Thursday, December 16, 2010

Room 17, Bed 2

When I last shared what had been going on in our lives, Mike was considering a treatment that would change the life expectancy of a pnh patient from 5 to 10 years to a normal lifespan. Sounds like a no brainier right? But you can never come off of it, if you miss the bi-weekly treatment by even a couple of days, you can die. Another risk for those receiving the treatment is meningitis. To help prevent that they are given meningococcal vaccines. You receive the vaccines 2 weeks before you begin treatment.

Mike and I were getting excited, we felt we could deal with the lifestyle change and stay on top of the treatment every 2 weeks. He was told he would start to feel better within DAYS of beginning the treatment. So he went for it. He set up the first appointment  to be on Dec. 23rd and made jokes about how this was his Christmas present to himself.
We went across the hall of Sitemans Cancer Care unit and waited 2 hours to receive the vaccines.
1 in his right arm and the other 2 in his left arm.
We went home and Mike went to a hockey game that night.
On Friday he woke up complaining of arm pain, fever, chills and dizziness. I gave him ibuprofen and made him stay in bed. His fever went down and he just slept all day. Saturday he couldn't move his arm. He looked awful and could hardly walk. His arm had swollen to twice its normal size and was now purple where he received the 2 vaccines. 
We called my mom to take care of the kids and went to the ER.

The doctor that first saw him said he has something called cellulitus. Which is a tissue infection. He was pumped full of antibiotics and admitted into the hospital. During this time Mike's fever shot up to 103. He was delirious and said shooting pains were developing in his arm. Within hours the swollen arm began to turn black in the center with redness stretching from the underarm down to his elbow. I was in shock. I couldn't believe how fast this was happening. Sunday came and a specialist saw him, stating that surgery would be needed to cut away dead tissue to keep it from spreading further and to allow his arm to begin to heal. I was freaked out and for the first time in our 11 years of marriage, I saw Mike was afraid. 
The problem with surgery for pnh patients is they do not have enough red blood cells to heal and their platelets are too low to recuperate from invasive surgery.
With his arm in intense pain, fevers making him extremely uncomfortable, nausea, a heart rate of 140, high blood pressure, red blood cells hovering around 8 (a normal man is usually at 14 to 15), low platelets, not enough oxygen and  being unable to fall asleep due to the high heart rate, it felt like we were losing him.   

They tried 5 different antibiotics but his body couldn't fight the infection with any of them. He was given a blood transfusion but couldn't finish the whole bag because his fever shot up again and they had to stop it. I still do not fully understand that but he did end up receiving the rest later.
After a surgeon and a doctor of infectious diseases looked at 2 cat scans of his arm, it was decided that the infection was not in his muscle as originally thought and he would not need surgery. 
This was a major relief.  

Now it is Friday. he is still in the hospital, still fighting the infection in his arm, but his last fever was over 24 hours ago. They are not even giving us an estimation for when he will be well enough to go home but he is slowly, minutely, getting better.
It will take time to heal from this and his pain will be intense for awhile as the damage to his arm is akin to that of a second degree burn.
But he is still with us, still making jokes and still insisting on telling the nurses how to do their job.


48 comments:

  1. My prayers are with you and Mike, what he is going through is so scary, I don't think I would be able to deal with it if it was my husband........my heart goes out to you and your family I'm praying for a fast recovery

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  2. from someone that understands..... HUGS for you.

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  3. omg i was atcually holding my breath through your post, its an awful time to be ill around christmas. my thoughts are with you and your family I wish mike a speedy recovery.

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  4. Hope the recovery will be fairly quick! Best regards, Linnea

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  5. Saying a prayer for Mike and you for strength and health.

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  6. What a frightening ordeal. I can't tell you how relieved I am to hear that no surgery is needed and that Mike is on the mend. That is the best news ever. Thinking of you and your family with healing and hopeful thoughts.

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  7. dear shannon - this is just so frightening... i am so glad that surgery was ruled out... so sorry that he had this horrible reaction... while rest is almost impossible in the hospital, sleep when you can... you are helping mike get through this, with your strength and love... sending all the healing thoughts i can muster...

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  8. Shannon, Words can't express my sorrow. I'll pray that Mike is home with you soon and feeling better. He sounds like a pistol! I'm sure the nurses appreciate his sense of humor. :-) I mean, if they have to be at work, they may as well laugh about it!

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  9. I am soo sorry to hear about Mike's terrible ordeal.you have been in my thoughts this week but i had no idea how shockingly serious this situation had become.
    it's brought tears to my eyes to think what you all have been going thru. you are in my thoughts and prayers.

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  10. Thanks for the update I have been thinking of you guys everyday.
    I am glad he is in good spirits and on his way to recovery.
    I'll keep praying for strength for you and for Mike.
    Shannon C

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  11. OH MY Shannon my heart is right there with all of you and I am sending the best healing thoughts I can! I am here if you need me as always.
    Huge Hugs and Love to you and your family!

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  12. Oh sweetie, you've both been through a lot. And it's scary stuff when things happen so fast and seem out of control. I'm so happy Mike is on his way to recovery, and pray the new procedure works its magic.

    I'm sending up prayers for everyone in Room 17.

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  13. I'm so, so sorry for everything you and Mike have been through but relieved to hear Mike is getting better. I hope something can be found to help him long term. My thoughts and best wishes are with you and you family.

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  14. Shannon,
    I'm glad that Mike has made it through. What a terrible, scary thing to experience. I hope that he continues to make leaps and bounds in his recovery. My thoughts and prayers are with you and your family.
    Michelle

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  15. My heart is with you and your family, Shannon. I'm glad they did not have to perform surgery on your husband and am glad he is still with you and your family. I am sending positive thoughts to you and praying for the best.

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  16. I could'nt stop reading your story to get to the end hoping it was good news..............Why did the shot cause that kind of a reaction? What does Mike have?

    Leslie Powell


    P.S. I will say a little prayer for your Mike....I have 2 Mikes :)

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  17. Shannon you and your family are in my prayers. Take care.

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  18. My thoughts are with you. Sending hugs

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  19. Prayers. Lots of prayers for you and your sweetheart! I pray for healing, wholeness, peace, comfort, and love surrounding you all.

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  20. Oh my goodness. Words are really inadequate sometimes... Glad he's starting to do better. All the best to you and your family.

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  21. I have felt tears reading this and thats a small raindrop to what you have to be feeling and Mike and your families. I am so sorry of what you are having to deal with and my heart really goes out to you Shannon. Im praying for Mike and that the Lord continues to have His hand on Mikes life situation. I will keep praying that the Lord keep His very watchful and healing eye on Mike. With so much Love~ Janet xox

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  22. HOLY CRAP! OMG! What an awful, freakish experience for you all!! And when you were probably expecting this to be the routine, "easy" part. Unbelievable. That sure doesn't sound like a typical vaccine side-effect--I think I'd look long and hard at the person who gave him those vaccinations, and I would insist on knowing what kind of bugs were cultured from that infection.

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  23. Shannon, I read this earlier and didn't know what to say. I didn't have the words to convey the support and comfort that I want to send your way. I still don't have adequate words. But you are in my prayers.

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  24. Oh my dear, to read your post is so painful. I can't even grasp the worry, pain and fear you have been in over the last period. I have tears in my eyes. I can only say I am sooooooo much thinking of you. Sending you all the hugs I can, stroking your forehead slowly, letting you lean your head on my shoulder, or anything else you need to feel only the slightest better about your situation. I wish I could be there and help you. Dear dear Shannon. And dear dear Mike. I am glad to hear that it seems like things are going in the right direction.

    Malin

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  25. You and your sweet family are certainly in my prayers.

    God bless you,

    Kym

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  26. I am so glad things are improving. I can not even imagine how scared everyone was. Best wishes

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  27. prayers and light to you and Mike....hang in there sweetie
    ~Sharon~

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  28. I knew something was wrong....I had this feeling. I am praying for his recovery and for yours after this horrible ordeal. Will he still stay on the original treatment plan, will this happen again?
    Hugs and prayers to you all.

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  29. I know I don't comment often but I just wanted to say I will be sending prayers for your husband and your family for strength and healing.

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  30. You are in my prayers - we have also had a very challenging 2 weeks (((hugs))) I am hoping you will both feel better soon.

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  31. Shannon, you hang in there. You guys will get through this. What a pain in the bum for your sweet man. His sense of humor is what will pull him through. Sending LOTS of hugs and love girlfriend. This will be a holiday to remember that you guys got through all this. Take care, Riki

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  32. Oh Shannon, my heart goes out to you, Mike and your family. My thoughts are with you and I hope so much that Mike continues to get better. Much love.

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  33. this is so scary! I feel for you, knowing the stress and anxiety you must be going through. My thoughts and prayers are with you and Mike through this horrible ordeal. I'm so glad he is showing signs of improvement!
    Erin S

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  34. I hope things have gotten better since this post! I'm thinking good thoughts for you and your family!

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  35. Holy crap, honey. I've had cellulitis, and it IS incredibly painful, but I've never had anything like this.

    I'm praying hard for you both. Private email coming.

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  36. Shannon! I just checked your blog (Sunday evening)! What a shock to see all that has happened to you and Mike! Believe me, I can relate to your fear, but so glad to read that he didn't need surgery and is recovering. We're all hoping for a good outcome, even though you hit a bump in the road, as my friend calls these little events!! Do have courage and draw on the invisible, but very real support that is coming your way. Take care!

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  37. My thoughts and prayers are with you and your family. What a terrible thing to have happen when you were so excited about the new therapy. I hope he gets better very soon. Take care...

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  38. Bless your hearts. I'm glad he's getting better though. Hold on my friend! (I'm posting as ANON - I can't remember my password! ~ Laura in Louisiana)

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  39. I had no idea!! OMGosh! How terrifying for you! I have not been blogging lately, taking a short brake and only saw your post just now!
    Hugs! Luv Ya!
    I hope you guys are OK, my prayers and love are with you!!

    I hope you can still have a Merry Christmas!

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  40. I am so so sorry. I read the original entry and was so hopeful. I hope he is soon out of the hospital. My husband was just diagnosed with pancreatic cancer. We are fighting the insurance company for a treatment that will give my husband five more years.This is all Tough stuff. Forgive me if I am repeated this twice!
    Hugs,
    Suz

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  41. Shannon, I can't even begin to know what you're going through but what I do know about you-- you are going to make it through this. There is no question in my mind. I know our Universe only includes a complete recovery for your husband, there is no alternative. And you have to believe that too. Please take some comfort in knowing that there are a lot of folks out here who are rooting for you and Mike. For him to recover, for you to do well in your endeavors. Let me know if there's anything I can do from here.

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  42. Shannon, I'm thinking of you, Mike and the kids and hoping his recovery is speedy. May the sunshine return to your lives.

    Jan

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  43. Blessings to you and your family. My ex got cellulitis once from a glue gun burn that he didn't wash after it happened. It is astounding and baffling how quickly the infection can turn deadly. His case was much less serious than Mike's but he was still in the hospital for several days and came home with an IV in his arm. I'm so happy that Mike is doing better!
    Now it's time for you to get some rest if you can. You must be completely exhausted.
    Sending love and light.
    Laurel

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  44. Just catching up on my favourite blogs and saw this. I totally mis-understood the post before this one and thought it was your little girl who was ill. What a scary experience, your family is going through, prayers are being sent asking for his devine healing to be granted to Mike and your family.

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Thank you for taking the time to read and comment on my blog, it means a lot to me.
Shannon