BLOG ENTRY TWENTY
Wednesday August 20, 2008
Blog 20: Update on Tia for August 20, 2008
8/21/08 05:03 am

Blog 20: For Wed 08/20/08 - Very Long Post

Blog 20: Bear with me, tonight's post is long.

I have a few updates and comments before getting to today's news:

First, I really need to say another thank you to everyone who has sent me comments, letters, encouragement, prayers, good wishes, oragami cranes and blue lava lamps :-) I'm grateful for the sheer number of people keeping in touch, keeping encouragement going, and especially for still reading every post. Thank you, all, even if I don't get the time to reply personally to you, I read every single word every one of you writes, and that is a lifeline that is irreplaceable and one that I am constantly grateful for. Thank you.

Second, if you want to reach me by email, please send your emails to jetcultir at gmail dot com. I rarely have the time to check and empty my regular email boxes right now, and I've been told that they're bouncing from being too full. I managed to empty them tonight, but it would help if you just use the gmail address right now.

Third, for those who expressed their concerns about my prescription theft, my doctor's office sent me a new prescription today along with their sympathies, so that problem will be shortly solved.

Fourth, for those who expressed their concerns about my legal situation and pending surgery, I am in touch with my lawyer and that will be dealt with as I can manage the time for it.

Fifth, I'm sorry Rob, I'm a very distracted person. I called today and didn't have the presence of mind to wish you a happy birthday, which was simply unforgivable - so Happy Birthday! Sorry I lost track.

Sixth, today there was a Channel 7 camera man standing on the sidewalk across Parkman Street, facing the Mass General entrance, all day. And do you know why he was there? His job, simply was to stand there all day, with his camera, in case anyone cool or important came to visit the Red Sox player there in the hospital. That's it - he just watched the door all day in case there was someone 'important' to film. I told him if he wanted to cover some REAL news, he should take his camera up to Blake 18 and put Mattie's story on the TV so people don't forget that an 11 year old boy was paralyzed and nobody cares. No, of course he didn't listen, but still.... and we wonder why TV is inane ...

Now for today's (and some of yesterday's) news.

Yesterday I had a private conference with one of Tia's neurosurgeons. He showed me all the MRI's and talked to me about what we could realistically expect. It was better then I thought, but still scary. It seems that they hadn't given me all the information available - she had TWO strokes while on the floor of White 12, not one. One was a tiny stroke in the midbrain, as I've discussed before, and the other was a second tiny stroke in the medulla. Only the first in the cerebellum was major, but that isn't a terribly sensitive area - it controls balance and equillibrium as I've said before, which was why she was so terribly dizzy. He does feel that she will be able to overcome this part of the stoke damage and walk and such again, but it will take months of rehab and a lot of work to do so.

The stroke in the midbrain, as I discussed in Blog 14, damaged the neural centers that tell the optic muscles how to move and direct the eyes. This is what lets both your eyes look at the same thing at the same time, so the two images get processed in your brain to give you depth perception. Those neural centers in the midbrain were severely damaged, and he says that there is little hope for any recovery there. He says her vision is blurred or doubled, at best, and she will likely be best off using an eye patch or something to block one of the two images so that she can see things clearly. There isn't anything wrong with the images themselves, or her vision (any more then there already was with the ongoing deterioration of her vision from diabetes) but she can only make sense out of one image at a time and so we will have to find a solution to block the other one.

The last tiny stoke is in the medulla oblongata, and this one is very frightening. The stroke itself is very tiny, but any damage in any area of the brainstem is dangerous because it is such a vital and densely functional area.

To help you understand, this is from the wikipedia entry on the medulla oblongata:

The medulla oblongata is the lower portion of the brainstem. It deals with autonomic functions, such as breathing and blood pressure. The cardiac center is the part of the medulla oblongata responsible for controlling the heart rate.

The medulla oblongata controls autonomic functions, and relays nerve signals between the brain and spinal cord. It is also responsible for controlling several major points and autonomic functions of the body:

* respiration (via dorsal respiratory group and ventral respiratory group)
* blood pressure
* swallowing
* vomiting
* defecation

Right now, Tia is breathing on her own. She has a trach which is connected to a vent, however the vent is set on minor support only, and the support is triggered by her own breathing, so the respiratory centers of the medulla were not completely damaged. From the list, however, her blood pressure is running high, even on meds to control it. They still do not know if she has the autonomic functions to "protect her airway" - which means the nerve functions that let you clear your throat, cough, swallow and vomit. Those controls may have been damaged - we don't know yet. It is a very tricky part of the brain to predict recovery in. There is a possibility that those areas were damaged, but that it is not permanent damage - we simply don't know yet. They also tell me that she hasn't had a bowel movement in over 24 hours, but they are giving her medication to try to help her. Everything was working a few days ago, which is after the second set of strokes, but there is something I learned today that is a type of radiating damage, and to get into that, let me explain what happened today.

Today, the Neuro ICU decided that her main problem was respiratory, so the transferred her to the Bigelow Acute Respiratory Care ward. We went in to see her just after she was settled in the new ward, but it was very discouraging. She has started running a fever over 101, and they are looking for the source of the infection, waiting on a number of cultures in the lab to give them an indication of what the cause of the fever is. She seemed a lot less responsive, not as able to follow commands, or squeeze hands, or really register who was there in the room. I *think* she tried to focus on my face, which isn't wishful thinking as she squinted one eye shut and peered at me very intently with the other, but she wasn't able to respond to anything I asked except for 'open your eyes'. Seeing her so much less responsive was more then a little scary, but I met all her new nurses and made sure they knew all about her - who she was, how much she meant to so many people, what she liked and didn't like - I showed them the poster and made them read it. I don't want her to be the stroke victim in room 8 - I want her to be a real and needed person with a loving family to them.

So, I finally managed to corner one of her new doctors and sit him down for a talk. The news was a little grim. He says, from a respiratory standpoint, that it is likely that she'll need respiratory support for a 'long time'. Even after she gets out of the hospital, she'll probably still require the trach, and she'll need to have her bi-pap machine hooked up to the trach at night. He said that besides the sleep apnea, she also has a respiratory syndrome that is commonly seen in overweight patients. Basically, it is that the body has to fight to expand the lungs against the extra pressure and body weight, and that eventually the body learns to adapt to higher levels of carbon dioxide in the blood. He called this obesity hypoventilation syndrome, also known as Pickwickian syndrome, which (according to wikipidia) is:

the combination of obesity, falling oxygen levels in blood (hypoxia) during sleep and increasing carbon dioxide levels (hypercapnia); this is the result of hypoventilation (excessively slow or shallow breathing) during sleep. Obstructive sleep apnea is often but not necessarily present. It may cause dyspnea (difficulty breathing), poor sleep with daytime tiredness, leg swelling and various other symptoms. The main treatments are weight loss and nocturnal ventilation (with CPAP or related methods). The exact cause is unknown. Most people with OHS have concurrent obstructive sleep apnea, a condition characterized by snoring, brief episodes of apnea (cessation of breathing) during the night, interrupted sleep and excessive daytime sleepiness. In OHS, sleepiness may be worsened by elevated blood levels of carbon dioxide, which causes drowsiness ("CO2 narcosis"). Other symptoms present in both conditions are depression, hypertension (high blood pressure) that is difficult to control with medication and headaches occurring in the morning. Blurring of vision and visual obscurations may result from papilledema (swelling of the optic disc) in response to the raised carbon dioxide levels. The low oxygen and elevated carbon dioxide levels lead to excessive strain on the right side of the heart, known as "cor pulmonale". Symptoms of this disorder include edema (swelling) of the legs, decreased exercise tolerance, ascites (accumulation of fluid in the abdominal cavity) and exertional chest pain.

I asked him how long she was likely to be in the Acute Care ward. While he was unwilling, and due to all the various possibly complications unable, to give me an estimate, when asked if we were talking about day, weeks, months, a year, etc, his answer was probably weeks. I told him of my concerns, that she was less responsive then she'd been in the ICU, that she seemed much worse now. He said that she was having a bit of a down turn, and had a few factors that might be responsible. First, the move from ward to ward he said was probably very tiring and had an effect. And, while they had d/c'd the sedative, she had been given ativan for any anxiety during the move, which would take some time to get out of her system. Also, with the fever at 101, she was probably experiencing the kind of out of it most people have when sick and running a fever. Lastly, though, he made sure to let me know that this could be related to the second strokes. He discussed with me something that I was not aware of before. He told me that in the days following a stroke, sometimes there is peripheral damage to the area that the stroke was in, he called this penumbral radiation (I think that's what he said). Basically, while there is a specific area that is damaged by a stroke, the areas around it can experience lessened perfusion and exhibit some signs of damage. This is not necessarily permanent, but can cause some setbacks for a while. Her last Cat scan, taken in the ICU, didn't show any new damage or bleeds, which is good, but this radiating stroke effect could be responsible for some part of her apparent down turn.

For those of you with the desire to understand the medical details, look here http://en.wikipedia.org/wiki/Stroke
The entries on ISCHEMIC STROKE due to THROMBOSIS are relevant, and what I am discussing above is in the section on Pathophysiology referring to ischemic penumbra:
"Due to collateral circulation, within the region of brain tissue affected by ischemia there is a spectrum of severity. Thus, part of the tissue may immediately die while other parts may only be injured and could potentially recover. The ischemia area where tissue might recover is referred to as the ischemic penumbra."

She is also at risk for a number of complications, from further infection to further stroke to cardiac complications due to her blood pressure and weight. They have a strong course of antibiotics fighting the infection problems, and she is on an aggressive regimen of blood thinners to prevent further stroke, so while she is at a significant risk of further stroke, everything that can be done to prevent it currently is being done. While there is not immediate nor strongly indicated problem with her heart, we have to be aware that there could be an issue there as well. The body is an intricate and tightly woven machine with complex interactions. Once one system is damaged and out of kilter with the rest of the body, it does have an overall effect on all the other related systems. There are a lot of possible complications, and he took the time to make sure that I was aware of what some of the more serious results could be, but right now I think I prefer to hang on to faith and hope and just continue to pray that she pulls out of this. Realistically, she is in fairly serious condition, and while things can go either way right now, there is a good chance that she can recover from most of this reasonably well.

Over the next few days, information about the infection and fever, the wearing off of the ativan and any pain medications, and her settling down into the new ward may provide a better picture, so keep the prayers and good wishes and encouraging letters coming and hopefully there will be some better news soon.

* Current Mood: worried

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