Blood Clots

Remember the 45 minutes of pain E. was in last night after receiving his Dilantin? Well, maybe the blood clots were part of the problem! His right arm is swollen and has some discoloration. He has complained numerous times about the pain in that arm, but it definitely hit an all-time-high last night. Anyways, this afternoon, they finally did an ultrasound on his arm and we are told there are "multiple blood clots" in his arm. We are assuming they are superficial as he was told to keep warm blankets on his arm until the doctor reviews the ultrasound in the morning. I'm not sure what can be done since he cannot take blood thinners due to his brain surgery (they won't even flush his port with Heparin which is what the usual procedure is). Hopefully the doctor will just say that the blood clots will resolve themselves. (On a positive note, E. is now taking the Dilantin in oral pill form.)

E. was able to take another stroll around the floor, even at a quicker pace than this morning. It sure zaps his energy though and he's been dozing ever since. I am going to encourage him to take an evening walk before bedtime as the physical therapist recommended getting up and walking three times a day. E.'s personal walker was also delivered this afternoon. Anyone up for a little episode of "Pimp My Walker"? Just think of the possibilities. :)

A Walk(er)

E. was able to take a lap around the entire fourth floor with his walker. His walker!!! Bwahaha! I told him I'd get him a basket for the front of it (the girls think it needs a bell too). He told me to kiss his a$$. Can you believe he would say such a thing? :) The physical therapist didn't feel like a rehab facility would be necessary either, but did think that outpatient physical therapy would be beneficial for him. As she explained to us, because of his brain surgery, where he thinks is center is not really center. He seems to be having the most trouble with his balance and physical therapy can really help with that.

The stroll did tucker him out some and he's back asleep now. Like the physical therapist explained, he is going to get exhausted quickly while he is healing. His body is using lots of energy to try to heal his brain (and his high blood sugar levels are making his body work even harder), so any extra energy expended is most likely going to exhaust him. We plan on at least a couple more strolls around the floor today.

The progress he is making is quicker than I would have ever thought. This man is amazing. (You probably already knew that.)

S.

Friday Morning (8/27) Report

The transfer to the regular room went smoothly. (Room #478 just happens to be directly across from the nurses' station. Hmmm . . . I wonder if that was a coincidence or if that is where they put all their flight risks?) About the time we got him settled, he had a hankering for cheese pizza from JJ's Pie Company. The girls quickly fulfilled his request, for if we hadn't there's no telling what the little escape artist would do. We certainly didn't want to find him shuffling down the street in his hospital gown, with his hinnie feeling the cool breeze of the night air. No sooner than they ordered the pizza, he proclaims, "A bean and cheese burrito from Jimboy's sounds really good about now." I figured by the time we got any food to the hospital, his craving would be over and he wouldn't even eat a bite. He proved us wrong! Two slices of cheese pizza went down the hatch lickity split (no beer to wash it down with though, much to his disappointment). And it never even threatened to come back up. I have a feeling that burritos will be on today's menu.

Yesterday when the hospitalist (a doctor that makes rounds for the hospital but isn't E.'s regular doctor or anything) visited, he mentioned that once E. was discharged from the hospital, he would be transferred to a rehab facility. That was the first we heard any mention of a rehab facility! E.'s regular medical oncologist visited this morning and also mentioned a rehab facility. We chatted about it a bit, and I'm really not thinking it is going to be necessary. E. is eating and drinking on his own, as well as going to the bathroom. He has great strength and movement. He is a bit wobbly on his feet, but I think that will get better each day. The plan is to get him up and walking today.

E.'s medical oncologist also reiterated how chemotherapy isn't always very effective through the "blood brain barrier." He explained that the brain really doesn't like toxins up there and does a good job keeping them out. Therefore, tumors in the brain are most often treated with radiation, although occasionally, some chemotherapy has been helpful as well. Since E. just received a clean PET/CT scan in mid-July, he doesn't feel like there are any other recurrences. We "just" have these two spots in the brain to deal with. Once again, he is willing to coordinate with E.'s doctors at MD Anderson and follow their lead, for which we are appreciative.

E. was due for pain meds again at 8:00 p.m. At 7:15 p.m., he was uncomfortable. At 7:30 p.m., even more so. His pain level kept climbing. By the time the nurse finally brought his pain meds at 8:15 p.m. (after a brusque request from me), E.'s pain level had climbed back up to an 8. Once the meds took effect, he was much more comfortable and peaceful. He's allowed to take his pain meds every four hours, but has declined each time they have been offered. It is now almost 8:00 a.m. and he has yet to need pain meds again. The best part is that his pain level has remained at a 2.

Since E. is now able to take oral medications, he is receiving his diabetes medications and his steroids (Decadron) orally. He is still having to get insulin (regular insulin during the day and long-acting insulin at night) to help balance out his crazy blood sugar levels caused by the steroids. He also receives Dilantin (an anti-seizure medication) through the IV in his wrist. I guess this medication is very caustic to the veins and burns intensely. When it was administered last night, it probably took 45 minutes for the pain to subside. E. was miserable and cursing up a storm the entire time. We are hoping he can take the Dilantin in oral form soon too, so that will no longer be a problem.

Regular Room

E. made it out of ICU and into a regular room!

He's no longer tethered to an IV pole or a monitor. He sat in a chair while he ate dinner and actually managed to get down a 1/2 of a turkey sandwich. Oh, and E. is especially proud of the fact that his plumbing is still working.

The nausea seems under control. The Vicodin is working great, but I think he needs it about an hour sooner than he can get it. That pain level climbs until it is finally time and then it takes awhile to get in the system and be effective.

The neuro surgeon visited E. in ICU right before he was transferred. He said he was pleased with E.'s progress and how everything is going. (E.'s surgeon from MD Anderson in Texas also called to check on him.)

I'm hoping he'll be able to get a good night's sleep.

(Room #478 for those who want to visit tomorrow or in the next few days.)

Afternoon Update (8/26)

The physical therapist came and E. was able to get out of bed. He's wobbly on his feet, but had good strength. He sat upright in a chair for about thirty minutes, and avoided nausea the entire time. He brushed his teeth, washed his face and got a clean gown. He even got one IV (his artial line) and his catheter removed (which is allegedly not such a pleasant experience).

E. ate a whole little container of applesauce for lunch as well as a cup of soup (well, the broth part of the vegetable soup anyways). He was then able to take some Vicodin (pills), which seems to have helped with his pain immensely. Before he fell asleep, I asked what his pain level was and he told me he wasn't having any. Yippee! He is now snoozing peacefully.

A radiation oncologist (filling in for E.'s regular radiation oncologist, as she is out of town) came to visit with us. He explained that either radio-surgery or radiation would probably be in E.'s near future. I asked about the "lifetime maximum" amount of radiation that we had frequently heard about and he clarified that different areas of the body have different lifetime maximums. So, just because E. received radiation in his esophagus and chest area doesn't mean he can't have radiation in his brain. When I inquired about chemotherapy, he said he wasn't sure because chemotherapy often has trouble breaking the "blood brain barrier," which is why E.'s previous chemo probably killed all the cancer cells in his body *except* for in the brain. He was working under the assumption that the tumors were a metastases from E.'s esophageal cancer, but that still needed to be confirmed by pathology (he returned later after checking with the pathologist and the preliminary report does confirm that, although the final report is still out). Unfortunately, he pointed out that when a cancer metastasizes to one place, it is not uncommon for it to metastasize to other places, or even come back again where it started. He sounded much like E. when he said, "I'm sorry it happened, but it's just another bump in the road." Then he added, "You just gotta roll with it."

At that, E. gave me a look that said, "I told you so."

Thursday Morning (8/26) Report

It was another "boring" night. I like boring. :)

E. was able to sleep a little bit more, which I think helps.

He's still on the Morphine because the Demerol shot can only be given every six hours, and he was needing something more for the pain after about four hours. If he can start eating, he can begin taking oral pain medication (pill form), which we are told works better to control the pain after brain surgery than IV meds. They've got his nausea under control with meds, but he hasn't eaten anything other than the 1/4 of a saltine cracker he ate yesterday.

They removed his dressings today, and WOWZA! Those staples and scars are some doozies. Good thing chicks dig scars. Or at least this chick. His right eye is pretty swollen today and turning some nice shades of black and blue. The nurse said that is very normal, and his other eye may do the same. She said all of it may get worse before it gets better.

(Not a great picture with the cell phone, but it gives you an idea.

I know you can't see it well, but there's the stapled incision in the front,

and also a matching stapled incision in the back -

which is less visible in the photo.)

The neuro surgeon's nurses were in this morning and it sounds like there is still a possibility E. will be transferred to a regular room today. Not yet sure if he'll be on the neurology or the oncology floor. If the transfer happens today, it probably won't be until later tonight though. In the meantime, we're hanging out in ICU. We have a new day nurse and I am thrilled. While I have loved the night nurses, I hope we never see yesterday's day nurse again (I'll be kind and not say anymore about that).

And that's the "boring" report for now.

Still in ICU

E.'s day in ICU was fairly uneventful. He has catnapped throughout the day. His eyes were only open for a few seconds here and there as he says the light hurts his head. He is still in severe amounts of pain, although he seems to be more inclined to push his morphine button now. His pain level has gotten as low as a 4, but seems to stay in the 5/6 area. Nausea as been a problem. He has vomited several times. Can you imagine the pain that vomiting puts on your head? Can you imagine the pain that vomiting puts on your head after brain surgery? Holy owie, batman. Since many people are sensitive to morphine, there is a possibility that is what is causing the nausea. So it sounds like they are going to remove the morphine IV and switch to giving him shots of Demerol and Phenergan in the hinnie.

The steroids were discontinued temporarily because of E.'s erratically high blood sugar levels. Because he seemed excessively tired and groggy though (thought possibly due to the swelling of the brain), the steroids were restarted. He does seem to be more alert with the steroids, but his blood sugar levels pay the price. E. is definitely coherent. He knows who all his visitors are and responds appropriately to questions. There's no question that the ole E. is still there . . . the cuss words are flying and so are the wise cracks.

The neuro surgeon finally came in at 8:30 pm. E. opened up his eyes, nodded an acknowledgement and put out his hand to shake the doctor's hand. When the doctor asked him to lift his arms and wave them in the air, E. complied. He then commented, "No dancing yet," which got a grin out of the doctor. The neuro surgeon informed us that the "CT scans were good." I asked about the grogginess, which he said was totally normal. He said that lots of rest is good right now. I inquired if E. would be transferred to a regular room tomorrow and his answer was, "We'll see how he's doing tomorrow."

Until tomorrow then . . .