don't want to get your hopes up...but either the PHP procedure or the diazoxide is helping.....whew!!
Now we just need to work on the low grade fever, loss of appetite, and low energy levels and things will be somewhat normal again. They have checked Jeff's blood and there are no signs of infection so he either has a touch of the flu or symptoms from the chemotherapy. We will also need to follow up with our Endocrinologist at Bethesda to find out why the Lutenizing hormone is low....but things are looking good for the first time in weeks.
I will continue to update the blog but probably not more than once or twice a week. Feel free to continue to post your comments and/or questions. We have loved reading them all and thank you all for your support through these difficult times.
Monday, February 27, 2006
Sunday, February 26, 2006
February 26, 2006 ... Day 6 at NIH
Yesterday I was able to convince Jeff to go to a movie with me. Dr. Pingpank agreed that the fresh air would do us both good. Rema, Jeff's nurse quickly made sure that we had all of the supplies we needed, glucometer, tylenol, thermometer to monitor his temp, etc. Rema has been taking care of Jeff for the last three days in a row from 7:30 a.m. until 7:30 p.m. and she has been absoutely wonderful. She's paged the doctor when we had questions, changed the dressing in the pic line, and always makes sure that he was comfortable. Jeff mentioned this morning that he'd like to introduce Rema to Justin.
We used the Internet at Jeff's bedside to find the Landmark Theater in Bethesea along with directions on how to get there. It was about a 5 minute drive from NIH and to our surprise, the theater had stadium seating. It was a small theater that plays independent films tucked away on a sidestreet with 8 movie screens and a consession stand that served gourmet coffee and lattes along with the traditional fare. We saw Brokeback Mountain and were both very surprised at how good the movie was....in fact, after the movie was over, no one stood up to leave their seats. Of course, we enjoyed our date away from the hospital more than anything. It's been several months since we've actually gone out by our selves and saw a movie.
I left the hospital around 6 p.m. lastnight and got a good night's sleep in my own bed but I'm going back this morning with Brittany and Bradley in tow. I think Bradley is driving to he hospital and Brittany is driving back from the hospital as they both need to get their driving hours in. I talked to Jeff this morning and he was up eating breakfast. His last blood sugar was 130 and they decreased the amount of dextrose in his IV from 10% to 5% last night. His blood sugars yesterday before the movie (and with out the IV since 7 a.m.) was 84. Before we returned to the hospital it was 107 as the hotdog and popcorn are good foods to help keep them where they belong.
I'm trying to talk Jeff into another outing today for lunch with the kids...wish me luck. I know that we are all looking forward to getting him home on Monday and perhaps get things back to normal for a while before this all starts again.
We used the Internet at Jeff's bedside to find the Landmark Theater in Bethesea along with directions on how to get there. It was about a 5 minute drive from NIH and to our surprise, the theater had stadium seating. It was a small theater that plays independent films tucked away on a sidestreet with 8 movie screens and a consession stand that served gourmet coffee and lattes along with the traditional fare. We saw Brokeback Mountain and were both very surprised at how good the movie was....in fact, after the movie was over, no one stood up to leave their seats. Of course, we enjoyed our date away from the hospital more than anything. It's been several months since we've actually gone out by our selves and saw a movie.
I left the hospital around 6 p.m. lastnight and got a good night's sleep in my own bed but I'm going back this morning with Brittany and Bradley in tow. I think Bradley is driving to he hospital and Brittany is driving back from the hospital as they both need to get their driving hours in. I talked to Jeff this morning and he was up eating breakfast. His last blood sugar was 130 and they decreased the amount of dextrose in his IV from 10% to 5% last night. His blood sugars yesterday before the movie (and with out the IV since 7 a.m.) was 84. Before we returned to the hospital it was 107 as the hotdog and popcorn are good foods to help keep them where they belong.
I'm trying to talk Jeff into another outing today for lunch with the kids...wish me luck. I know that we are all looking forward to getting him home on Monday and perhaps get things back to normal for a while before this all starts again.
Saturday, February 25, 2006
February 25th, 2006 - Day 5 at NIH
We've made some progress...although it's slow going. The cathetar in Jeff's neck was removed yesterday and the pic line was put in his arm. He's back on the diazoxide for the hypoglycemia along with the IV of 10% Dextrose. His blood sugar ranged from 140-160 last night but they've started to drop when the IV was removed this morning. The plan is to keep Jeff off of the IV today, allow him to control his blood sugar with regular small meals, and monitor him throughout the day. They plan to put the IV back in overnight to help keep the blood sugars stabalized and better controlled for in the morning...which is when his blood sugars takes a nose dive. He was up and eathing breakfast when I got in this morning and as soon as he takes a shower and gets dressed we'll take a few laps around the building. FYI - we are not confined the room or nursing unit. The hospital is in a 10 story building with an adjacent building connected by corridors. I've tried to talk Jeff into hopping on the Metro and cruizing into D.C. for a movie but he's said he's not quite up that yet. Perhaps I can convince him to do that tomorrow when I bring the kids in. Having a weekend or day pass sounds like it's something easy to arrange.
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