Bunn’s Prairie

Check out the new link I added on the right of the photo book our friend Susan put together for Kaley.  She ordered a hard copy and we will have it at the hospital for visitors to sign if they should so wish.

Kaley breathed on her own with minimal help from the ventilator for about 4.5 hours today. They set the machine up so that she would breath at whatever rate she wanted to breath at, and if it got too low it would (i.e. 4 breaths per minute) it would change the pressure in her tube to encourage her taking a breath. She had trouble at first, then go into a rhythm of it then got tired and needed more help again. Overall this was good.

My parent’s priest visited this afternoon, he performed the sacrament of the anointing of the sick. Kaley was baptized when she was in Duluth and I think going through this right would be something she would appreciate in her time of greatest need.

Kaley continued stretching as much as she could. What I saw during the day was very good. The nurse said it was the equivalent of her exercising as she held her muscles taunt for a while. She got her heart rate going and broke a good sweat. By this evening, however, she seemed to have taken this too far and had her heart rate going at over 150 bpm (setting off all the alarms) and was pulling at her restraints so hard it looked like she was going to bruise and hurt herself. The nurse gave her some Ativan and she relaxed. We also gave her some Tylenol as they suspected that her abdomen may still be in pain and she was trying to express her pain this way. I have no idea.

Kaley seems to be tracking my voice well now. We have seen several times where she will be looking away from me and when I take her hand and talk to her she will sometimes turn her head to look at me. This is good.

I think this is the start of the long long road to recovery.  The neuro team thinks this will take weeks/months for her to recover.  Ugh.  As if the blood infection for at least 18 months wasn’t bad enough.

Firstly, Kaley is in stable condition from my last post. The neuro team says it appears that Kaley has taken a step back from yesterday, however with the bleeding this morning and the medication used that is not overly surprising. Also this will be a slow frustrating process, so be patient. I held Kaley’s hand to day and said something like “Hi Kaley, your Andy is here” and she turned her head toward my voice and appeared (according to me and Kaley’s mom) to mouth the word “hi”! Not sure but thats what it looked like.

The head of the neuro team came by and suggested that we try to limit visitors to 2 at a time and make sure that they are not just talking over them but that they are engaging her in conversation. Too many voices not speaking to her can have the effect of confusing her and frustrating her which is not what we’re going for. Visitors are still welcome, we’re just going to have to be more controlled.

They are taking my advice (vindication at last, doctors are listening to me!) and are putting in an N-G tube. Before getting the trache she had a tube from her mouth to her stomach to suction out stomach stuff and to help prevent nausea but that was pulled with the breathing tube. She still has all the same medical issues as before and the meds still make her sick, so we need to try to help that.

Onto my title topic:

Over the past 3 years I have had several people tell me what a great person I am for doing so much for Kaley and for being there for Kaley. While I appreciate the kind words, which was the intent, I’m sure.  I don’t think these people fully appreciate Kaley and my relationship with her. These sorts of statements imply that I am being magnanimous in some way and am making a sacrifice. Reality is quite the opposite. I am being as selfish of a person as I can possibly be by doing what I can to ensure that I am a part of this wonderful woman’s life. I am fully motivated by feeding my desire to be one and be with Kaley. Sure some of the things I have had to go through with Kaley has stunk, but what I got/get in return was so wonderful I would do it again in a second.

Kaley discharged about a liter of blood vaginally this morning they had to give her some blood.  This was caused by her blood thinners.  They closed the wound up again and put in something that encourages clotting in the area.  They check for this kind of thing about once an hour when they move her.  They put the trach in while they had her in the OR.  Her face is very puffy and she got some irritation on her face that will clear up with time now that the tube and harness are off.    Mom and I thought we saw it start to clear up in the hour and a half since she returned from the OR.  Maybe it was just the light. 

 I asked the nurse yesterday if she would still be considered to be in a coma.  She said no.  She said Kaley is now in a state of “neurological recovery” and this process (according to the neuro team) may take weeks and months. 

When I arrived at the hospital this morning, Kaley was sleeping peacefully.  I caressed her hand and said hello and she appeared to make a fully body and then relax back to sleep.  A little while later the neurology resident from yesterday arrived to assess Kaley.  To start, he has a very clear projecting voice which I am sure Kaley would have loved because it would not have fallen into the “white noise” category that many mens voices do.  Kaley was sleeping and he introduced himself to her and she she slowly opened her eyes to her half open-mostly glazed over look.  He was a little surprised at this.  He checked to see if her eyes would dilate when a flashlight was shined in them, he did not comment on this so I can only assume that they still did not.  He then put his finger in her hand and shook the hand and said “Kaley could you squeeze my finger as hard as you can?”  And she did.  He was surprised.  He then did the same with the second hand and she squeezed then too.  He said this was a very good improvement.  He then touched the first hand again and said “Kaley, could you move your fingers on this hand?”  And she moved them a little.  He did the same with the other hand, and then both her feet and she moved a little of bit in both hands and both feet.  He again said this was very encouraging.  He then did something with her feet and said “Kaley, close your eyes if you can you feel this?” And she did, and then went into  a coughing fit.  So we weren’t entirely sure if that was the cough starting or her intentional command.  He described that this change gave him “guarded optimism”.

Between this exam and the care conference I held her hand and moved in close and said “Kaley, it’s your Andy.  Can you squeeze my close your eyes if you understand?”  She did nothing.

At the care conference, the head of the ICU described what had happened and what his team was treating.  He said he did not know what caused the cardiac arrest, but if he had to guess he said that aspiration caused it.  He then turned the floor over to the head of the neuro team, who said in light of her receint improvements over the past 24 hours, he thought it was possibly that Kaley might over time make a full recovery back to her original baseline.   Seemed like a lot of qualifiers on that sentence, but in any case this was not what we were expecting.  We all kept looking at each other trying to see if we were in the right room!

The plan is to put a trach in tomorrow and remove the tube in her mouth (which will make her more comfortable).  Then on Saturday or so do another CT scan to help determine where and how much damage there is. The idea is basically to heal Kaley and see how far she comes back.  The kind of timeline we’re talking about is weeks and months (and I heard a nurse propose years even).

Also, it turns out that my original post that there was 20 minutes of unaccounted for time was not correct.  Evidently there is 10 minutes of unaccounted for time.  When the brain only last 8-10 minutes without oxygen that’s a huge difference.

Some of the female visitors today who hadn’t seen Kaley said they thought Kaley had better color in her cheeks and nose.  She looked more like Kaley.  Also the nurse who has been looking after Kaley in the day all week (since Sunday) said she had tried the pain test on Kaley by pinching her fingernail and had seen Kaley start to pull back in pain.