Day 8……. The Results Are Not In

Unknown Ailment

My day started off as the last three days have started off. Did not sleep well. Woke up in the middle of the night with a 100-101 temperature range. Felt terrible with flu-like sickness, but no body aches. Jaw pain 1-2. Headache pain is 4-6. Throat pain, especially when swallowing is 7-8. I always thought that when you were sick and rested, you felt better when you woke up….Not so here.

In the middle of the night I could not sleep and it actually felt better to sit up for awhile. We searched WebMD and read up on flu symptoms and strep throat symptoms (as I previously reported) and I met many of the strep throat symptoms and few of the flu symptoms. I don’t know if that is good or bad.

Armed with my symptoms, we met with Dr. Li at 9:00 today and discussed the current problem. He looked down my nose into my throat with a video scope. He said the nose, mouth and throat are in pristine condition with no signs of infection. My recovery from his surgery is still progressing flawlessly. If it was not for this unknown medical condition, I likely would be dancing in the street and more importantly on my knees thanking God (I am still doing that).

Dr. Li thinks it is either the flu, strep throat, or some type of cold bug. To check one more thing, he ordered a chest x-ray which we did immediately at another location. It came back negative for pneumonia so again I am thankful. He also gave me a prescription for an antibiotic which may or may not help. I well be taking amoxicillin every 8 hours. If I have a bacterial infection it will reduce the time I am contagious so that is good.

So I am into my third or fourth day of this Unknown aliment. Everyone is telling me 5-7 days recovery. We just picked up some Children’s Tylenol, so I am alternating this with the Children’s Ibuprofen every 5 hours.


Recovery from MMA Surgery

This is Day 8. It’s been just over a week since my surgery. Everything has gone well. As mentioned above a scope of the area looks great. Pain is very minimal. We will know on Monday if my rubber bands will be loosened to a quarter inch opening or so. My menu of food intake should change since with no opening between the teeth I am currently limited to liquids strained to illuminate any small solids.

A funny story……. During surgery, one of my side tooth’s (a dental implant tooth) fell out from its anchored metal root. An easy fix once my jaw gets back in shape in hopefully 3 months. Well I have found that drinking these yogurt protein shakes and other blended-strained soups that are someone thick go done much easier from my right side of my mouth (where my tooth is missing). Thank you Lord.

I am still icing the chin and jaws 4-5 times a day for 30 minutes. I have lost 10 lbs without trying. Half is probably due to the ailment. I have stopped using the wedge pillow. I lie flat on my back with my normal pillow. That is a good reflection on my airway opening and stretching of my soft pallet.

I doubt I will have much more to report on my MMA surgery recovery until I can get this Unknown ailment eradicated.

Recovering After MMA Surgery… The Good, the Bad, and the Ugly

Introduction

I want to get caught up to real time reporting, so I will discuss Days 3-7 of recovery here and now. Then on my next posting you will be hearing the current situation, status and condition.

We are staying at a Marriot Residence Inn just 5 miles from the Hospital and 6 miles from Dr. Li’s office. These Residence Inns are fantastic. We have a kitchen, living area and bedroom all in one with plenty of space. Mary has complimented the room and its design several times….. That’s a good sign.

I have to say, my sleep, my surgery pain, my numbness (or lack of numbness), energy level and feeling rested have not changed much in the past 5 days (except where noted below).

The refrigerator is full of Gatorade, Ensure, apple juice, cranberry-pomegranate juice, prune juice (it worked), beef & chicken broth, turkey gravy, and whole milk (my wife hasn’t allowed me to drink whole milk in the last 20 years – she has weaned me down to no-fat milk).

I came home to the hotel with three medications. I had a prescription filled for Hydrocodone (pain killer) and Cephalexin (antibiotic). I also bought Children’s Liquid Ibuprofen. It is very difficult to find liquid over the counter pain medication for adults.


The Good

My wife is fantastic. She is an angel provided by God. I know I was difficult to live with before surgery and all the stress, but she has stood by me and taken care of me just like I was one of her grandchildren (and we all know how loving and caring she is with the grand children (we have six and two on the way).

I have to make a comment about sleep, since after all that is why I am here and you are reading this. From day one out of surgery, I have noticed a dramatic change in my sleep. I fall asleep immediately into a deep sleep and stay in that deep sleep throughout the night until woken up. I have long, detailed dreams. It has been a peaceful sleep. I wake up and say to myself, no, no I want to go back to sleep. I missed this sleep so much. That being said, I have to say I do not wake up refreshed and energetic. That will come. But it is definitely a good start.

The Pain, the Pain……I am blessed again. My wife and I and by the way we communicate by hand signals, white board and a steno pad (thanks Sharon) have developed three categories of where pain comes from. The jaws, the headaches, and the throat. Arch bars have not bothered me at all…another good news.

My pain levels have ranged from the beginning (Day 1) to now (Day 8) as:
Jaws: 3-5
Headaches: 3-6
Throat: 2-8

Basically my jaw pain was minimal and I went off the Hydrocodone by day six. I used the children’s ibuprofen to take care of the headaches. I thought this might be caffeine withdrawal but I have been having a morning half of cup of coffee (from a regular ceramic coffee cup) for the past four mornings and they have not gotten better (see The Ugly).

The throat is a major issue (see The Ugly). No pain meds seem to help.

Have you noticed there is a lot of good!


The Bad

Getting that peaceful deep sleep is wonderful, but I am not refreshed. I have described it like being at the gas pump and filling the tank. I keep filling it (with good sleep) and yet it never gets full. The gas pump keeps pumping but it is a bottomless tank (right now).

I can’t eat anything at the huge buffet breakfast they have every morning nor anything at the evening snack/dinner/happy hour (One night I did take two sips of a light beer).
The Children’s Liquid Ibuprofen is the worst tasting medicine I have ever taken. It also burns as you swallow it down.

Dr. Li informed us that he wants to keep my teeth wired (rubber banded) closed for two weeks rather than the normal one week. After one week he usually loosens the rubber bands from completely closed to open about a quarter inch. He said he wants the complete closure for an extra week because my jaw bones were somewhat thin. I won’t (or maybe I will) tell Dr. Li I am willing to keep them completely closed for three weeks if that means a stronger bond and a better outcome. As all of you post and MMA patients know, that means just liquids no soft foods into the mouth and on to the stomach.


The Ugly

I have been having a temperature on and off for the past several days ranging from 100 to 102. It appears and disappears throughout the day and night. I have to say I feel terrible most of the time. My sleep is very fragmented because of my temperature and feeling lousy. When I go to swallow the pain is up to 8 &9 on the pain scale. We saw Dr. Li on Monday (Day 7) and I was not doing too bad at the time. He said to call him anytime and he will see me on Wednesday (Day 9).

Well like it always is when you go to the doctor, I started feeling a lot worst that evening and the next day. I emailed him and he called back. I gave him the low down and he thinks it may be the flu. Mary researched on WebMD. My symptoms match strep throat and not the flu. I have had both the H1N1 and regular flu shots and I have not had the flu in over 10 years.

I have to tell you I feel miserable so keep up the prayers. I see Dr. Li this morning. I will post after the appointment.

God Bless you all,

John

Day Two and Three After MMA Surgery

Introduction

Before I get started on my complaint, I want to update you on how I am feeling from my surgery. No good sleep for 15 years; add major surgery to your jaw which is like trying to stop a speeding truck with your face; and no sleep at all for the past 36 hours; I have to say: I am very… very… very tired, but I am excited about my future. The big news is I have feeling and little to no numbness in my upper and lower lips; my chin; my nose; my upper and lower jaws; and the roof of my mouth.

After reading many blogs where patients state that at weeks four and five they still have numbness, I find this outcome of mine to be a miracle. Even Dr. Li during our pre-surgery consultation told me I could even have permanent numbness. In showing my wife that I could feel, I kept pinching my face all over and she got the message.

The professionals at Stanford really know their job, especially when it comes to pain control and patient comfort. So I can honestly say that as soon as the pain reached 3 or 4 on a scale of 10 (0-no pain; 4-pain becoming intolerable; 10-the worst pain) they took care of me. From leaving the OR and up to this point, I never had pain worst than 4, maybe 5. The worst part of the pain control was being woken up at 2 am 4 am etc. to check my pain level and to administer oral pain meds.

After this surgery you immediately start to have deep sleep where you are really out. I wish I could have been given IV pain meds and left to sleep for about two weeks.


Day Two at Stanford Hospital Regular Room

Well they moved me out of the ICU, my pre-med and surgery training apparently over. I remember they kept me in the same bed and it was motorized. The nurse just drove it along the hallways like he had done it 100’s of times. I want to say stop by the nearest Dunkin Donuts but my mouth was wired shut with rubber bands. The only other thing I was interested in was sleep.

We arrived at the regular hospital room and the first thing I noticed was I’m going to have to share a room, but I’m getting the window bed. The patient in the room was a very loud, boisterous gentleman in his late 50’s or 60’s. He did not seem to realize he was in a hospital as he swore and complained vigorously to his daughter and wife. They realized they were in a hospital and now had a patient roommate but he did not seem concerned, no matter how much they tried to settle him down. I have to say this was the first time in over 30 years that I heard someone use the N-word. He apparently was upset with one of his nurses.

However, this is not what really bothered me. His daughter was coughing and sneezing non-stop and touching everything in the room. The father/patient was coughing also, but he’s a patient so I have to respect that. The daughter did wear a mask; however it did not fit over her nose and mouth (she had a very large face). Most of the time she had it over her mouth only and regularly removed it to talk or cough.

Coming out of surgery, having not slept yet, I decided I could not afford to catch something from this visitor, who obviously had little concern (she did wear a mask) for the other patients or even her father. Maybe they had the same thing. They certainly harmonized in their coughing and sneezing. I asked my wife to bring the sick visitors’ actions and sickness to the nurses’ station with the message I would like to move. She returned with a message that they would be working on it.

I waited 10-15 minutes and I thought the best way to bring this situation to the attention it needed was to get out of bed with my IV stand in hand and go out into the hallway. I did so and sat down on a non-descript desk chair at the end of the hallway far away from my roommate and his guests.

This seemed to do the trick. And I am so glad because I was contemplating lying down on the hallway floor and start shaking uncontrollably (just kidding). The head nurse showed up and I was moved two rooms down with a new sleep apnea patient as a roommate.


Day Three at Stanford Hospital Regular Room

I slept on and off throughout the night, again sleeping pretty good except to have to wake up to get pain meds and hear the patient next to me pleading for more meds. He seemed to know the names of all of them and which ones you could take together. He did not have jaw surgery. He had a GA (Genioglossus Advancement) and some soft tissue surgeries.

The big decision for us (my wife and me) was to decide whether to stay one more night or leave for our hotel for a week or so of recovery. Dr. Li said it was my call. My wife was leaning toward staying one more night and I was not sure. My only fear throughout this whole surgery and recovery was that with my mouth wired shut, I might choke and not be able to breathe. This is where I think about what my family and church friends would say and that would be “trust in the Lord.” So with a few prayers said, we left the hospital after one day in ICU and one day in a regular room. That decision probably saved my insurance company and me $15,000 to $20,000.

Everyone at Stanford Hospital was great.

John

First Two Days after MMA Surgery

Introduction

I must apologize for taking a week to get back to you. Even though everything has gone well and I have no problem sleeping, I just have not felt like sitting in front of the computer. My wife Mary posted the last posting on January 5th the evening of the surgery. It has been some experience and I will describe all the experiences below and on later blogs.


Day One the Surgery

As we all know the surgery is a piece of cake for the patient. Once they plug you into the meds, its lights out and what seems like just 10-15 seconds they are waking you back up. While they are waking you up, you have that kind of warm close feeling like we had when you were 5-7 years old and our mother would come wake us up on a Saturday morning and say, “ How are you Johnny? Do you want breakfast?”

We arrived at the Hospital at 5:30 am and we took care of all the paperwork and $100 co-pay. They have an electronic display board in the waiting room where every patient’s “patient number” is displayed along with their status, such as: “admitted” “pre-op” “surgery” “recovery” etc. It reminded me of the flight status boards you see at the airports or in the cell phone parking lots at the airports; “plane has landed” “baggage arriving” “ready for pick up”.

I met the anesthesia doctor who was very nice and he advised me that it would be just him and me….no students to train today. He also said he is a professor and has been working with Dr. Li every since Dr. Li’s first surgery many years ago. I really think things go better when everyone working together knows how each of them think and work. And frankly, I did not want a student doctor practicing on me. Again, I think the Lord has blessed me dearly.

Dr. Li told Mary and me after surgery that everything went well. That may be a “pat” answer or remark but we still believed him. After all I was breathing on my own, there were no tears in my wife’s eyes and I expected everything to go well anyways. People have asked, including my wife, at least 6 times do you feel like your airway passage is bigger. I never could feel that my airway was too small before the surgery, so why would I feel like it is much bigger now.

As far as specifics on the surgery, we all want to know how much wider is my airway? Dr. Li stated that he moved my jaws forward 15 to 17 mm. He did also tell me that MMA patients are sometimes misinformed or misguided when it comes to the MMA surgery and looking for only a larger breathing opening from the MMA jaw advancement. He said, that just as critical is the tightening of the soft pallet tissue near the airway opening which then does not collapse in the enlarged airway.

I asked if he did any other procedures on me during the surgery. I was hoping for a tummy tuck, but I know that was not going to happen. He said as soon as he dropped my upper jaw, a bunch of puss started draining out of my right sinus cavity. We all have known that I have had a chronic sinus infection and I am on and off antibiotics 5-6 times a year. Sometimes these turn into full fledged sinus infections/colds were I am bed ridden for 3-5 days. Well, he said he flushed, suctioned and scrapped the sinus cavity while he was in there. He said that if my immune system does not come back and take care of this issue and I cannot defend these infections, I may have to do something about this.


Day One the Recovery & ICU

Well, sit back because I have a dandy of a story to tell you all about my ICU stint (from 12noon until 11 am the next day). I arrived there and it was pretty much what I expected. The large room had drapes for each patient, but they are not closed, not even half closed. I can honestly tell you without exaggeration that during the 11 to 12 hours I spent there I did not sleep one minute.

Patient One across from me:
She was in her 60’s or early 70’s and seemed to moan most of the night. I think the Stanford Medical School held a class there in her cubicle once every 30 minutes the whole night with approximately 6-8 students each time. They were examining her from top to bottom. At one point I asked an orderly to close her curtain or mine to give her a little privacy. I saw a lot more than I wanted to.

Patient Two across from me:
He was in his 50’s and did not make too much noise. I could not see him very well.

Patient Three right next to me (no more than two feet):
He was in his late 70’s or more and I believe he came in after I was there. I don’t believe he was doing well because besides his continual moaning, his children and wife talked to the attending physician for over an hour and a half about a living will and whether they should resuscitate him. I felt sorry for him because unless he as deaf, he likely was hearing how bad he was doing and that they were not going to resuscitate him.

I started praying for him on and off the rest of the night. I could see his monitor readings in the reflection in the glass partitions. So unfortunately I had a tendency to keep an eye on his pulse and breathing. Also alarms were always going off on his monitor so that further brought my attention to him.

Well, some two hours, later they decided to conduct surgery on him right in the ICU. It was a procedure where they went into his neck artery and ran a probe down somewhere in his body. They were monitoring the position of the probe with a sonogram type machine. The reason I heard most of this and could not just shut my mind to it was because a student doctor was performing the surgery and the professor/doctor was running him through every step of the procedure. At one point the professor/doctor did put scrubs on and took over the surgery procedure. The good news is the patient seemed in much better shape in the morning and was talking. I wonder if I can get any college credits for hearing everything I did?

Most people that know me know that I am an optimist and am not a complainer. And I am not complaining about what took place in the ICU that night. I understand completely that is why they call it the ICU. God bless all of the doctors, students, nurses and patients.

I said this because you will hear my first complaint just below.

I am getting tired and I want to post this so I will finish up tomorrow with days two – six.

John

Surgery and First Day of Recovery

I arrived at the hospital by 5:30a.m. and got the necessary paperwork completed. I was called for presurgery prep, changing into a gown and reviewing information with the nurse. The anesthesiologist ,who has been at Stanford for over 25 years, told me what he would be doing and mentioned that he has worked with Dr. Li since Dr. Li had been at Stanford. I felt I was in good hands.

The surgery took four hours. Dr. Li said everything went very well and that he moved my jaw "a lot" and that I would be "happy". He said I should do just fine. I went from surgery to ICU. I have been applying cold packs all day and they do help. My pain on a scale of 1 being least pain to 10 being the greatest, is 7 soon after I arrived at the ICU. By the late afternoon, I was about 5 1/2. Most important is to stay ahead of the pain and not wait too long for medication. I am having some trouble swallowing my saliva but hopefully this will get better. Three things the doctor told me to do: Take deep breaths, where the chest rises up; Get up and walk; Drink lots of liquids.

I have only been able to do the deep breathing but tomorrow I will work on getting out of bed and hopefully, get some liquids down. More to come!

Just Under 24 Hours to Go

At this time tomorrow I will be two hours into MMA surgery. I meet with Dr. Li today at 2:00pm for my pre-surgery consultation. As before, I have a long list of questions. I am feeling good about this surgery and ready to go. As a family member has just said, the surgery and recovery should be the easy part since I have spent 15 to 20 years living with the severe symptoms of sleep apnea.

It is amazing how God has guided us through this pre-surgery process. We attended the local Greek Orthodox Church on Sunday and met two doctors. One was a sleep doctor who trained at Stanford and the other doctor was an oral surgeon, who just last week, performed two MMA surgeries. They both gave us strong support for what I am doing and offered us their prayers. One of doctors stated that now they are trying to diagnose sleep apnea early in children before their growth plates are fully grown. They can make adjustments orthodontically so jaw surgery can be avoided later on in life.

I am starting to act and feel like a race horse at the starting gate, where he is chopping at the bit and raring to go! I would like to go and check in at the Ambulatory Surgery Center now and get all the paper work done now and even find myself a gurney and a blanket. Oh well, I guess I will pass the time roaming the aisles of the nearest Walgreens looking at different types of over-the-counter pain meds and getting a dry erase whiteboard.

So...take care and thank you for your prayers and your visits to my blog. I hope to post a post-surgery update very soon.

On My Way......See You On the Other Side

My MMA Surgery is T-Minus 4 Days and Counting

Tomorrow morning we leave Phoenix at 5:00 am on our 735 mile journey which hopefully will take me from nights of sleeplessness to days of awakening to restfulness, energy, good memory and the ability to enjoy good times with my family and friends.

We have likely over done it on researching, planning, packing, purchasing, etc. however it did help pass the time. I started this blog with T-45 days and counting on November 25th. Now in just under 4 days, I will be in the hands of God and Dr. Li.

Second thoughts you ask! None. I would go in this afternoon if given the opportunity. I don’t deny having some thoughts about the pain, inability to eat & chew and talk. But those thoughts vanish immediately once I look back at the last 10-15 years of my un-corrected sleep apnea symptoms. I also think of the comments made by the many MMA surgery patients who praise the surgeons and the surgery.

I look back over the past six months and it seems to me my symptoms have gotten progressively worse. I am not sure if this is just a mental issue, but in any case I am thankful that there is a procedure available to me that has a good chance of providing substantial relief.

I don’t want to jinx’s this surgery but me being the optimist I am; I believe I have a great chance of being cured of the obstructive sleep apneas. I believe this because of:

My faith in the Lord Jesus Christ.

The prayers of my family, friends and others.

Having one of the best surgeons in the country if not the world.

Having the surgery performed at one of the best medical facilities in the country.

Well you next will be hearing from me one to two days “post-op”…….those words sound good to me. God bless you all and thanks for your prayers.

John