Sunday, January 25, 2015

24 January 2015 - 11:59 PM

I don't know why I get my hopes up.  They did not let us go home today and when the doctors came in I didn't have the guts to ask.  They don't really know, so it isn't a fair question anyway.  They are not going to send her home until they think she can be comfortable at home.  Basically they need to get her nausea and pain under control.  The only hint hey gave was when the doctor said, "Let's give you some more fluids, make some changes to the pain meds, and see how you are doing IN A COUPLE OF DAYS"

After talking to the doctors they decided to try adding oxycontin to help control the pain, and they had Interventional Radiology do another nerve block in her back (she just came back from that at 9:30).  I am really hoping that helps.

One of the things I have been concerned about this last week is that Alisa seems to be...not herself.  I don't know quite how to explain it.  It is like when you wake up from a vivid dream and for a few moments you are trying to remember what is real and what isn't, or just as you are falling asleep you are dreaming of soccer, you kick the ball and you jerk awake because you actually tried to kick in bed.  She seems to be in this state most of the day.  It is not very obvious to the nurses, because when she talks to them it isn't way out in left field, just abnormal for Alisa.  I have spent plenty of nights (and days) in the hospital with her and this is very different.  Even when she was on IL2 (which is notorious for making you...crazy) she was not this loopy.

The challenge is that for me, this is important to get under control, but it does not really concern the doctors (let me be clear, I think they are probably right) they believe it is just the amount of medications she is on, and it will pass once we figure out the right combination of medications.

I know I was joking about it last week, but it stopped being funny.  I just want Alisa back.  Here are some examples of the things she says and does that may seem normal, but are not for Alisa.  There are funnier things, but because they have lost their humor, I can't recall her best ones.

  • She gets excited about basketball plays -   Alisa will watch basketball, if there is nothing else to do.  We have been to some games, she has watched a few on TV with me.  But in all the years she has never commented with excitement, "Can they do that, that was a foul." "Whoa, nice dunk!" "ohh, why do they keep missing those?" (4-5 three pointers right in a row.)
  • She asks the nurses personal questions - She is normally very personable with the nurses, but in a very tactful, socially acceptable fashion.
    • Alisa: How is your daughter?
    • Nurse (surprised): My daughter, I do have a daughter...she is...fine.  (Alisa has never met this nurse, and I am sure the daughter thing was just a lucky guess)
    • Alisa: Good, good
  • She doesn't get mad at me for asking questions - Alisa has pretty much handled her own patient care anytime we have been in the hospital.  She is constantly asking the doctors and nurses what medications they are giving her, refusing the ones she doesn't want, asking for different ones that serve the same purpose, etc.  I learned a while ago that my job is to observe and support whatever she decides.  I have asked questions in the past and I get a look that I should hold my tongue.  It isn't that she doesn't want me to know, she just prefers that I ask her (after the doctors and nurses have left), so she can explain it in terms that I will understand.  It took me a while (almost a week) to realize that she was not controlling her care like she has in the past.  Today I started asking some questions (I am sure they were not ideal), she didn't even question me.  Good?  Nope, I prefer to sit back and observe.
Even as I write this I can see Alisa reading this and critiquing my grammar, punctuation, and entertainment value.  Well she can't spell, and I can't write (but I can spell). I think she married me for my good looks not my ability to write, lucky for me.

Right now my hope is that I can talk to Alisa again clear of mind.  I hate seeing her in pain, but I also hate that she is not able to laugh with me,  tell me how to take care of the boys, remind me not to bother the nurses with my questions, and talk about the future.  I hope I don't have to choose one over the other.

Thanks for all your prayers.  It really is the best thing you can do.

P.S.  I don't know who was praying for us tonight at 7:30, but thanks.  At that time is  a nurse shift change, our day nurse (Karen) was briefing our night nurse (Jen) on Alisa's situation.  I remembered about the nerve block we had discussed with the doctors in the morning (10:00ish) and asked Karen if she had heard anything.  She said there were no orders in the system and had not heard anything from IR (interventional radiology), she also thought that the IR doctors did not stay at the hospital on the weekends and typically needed to be paged for emergency situations.  She left and we thought we would need to re-address it with the doctors in the morning, and possibly wait till Monday.  five minutes later Karen came back in and said they just received a call from IR and they are on their way to get Alisa for the nerve block.  Prayers answered.  Thanks!

19 comments:

  1. We are so sorry Josh! We love you guys so much.

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  2. Prayers definitely answered!!! Sometimes I think God just needs to hear us verbalized what we need, what we want, what scares us, etc. I feel like that is exactly what happened tonight. You are doing a good job Josh. You aren't alone. ❤️

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  3. We will keep praying. I hope the nerve block helps and they can figure out a medication balance that can control the pain and let Alisa be Alisa. Thanks for updating. Thanks for taking such good care of her.

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  4. Josh - you are amazing and we are praying for you, Alisa, and your boys. Thanks for writing all these details. It really helps to know at least a small piece of what's going on and what you're going through.

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  5. I can't even begin to imagine how difficult it is to be in your position Josh. You have been such a rock through all of this. Know that as fervently as we are praying for Alisa, we are praying just as fervently for Heavenly Father to strengthen and uphold you. John 14:27 has and always will be my favorite scripture: "Peace I leave with you. My peace I give unto you. Not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." Praying this day for your sweet Alisa to come back to you, that you will be home together in a few days with your boys, enjoying the simple things. All our love! The McArthurs

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  6. Josh, you are truly AMAZING! I can understand your disappointment of not going home and lack of humor. You know all too well. Prayers continue and my thoughts are with your family always. Your such a wonderful guy, wonderful husband, father, brother, friend. You both are never alone. Much love and prayers!!

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  7. Josh, you are truly AMAZING! I can understand your disappointment of not going home and lack of humor. You know all too well. Prayers continue and my thoughts are with your family always. Your such a wonderful guy, wonderful husband, father, brother, friend. You both are never alone. Much love and prayers!!

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  8. Josh thanks for all of the updates. You are constantly in my thoughts and prayers.

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  9. Sometimes, it's the little things that make everything right with the world, like seeing the 'in charge' Alisa. Humans can handle just about anything but some things just need to stay the same. I think you have done a great job taking care of so many people, probably thousands of people who read this blog, with your humor in a serious situation but it's okay to admit that it really isn't that funny. I remember the day we walked out of the doctor's office after learning my daughter would have to do another 9 months of chemo. We couldn't stop laughing but inside we were so sad and scared. The secretaries all said, "Wow, you must have gotten great news!" There was nothing great about it but laughing seemed the only thing we could afford to do since crying would have surely shredded what was left on our already thin emotional brakes. I appreciate your honesty. I can't even imagine how hard it is for you to watch this unfold. I can't even...I know you are loved and I know that Alisa must be so proud to have such a loving husband by her side. The prayers and focused thoughts will continue for your whole family!

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  10. We love and care for you guys! Your family is constantly in our thoughts and prayers. Praying and fasting for many more answers to prayers!

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  11. Josh, I know it's the only thing I can do, but I'm doing it! I want you to know that you and Alisa and your boys are in my prayers daily! Sending love your way!

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  12. Having her get excited about basketball would definitely be out of character for her! I think its good you talked to the doctors about what is bothering you. That way they know how to help-as best as they can. You're doing a great job. I'm glad prayers are being answered! We will keep it up!

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  13. Josh - this was a great update! Thanks for taking the time to give us all those details! Prayers it is!

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  14. It must be an absolute test of everything you both have to stay in the hospital this long not knowing when you'll be released, but we really appreciate the detailed updates on the blog. You always have our prayers and love...both of you. Much love!

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  16. Alisa I wonder all the time why they keep missing those shots. We didn't tolerate that kind of stuff on our ward ball team. We miss you guys so much and hope and pray for improvements. Thank you so much for keeping us all updated while so much is going on.

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  17. Josh, I would love to come spend the night with Alisa so that you could go home for a while. I'm not a good sleeper, so I would watch her closely and try to stay on top of her medication. I know lots of people have probably offered, but please put me on the list.

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  18. Josh, I am so sorry. Reading your words just chokes me up. I hate to hear Alisa is in pain and just not herself. I pray every day your burden will be lightened and things will get better. I pray for normalcy. I think you're wonderful and she is so lucky to have you by her side. She had great foresight to know even way back when just how amazing a husband you would be. She shared many a daydreams about how perfect you were. Thank you so much for taking such great care of her. I've always thought the pair of you to be wonderful examples of strength and love. You both are more than amazing. I think about your dear family constantly and always have a prayer in my heart for you. Love you both.
    -My parents send their love, concern and prayers. They always thought Alisa was just the sweetest!

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  19. I'm so sorry Josh!! The feelings you are feeling are, I'm sure, Alisa's worst fear in all of this. I know the thought of when I might get the way she is scares me more than anything else I'd be dealing with. I think about and pray for you guys many times a day. I'm so happy to hear those prayers are being answered. Love you guys.

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