Time line cont.

Tuesday 11/22/2011- Rion woke up in ICU after a night of not much sleep. I met with Dr. Walpert (neurosurgeon)  early that morning and she did a basic exam to test his neurological functions- he was able to recall and speak the names of objects that she pointed at (watch, earrings, nose) but he did not remember meeting her from the day before. It was evident he was having some memory loss but nothing extreme. In fact, Dr. Walpert's "test" to make sure he was ok to move from ICU to a regular room was asking him what my birthday was- month, day year... he passed with flying colors (which thrilled me because he has been known to get the year wrong even when he hasn't had a seizure the day before LOL.) The dr explained that our options were to either biopsy the tumor to see what we were dealing with and then decide how to treat it or to forego the biopsy and go straight to surgery. She cautioned that removing it would be major surgery and perhaps a biopsy would be a better way to start treatment. She still did not want to schedule the biopsy yet as the neurologist (Dr. Morris) would still need to review the EEG from the night before and determine if Rion was still having seizures (often the seizures are so small they are not observed but never the less he needed to be seizure free before doing biopsy or surgery.) We scheduled the follow up meeting for November 29th which would allow us to monitor Rion, think about our plan of action for treatment and brain storm any questions we wanted her to answer. Additionally it allowed her and her staff to get through the Thanksgiving holiday and come back refreshed and clear headed and ready to tackle the tumor.

Dr. Morris came to see Rion in the ICU shortly after Dr. Walpert left and he agreed that the EEG monitors could be removed since Rion had not had a visible seizure during the night. This was a huge relief because the EEG was connected in what looked like 20 places to his hair, ears and chest and the cap they had placed on his head to hold the monitors on kept slipping down over his eyes. The technician took one taped on electrode off Rion's chest (which Rion clearly did NOT like) and after that we let Rion remove all of the tape himself- which was probably easier on him and everyone around him : )  Dr. Morris also cleared Rion to be moved out of ICU but as a precaution it was agreed that he needed to stay in the hospital one more night.

Rion was moved right around lunch time out of ICU and to a room in the neuroscience ward of the hospital. I know it was lunch time because there was a mix up and his lunch when to ICU while he was being moved to the regular room. A VERY nice nurse brought his food down to him once the mix up was realized instead of waiting to call a tech or someone to bring it to us. Unfortunately it didn't matter how quickly the food got there, we soon realized that Rion had zero interest in eating and instead preferred to sleep. A combination of the physical/mental stress of having a seizure plus starting the Keppra which causes extreme drowsiness, and we spent all day Tuesday trying to keep Rion awake long enough to do anything. Mid afternoon I was able to help him take a shower which I am sure felt amazing after not having one for almost 2 days. The eating never improved though and it was difficult to watch him sit up to eat, take a few bites and then push his food away because he was simply too tired to even chew his food. I had hoped he would get better rest Tuesday night and wake up feeling refreshed but i was sadly disappointed.

Around bed time Tuesday night Rion started having back pain. (a little history for those that don't know- Rion has struggled with a bad back from the past 5 years. He has degenerative disks which are aggravated from lying down and especially from laying on soft surfaces.) He took 2 Tylenol before going to sleep but from my cot next to his bed, I could hear him tossing and turning all night trying to get comfortable. I still don't know who had a more uncomfortable bed that night, but I do know that neither of us got much sleep.

Wednesday 11/23/2011- I finally had enough trying to sleep on the cot and got up around 5:30. We managed to catch the nurse coming in to check Rion's vitals and asked her for some more Tylenol since he was in worse pain that he had been the night before. After getting the medication, I left to get some fresh air for a few hours and hoped that he would be able to sleep a little longer. When I came back around 8:00 Rion was awake and very much in pain. While waiting for the nurse to come, his breakfast came and he was at least able to take a few bites of everything on his plate. This was much improvement over the day before when he had only taken a few bites all day long. After breakfast the pain was becoming unbearable so we paged for the nurse to come so we could ask her for something stronger than Tylenol. It took an hour or so, but finally Rion was given a stronger pain killer and able to get some relief. He was staying awake for longer lengths of time and actually wanted to get up and sit in the chair next to the bed or on the window ledge where he could look outside.

We knew we were ready to go home but before we could be discharged Rion had to be cleared by the hospital doctor (MD) as well as by Dr. Morris (neurologist.) We passed the time by watching TV and Rion napped on and off. His speech was still improving but he was still struggling to get the words to come out coherently. Additionally, it was very tiring for him to speak because he now had to think up each and every word he wanted to use before he could even try to speak them. Dr. Morris came in before noon and cleared Rion to go home however we would also need to follow up with his office the following week to make sure his medication levels looked good and to discuss the management of his seizures in more detail. Dr. Morris and Dr. Walpert would be working as a team- Dr. Walpert treating the tumor and Dr. Morris managing the seizures and any other neurological side effects from the tumor. We were able to schedule our follow up with Dr. Morris the same day as our appointment with Dr. Walpert so we would only have to make 1 trip back to Athens.

I was starving at this point and ran down to the cafeteria to have lunch; unfortunately this is also when the hospital doctor, a speech therapist and lunch came to Rion. He is able to remember most of what happened though- the hospital doctor said he was healthy enough to go home, the speech therapist confirmed his speech problems were totally neurological and therefore could not be helped with therapy, and Rion managed to eat a good deal of his lunch. I don't think I missed anything too important but it was still annoying that everything happened in that 20 minutes after I had sat in the room all morning.

It didn't take more than an hour or so for the nurse to come with our discharge papers and to remove Rion's last remaining IV (which he helped with since he wasn't about to let anyone pull tape off of him again!) We left the hospital mid afternoon and after a brief stop at his work, we made it home early evening. The journey home wore him out so much that he walked straight in the house and climbed in the bed which is where he stayed for most of the day.
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That is the whole story of seizure/hospital experience. I am hoping to do one more post today that will recap the 2 doctor appointments that we had this Tuesday 11/28 with Dr. Morris and Dr. Walpert. The main thing to know right now is that:

1) Rion's EEG did show seizure activity while he was in ICU so there is a risk of him having another seizure. He can not drive for at least 6 months (GA state law) and he can not do anything which would elevate the chance of him being injured if he were to have a seizure- no climbing ladders, getting on the roof, swimming, taking baths, operating heavy machinery (including our lawn mower,) cooking over the stove, etc.

2.) We gave decided not to do the biopsy because the bottom line is that the tumor needs to come out, regardless whether it is malignant or benign. Dr. Walpert felt that because his surgery is so risky we need to seek out the best treatment available.  She is referring us to Duke University and the chief of neurosurgery Dr. Allan Friedman. We are currently waiting for a call from them to determine what the next steps are.