Transfusion Day

Today, our team of doctors is stymied. They simply cannot figure out what is going on with Him, and I suspect that they are having some fairly heated doctor conversations about what to do with Him -- some arguing more aggressive approaches, and others advocating for restraint and patience. It seems that the latest x-rays are still showing some distension of the small intestine, and that could indicate another obstruction -- although the CT scan didn't show anything to be concerned about in that way.

But He continues to have significant nausea, and while He is having bowel movements, they are very watery and, this morning, essentially clear. Without being able to get a fix on what is happening, our doctors are opting for keeping the nasal tube in place. None of us are anxious to have to have that re-inserted again, so there's no sense of urgency to get it out before it is really time.

Another concern is that His blood counts, both red cells and white cells are low, and they can't figure out why. There is no blood in His stools; no blood in His vomit; no obvious hematomas that are not accounted for and entirely expected as a result of the surgery. Still, the counts are low.

So, today, He is receiving two units of blood. So far, that is going well. We are aware of the risks of transfusion, but we just don't feel likf there are good options.

swan

Alligators

I remember that during my college years, we were fond of telling one another that "when you are up to your ass in alligators, it is difficult to remember that you were originally trying to drain the swamp."

That is kind of the way this is beginning to feel... A swamp full of alligators, and it is probably alligator mating season. The alligators (problems and challenges) are big and they are all over the place -- refusing to stay in their own separate little ponds.

This morning, after a very difficult and miserable night, "crazy" doctor Hamid came bursting into the room well before the sun was up. The good (but crazy) Dr. Hamid (who we think might be the head resident) seems to have a penchant for drama, and a lack of gentleness in terms of his approach. Looking at Master's chart, I guess he decided that he was, "worried." He ordered another CT scan with contrast, and stood in the middle of Master's hospital room talking about the potential for another yet more surgery. And then, he swept out of the room to go spread terror and chaos somewhere else. At least I am guessing that's where he was headed.

Master and I were shocked, frightened, left with a million questions. We huddled next to each other in the pre-dawn chill and darkness, and held each other's hands, barely daring to breathe.

The nurses came in and put the contrast solution through the NG tube, and they told us that the people from the radiology department would be up to get Him in about 20 minutes. An hour and forty-five minutes later, after battling for well over an hour to keep the contrast down in spite of severe nausea, they finally came to get Him. He was gone for a very long time it seemed.

We were told that "as soon as the doctors had a chance to review the results of the CT scan, they would be in to talk to us." It was over two hours when our nurse finally called someone to see what she could find out for us.

It turns out that the CT scan doesn't show anything alarming. Just the ileus that we already are dealing with. There is no additional blockage, and no internal bleeding. Blood work shows that His blood count is low, but is holding steady. We still have not seen a doctor as I write this at 2:20 in the afternoon.

Master is still struggling with nausea, although it may be some better this afternoon. He is feeling tired and stressed and frightened. He has been incredibly strong and very brave in the face of a major surgery, and some wickedly nasty procedures.

Right now, we are daring to hope that a couple of days will resolve the ileus and He'll start to feel better. I know and believe that we WILL be heading home together sometime in the next few days... if only we can stay out of the clutches of all the many alligators.

swan

Ileus

Today has been a very difficult day.
Yesterday, the naso-gastric tube to Master's stomach fell out. The doctors had contemplated taking it out anyway, but it came out entirely on its own. That seemed like a good thing at the time, and during the balance of the day, they removed the catheter. This morning, they discontinued the IV pain medication, and He was allowed to begin taking clear liquids by mouth. By mid-day, He was begining to belch, hiccup, and vomit up significant quantities of liquid. The nurses tried administering a couple of different nausea medications along with Nexium. Those medications helped for very short periods of time, but each time, the vomiting resumed within the hour.
Finally, at about 9:00 this evening, the night nurse decided to call in the doctors, and they ordered some x-rays. That showed an ileus. An ileus is a paralysis of the bowel -- without the normal peristalsis, nothing passes through the digestive tract and pressure builds up in the stomach. It seems that this is a fairly common aftermath of handling the bowel during abdominal surgery.
Sigh.
So. Tonight, they have reinserted the naso-gastric tube. Once it was in place, the pump immediately suctioned 700 cc's of fluid from His stomach. He is disappointed as this will surely keep Him in the hospital for another 2-4 days. On the upside, He is not vomiting anymore, and we didn't end up going home without anyone knowing about this issue -- a sure recipe for making another midnight run to the emergency room.
He's tired. I'm tired. Our spirits are a bit low. Hopefully, soon, we'll be able to settle down for the night and try and sleep. Hopefully, tomorrow will be a bit better.
swan

Update

I am home tonight. T is staying at the hospital with Master.
Today, He's made a bit of progress. His breathing seems less congested. He is in pain, of course, but that is kept tolerable with medication. He took two walks today; a short one in the morning, just before I hade to leave, and a much longer one this evening with T. He still has tubes sprouting everywhere: drains, catheters, naso-gastric tube, oxygen, IV... Moving Him or changing His position or bathing Him is a sincere challenge. But. Today. There. Was. A. Bit. Of. Progress.

And that is good. Tomorrow, maybe, some of those tubes may become unnecessary. Tomorrow, hopefully, He'll hurt less. Tomorrow, He'll be one day closer to being healed and well again.

I, and We, are so very grateful for all your good wishes. Thank you. All.

And now, I am off to try and get a night's sleep.

swan

Your Thoughts, Friends

Today, November 23, is the eight month anniversary of Master and T's surgeries.

Last evening, about 9:00, Master began complaining that His stomach hurt. And then it hurt worse... and worse... and worse. Finally, we decided to head to the emergency room, arriving there at about 11:00 after a very harrowing drive (during which I had to pull off the road to allow Him to vomit at least three different times). They did two CT scans -- one at midnight, and a second one at 4:00 AM with contrast. At 5:00 this morning, they got Him situated in a room. And at about 7 AM, the doctors decided that He needed emergency surgery to correct an obstruction in His bowel. Apparently, this is another of those rare (less than 1% of cases) complications.

He is in surgery as I type. I've come home to shower, grab some clothes for both of us, and rescue my car out of the repair shop where I dropped it last evening so it could have an oil change. This is the very worst possible timing for such a horrible catastrophe to occur. There is the end of the year stuff with His agency, holidays are upon us, I have parent-teacher conferences for the next three days.

We'll all get through this somehow, but please hold us all (and especially Master) in your thoughts these next few days.

swan

Why Would A Doctor Be That Way?

In one week, we will mark the 8 month point post weight loss surgery. T has lost almost 80 pounds and Master has lost 130 pounds. It has been hard work, and it has sometimes been very scary. The success they have achieved at this point feels really good and they are justifiably proud of the accomplishment. It is amazing and wonderful.



There are a variety of challenges, for all of us, as we continue to work our way along the path to learning to live long term with the changes that have come about as a result of the surgery. We deal with the daily demand for paying close attention to what we eat, to making sure that they get enough hydration and the appropriate vitamin and mineral supplements. We count grams of protein, and we watch out for carbohydrates and fats. Master, especially, works hard to make the time for the very important exercise component of the new lifestyle we've adopted. We are very, very, very careful and serious about the health regimen this change has brought into our lives.



So, why is it, I wonder that we occasionally encounter healthcare professionals who seem hell-bent on raining on the parade? Take last night, for example... He had developed a skin irritation around His nose. It had started earlier in the week as some flakiness and dryness, and had steadily spread and grown more serious. By the time I got home late Friday afternoon, there was a half moon shaped area below His nose that was angry red, swollen, puffy, just on the verge of blistered. It was so much more extreme than it had been that morning, that I was alarmed. I had visions of it becoming even more widespread and inflamed as the night wore on -- and I was worried that He'd be miserable at 2 AM. So, I talked Him into going to a local urgent care facility to have it looked at.



We got there, got checked in, went through the preliminary workup with the nurse, and waited for the doctor. She eventually came into the examination room, and very tentattively looked over the irritation on His face. Deciding that it was likely some sort of contact allergic reaction, she suggested that she could prescribe some prednisone that would probably resolve the problem. One thing we have to be careful of since the surgery is the size of pills. His narrowed stomach opening cannot handle pills bigger than a small button -- so we asked her how big the pills would be. When she looked taken aback by the question, He explained about His gastric bypass surgery, and then described to her the kind of success He's had.



She got a sort of sour faced pouty look, and said, "I see lots of patients who have had that. After a year or two, they stretch their stomachs and gain it all back."



What?!?!?!?!?!?



What is wrong with her? What is wrong with the segment of the medical profession that are so negative and pessimistic with us regarding this surgery and the aftermath? I know, and we know, that it is possible to undermine and defeat the impact of the surgery. We were thoroughly briefed on the risks and issues before we made the decision to move forward. WE KNOW!!!



What is the upside, from the standpoint of a physician, to negating and dismissing a patient's success in this endeavor? Why would a doctor do that? Why wouldn't a doctor look at a patient who has been very successful after weight loss surgery, and congratulate that person? Why wouldn't a doctor, celebrate the success, and offer good wishes for continued health and wellness? Why?



I think this tendency for doctors to act as nay sayers is very odd, and it is beginning to make me angry. I know that there may be some controversy about the longterm health benefits and risks associated with this surgery... but when you are looking at a patient who has ALREADY HAD THE SURGERY, it is too late to suggest that it might be a bad idea. It is a done deal! Get a clue, Doc! Where there is success, recognize it; acknowledge it; move on. Whatever the future might bring, no doctor can predict. Save your skepticism and negativity for some inconsequential, non-medical something or another in your personal life. Leave it out of the exam room.



swan

NO MORE SLEEP APNEA!

I've not used my Bi-Pap machine since mid-September in that there was anticipation my weight loss had ended my sleep apnea, but there had to be a final definitive test to determine that. Last Tuesday night I had to stay at the Sleep Center for an over night sleep study. I really hate those, and am glad it is past.

Today I met with my sleep specialist and the news was wonderful! My sleep apnea no longer exists. I will not have to sleep with a Bi-Pap machine again so long as I remain as healthy as I am now.

The weight loss this surgery has enabled me to achieve has eliminated my sleep apnea. Anyone want to buy a used sleep apnea machine?

All the best,

Tom

Go confidently in the direction of your dreams. Live the life you've imagined.

A Typical Day's Menu

Selkie asked what a typical day's menu might be like on this new regimen. Tom and Teresa eat somewhat differently due to the differences in their surgical procedures. However, since the part that is probably most "amazing" about this last seven months is Tom's 130 pound weight loss, here's His usual daily meal plan:

BREAKFAST --
Milk shake (1 scoop of fat free, sugar free ice cream, 1/2 cup of skim milk, 2 scoops of chocolate flavored protein powder)
Coffee with chocolate protein powder
Crystal Lite Orange drink with Emergen-C vitamin supplement
Liquid Calcium supplement

LUNCH--
High protein power bar (peanut butter and chocolate flavor)
CarbMaster (high protein) yogurt
Hummus
Wheat Thins 5-grain crackers
Jello sugar free pudding cup

DINNER --
Some sort of protein source (meat is generally difficult, but fish works and so does a meat substitute product made by Quorn which is really very good)
Sometimes we supplement with a bit of fruit or some vegetables. Applesauce works well, winter squash is good, mashed potatoes go well... Other vegetables seem very problematic.
In the last couple of weeks, Tom has been able to add a small (very small) glass of wine sometimes.