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Friday, November 20, 2015

Even Less Sugar: Home Care, Therapy, and Back to the Hopsital

The problem with being a good communicator and a constant updater is that when you don't update people go ... "Hello? What's the word?"

To be quite honest, I've spent most of the last few weeks asleep on the couch, razed only for meals and medication times. Exhaustion -- depression -- whatever. I can't concentrate long enough to write an email, let alone a blog post, especially with the nebulous and fractured information I have to work with.

His occupational therapist was happy with his progress enough to discontinue this week. His speech therapist was working with him, carefully helping him navigate word finding and memory issues. His physical therapist was getting him MUCH stronger than he had been in the hospital – he was able to walk to the bathroom (downstairs) on his own from his hospital bed in the living room. We made tandem treks upstairs to shower.

However, starting a few days ago, he had bouts of confusion – nothing monumental but still different and less cognition. Two days ago things went downhill quickly as he was basically talking nonsense, repeating that nonsense over and over ("I need to put the windows in order"), and unable to follow direction (to lie down in his bed, for instance, did not make sense to him. He couldn't understand what I was saying, and he didn't know how to do it when he did). He also threw up – all signs of something bad going on in his brain. We headed to the hospital.

Yesterday (the day after admission through the ER the night before), doctors tapped his shunt to test the cerebral spinal fluid for infection. They've seen what they consider to be possibly infection on MRIs – but it also could be other things. It is not tumor material; the current areas of concern are not where the tumor is at this point. Despite being on antibiotics for four? months, the infection? or whatever it is, has not been eliminated.

The initial results were extremely low white blood count which is a good thing. The 24 hour turnaround is also favorable. There will be another check at 48 hours. They've changed one of his antibiotics to something else. Trial and error? Possibly.

The issue then, is: What is causing the (current) problem? What's that area(s) we see on the films? The options seem to be 1. intracranial pressure (i.e. swelling and fluid presence and the brain's ability inability to go back to normal size as a result of all of the trauma, or infection, or both; or 2. infection which has not been eradicated by the antibiotics, or is new and different than the one we've treated with them before, or detritus from breakdown of dead tissue and basically a pool of scabs (you're welcome).

If there is infection ON the shunt, the doctor says it will not respond to antibiotics; it will have to come out, with an external drain to replace it. Complications: possible increased/different infection introduced, healing time and potential for infection as a result of THAT process, and the external drain would be an indefinite fix ... a (VERY) gradual process of changing the speed/volume of the drain until pressure is stable and a shunt can be reinstalled. This could mean a year-long hospital stay, no joke, which has its own complications, namely EXPOSURE TO INFECTION AT THE HOSPITAL.

Also on the table would be another brain washing as before. This carries its own potential serious risks i.e. another brain surgery skin healing etc. infection etc. etc. Also mentioned has been a direct injection of antibiotics to the brain, however that has its limitations as well. I think this is kind of like three rocks and three hard places.

I came into the hospital room today to a bright, sunny room, Ian sitting up in a regular/lounge chair, eating his breakfast, smiling. At some point later on, he started to say odd things and make less sense.* I decided that we needed to talk while he still had the capacity to understand and communicate ... about these options, and what he thought about doing the most aggressive things vs. a more conservative approach, were we given the choice and he was at his current mental ability. That conversation will remain private, but it did involve tears.

Tonight doctors installed a lumbar drain, as they've done before, to lessen the excess pressure on the brain. We've had varying degrees of success with these in the past, so I'm not holding out much hope, but we'll wait and see... Unbelievably, because of this wait-and-see stance, they're talking about sending him home by Monday.

He's being volleyed back to me, to determine if things go awry enough to head back to the hospital. Oh joy.

* 1. He shouted "RELAY" into the hallway, to/at no one, because he said "there's a kid out there who isn't supposed to be there."

2. Because a nurse was reading menu options to a patient to choose from, he told me they were having a buffet out there and he wondered why?"

3. He wriggled his feet and meowed because he was playing with the cat, who he argued with me about actually being there.

4. When PT gave him directions, he agreed and then did something completely different ... and even when he seemed to hear and understand, he wasn't able to get his body to cooperate.

-- Trust me, there are rationalizations that can be made for some of these things, but that first one? NO WIGGLE ROOM. He's not right. He's not tired, he's confused.

--- "He seems okay to me," is something you'd likely say if you saw him ... the man uses $5 words. He has a manner about him that exudes confidence and health. But HIS BRAIN IS BEING SQUEEZED SO BIZARRE STUFF COMES OUT OF HIS MOUTH. Just because he describes something using "multitude" and "numerous" and "exceeding" doesn't mean he's not telling you about credit cards and rain coats ?!? (which he did, tonight).


  1. Don't know what to say. We are praying. Always here for you.

  2. Wow. It certainly seems like the language area in the brain is one of the major affected areas. BUT......the intelligence is still there.....not his fault the brain is screwing up the ability to get the words out right, or the right words out, whichever it is. My heart bleeds for both of you. He's NOT crazy. . This is real physical anomalies going on, and the dudes at the hospital have their work cut out to find out just where the problems are and how to get at the places to be fixed. I wouldn't be a brain surgeon for all the tea in China. Love you.....praying, praying, and praying again.
    Becky E.

  3. I'm praying you guys get out Monday. Being at home is probably more comfortable.

  4. I don't want to sound like I know anything all...but some of the things that you say he is saying reminds me of when my mom had a UTI. Could it be something more simple like that causing the confusion? Maybe they could take a sample just to check??? Still praying...

  5. Lord, please place your healing hands on Ian and strengthen Rachel at this time. Ian and Rachel are such a wonderful couple and you know the plans you have for them, plans for wholeness not evil, to give them a future with hope. Come Holy Spirit and touch these wonderful children of you. I ask these prayers in you Name, Amen

  6. Dear Rachel, Please know that I keep you, Ian, and the children in my prayers regularly. You're gutsy and I appreciate your honesty in dealing with these issues and letting others know about them. May God wrap his arms around you and hold you close and strengthen you.