Saturday, March 3, 2007

Saturday, March 3, 2007

It’s Saturday morning and I’m up at 8:39 writing in a blog. So what went wrong? Why am I awake now? Issue is that I didn’t sleep for anything last night and spent most the whole night awake, listening to the sounds of the house after dark. Shadow meowed several times last night, very loudly; makes me wonder if she’s in pain now, more so than in the past. CC even got up once to check on her and it didn’t stop her.
I was tempted to simply get up and begin writing around 3:00 AM but chose to remain horizontal in case I might actually succeed in “falling” asleep. Obviously, no such luck.
CC and her mom are heading down to Angel’s place in Hollister this morning to be there for Angel’s bridal shower tonight and then they will spend the night and come back up tomorrow sometime and Missy is going to have a play-date at a friend’s house this afternoon, so tonight will be a “Joshy and Daddy Date Night” which should be lots of fun if I can stay awake for most of it. Maybe I’ll score a nap this afternoon.

I enjoyed a fun and relaxing lunch with Rob yesterday, something we often did midweek during work in order to stay connected and on the same page work-wise. Yesterday was cool just catching up and getting up to date.

When I came home from my outing, I found that CC had picked up the 935 page medical chart from the Kaiser Medical offices, to the tune of $233.75! I feel like I’ve been robbed in most senses, but we absolutely must have a copy of the medical records at this point, given the positioning which seems to be taking place and the possible ramifications from our recent trip to the Bay Area’s Redwood City Kaiser ER.

Speaking of, here’s what I understand, remember and pretty much know to have taken place a week ago last Thursday...

Thursday, I woke up and stated that I wasn’t feeling good or “right” which is a usual alarm. We had plans for the days which included lunch with our good friends in San Francisco as well as a phone interview for me for a magazine interview.
The interview was scheduled for 10:00 AM and it was 9:45 AM when this attack kicked in. This attack was different in that I did not feel the paralysis as usual, but was in considerable pain, spasms and cold/clammy. I was losing control of speaking due to the spasms though my jaw and the pain which was taking all of my concentration to overcome and keep from screaming or yelling out.
The kids were here this time and I couldn’t hide it from them. CC did a great job of keeping them focused in some other direction for the most part. I remember Missy coming over and shakily asking if I was OK and then saying “You’ll be alright, daddy. I just know you will, you’ll see.” Just like out of a movie and that brought as much tears as did the physical pain I was handling.
CC and my dad carried me out to the van and got me into the front seat and took off for the hospital. I remember lots of turns left and right as I was more or less leaning on her lap as she drove.
Once at the door to the ER, they got me into a wheel chair somehow and took me inside. The cold air from going from the inside of the car to the wheelchair outside caused another round of nastiness in the way of chills.
CC said I was hunched over in the chair; All I knew was that I was in severe pain and unable to verbally communicate or physically move, intentionally. CC told the two receptionists in the ER reception area that I was in need of immediate attention due to the fact that my potassium was either too low or too high and that because of my diagnosis of HKPP, I am unable to tolerate saline, something we know is normally one of the first medicines used. CC was told to have us “take a seat and we’ll be with you when we can.” We waiting in a state of pain and suspension for like 10 minutes in the lobby before I was taken to the triage nurse who CC said took one look at me and moved immediately for a gurney and had me put on one. CC handed the triage nurse the printed ER Treatment Notes that we keep with us now all the time and told her that I could not tolerate saline and that I had a Medic Alert Bracelet on my left wrist as well. She apparently asked CC to help transport me to another location in the ER, which she did. At this point they forbid CC to stay with me. A nurse, who CC got the name of, stood in front of her, to block her, and stated “You (referring to CC) are not allowed back here, you must wait outside.” She told the prohibitive nurse that I was unable to communicate with them and she needed to stay with me to be able to answer their questions on my behalf and to make sure that I am not administered any saline. This time, in a firmer voice, the nurse stated to CC “You are not allowed back here, let our staff do their job and we will let you know when you can visit him!” And with that, I was wheeled away into gurney isolation and CC was effectively prohibited from staying with him. I was not aware she wasn’t with me until I came-to enough to see that she wasn’t next to me and that no one was next to me, however, there was an IV in the back of my left hand, just below my Medic Alert bracelet and that the spasms had kicked into overdrive for some reason.
It felt like forever that I was alone and I was truly scared. I definitely came to an new comprehension of fear when I understood that CC was NOT with me anymore and that I was by myself and couldn’t speak well enough to say my name let alone what was wrong with me.
CC said it took literally about 30 minutes before she was allowed back to see me during which time she had asked every ten minutes if they would please let her back to me and she expressed her sincere concern that a mistake could happen since I couldn’t communicate with them. Each time she was refused until after or on her third attempt when she was allowed back.

In her words, taken from a letter that she has written to the Member Services of that hospital (can we catch a break here!?) “When I saw my husband, he was lying on a gurney, clearly experiencing violent muscle spasms and obviously in a great deal of pain. The muscle spasms were attacking him all over his body and after I was able to get his attention, he was able to say he was hurting badly. Quickly looking him over, I saw that an IV had been put into his left wrist, directly above his Medic Alert Bracelet. I immediately asked who had administered the IV and an RN said she did. I asked if she flushed the IV with saline and she said “Yes, we always do”. I stated that I informed them verbally and in writing that he cannot tolerate saline, but she simply replied that no one told her and any paperwork that I gave to them was up front with the receptionist who was putting his chart together. When I then showed her that the IV was put in next to the Medic Alert Bracelet which states “Allergic to Sulfa, Glucose and Saline.” she stated again, “Well no one told me and your husband was unable to talk to us, so we didn’t know.” What I had feared could happen if I was not allowed to stay with him DID, in fact happen which was exactly the reason I was so insistent on staying with him in the first place. The nurse came across defiant, unapologetic and completely unconcerned with my husband’s very evident increasing state of muscle pain; Not only did she not offer to help treat his pain, she didn’t even call a doctor in to evaluate him. She just left him there in pain.
I told her that this needed to be reported and that I wanted to have a patient advocate called in, to which she rudely replied something to the effect of “You can do whatever I want to.” Once another family member arrived (my sister, I think. -w), to stay by my husband’s side, I went directly to Member Services and spoke to them to immediately report the incident.
The first ER MD who saw my husband ordered Percocet in pill form for his pain even though we explained that it would not be the least bit effective. After several minutes, there was no change in my husband’s condition. It was not until Dr. Kreitzer eventually arrived that Wade’s condition began to improve. When Dr. Kreitzer saw my husband, he said that he could not effectively evaluate my husband in the condition that he was in due to the obvious severe pain, and muscle spasms that were still happening to him. To complicate matters further, Wade (my husband) had begun hyperventilating due to the severe pain. Dr. Kreitzer said that he would have to wait until the IV pain meds begin to start working before he could start his evaluation. When we told him that Wade had yet to even receive ANY IV pain medicine, even though we had requested them and up to this point was only allowed to have Percocet, Dr. Kreitzer immediately went to the RN in question and instructed her to give my husband adequate pain medication. Dr. Kreitzer was also very surprised when we told him that the ER staff had administered saline Wade, an HKPP patient.
It was clear that no one on or associated with the ER staff apparently called the 800 number on the Medic Alert Bracelet because none of the Medic Alert emergency information protocol was followed in any way, from suggested pain control to prohibiting the use of saline. We have been assured that once an ER calls the 800 number specific instructions would be immediately verbally explained and also faxed to them which would immediately confirm his current meds, allergies, medical conditions, etc. If for any reason my husband should be taken to the ER without a family member to represent him, and/or he was unconscious, this is the only way for staff to be aware of his acute medical needs. It is clear to me that this protocol was not considered, let alone followed."

She paints a pretty clear picture, no? Reading her account helped me put the fragmented memories and images back into place and explained a lot of the definitive pain I was going through. I was admitted by Dr. Kreitzer to the hospital for observation and subsequent pain control and to level; out the phosphorus in my system. It turns out that my potassium was high this time and my phosphorus was abnormally low and that when one’s phosphorus is low, muscle aches and pain are a naturally common occurrence, as well as weakness.
The rest of the time in the hospital is a blur but I know that I had at least one visitor who was (is) a very, very dear family friend who’s been following our plight via my parents and is also a retired OB/GYN from Kaiser. As a result of seeing me and the situation first hand, he wrote a pointed but very kind pleading letter to the neurologists and my regular doc, asking for my care to be stepped up and for me to be given the opportunity to be taken care of via UCSF’s Neurology Department who are actively treating patients who are suffering from similar and identical symptoms as me.

Friday morning came and I was anxious to go home with CC and the kids, back to Sacramento. After some morning time spent with the physical therapist, I was released from the hospital and we went for the long drive back home. I don’t remember the drive but do remember CC having to help me walk into the house to my bed. I’m blessed and lucky she is as strong as she is and knows how to support someone bigger than her because after these attacks, I can hardly walk whatsoever. Per usual, I could barely walk Saturday, though I tried and Sunday wasn’t much better. Then after Sunday, each day brought better strength and less pain and now, a week later, I’m back to being good for about ½ a day before I have to really slow down and sit most of the rest of the day.

So it’s now Saturday and Missy’s soon to be off for her play date and my back is killing me from being up. Have to sit or lay down for a while. I hate being weak.

Maybe more tonight or some tomorrow.
Sorry for the lag time between days.
peace