Sent: Tue, Jun 7, 2011 9:03 pm
Subject: Cavin Update Day 31

Hello all,
I am sorry I haven’t updated you for such a long time… Things started getting pretty hairy last Wednesday (one week after he was transferred out of ICU) and I have been at full tilt ever since. I have had a chance to have some conversations with some of you and know that the news has been passed on to many if not most of you but since the news is dynamic I thought I’d go ahead and recap.

Per my email titled Cavin day 19, Cavin was moved out of Surgical ICU to a step down surgical floor where he spent several days free of all tubes and IV’s. Ammon left the next day (Thursday before Memorial Day weekend)

He was on a pureed diet because he couldn’t manage thin liquids without danger of aspirating, and I bought a Magic Bullet blender and would purchase soups to puree as gravy for the unrecognizable diet they were feeding him. I would also make him chocolate chip cookie shakes and thickened fruit smoothies. Life was good …. he was diligent in doing his “Aaron tailored” physical therapy exercises to strengthen his left side and was making great strides. Memorial day weekend he was pretty emotionally regressed and wanted me to hold him, massage him, sing to him, talk to him etc. He had some visitors who were really important to him, but he couldn’t handle much stimulation from the outside for too long.

His cognitive abilities continued to amaze me…. Though I’m sure that when he’s fully assessed at TBI rehab, they’ll find areas where new neural connections need to be established, but on the whole, he has long and short term memory, is language and context appropriate, and as sweet and charming and gracious as he can be!!

On the Wednesday following Memorial day he had some visitors and I took the opportunity to get a mani/pedi. I was text messaged by one of his visitors that he was having breathing problems. When I got back to the hospital they questioned me about asthma and I told them that he had episodes of inaudible wheezing (though you could hear it through a stethoscope) when he was a small child, that was brought on by upper respiratory illnesses. They would treat that with Alupent syrup prophylactically and he never developed an asthmatic condition. One time while camping in Utah when he was 8 yrs old he did have a breathing episode and we had to drive him 50 miles to the nearest town in the middle of the night for a nebulizing treatment. From then on he had a rescue inhaler that he took on camping trips and rarely ever used. But from that history they decided that since he had the pneumonia and MRSA that he might be having some asthma now. They put him on nebulizing treatments of Albuterol every four hours for the next few days.

Thursday he had a barium swallow study done to make sure that nothing was being aspirated when he ate. It was discovered that he still couldn’t take in thin liquids. After the test he told me that he felt weird and panicky. I chalked it up to the distress of the test and asked them to write an order for some anti anxiety meds in case he needed them. The breathing attacks continued in a vicious cycle …hard to distinguish whether the breathing difficulties brought on panic attacks, or vice versa. Thursday night he had a bad episode and they gave him albuterol and racemic epinephrine to open everything and then gave him some ativan. He calmed down and slept. Meanwhile, we were in process of trying to get him transferred to Mt Sinai TBI rehab Friday or Monday.

He texted me in the middle of the night saying “help mama” – I called the nurse’s station and they had given him another ativan and he was resting. Friday I arrived to find him in a full blown panic…. telling me, “something’s wrong mom… I just don’t feel right” …. I stayed with him all day and late into the night working with him on his breathing and breathing treatments and his anxiety.

Saturday he was fine when I arrived, but by 4pm he started getting funky… everything hurt, he didn’t feel good, his breathing was not right etc. The nurse kept calling for a Dr. A resident took a look at him and gave him a breathing treatment and told him that all his vitals were fine and that he needed to calm down. By now, nothing was working, and all the docs were down in the Trauma Unit ER – it was NYC Queens on a Saturday night.

The nursing supervisor came by and told us that he needed to be medically cleared and then she was going to call for a Psych consult. He was going wild and was unconsolable. That same resident from earlier came by and was writing orders for blood work and a chest xray when the chief resident showed up, saw his condition and ordered an emergency intubation. Within 15 minutes he was sedated and tubed and taken up to the respiratory ICU. It was now midnight. I stayed there til 2 am making sure he was stable and then had to go pack up his room on the third floor (all 6 shopping bags of it) and haul it downstairs to catch a cab back to the hotel. I had notified Ammon at about 10pm Colorado time that Cavin was being intubated and he caught a 1:00 am redeye.

He arrived Sunday morning at about 8 am….. we went to the hospital and they told us that they were going to need to do a tracheostomy on him…. it was the safest way to assess what his problem was. His chest xray was clear, so he hadn’t aspirated anything, but given his TBI, they didn’t know if there was a neurological problem or a physiological explanation for his situation. That way they could give him an airway and do further tests without having such a large open airway from intubation. We were so saddened by this news, but accepted it. We left at about 5:30 and collapsed for a 13 hour sleep.

Monday there was a rotation of new residents, etc. During rounds they discovered that his tube was not airtight and so we arrived to a whole team of doctors re-intubating him. We were horrified. While they did so, they did a brochoscopy and discovered that he had a situation of tracheal stenosis. This is a narrowing of the windpipe from scar tissue, usually caused by prolonged intubation. It appeared to have narrowed 3cm of his windpipe to the diameter of a drinking straw and was too far down for a tracheostomy to open his pipe below the damage, so now that was out of the question.

The next step was to get a CT scan of his throat so that they could make sure they had tubed him below the stenosis and to be able to assess the level of damage to determine what the options were for treatment. Apparently there are 3 options….. a stent, laser cauterization and removal of the scar tissue, or trachea re-sectioning. The head Dr. there (Dr. Shah) told us that he has been working with a Dr. Wiser at Mt Sinai for the past two years and has a lot of respect and faith in him; he’s a real specialist at these kinds of rare situations. So Dr Shah was going to show the CT scans to Dr Wiser over at Mt Sinai and get his opinion and see if he would do the required procedure. He was hoping to schedule the scan that day, but they weren’t able to assemble the team it takes to move a patient on life support down to get a CT scan so it would have to wait until Tuesday.

That brings us to today. They did perform the scan and it verified that he does in fact have a significant blockage which will require some serious procedure to be done. They will meet with the ENT team at Elmhurst Hospital where he is now, to discuss treatment options and whether it is beyond their team’s level of comfort and scope of expertise. I made it clear that we would prefer him to be transferred to Mt Sinai to Dr. Wiser…. we’ll see if that can be worked out….. there are some political and bureaucratic issues involved, but this Dr Shah seems to have a lot of diplomatic skills. Tomorrow we will have more information as to the plan they have in mind.

For now Cavin is breathing safely and comfortably and is in a medically induced coma so he does no further damage through movement of that tube. Hopefully we’ll get through this hurdle with a little more grace than it took to diagnose it. It has been days of terror…. but at least we now have an understanding and full picture of the imminent problem.

Thank you all so much for your prayers and love and concern during this very difficult time. And again, I apologize for leaving so many of you hanging with bits and pieces of information….. but that’s about all I’ve been getting…. one minute, one hour, one day at a time.

I hope this isn’t too much information…. I don’t know what to include or leave out to suit each person’s individual preferences for TMI, so you’re getting the full monty!!

I know your love and prayers have had such an impact on bringing him this far…. hopefully the next few days will bring some resolution so we can get back on track to treating all the other issues.

I hope you all are safe and well.

Love
Kris

On June 4th, 2011, I was unable to breathe and was put into an induced coma and reintubated (put on life support) after my 12-day initial coma that began on May 8th, 2011. I could have died if the residents kept on giving me asthma treatments and anti anxiety drugs instead of intubating me. My mom was not sure if the breathing problems were causing anxiety or if the anxiety was causing breathing problems, but the chief resident took one look at me and could immediately tell that it was the former. I could not breathe!

I was using accessory muscles to bring air into my body, meaning that I was using my abdomen, shoulders, and chest muscles to attempt to breathe and it was very taxing and tiring. Anybody would panic if they could not breathe… And they should. You would be pretty anxious, too, if you could not breathe! Do not throw anti anxiety drugs at someone who cannot breathe! To this day, it is unbelievable to me that the resident said that I just needed to calm down! Anxiety was obviously a symptom of a much bigger problem… Not the main problem!

My mother says the chief resident took a minute or two to teach the other residents who were evidently not educated enough to at least make a life threatening situation a priority! Apparently he was pissed that a resident that he sent up to me did not notify him of my life threatening condition. Instead, that resident was busy scheduling me for a chest X-ray the next morning. I probably would have been dead by morning, and the chest X-ray would not have shown the blockage, because the blockage was in my trachea due to scar tissue from a tracheal stenosis that, I can only guess, was due to the scar tissue created by the many inubation and extubation attempts coupled with lung suctioning to get the blood and vomit out of my lungs.

The next day they attempted to replace the emergency intubation and properly intubate me. My dad says that when he arrived at the hospital there were a bunch of people were working on intubating me because there was a space where air was escaping. This took a team to figure out and, when my dad arrived, he got a dirty look from the doctors and nurses working on me and the curtain drawn on him, so that he could not see them work, during the incident.

I am guessing that this incident, as well as what led up to it, certainly exacerbated the damage to my brain because I could not breathe, and my brain needed oxygen. My left hand and foot really became bent all the way after this episode. It appears that I had some movement in my left wrist in early videos, but almost none after this incident.

I was now in a coma while they tried to think of the right course to take. They scheduled a tracheostomy for June 10th. Propofol was the anesthesia that was used to put me into an induced, emergency coma. While intubated and in an induced coma on Propofol, my heart rate slowed down to the high 30s. While under, a throat doctor scoped my throat and the doctor reported that I had a subglotic stenosis in my trachea 2 cm below my vocal chords. A stenosis is an occluded, or partially blocked, section of a passageway. In this case, my throat. It meant that I was breathing though a passageway no wider than that of a drinking straw.

I think that it is important for modern medicine to treat anxiety as a symptom of a larger problem rather than throwing anti-anxiety drugs at their patients and treating the anxiety as if it were the main problem. Lives are too important to make this mistake again.