My Day

So we left at 11:30 am for 2 appts in NYC. One was suppose to be at 2pm with Dr. Gutin and the other at 4:00pm with Dr. Selesnick. We barely made it in time for Dr. Gutin (21/2 hours for 1 hour drive). He saw me for 5 minutes and said that he is discharging me and that I should do all of my follow ups with Selesnick now. When I asked how and what they closed my skull with after the surgery he said probably titanium but that Selesnick did that so I should ask him. I also asked what was causing the sunburn type pain to my torso and again he guessed it could be nerve root pain.
After the appt with Dr. Gutin me and my hubby went to get a bite to eat. I checked my messages and there was one from Dr. Selesnicks nurse saying that he could not make appt today but I needed to continue on with audiologist anyway. WHAT??!! They forgot to tell me about 3rd appt for the day. SO we had to sit around till 4:30pm until that one. And guess what......she told me I am deaf in right ear...NO REALLY!!!!

So I guess Dr. Selesnick will call within the next few days. I still do not have return to work date, disability paperwork signed or answers to my questions. SO we drove over 6 hours to say goodbye to neurosurgeon and to have another hearing test that could have been done at home.

At least they have good shopping down here!!!

Here I go again......

So I am packing again!!! I think that their should be people you can hire that will pack and unpack you for trips. To be honest we never actually fully unpacked from our last trip 10 days ago...I mean whats the purpose.

Hopefully I will find out some answers to my questions and get the sutures out of my back!!

NYC here I come again.......

Well we are once again getting ready to leave for the good 'ole NYC tomorrow for my Wednesday follow up. It started as an exciting idea to travel into NYC and now its getting to be a bit too much travel for this girl!

PAIN

OK so now I have started with a sunburn type pain on my right front and back. No rash or redness just constant pain when I touch the area or move it. Most likely related to nerves but ever so annoying.

We have been getting bills trickling in from Sloan for the first week I was in the hospital. So far they do not want any money yet but want to let us know how much they are sending to insurance. Any guesses on the amount so far?






$62,500.00 Holy crap---this is only for the surgery time spent in the hospital. Can you imagine if I decided to go with the other surgeon and hospital that was not covered by my insurance!!!! I am thinking by the time this is done my insurance could have purchased a nice house for what they are paying out!!! It will be interesting to see how much they charge for the week in ICU with beefed up nurses.

whats your excuse?

So today started calling to coordinate my follow up appointment with the two surgeons. Still not done. Feeling a little better everyday. I even ventured out and went food shopping yesterday. My hubby is the best and has really been helping out alot!



I found this book online and thought that the title was funny.....every senior/ blond moment I have now I will have a viable excuse.....
Maybe I will have have a t-shirt made up!!

There really is no place like home........

We made it.....I got to sleep in my own bed last night for the first time in over 3 weeks. (and no Ann C. this does not mean I can come back to work yet)

My follow up is on the 27th. Yes I still have to go back there again.

Side effects seen now:
Hair loss--probably from the anesthesia and the decadron after ---it is comming out in large clumps now----I am glad I started with alot
Soreness- my back still is a bit sore from the "ice pick"
Head- muscles still sore in my neck but all in all getting better
Wobbliness- still here---but getting better

Home

I am back in NJ. We are leaving in the am for home!!!! Even though my in-laws are the best it's still being HOME!!

Recap of my week: Alot of laying around and watching tv. I guess I was sort of forced to take it easy this time. I must say that I did see the nurses alot alot this time. Probably because they had orders to come tap me hourly. I did end up with my own room for a week and yes the food was not that bad this time. I really need to be careful of what I am typing om my "magic blog" now. Everything I complained about I had to re-live.

New outlook---I am happy to be alive and out of the hospital. ME=GOOD

Nah nah nah nah...Nah nah nah nah..Hey hey hey..Goodbye sloan kettering....On my way back to jersey now...Stiches in my sore back from the catheter coming out......Cannot wait to see my daughter.

Well heart monitor is off and spinal cath is capped. A few more hours of being dry and they will pull it. Still praying for no leaks today(or ever)that would send me into another surgery. Today really has to be my DDAY!(DRY DAY)

So another 24 hours being tapped. Still no leaks. I have been up walking and even shoved this melon in a sink today. I am so looking forward to getting this spinal catheter out tomorrow. Dr gutin came in today and i tried to talk him into pulling it this evening but he just laughed and stated "bitch bitch bitch" and laughed. Its like he knows me.

Its me.....I am stilll in icu getting tapped hourly. So far no further leaking. So if all goes well they will pull cath out on fri and i will be discharged over the weekend. I really cant tell you how homesick i am. Almost going to be a month gone and half of that away from family. The nurses on this unit are wonderful but once the drain is out then i will be transferred back to the other unit.I hope we do not have any more setbacks and its smooth sailing. Feel free to leave text on my cell...I have lots of free time right now. Miss you all.

From Patty's FB Posting....via Phone

"Is in icu till at least friday. If i leak again then have to have my melon reopened. Dry thoughts for me or i will be stuck in nyc."

Not sure yet....

For you FB users you already read her status....but here is for those of you that do not.

She will be in ICU for at least another four days, and if things do not progress as they hope she may have to have her "melon" opened up again.

I tried calling to find out more so she will call back when she is able. Until then I do not have to why's of it all!

Brigg


UPDATE:
The doctor said that it is not common for this to happen so far into post-op, but this is Patty and if it will go wrong it will happen to her! (no really thats her luck).
They will monitor her and if all goes as expected she will be released, otherwise they will have to operate to find and repair the leak. But they are very hopeful!

Just spoke with Patty...her spirits are up and she is dealing the best a person can. She started leaking fluid through her nose again so they up'ed her draining. She is every hour at 15cc's at the moment. (Ken misinformed us before, it was always every hour, not every three).

They will try to taper it down again tomorrow and see where it goes from there.

Her headaches come and go of course, but again she sounds good......
although she refers to her situation as being "tapped like a keg" lol, and is happy that she had a chance to have her toes done so that she has something pretty to look at, thats our girl!

Send all good thoughts her way and wish that she can come home to us soon!!

Briggette

Hi everyone!
As you have read or heard our girl is back in ICU. They warned her that this might happen so she was prepared, not happy of course, but prepared. Her words…”they stuck a very large catheter in her back and not the happy epidural kind you get when you have a baby”. They are draining her CSF (Cerebrospinal fluid (CSF), Liquor cerebrospinalis, is a clear bodily fluid that occupies the subarachnoid space and the ventricular system around and inside the brain. Essentially, the brain "floats" in it.) Sounding pretty smart aren't I (thanks to Wikipedia)
So..
A nurse is going in about every three hours and draining 10cc. to help relieve the pressure. Which of course will cause a major headache. Hopefully she will be released at some point tomorrow (Tuesday).
I will update again when I get more info, or Patty will if she gets the chance.

Briggette

I am back inn icu at sloan kettring. I noticed some clear fluid pour out of my nose for most of the part yesterday so i called the resident on call for dr gutin. So now i am here for a few days with a large catheter in my spine and nurses draining it every one hour. I will try to update when i can. Happy moms day.

Ouch..I woke up today with

Ouch..I woke up today with a feeling like i drank water too fast..Then later today myright nostril started dripping. Back to nyc now to check

Saturday

Well it has been 12 days past surgery. I am so happy to be this far!!!

Today I will try my witts at getting my piggies groomed. Nothing to make a girl feel great but letting someone rub her feet.

Things are still the same. No real improvemnent except I am no longer taking the percocet for pain.

Its our week!!!

Just a reminder to hug your fellow Nurses this week. If anyone at work is still looking for gift ideas here you go:

1. POOL HEATER

2. Money is good also

More

Well today I felt more short of breath and dizzy so I didn't get a chance to go shop (therapy) the first part of the day. I tried to walk around on uneven surfaces outside to try to get my balance right again. My head seems to be losing weight everyday but maybe just not as fast as I would have wished. Theres always tomorrow!!

Side effects seen so far:

1. SSD (single sided deafness to right side--this will not change)
2. Lost of taste for anything but cold/sour
3. Left thigh still numb--not sure if its from laying for 7+ hours on that side
4. Dizzy, vertigo , head feels like its floating above me
5. Loopiness----prob the percocet though

Facial nerves all seem to be intact still....so we shall see when I will rock the rest of this!!!

Today

Well today has felt a little better on the melon than the last couple. Still have lost of muscle stretching and dizziness but if the feeling that I had a 100lb ball stuck to the outside of my head would go away I would be happy!!

I have been trying to build up my tolerance to car rides and walking by having my husband take me somewhere every day. Yesterday we went to target for 1/2 hour and today to Michael's. Gotta love it in the city when rehab has to deal solely with shopping (next surgery you have Brigg I am bringing you down!!!)

Oh and did you hear the news of tht lady in Long island that was all prepped for her brain surgery and the surgeons never showed up....I guess all my downsides with my experience I at least had my 2 surgeons show up!!!

My most annoying list!!!

Things that annoyed me while being a patient:(my personal accounts)

1. Not seeing a nurse or a Patient care tech for most of the day...a simple "hey" would have done
2. Not being offered a toothbrush, swabbette or even a washcloth for the first 48 hours--enough said!
3.People who come to visit their loved ones and then get a phone call on their cell...so instead of staying in their loved ones room they go outside of yours to make long loud phone calls...THANKS!!!(sometimes it wasn't even in English)
4. People who can't pick up the meal trays in a timely fashion...I mean 3 1/2 hours really!!
5. Nurses who tell you..."you know I only have two hands" after putting your call light on and getting ignored for over 1 1/2 hours!!!
6. Bubbly patient care techs that come in and turn the light on and expect a conversation at 1:00am---this one even tried to rearrange my room to her liking until I asked her to leave!!!
7. Having the nurse check my inciscion every day and telling me it looked great and then when I finally asked what it was held together with they thought they should turn on the light??!!!
8. You spend 5 days in bed without eating, in nausea, are vomiting and the thing that makes everyone happy is that you pooed??!!
9. Being told by the MD that you were ready to go at 8:00am but not getting to leave until after 1pm.
10. Knowing that carrying around that "nurse Gene" could make you do circles around these guys but you are too sick to show them!!!!

the next 48.......

The post below is actually first just in case you want to stay in order......

THe next 48 hours----Everyday my little surgical team would come in and check me---Open your eyes, smile, close your eyes, lift your hands, pull down on my hands, lift your feet etc etc....I guess when I realized that this was starting to annoy me thats the day I knew I was getting better. I really had no appetite until Saturday. I started eating some lite food Sat afternoon and this still continues until now. I have a very strange metallic coating in my mouth which makes it a chore to eat. I can only feel texture and can't really taste anything so whats the point.

I remain on pain meds, steroids, stool softeners, laxatives and prilosec for a few more weeks now.

Surgery Day:
Today was a bit numbing to say the least. I had to get up at 3:30am to leave by 4am. Not too much of a feat such I want allowed to shower, wear deodorant or eat.

Once we arrived it went pretty fast. Dr. Selesnick came in and said his hello's. I did not meet the anesthesia doctor like I thought I was suppose to so I wheeled into the OR drug free. Which caused much stress and I was a mess by the time I got to the room. After they got me onto their cot they immediately gave me something and about 2 minutes later put the mask on and that was it. They did not shave my head until I was already out so my husband could not give them tips! (prob a good thing)

7 hours later I guess they were done. I don't remember much. Just waking up with that feeling that you don't have your senses and things are not right. I remember allot of pain and allot of nausea. I also remember allot of throwing up. My husband waited almost 3 hours for me in recovery and they still could not get me settled so they ended up still letting him in.

My husband recalls me trying to rip everything off including the bandage to my head. I remember hearing the nurse and the aid talk about a mean mean patient doing this and in my head felt sorry for him....LMAO!!! I guess I had torn everything off and they were actually going to have to get me a sitter but I ended up settling a bit.

From what my husband recalls: They were able to get it all out. So hopefully no radiation will be needed. I was very swollen for the first few days with my head all disproportionate but that's getting better (well at least back to normal).

THE NEXT 48 HOURS
I was put on the neuro observation floor. I am not sure if the nurse/patient ratio was 1-100 or if I was just that much of a pain but I did not see the nurse or the patient care techs (nurses aids) very much. The PCT did vitals and the nurses did meds so between them both I saw someone maybe 20 minutes total a day.

Now I didn't really need much---pain and nausea meds, fresh ice and maybe a wash cloth. They work on a call system that when you push the bulb a nurse comes on a speaker and asks you what you need. Then they bring it to you so they don't have to walk down twice. The concept is good if the nurses really got the message or if they had time to bring you what you wanted. I can remember that one night that the smell of my left over dinner tray was making me nauseous so I had my husband go out and look for a cart to stick it on, which he could not find. So I then pushed my bulb and asked them to come get it.......that was at 6pm......I then pushed it again at 7pm and asked them if they forget "NO we will be in when we can'. At 9:30 pm when it was time for my vitals I made them take it with them. IT seems that they all have assignments. The IV team does IV's, the lifting team do lifting, the nurses do meds,and the PCT do the vitals. Well I guess I needed room service for the tray and they were too busy!!!!! Still a bit frustrated!

FWD:

From what I am feeling you would think this incision was wrapped around my head a few times. Its actually pretty amazing as there are no sutures or staples. It is all held together with glue. Just to think that after all of these years they are still going to the basics....whats next duct tape?? This is my incision...it is pretty bruised but I think its a very lean looking one!!!!

FWD:

Pix

Its a great day in the universe...I got to shower!!!

OK its really me again....Thanks to my sis (you know the one who is not as cute...wink wink) for keeping all of my peeps updated.

I have so much to tell you of this long journey that I have been on but just wanted to give you all an update for now.

I was released today and am now back in NJ. My follow up is not until next Monday the 11th so I think we may just e staying down here until then. I am feeling alot better today as long as I don't sit or stand or open my eyes...lol. Compared to the previous days I can see some improvement with everything so that is a plus. I will give my day to day reports in the upcomming days so stay tuned.

Please forward mail back to my home residence as I do not want to overwhelm my in laws too much. Talk to you tomorrow !!!

Day Five (sorry so late)

Sorry this is late. It was a busy day today. I called Ken's cell phone around 6 this evening and was able to talk to Patty. It was so nice to hear her voice. She said that the first two days were the worst but she feels much better today. She actually ate something today. She is hoping to get released by Monday but has to wait and see. I am sorry but I didn't ask her if she would be up to calls. I will ask her tomorrow and post it ASAP!

Thank you all for your concern and prayers for my little sister.
Love
Kelly

Day Four

Praise God!!! I just talked with Ken and Patty is doing so much better today. No tubes, hardly any pain meds and she was able to walk around a bit. Ken sounded much better today with Patty's progress. He also said that she will be in the hospital over the weekend and hopefully will be able to be released on Monday. Ken also said that Patty isn't up to any phone calls right now but would let you know when.

Thanks again for your concern for my little sister. Continue to pray that her recovery goes well.

Kelly