matt.fotter.com

Today's:

All, today is a GREAT day. When we saw Hank this morning, the brain drain was gone, one arm was free of IV’s, his chest and leg restraints were gone, the oxygen mask was gone although he is still receiving supplemental oxygen, and he looked relaxed and comfortable for the first time in a long time. He responded to questions and with more than yes or no. He can tell you his first and last name. We told him Ellen is coming to visit tomorrow and he said, “All that way? Wow.” He laughed a couple of times. When we were telling the nurse that we were going to paint his toenails and write Hi Dad on one foot, he started to lift himself up and said “I can’t see.” And when we asked him if he would like some ice cream, he said “Absolutely!” He may get some later today. The nurse has to be sure he is awake enough to properly swallow and he is still drifting in and out of sleep. Dr. S who is in charge of the ICU said he may move into the regular neurology section tomorrow. The decision is made based on the amount and kind of nursing care he requires. John was supposed to leave yesterday and we are very glad he waited to go until today. It is a lot easier to leave him now than before. 

Yesterday's:

Matt says this was a good day. We spoke with Dr. G, the neurosurgeon (we call him Fabio), who told us that the frozen section of the brain that was sent immediately off to the lab showed no signs of tumors or any of the other really bad things that might be causing all this. He said the lining of the brain was obviously inflamed, but the brain itself showed no problems. From his point of view, things are going well and Hank is improving. Now we just have to wait for the tests to return. Dr. B the chief of neurology told us the test for vasculitis will be back Wednesday or Thursday. Hank is getting heavy duty steroids just in case it is vasculitis but that is also helping his arthritis flare-up. (There really is no justice. Arthritis flare and today he had the hiccups.) Dr. B told us that the protein level in the fluid from his brain is under 200 (remember it was 478 on Tuesday?) and that is a sign that his body is winning the fight. The brain catheter will be removed tomorrow. They are keeping it in just in case another set of doctors wants to request another test. I had a hard time today because they had to put in a feeding tube. Hank really hasn’t eaten anything for 10 days and badly needs nourishment and refused to eat this morning. I was hoping we would only be removing tubes, not adding any. And he hated it. But, all in all, it was a good day. 

And The Day Before:

All in all, today was a good day. Started out rough. Hank had been restless all night trying to pull out the ventilator tube. So they had to keep him more sedated than they liked. By the time we arrived in the morning, he had had two failed attempts to remove the tube. Respiratory therapist wanted to keep tube in; P.A., member of neurosurgery team wanted to take it out. Chest xray showed fluid in lungs; Lasix to remove fluids. Sue and I were talking in the family room; Theron, Matt, John and Pete were in the room and suddenly the team was in. therapist saying wait. P.A. asked Hank if he wanted the tube out. Hank nodded yes. P. A. said Let’s pull it out and the next thing the guys knew it was being removed. P.A. said, “My first family extubation!”
Afterwards, Hank had an oxygen mask and a sore throat so he wasn’t talking too much. But he was alert, responding to us with nods and head shakes and the old eyebrow raise for “I don’t know.” When one of the boys said they were going to sneak in a Bass Ale for him tomorrow, he laughed. He hasn’t laughed for 7 days.
He has a drain in his head, tubes and wires all over, he hasn’t brushed his teeth in many days and his hair (what they didn’t shave off) is sticking wildly out all over his head and he looks beautiful to us. More tomorrow.

Still no diagnosis.  I got into Connecticut around midnight on Tuesday and have pretty much been at Yale New Haven since then.  I know nothing new.  I'll try and post more of Harriet's emails, but I'm trying to stay away from the computer as Googling justs adds to the stress.

It is a truly amazing sight to see how many people my father has touched and how deeply he is loved by so many.  I always known he is a great man, and it's clear to me that many share that opinion. 

So I'm pretty sure there are fanatical fans for just about every sports team out there.  Let me assure you that they have nothing on the Saints fans down here. Or in Chicago for that matter.

Wonder why?

In the long and sordid story of Hurricane Katrina, a new low may be approaching. In Louisiana alone, tens of thousands of displaced families who rely on the government to provide trailers or rent will lose their temporary housing next month — unless the Bush administration extends the standard 18-month time limit for their federal aid.

A year and a half is a long time for anything that is supposed to be transitional, as the families still trapped in cramped, flimsy trailers can testify. But the temporary help from the Federal Emergency Management Agency cannot end until the victims have somewhere else to go. And the federal and local governments have moved far too slowly in providing the necessary reconstruction money and building guidance. Hurricanes Katrina and Rita destroyed more than 200,000 homes in Louisiana, and only a small fraction have been replaced. (Neither the state nor the New Orleans city government knows how many have been completed.) A sky-high murder rate has dominated the news. The success of the Saints professional football team is not enough of a distraction.

The response to the drowning of New Orleans has been a failure on every level. President Bush’s eloquent promise in Jackson Square to rebuild “higher and better” soothed the nation. But since then there has been no concrete action plan for reconstruction — only a patchwork of programs marked by dithering, bickering and bureaucratic finger-pointing throughout. The federal response was, after great delay, largely to cut a check and let overmatched local officials try to sort it out.

The president’s Katrina czar, Donald Powell, sees his role as one of a convener, adviser and advocate rather than leader of a domestic Marshall Plan — which is what New Orleans needs. He says that local officials should take the lead. But the local reconstruction plan has yet to materialize. City officials hope that it will be out by the end of the month.

There is some local optimism that when it does arrive there will be a burst of rebuilding effort. Developers are finally beginning to break ground on apartment complexes. The city has issued more than 55,000 residential building permits since the storm, finally moving at a faster rate than before Katrina.

But the time is long past to turn from planning to action. And those in need of shelter today cannot take comfort in housing that won’t be ready for another two years. The administration must extend the temporary housing provisions immediately, then make every effort to shift aid recipients to the longer-term Section 8 voucher program.

The new Democratic leaders in Congress also need to recognize that the many failures of Hurricane Katrina are more than just another reason to criticize the president. They need to quickly outline their own plans for salvaging New Orleans, so evacuees can once again call their city home.

That New Orleans remains a shattered city is a sad monument to impotence for the most powerful country in the world. Our grand plans were never laid, our brightest minds were never assembled, our nation’s muscle and ingenuity were never brought to bear in any concerted way to overcome the crisis of the Gulf.

Today was a holding pattern. Hank slept a lot, not feeling very good in general. The CT Scan that was supposed to happen yesterday never did – somehow the doctor’s orders never made it to the CT Scan people. Doctor T re-ordered this morning. Hank asked at 7pm when he was going to the CT Scan – no order – it had been entered in the computer incorrectly. Hank’s nurse called the doctor and he straightened everything out so Hank will have the CT scan around 10pm tonight. So much for a good night’s sleep. My rule of never going into the hospital over a weekend stands. However, this is my first real complaint against the hospital in 9 days.

Dr. T told me again that he really expects the CT scan to be clear, but has to be done to eliminate the unlike possibility of paraneoplastic syndrome. So hopefully (if they actually do the CT scan!) we should have results tomorrow.

Today's update: 

Today we spoke with Dr. P (rheumatologist), Dr. E and Dr. T (neurologists) and perky Dr. X (hospitalist). The good news is that hank had another EEG and there has been no change. The iffy news is that Dr. T (called in for consult) has recommended a CT Scan of Hank’s chest and abdomen. There is a slim possibility of something called “paraneoplastic syndrome” ( I know that everyone is racing to the web – I haven’t had a chance to do that myself) – a tumor in the chest or abdomen that is somehow sending a viral attack to the brain. There may be another spinal tap following the CT Scan in order to get a comparison of his current white blood cell count and protein levels with the two previous spinal taps. At the same time, the doctors are starting to look for outside doctors and hospitals. All the tests are computerized so consultations will be done primarily electronically.

Quotes for today: Dr. X: "We are even more frustrated than you are."  Dr. P asked my sister and Hank if they watched House. He said they have the same white board and are working at things in much the same way. Dr E in response to Hank’s comment “I’ll bet you have this situation all the time.” “No, never. We usually have a diagnosis in one or two days – three at the most. It’s not any fun being an interesting case, is it?” Dr. E also said, “We will have a diagnosis and a prognosis – then we can all sleep at night.”

Hank has asked for a day without visitors – and we are giving it to him tomorrow as best we can. However, that doesn’t mean that Jane, Sue and I won’t be there. Stuff happens and someone has to be available. Hank is tired and stressed and a day to regroup will be good.

Fsck fsck fsck.  Not  what I  wanted to hear.  At all.  It's funny - I call Sis and H and hear some things and think "well that's not too bad" and then I read the exact same words a few hours later when H sends the Daily Hank and think "wow, this is just all messed up."

Needless to say, I Googled.  I'm not liking what I've read. Those fine folks at NIH seem to describe my old man exactly:

What are Paraneoplastic Syndromes?
Paraneoplastic syndromes are a group of rare degenerative disorders that are triggered by a person's immune system response to a neoplasm, or cancerous tumor. Neurologic paraneoplastic syndromes are believed to occur when cancer-fighting antibodies or white blood cells known as T cells mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older persons and are most common in persons with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to tumor detection, which can complicate diagnosis. These symptoms may include difficulty in walking and/or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo. Neurologic paraneoplastic syndromes include Lambert-Eaton myasthenic syndrome, stiff-person syndrome, encephalomyelitis (inflammation of the brain and spinal cord), myasthenia gravis, cerebellar degeneration, limbic and/or brainstem encephalitis, neuromyotonia, and opsoclonus (involving eye movement) and sensory neuropathy.

Thank you all for your good wishes. Today, as has been happening, Hank had good and bad moments. The headache that disappeared yesterday was back. I need to think long term. Hank has been moved to a private room. He had been the sole occupant of a double room and the hospital needs both beds and luckily a single room opened up. So he is in room *** at Waterbury Hospital and his phone number is 575-**** We are still waiting for some test results and he should be in the hospital through the weekend.

And yesterdays:

Folks, a quick note tonight. Hank seems much better, especially in the morning. He is having the MRI of the spine tomorrow and needs to stay in the hospital 4 more days in order to complete a full round of one anti-viral medication. He gets tired in the afternoons and sleeps a lot. But in the mornings, he is castigating Bush just as usual. Thanks for all your love and support. Jane is with me and will be spending some time with Hank so I can get to work. 

Last night Hank had headaches and vomiting again and was pretty dopey from the Demarol early in the morning. He perked up after a shower and was very chatty with Pete who stopped by for a couple of hours. Pete went with Hank to his spinal tap and they had a good conversation. But when Hank returned from the spinal tap he had to spend the next 6 hours flat on his back and life became more difficult. He vomited again around 5pm and the headache had returned.

I spoke with Dr. E early this morning and asked him about the EEG. He said he wasn’t surprised about the “slowing” that showed up – consistent with meningitis. Dr. B (no idea how to spell that – she is the new Infectious Disease doc) said the spinal tap showed higher levels of white blood cells – but not to worry. All bacterial sources have been eliminated and a slightly elevated white blood cell count is to be expected under the circumstances. The protein level had doubled and this shows that the disease is getting worse – but lab tests may lag behind the clinical situation, and Hank actually seems to be improving. George R, scientist that he is, spent some time trying to get his head around that one. Dr. B is running more tests and the results should be in tomorrow or early Thursday. Dr. B suspects a fungus – symptoms are right, but earlier test was negative. She is trying a different test and if results positive, there is a treatment that should be immediately effective. Otherwise, we are where we have been. Hank has viral encephalitis/meningitis and will get well in his own time.

And you'll find this little NSFW gem.

First piece of King Cake this year and I get the freakin' baby.  Stopping at Mandeville Bakeshop on the way home from work today…

After leaving my dad at the hospital yesterday thinking he was having a better day [and still feeling damn guilty about going] today's update from Harriet:

This email is not so easy to write. Hank has slipped back a bit – severe headaches, nausea, confusion. His overall confusion is probably the worst it has been since Thursday when he entered the hospital. No one is saying anything other than all these problems are consistent with the general diagnosis of aseptic meningitis (along with the possibility of encephalitis). I just was hoping he would get better every day.

He had another EEG today (because of the hallucinations) and in comparison with his EEG on Jan. 4 there is “some slowing.” The doctors have ordered another spinal tap tomorrow morning.

It is not going to be as easy a recovery as I would like.