Saturday, February 21, 2015

Not Home - Again

I was gently reminded yesterday (by my brother) that I have not updated the blog recently.  I realize it has been a week since the last update.  Really sorry about that.

So things are not going so great.  I would not say they are worse, just miserable.

Alisa has basically been throwing up every time she stands up.  This happened that last round of chemo and it took 3-4 days for her stomach to settle down and get back to normal.  I figured we could get through those 4 days at home with nausea medications.  Here is how it went down.

Saturday Feb 14th
   She was sick all day and so we decided to give her some "food" and water through the feeding tube.  It was clogged.

Sunday Feb 15th
   Still very sick.  Alisa is now concerned she is not getting enough water and is getting dehydrated.  Spent the day trying to unclog the feeding tube, even called the Home Health nurse to help.  No luck.  I convinced Alisa this was not an emergency situation and we didn't need to go to the emergency room to get fluids and get the feeding tube replaced.  We could just go to Huntsman Acute Care Clinic Monday morning and they would take care of it.

Monday Feb 16th - Presidents Day
   Huntsman Acute Care Clinic is closed for the holiday.  Dang.  During all this time I am giving her round the clock nausea medications and hoping things will start to get better.  I keep telling Alisa that this isn't the first time she has had uncontrollable nausea, she will start feeling better soon.  She believes me (or at least pretends to).  She gives in and talks to the on-call Doctor in the afternoon.  She suggests waiting until Tuesday to come in to the Acute Care Clinic.

Tuesday Feb 17th
   9:30 AM - We arrive at the acute care clinic and they give her fluids.  We spend the entire day here.  They remove the old feeding tube and place a new one.  They give her IV nausea medications.  They give us the option to stay in the hospital or go home and try and manage the nausea at home.  I vote for going home and Alisa agrees.  I think she does it to be nice.  She doesn't like the hospital but she really thinks there is something more going wrong.  I tell her is has now been 4 days since chemo was over and that things will start getting better.  I commit to doing better at making sure she is getting her nausea medications on time (one every 8 hours, another every 6 hours).  I think with the new feeding tube I should be able to keep her nourished and hydrated.

Wednesday Feb 18th - Thursday Feb 19th
  I basically force Alisa's medications for the next 2 days.  She is getting 12 hours of feeding tube food and water each day.  I sneak some medications she hates through the feeding tube when she is sleeping.  we wake up in the middle of the night to give her the medications.  She throws up less during the 2 days.  but only because she is sleeping, all the time.  Thursday night she tells me not to wake her up for medications.

Friday Feb 20th
  Without the constant medications Alisa is much more alert and even helps get the kids ready for school (amidst a couple of bouts of vomiting).  I decide to go to work for half a day.  She decides to see how she does during the morning and call the doctors office around noon.  It has now been a week since chemo therapy and nothing is helping her nausea.  I have no more ideas.  The Doctor tells us to go to the Acute Care Clinic at 3:30.  I really hate the situation at this point.  I am not sure what else they can do, but I certainly am out of options.  We show up and they start fluids and ask if Alisa wants to be admitted so they can try and figure out what is going on.  The idea is that if she is in the hospital they can make quicker adjustments to her treatment to find the right combination to make her feel better..  I think they are right, certainly faster than giving us one thing to try, sending us home, and coming back 2 days later with no results.

Saturday Feb 21st
   Alisa slept pretty well last night, but the nausea is not really getting better.  They are giving her IV meds for the most part.  One of the hardest things about this (besides Alisa feeling miserable) is trying to communicate the success (or lack of success) of the current treatment.  For example, if Alisa only throws up once through the night, is that better?  If she threw up 6 times yesterday and only throws up 4 today, is that better?  The problem is that if she is constantly medicated (sleeping) she can go quite a while without vomiting.  She kept down 2 bites of apple sauce last night.  We want to think that is progress, but I am not sure.  She has had a popsicle every day this week, and has thrown it up each time, but did she throw up the whole thing or just 90% of it (keeping down the first 2 bites maybe)?  So you see the problem. This is hard for me, because I like to think I know how to take care of Alisa.  I wanted us to go home, because I thought I could handle things just as well.  I watch them give her the same medications I have been giving her, and nothing helps.  Normally they would give steroids at this stage to fix the nausea, but they want to avoid steroids as long as possible because they can negate the affect of the IL2 she has been receiving.  I told Alisa last night I would keep my mouth shut because I don't really know what to do (that did not work out perfectly this morning, but I am tempering myself).

So now you are up to date.  Sorry again about the lack of info this week.  For all the thoughts and prayers, you really deserve more than an update once per week.  I will do better.

-Josh

18 comments:

  1. Posting takes so much energy, so no need to apologize. You are so kind to keep us all as informed as you do. I sure hope she feels better soon and your stay in the hospital is brief.

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  2. Thanks so much for the update. I check the blog often to see how she is doing. Please let us know if there is anything we can do to help. You guys are in our prayers.

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  3. glad you posted an update. we will keep her in our prayers!!!

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  4. You are doing a great job, Josh. Alisa is so lucky to have you. I wish things were better for you both.

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  5. I agree with Sonja...no need to apologize. The prayers are not dependent on how good of a blogger you are. ;) I am constantly amazed at the human spirit and what it can endure. You are all handling this trial with such patience. I hope you are able to find glimpses of Heaven's help in all of this. Continued love and prayers from Idaho.

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  6. Thinking of you. Your family is in our hearts and our prayers.

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  7. I stumbled across this blog about a year and half ago, not sure even how I came across it. I also don't think that it was a coincidence that I did......I am amazed by Alisa's perspective of the gospel and how we can deal with our trials. Your family is in my prayers! Thank you for your amazing example of faith!

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  8. Pukety puke puke puke. That's how I feel about this situation. Josh. You are doing a tremendous job. Alisa, you are the toughest person I know. Loves to you both.

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  9. I'm grateful for the update, but please don't worry about posting when you have so much you are dealing with. You are a constant in our prayers. We love you guys.

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  10. Thank you for the update Josh. You do a great job, giving us facts with just enough temperant and positivity to know you and Alisa are working through some real hard things, but boy...you sure make a great team! If I could, I would take all of Alisa's vomiting today so she could have some reprieve on this day of rest. Loves to you both...and those sweet boys!

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  11. I have been wondering about how Alisa is. I am sorry to hear that she can't keep much down, and that you have had to return to the hospital. We are praying for your whole family.

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  12. Miss you guys! We are praying Alisa can regain her health!!!! Stay strong guys!! ❤️

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  13. Josh,
    thank you for the update. I check daily for one but know you have so much more going on then worry about blogging. You all continue to be in my thoughts and prayers. I feel so bad about the throwing up and nausea it makes me sad. Sending you my love and care.

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  14. You are doing such a good job with all that's on your plate right now. Glad for the updates but so sorry for the miserable week. Praying for sustaining for all of you.

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  15. I wish that I could puke for her so she could have a break. I truly mean that. My heart HURTS for you Alisa. So thankful for the updates you provide Josh. I know that things are probably just crazy for you right now but we all appreciate when you do! Hang in there, I'm praying that healthy days are on the way. Prayers and love! Xoxo

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  16. Don't apologize. I'm just grateful for any updates and ache for all you're going through. Both alisa with all her pain and throwing up and josh for trying so hard to help and ending up back at the hospital. You're both so amazingly strong! I wish there was something I could do to help. I'll pray even harder . Maybe in Spanish too. ;-)

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  17. Oh Josh you two are the most amazing people I know. Praying something works. Love you guys.

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  18. I feel terrible that she feels so miserable. Sorry to the both of you. I agree with everyone, so badly wish I could make it go away and help somehow. Thinking of you always!

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