Scared…

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• July 5, 2005 at 6:20 pm #7386
  Carrie

  Member

  Well, I’m glad Kathryn’s dad is improving.

  Mine is having a lot of trouble. Here’s what we’ve been dealing with:

  Sunday he found out that they had almost run out of antibiotic options for him.
  His fever started getting higher (hovering around 39 celsius).
  He’s getting mouth sores (maybe herpes).
  Yesterday morning (Monday), he tried to get out of bed and couldn’t.
  Then he started having trouble breathing. They put him on oxygen but he’s still having trouble. They suggested that maybe he’s having a panic attack because his pulse ox is 98%.
  But today the doctor just suggested that they could put him on a respirator. They’re doing a bunch of tests (echocardiogram, CT scan, arterial blood diagnostics etc.) to find out what is going on. She’s giving mom and dad time to discuss the respirator and she’s going to come back to the room after her rounds to talk with them about it.

  He sounds so bad… my big, strong, burly dad who is only 54 years young is so weak. I’m really scared. I’m trying to work but I’m so scared.

  I’m looking into the Family and Medical Leave. I think I’ll be filling out the forms today. I can’t afford to take unpaid leave but I may have no choice.

  Are my fears founded, do you think?
  Love,
  carrie

  July 5, 2005 at 7:25 pm #7387
  JulieMarie

  Member

  Carrie,

  So sorry to hear about your dad. I hope he does better soon. Good luck with family medical leave forms. Below is a link to the forms that you & employeer will have to fill out. My mom had a hard time with this when she first went on FMLA. I ended up faxing the forms to Dr. to fill out and for my mom to take back to her boss.

  http://www.dol.gov/esa/whd/fmla/#form

  Hopefully you won’t have any trouble with getting family medical leave from work.

  Best of luck to you and your father, my prayers are with you.

  July 5, 2005 at 7:38 pm #7388
  sarah

  Member

  Hi Carrie, I too am scared. My husbands energy is getting lower each day. He continues to loose weight. No appetite. He is having soreness on one side of throat. No fever at this time.He too has mouth sores. He goes for CBC next Tuesday. I am real concerned everything is dropping. I work full time, but feel like I really need to be with him. This is so very hard on everyone. Keeping everyone in my prayers.
  Take care,
  Sarah

  July 5, 2005 at 8:44 pm #7389
  Carrie

  Member

  I got the FMLA forms. Thanks!

  Sarah, I know. It’s so hard.

  Update:
  They’re not putting him on a respirator because the arterial blood oxygen is okay.
  There appears to be no air movement in the lower quadrant of his right lung. The CT scan results are still on the way and they’ll give us a better idea. They’re worried about pneumonia.
  He’s getting the echocardiogram now. They’re also wondering about his heart.

  Don’t know what to think right now. I’m in a little bit of shock because of all of this. I’m not sure what to expect.

  Thanks for listening,
  Carrie

  July 5, 2005 at 9:39 pm #7390
  riley

  Member

  Hi Carrie,

  I’m very sorry to hear that your father is struggling so much. It’s good news that he doesn’t need the respirator.

  Have they ruled out that the mouth sores could be thrush? My father has had thrush a couple of times after being on some heavy-hitter antibiotics. A few days of Nystatin clears it up.

  Is his temp still high? If they suspect an infection that they haven’t found yet, have they tried a PET scan? My father had an infection that couldn’t be found despite cultures and CTs, and on the PET scan, it lit right up for them. The doctor said it’s an easy way to look over the whole body and see what’s unusual. They can also see how mottled the bone marrow is and get an idea of whether the MDS looks to be progressing.

  I wish I had some other ideas for you. Please keep us posted. You and your parents are all in my prayers.

  Hugs,
  Nicole

  p.s. I work in human resource management. If you run into any questions regarding FMLA that I may be able to help you with, I’m here. In many companies, you can combine FMLA with vacation or personal days — if you have any paid time off left, you may be able to take it while you’re on FMLA — so you’d have the job protection of the FMLA and still be paid.

  July 5, 2005 at 9:44 pm #7391
  Carrie

  Member

  Nicole,

  Yes, his temp is still high and they’re worried about that.

  I’m not sure about the thrush. I’ll ask.

  I’ll also ask about the PET scan. I know we’re also wondering if he has AML and they were planning on doing another biopsy soon.

  OH — and the did the biopsy of his “bruise”. We’re waiting on the result of that, too.

  Thanks for the support and thoughts,
  Carrie

  July 5, 2005 at 11:26 pm #7392
  Terri

  Member

  Carrie, keeping your Dad in my prayers, I hope they find what the source is and he responds.
  This disease is so scary, Even with Bob doing ok so far I still get very scared.

  July 6, 2005 at 2:37 am #7393
  kristyk

  Member

  Carrie
  My thoughts and prayers are with your Dad. I too am doing FMLA so I can be available to my Mom when she needs me. It has been great, although I am going through it fairly quickly. I have slowed down some, trying to conserve for when she becomes really ill, which she (thankfully) has not. I tend to panic and run to her ( about 2.5 hours away from me) whenever she has a small infection..I’m still trying to find my groove I guess, still scared and unsure about this strange disease. Luck to you and your Dad. Kristy

  July 6, 2005 at 1:09 pm #7394
  Carrie

  Member

  Good morning all!

  Dad doesn’t have pneumonia (Whew!). They’re still waiting for results of the echocardiogram.

  The doctor says that he’s not using the bottom half of his lungs to breathe so they’re having him do deep breathing. He seems to do better when he takes deeper breaths. They haven’t ruled out anxiety.

  They still sat down with him to discuss his wishes about a respirator (if it came to that). He has some time to think about it.

  His doctor said that he could go either way right now.

  On a side note, Kathryn called me last night. She’s SO nice. It was wonderful to talk to someone who shared the same experiences and concerns. I really hope that her dad wakes up well today.

  I’ll let you know more later. Things seem to change a lot lately.

  Carrie

  July 6, 2005 at 5:59 pm #7395
  PAG2005

  Member

  Carrie,

  I’m glad your dad doesn’t have pneumonia. I hope they find the source of his infection soon. I know how hard it is to see your dad weak. He will be in my prayers. Pat

  July 6, 2005 at 9:40 pm #7396
  Carrie

  Member

  Quick update.
  Unfortunately dad DOES have some fluid on his right lung. They’re putting him on Lasix.
  He’s still struggling a lot with his breathing and he sounds and feels terrible. They’re doing a nebulizer on him every 4 hours.
  His last temperature was below 37 celsius (The GOOD news).
  I forgot to mention that he has decreased urine output so his doctor might test his kidneys. Maybe they’re going to wait until the Lasix kicks in.
  I’m going to write more tomorrow after I hear more from my mom tonight.

  Thanks for your support,
  Carrie

  July 7, 2005 at 1:24 am #7397
  Jimbob

  Member

  Carrie,
  So sorry to hear all that your dad is going through. He does sound like a fighter and many of us are praying for him
  As far as FMLA, see if your employer will let you use it to decrease you work week. My wife has streched it out for over 18 months by only taking off the time she needed to be with me. Different employers have different apllications.
  Good luck
  Jim

  July 7, 2005 at 3:08 am #7398
  Kathryn

  Member

  Hey Carrie, were your ears burning today? I was telling my sister about our conversation and how nice it was to talk to you. It makes such a difference when someone truly understands…

  I am so sorry your dad is feeling so badly. I hope that the Lasix will help. Getting him to move – sit up – even raise his arms above his head periodically might help….

  I can’t remember if I had made these suggestions to you previously, but if he likes music, a headset or boombox w/ his favorite tunes would be nice. Music can bring your spirits up as well as relax. Books on cd or tape might be nice to “take him away” if he doesn’t feel up to reading. Videos are another option too….Is he receiving physical therapy? Does he feel well enough to go outside for just a bit in a wheelchair and get some sunshine on his shoulders? Sunshine is supposed to help moods as well…something about the vitamin D I think… don’t quote me though!

  Carrie, I’m thinking about you all and will be praying for better days to come soon. Take good care. I’ll talk to you soon!

  (((BIG hug))),

  Kat.

  July 7, 2005 at 6:15 am #7399
  geebeebee

  Member

  Carrie, best of wishes for your Dad’s recovery. I hope the worst part of this is behind him.

  Take care,

  Greg

  July 7, 2005 at 1:11 pm #7400
  Carrie

  Member

  Thank you all…
  Unfortunately the worst is not behind him. Last night his breathing got worse and his doctor asked if he wanted the respirator. He agreed.
  While they were intubating him, he had some complications. They think he might have had a heart attack.
  They got the tube in and he’s sedated.
  They took out his mediport from his chest and tried to insert a new one. First, in both his arms and then in his jugular. They couldn’t access anything. So they put it in his leg.
  His mediport has been blocked lately. They tried all kinds of medical “draino” and they haven’t worked. I think they’re testing the port to see if it’s the source of his infection.
  We’re waiting to see if the Lasix will work to remove the fluid in his lungs.
  One of the medicines he was on (antifungal, I think) may have caused kidney problems. He’s off it now and, with the Lasix, they hope he’ll start losing the built up fluid in his lungs and legs.
  The cardiologist said they couldn’t tell anything for sure about the heart attack yet. They took blood to check his enzyme levels. They also think he may have congestive heart failure.

  Needless to say, he’s not doing well. As things are constantly changing, I’ll post a new update message when I know more.

  I’m devestated and trying hard to focus. I’m also grieving for the people in London today. It feels like Sept 11th all over again.

  Kathryn, thanks for the advice. I’ll see about getting some of his favorite music in the room.

  ButchL, I know you’re reading this. They moved him to 5 East. That pretty much says it all.

  Thanks for listening,
  Carrie

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