TheIcelandicPrincessNewNeck2022

  Yippeee! So ready to brave the airport and then get home! We got meds, plan for CT in May in Santa Rosa to be then sent to Dr. N before she leaves for India.  No actual shampoo/shower until a month out! April 13th basically. Ongoing dressing changes.  The sutures are the dissolving type and she expects some to pucker. God forbid that there would be a mar in my scar! I have to stay off of Celebrex for 3 months unless I can find any articles that would allow me to take it earlier.  (Will research; this will make a big deal of the joint issues with the rest of my body.)   She will also give me photos of my innards and my weird bones up there after that. Just wondered how it looked to look at… Since the fascia is “shredded” (and not in a good way like really buff).    Was able to eat an excellent and healthy almond flour brownie with tea this afternoon.  I can slowly gum it down when there is a will there is a way! At least I did not have to use the...

  This is not good news.   Do not accept any koolaide from this saint. He asked for a list of people who were praising him but don’t worry b/c I didn’t tell.   This is what happens.   I warned you all.    

  Ok. You TELL me you wouldn’t start itching if all of these Orkin trucks were right outside your hotel?  They were parked at the neighboring hotel but there were 50! (I asked Phil and it WAS 50 I am not exaggerating for a change).  I saw an Orkin guy surreptitiously (?) walk into our hotel.  Well. Then I thought. NO. They must have a regional training or something.  I asked Phil did he feel any bites?  (I used to have my assistant check for the bedbug reports before she ever set up my trips.) Nope. It turned out to be yes a training.  Would they really use everybody in the region to treat our hotel? Unlikely.   We do not have bites.  Do not worry. We go to the doc this AM to find out if I can travel etc.   Also will have photos I hope.   Prior to that I have to warn people that if they keep on praising Phil re: his bandages then I am unsure what we will be able to do with him! PLUS the people here are constantly praising him. “Oh i...

  First of all Philip thanks you for all of your judgments about his awesome surgical dressings. He likes knowing that his excellence is noted.(If all the nursing students were this much of a diva I think the professors would go mad!)  I can hardly believe it is two weeks post op! I still sometimes wake up and think I am still awaiting surgery….likely this will be one of those PTSD type things.  Also I will get back to the good Kaiser docs when I feel up to it. And like say “Hey if you knew how to do the correct diagnostics when someone’s head is falling off,  you could likely make more $$ fixing it!” No actually I will tell my favorite docs what the correct diagnostics said and also what the EDS docs here did to repair it. They were so anxious that I get care and I am sure they will want to learn from this. Pain is slowly getting better.  It is definitely better than the immediate post op suffocating pain.  Swallowing:  I worked pretty hard on swallow...

Phil wants me to post his dressing job. I think I should post the photo on the fridge. Sigh.    Here I am thinking: Had I posted every dressing I ever did over 50 years as a nurse  (Of course against HIPAA) it would be quite the album! And here comes my thought for the day (and honestly after we are done with doc visit and get home I won’t constantly post here! ppl would be so so bored!) but I was thinking yesterday how often during the last 50 years I would have given anything to have a few days to just read frivolous fun novels and/or watch flix that I like (maybe even a Hallmark Holiday Movie out of season!) and I would be so excited that it is a vacation! And now just because I have a big incision in my skull and neck and I have to retrain my swallowing and my walking endurance I am a whiner! Right? So if we see this as a vacay in MD (It is too cold here for my taste even though the cherry blossoms were gorgeous) it is a very different viewpoint and feeling.  I a...

I am truly finally doing better at night.  I even slept through an alarm (I am known to do this….)  so I can wait and make times longer between meds.   I am still and eternally will be SO RELIEVED that there is no longer a giant with huge vices squeezing my head.  He is gone forever I HOPE.  This current pain is surgical, muscles and nerves cut, etc. I am swallowing better although I think learning how to work effectively with the swallow incoordination will take time. I an trying to get soft thick liquids down which is working.   Thanks again to Susan for the soups and treats!  In 2 days it will be 2 weeks since surgery! I am just so so glad it is done. With BA2 rising it could have been another full hospital and. No beds again.   I had lovely darling nurses (all but one) and they were so helpful! And the entire surgical team has been wonderful. It is good to know that SOMEWHERE in the US medical personnel know about hEDS!  Phil is perfectin...

 

What does one do when it’s unclear how to get a person to consume nutritious food b/c of swallowing incoordination?  BUY A NEW APPLIANCE! Yessiree.  In fact Costco (which is close to the hotel) has a Hand Blender which could blend the soups etc so I can swallow them by using a straw! Philip went out and located this hand blender which will also be useful back at home. I myself am mostly sleeping or reading with short indoor walks. The muscle spasms are bad enough that I really cannot forego the meds for them even though I get loopy and sleepy. Have not been seeing any whales or dolphins like I did when on Flexeril and morphine though, I am happy to say. Phil has been shopping for groceries, doing laundry, dishes, etc. Luckily he is OK being at the hotel quietly!  Have to go take another nap! Don’t worry I am forcing myself to drink fluids, walk, do the incentive spirometer, eat as much as I can, all those recovery tasks.   

Hi everyone! Well good news for EDS pts in the future; at least East Coast people, because Dr. Narayanan used us as grand rounds to discuss the issues and the repair. She will give us some photos next week.  I am glad to help in any way!   I learned also yesterday that I DO have to set alarms to be sure I don’t go over the worst of the pain level.   Feeling some some more comfortable.  Pat L helped “dry shampoo” my stinky sticky locks until I can wash it (Thank you Pat!).  Also thank you all for your solidarity! I know at times people cannot post on here but don’t worry you will be able to tell me later that you are with me! It will be quite a slog as many nerves and muscles will need to try to relearn patterns.  We know it is gorgeous and warm back home and hoping we finally get rain! The SOCK say I am smiling (Whether or not I am….)! This princess’s nutrition:  It is not uncommon for people with this surgery to have to relearn how to swallow and to h...

  Ok OK! I know I know I know. I am a nurse and I know better.  Just take the meds.  Also.  For those having trouble making comments I do not know why it is harder for some to make comments.   I of course believe each of your days hinges on my bog updates (😂) so i know in my heart you are following.  Don’t worry am not judgy at this moment. We Here on the East Coast are cooking up healing and that is about as much as I can come up with.  If I can get some dry shampoo into my various lengths of hanks of hair it will be a stellar day! 

One more step closer to being better! One week post op plus first visit to doc for stitches; only had to deal with temporary removal of Phil’s excellent and expert dressing then Dr. Naranayan took out the drain staples which I appreciated since they are pretty biting into ones’ back. Has been rough with the post op pain/nausea management which is normal anyway with a surgery such as this.  I have to actually set an alarm and be my own night nurse so I don’t let the pain get beyond the point that it takes so much time and half the day to get it back to a reasonable point. However on the good side was that when I was up at 0330 trying to get pain control closer to being able to sleep, I started my high school classmate’s book (Julie Selbo’s Piazza Carousel) and it is really great! Thanks Pat L for bringing this for me! It was just right at 0330 when watching CNN would not be.   Tomorrow we will attempt to get some of the blood/surgical mess out of my remaining hair with dry sham...

  So it was post op day 6 if I can still count (Which may be iffy) and rough night. Up most of the night and never comfortable enough except to fall into a rapid deep sleep for about a 1/2hr.  Tried to get medications correctly to get this under control.  Decided I must use the ketorolac. So using my pharmicist’s instruction I tried to shove enough liquid/thicks down my gullet to be able to take the pills. Not fun and very nauseated but the zofran and a trusty chemo aromatherapy helped.  Finally got the pain to a reasonable point and slept much of the day. Quick dressing change (everything  looks good for tomorrow’s meeting w Dr. N.) and took a couple laps down the hall.  Susan brought lovely home made pudding which was the only thing I could eat to get those pills down! Thank you! Phew! So just think good thoughts about a quiet comfortable night!  Oh and our friend Barbara (*Auntie Zorra to some of you!) sent a lovely cowbell for me to use to get Phil...

  Dr, Phil’s dressing job And here is what we do to figure out new hairstyles with multiple levels!  edgy! Just wait. 

Phil has now tested his surgical nursing practical by changing my dressing. He did a great job!  I am mostly able to sleep, slurp down a smoothie then go back to sleep.   It will be a slow and steady unlike my usual “do it now!” View of time.    Here is a photo of the back of my head:   Now expertly redressed by Phil PharmD. I hope this is not too upsetting for ppl b/c being a nurse I don’t get that whole issue so Just Look AWAY if too scarey..  really because it is just healing very nicely,

 YIPPEEEEEE!! SO HAPPY TO BE OUT OF THE HOSPITAL WITH IT’S CODES AD BELLS AND BEEPS AND BACK TO QUIET AND RESTFUL NAPS A THE HOMEWOOD SUITES! The only thing I miss abt the hospital is the wonderful adaptability for the Hill Rom beds and of course my adorable caregivers!  Phil and I got finally discharged in the PM and were exhausted Just by the process. We are now at eight calls between Walgreens and us re; our meds and trying to get something I need that I didn’t have from CA. Sigh.   However I do think it is some easier for me to swallow anything and to use my voice; still using a straw and liquids or thicks.  I do think my overall dizziness is less than prior to surgery already even at this weakened state. There are chunks of skin sores etc  on various parts of skull so that they could pull my head up and out laterally, get the Chiari reduced and to fuse the base of the skull so that there is not ongoing slippage onto the vasculature in the area such as verte...

  Well.Finally HERSELF is able to at least type enough to update you. Yesterday we waited to be discharged as per plan and yet I had too much drainage to be able to take out the drains.  And we have just now been getting a regular pain program that works even thru the multiple sets of issues due to what is in their formulary.  They had not been giving me some meds and as we decided to try very low does flexeril do? OK THAT gives me hallucinations and I observed to PHil that dolphins and whales are coming out of the ocean…..He was a bit worried.  I also pointed out the gas exchange coming out of the top of furniture.  I didn’t realize I said it w my outside voice.  I suspect the combo of the meds with break through pain being treated by 2 of morphine could have been the culprit.  Also as always I make observations of the hospital systems. I note Nurses do shift hand off at the bedside along side their aides. Their report board is very similar to those w...

  Greetings, I promised a short and boring post today, and I’m living up to my promise! Ruth is now having a “normal” postoperative course, with pain and nausea, but at an expected level. The nurse asked her this morning what her pain level was, and Ruth said not too bad… about 5 or 6. The nurse said, “5 or 6 is pretty bad!” But Ruth has been at a pain level 8 or 9 constantly for the past several months, so everything is relative! Ruth is coming back to the hotel tomorrow, and we will spend 2 weeks in the hotel before flying back to SFO. (Follow-up visit with neurosurgeon right before we return to CA.) Ruth is on a clear liquid diet, and she pointed out to the neurosurgeon that vodka is a clear liquid. But the surgeon didn’t buy it! What a spoilsport!  By the way, when Ruth observed that the worst part of this whole thing was the prospect of eating Phil’s cooking for 2 weeks, I knew she was feeling better! Hoping for another short and boring post tomorrow! Thanks so much for a...

  Greetings Earthlings,  Things are much better today compared to yesterday afternoon and night! Ruth has been moved from Post Anesthetic Care to a bed on the Acute Care bed. Her neurosurgeon was here, and personally took Ruth for a short walk. She is a fantastic surgeon—one of the top 2 or 3 people in the world for surgery on Ehlers-Danlos patients, yet she is very humble and has a great sense of humor.  Last night at the PACU was pretty grim. Ruth spent several hours at a pain level of 10 out of 10. And Ruth has spent the last several months at a constant pain 8 or 9 out of 10, so she knows about pain. Also severe nausea, and her low oxygen monitor alarm kept going off when her O2 regularly got down to the low 80s. And she was babbling incoherently. I was pretty worried when I left at midnight, but her nurse was fantastic and she said I had to get some rest (and she would be watching Ruth like a hawk)!  THIS PS from Ruth: Couldn't get them to hear me b/c I could ba...

Yes!!! Just talked to the neurosurgeon, and everything went great! It took a full 4.5 hours, and Ruth has all kinds of plates, rods, and screws in her neck and skull. But the neurosurgeon is very happy with how it went. I was starting to get quite nervous, because they said 3 to 4 hours, and when it hit 4.5 hours I was wondering if something went wrong. But just then I saw the neurosurgeon arrive. She did say that Ruth has a very unique vertebrae that she had never seen before. Ruth will like that… it means she is special!  Phil

 Greetings Earthlings, This is Phil trying out the Blog. (Ruthie gave me a tutorial last night!) She has been in surgery for about 2 hours, and it will probably be 2 to 3 more hours of surgery. (They have to remove part of her skull (in the back) to make room for her humongous brain (as she puts it) and then install the plate that screws into her skull to attach rods to her cervical vertebrae. So it’s pretty complex. Ruth made friends with all the nurses, etc. and asked her neurosurgeon if she had plenty of coffee. I heard the neurosurgeon tell Ruth that Ruth had to assess the nursing practice at the hospital and write a report. Ruth said she would be happy to! I’ll send more information in a few hours when I know more. 

We will arrive at the hospital at 0600 (0300 Pacific).  We are a GO HOUSTON and I hope WW3 (selfishly) can wait another day although pretty sure Putin will wreak more deaths in that day. And also I am selfishly glad to have gotten this scheduled in between the 3rd and upcoming 4th wave of the pandemic (this next one will be the BA2 which is the omicron mutant baby. Feeling a little sorry for the little bastard since I too am a mutant although it spreads way faster and we don’t know how severe really….) So I hope nothing gets in the way of this surgery.  I think THIS is the right timing. At least it will be a Step One and a big big one at that.  We figured 4 hours at least for surgery; 2 hours at least PACU, then depending on room availability it will be mid afternoon at earliest before I get to a room.  Not ICU unless things go awry.  Thanks everyone for their prayers, thoughts, whatever good you send toward us. Thank you to friend Susan who made deliciously hea...

 I promise not to use any Nietzsche quotes in this blog.

This GI Splatter Art is directly over the toilet.  We only stay in the most gorgeous digs!   The Pentagon in the background as we flew into DC. Beautiful chilly sun cast on remaining snow. Flying over the mountain ranges to see the breadbasket of the midwest.  Too bad the West Coast is behind on EDS medicine.   

 We made it to DC!!! Finally. OVER A YEAR OF WAITING FOR getting me fixed to “normal.” (HAHA that will never happen!) Lovely funny pilot etc but the variation of altitude on the plane was excruciating. I really hope for the last time.  But I am so effing miserable. We got here, luggage intact, NEGATIVE COVID PCRS! YAY!    BUT! On the rental car bus, which we took b/c it was too cold for me to sit (no outside seating,  outside the freezing cold and Ruthie Irene CA gal left her gloves and head wrap in the luggage b/c it was 75 at home.) PACKED with PPL.  Everywhere in airport mask wearing was required.  Big tall very well-dressed guy manspreading across two seats in bus when there were no seats. I had to sit by him. No mask.  I said pleasantly “WHoops! You forgot to put your mask back on after being outside!” He says “No I did not, are we required to here?”  Everyone else has masks on and are staring at him.  I said, “yes, out of resp...

  March 12, 2022   Up at 0340 (0240 internally b/c it is “Daylight Savings Dark as Hell Morning”) and off to airport.  “Dark as the inside of a cow” as Grandpapa used to say, and foggy too as we drive into SF dawn. Decided it was much cheaper to take a town car into SFO than driving and parking, and none of our friends have good eyes for inside-of-cow driving on glazed streets and/or comfortable cars for me at this moment.    As one of you said; the marathon toward a better life begins. We got our PCRs yesterday PM and we await the results.     The never-lying CVS pharmacist (#2 after nurses in Most Trusted Profession) told us results would be in 24-48 hours so one hopes they did not screw it up.    How to read the blog:  I have been telling ppl to read the blog for details and ppl do not know how to read Blogger. (SHEESH. I forgot.)   You hit the link to the blog and look to the right, left, or upper (Depen...