Husband Update #2

He has now been in ICU for a MONTH!!  He continues to improve by leaps and bounds; it seems to us.  There were some scary moments - like when they wanted to put a PEG feeding tube in.  Once they mentioned the procedure, I noticed his blood pressure started to tick up.  When the OR team came into the room to get him for the 10 minute procedure, his blood pressure spiked so high, I was surprised his heart didn't just explode.

Bonus daughter and I were beside ourselves.  They were finally able to give him drugs to help calm him and were also able to sedate him for the procedure.  What followed after that was a scary high fever that had everyone kind of worried.

By the next day, things had gone back to "normal" (if you call being in ICU for a month and all that entails "normal").

From there, we have continued to see improvements.  Things like, him being removed from the ventilator and placed on a CPAP machine during the day.  Being moved from the CPAP to a vent collar during the day.  All things that he was tolerating really, really well.  But were improvements, that my husband could not measure.  Until today

Today the speech therapist came and placed a seal on the trach.  I'm not exactly sure what the purpose of the seal is; but as I understood it - it would help him be able to speak, and if he can pass the swallow assessment tomorrow, he should be able to start eating and drinking soon.  No sooner did she put the seal on, he was able to speak.

Is it raspy and a little garbled?  Yes.  But otherwise completely understandable.  I think even she was surprised that he could speak so quickly without working up to it.  But apparently, all his muscles needed were still strong enough even after a month of disuse.

I'm not gonna lie; tears sprang to my eyes when I heard him speak.  It was such a big, big step.  Needless, to say he was overjoyed.  And the next thing he asked was "Eat?" And that is when she had to explain about the swallow assessment.  

He informed me later that he was getting excited because, I assume, he could now see a marked improvement in his situation. He also informed me he wanted ice cream and he wants to come home.

He has also started to receive PT and OT.  And I think this is where he is now realizing that he is much weaker than he realized.  Now, it is extremely limited due to the hospital's limited resources.  Because as we all know, the goal is to get the patient OUT of ICU; not keep them there.

Which circles us back to the insurance issue.  They continue to deny that my husband is in need of Long Term Care.  At first they denied us because he was TOO ill and now they are denying us because he's TOO well.  WTF? Despite the doctor telling them repeatedly, that this patient is the perfect candidate for Long Term Care.  

What I don't get, is either way they are going to have to pay.  Either him to remain in the hospital or to go to Long Term Care or in-patient rehab.  So why the denials?  We continue to fight this battle.

But as of now, we are in a holding pattern. So currently, the plan is (while we fight this) to keep him in the hospital; continue to try and wean him from the vent and get him medically healthy enough for in-patient rehab (that the insurance company better damn well approve - at this point I have my doubts). One of the major things that needs to happen to get him into in-patient rehab is getting him off that vent permanently.  They won't take him otherwise.  Currently, he is only on the vent at night - so we are making some progress in that area.

But just being able for him to communicate clearly with us?  Such a huge, huge blessing and improvement.  I am so grateful. 

Husband Update

 Friends, thank you so much for the love and support you offered in my last post.  It means more to me than you will ever know; realizing that I have so many friends in so many corners of the world who are pulling for us.  Thank you.

The Husband continues to make improvements; he doesn't see it - but we, the family and staff, can see just how far he has come.  This coming Tuesday will mark 3 weeks since he was admitted to ICU.  THREE WEEKS!

He, of course, doesn't really remember the first couple of weeks because he was under heavy sedation.  He is only now beginning to realize what is going on, retain information and seems to understand what comes next.

What's next?  Well, if we can ever get the insurance company to sign off on it, he will go to long term care for aggressive PT.  And based on what I am seeing, I think that will pay off sooner than our son seems to think, (Personally, I think our son is trying to soften any blows if he doesn't recover as quickly as I'd like) because I can already see that he is starting to try and work his muscles and regain his strength.  As he knows the sooner, he can do that the sooner he can come home.

His current frustrations are lack of water, food (they need him to work with a speech/occupational therapist first to ensure he can swallow properly so he doesn't get food or water in his lungs - which would set his progress back significantly), and the inability to communicate clearly.  It has become abundantly clear to me that I will never win any awards in either lip reading or charades.

Today he asked, I'll admit it took us a long while to figure it out, when was Thanksgiving.  Which made it extremely clear that he had no real idea how long he's been in the hospital. Which, I can imagine, spending day after day on a loop, (not to mention the sedation) can take a real toll on your sense of time.  He also asked, the sweetheart always thinking of me, if I was eating.  He knows I'm not a cook (I mean I suppose I COULD if I HAD to) and I told him that friends were feeding me and when they weren't, I am eating (not the best of foods, but still).

Circling back to insurance.  We have appealed their latest denial.  And here's what Aetna (AetNAH, anyone?) needs to know.  We will continue to appeal AND we will begin a targeted campaign until they relent.  Because as far as I am aware, ICU does not have to capability to wean him off the vent successfully (I mean, I suppose they could but long term?  Does not make sense) and to do aggressive PT.  I did ask the doctor today what our other options were if it came to it - because as much as I want him home - I cannot adequately care for him in this condition.  Nor could I lift him or move him, as needed.  Unfortunately, all the doctor could do was express his frustration with the insurance company and tell me that we would need to talk to the case worker about that.  So, as you can imagine, we will be talking to him/her first thing tomorrow. 

The children?  Well, a perfect storm began brewing last week, as my bonus daughter's mother-in-law was dying.  Needless to say, she drove off to Ohio to be with that family as she rightfully should have.  I can only imagine how torn she felt.  She will be returning to us tomorrow.  Our son had a trip to San Francisco planned (a birthday surprise for his wife) and he waffled on going until it became clear that we would not be moving The Husband any time soon, and he felt confident in the level of care his father was currently getting; so I sent him off with my blessing.  Which left me holding down the fort this weekend.  Thankfully, local friends have been stepping in to fill the gaps when I have to leave in the evening due to utter exhaustion. 

In the meantime, ob-la-di-ob-la-da, life goes on.  In between hospital visits, the business of life continues to roll on and while it does, we will keep praying that he continues to improve.  All of the professionals that have been attending are extremely pleased with his progress; which continues to give me hope.

Thanks again, for all your love and support.  xo