If I had only one word I could use to sum up the last two days, it would definitely be NIGHTMARE. What should have been the happiest day (or one of them, at least!) of our life has turned into one living nightmare. My husband was released from the hospital July 27th after a one month plus hospital stay after having surgery to remove an arterio-venous malformation in his intestine. As you all know, he ran into many complications, hence the lengthy hospital stay. Well, on the day of his release, his blood pressure was very low. I'm talking in the toilet low. The nurse had him lay, sit and stand while she took various blood pressures and the good news was there wasn't too much of a change when he changed positions. The bad news remained that his pressure just was too low. The nurse stated she would hold his Lopressor (a beta-blocker for the heart that lowers pulse and blood pressure) and see what happens. He was placed on it in the first place because he has chronic atrial fibrillation and was taking Atenolol at home, but they changed it to this Lopressor because his heart rate during hospitalization was in the 130's. Normal is 60-100 for adults. His blood pressure range was 80's/40's and normal for adults is 130/80. So you can see where I was very worried over his numbers. But, the hospital wasn't too concerned and sent him home anyway. I just thought we'd pump him full of liquids, feed him well and hold any kind of blood pressure medication. I don't care that his discharge instructions said to take them!!
He was OK that night, and slept most of the night. I couldn't sleep, I was too busy worrying about my husband. He's such a trooper, I've been taking his blood pressure so much you can see the cuff indentation in his wrist...I have one of those units that fits on your wrist and takes the pressure that way. Very nice unit. The following day, the 28th, started out with a bang and ended that way, too. My husband had taken his Gleevec (cancer med) by mistake on an empty stomach so a few hours later, he's in the bathroom praying to the porcelin god! He threw up so much, I think it was coming clear down from his toes. He vomited about three separate times and then that stopped in the afternoon. Whew, we thought, that is over. No more taking the Gleevec on an empty stomach! He just was confused, I think, and fatigued after being in the hospital for so long. So I'm "helping" him with dispensing his medications for awhile until he gets back to "normal." He knew better than to take that Gleevec on an empty stomach, he's only been taking it the past 7 years!
We get through the early evening OK and then BAM! He starts shaking and having severe chills. I check his temp and it's 101.4. He also was draining quite a bit from his JP drain in his abdomen. The area didn't look infected or feel warm. This temp had to be coming from somewhere! And then his BP got really low again. My mother-in-law and I were up all night with him, stuffing him full of gatorade (which he hates but needed because of the electrolytes), sandwiches, water, milk, soda and anything we could think of to help get his blood pressure up and circulating inside his body. By 10am this morning, his blood pressure was 71/45 and we had done all we could. The ibuprofen I gave him for his fever worked and his temp was 97.3. It was hospital time, though, with that blood pressure. So I packaged everything up-my blue bag that I had received from the hospital when Frankie was very first admitted because I was his PAL, which is a program where patients can choose one person to act as his liason and stay with him for as long as needed to comfort him. I even received a pin and a discount in the cafe and cafeteria in the hospital. Anyway, I put my book in there, a few sandwiches and drinks for us as you just never know how long you will be sitting there! I've been to a lot of ER's where you wait a good four hours to even be seen! So I came prepared!
We get down to the ER and everyone was so incredibly sweet there. We had only a 10 to 15 minute wait and he was taken back to a room and they started an IV to give him fluids and he also had labs and blood and urine cultures taken. He also had an X-ray of his stomach and pelvis because last night, he was so dizzy, he fell in our carpeted hallway and got a nasty abrasion to his left arm. No other injuries that we could see outwardly, anyway. And he didn't hurt his head with the fall. I did tell the doctor about the fall, though, so she could examine my hubby more thoroughly, especially his head. But lo and behold, all the tests and X-rays came back as normal and they were shipping him home with a prescription for an antibiotic (Augmentin) and with the instructions to get a hold of his surgeon tomorrow. His BP when we left was a whopping 93/47. I guess that's the new norm now as I couldn't get anyone else excited about it except for me and my husband!
When we were going to the car, the wind really started to whip up and we were getting some major monsoon activity going on. I DID pray for rain, but not NOW! I wanted to be at home when the skies opened up and water poured down from the clouds above! But no, we were pounded with rain all the way to the pharmacy and then to home. Frankie said he was feeling better and ate a good meal of soup and English muffins with raisons. Then he went and laid on the bed for awhile until it was his turn to use the computer (we share a desktop). He was doing OK until just a little bit ago when he came into the bedroom just shaking again. This time he had no high temp, it was 97.8. I gave him some ibuprofen just in case it was trying to creep up. I wasn't crazy enough to do a BP....I just couldn't bear anymore bad news at this point!!!!
I am just so frazzled and frustrated and aggravated. Why us all the time? Why can't we have a normal life where you go in for surgery and come out the same week with NO complications? My mom was like this, too. All her surgeries ended in post-op infections that led to further surgeries and extreme pain. Just once....just once I'd like NO complications after EVERYTHING we do!!! ARGHHHHHHHHHH!
There, I feel better with getting that off my chest. I feel like crap myself. I'm so exhausted that I'm BEYOND sleep. I feel like I've got my candle lit at both ends that are fast approaching the middle of the candle!! I find myself being short-tempered and irritable at anything and everybody. My joints are on fire and my muscles are stretched beyond their limits. I've had to take more medication than I'd like just to get at least a few hours of sleep. I just don't know what to do anymore and that is such a helpless feeling!! So I continue praying to God that He will help us all through this rough patch.
Frankie is still sleeping, so I guess that's a good sign. No more shaking, so the ibuprofen must have helped. I started making all his post-op appointments, August is slowly booking up and we haven't even ended July yet! Thank God we have a car now. I remember this time LAST year when we had no car and had to shoot across town to our appointments in a taxi paid for by our health insurance. I'm grateful, of course, they covered that. But nothing is better than having your own set of wheels and we are so in love with the car we selected. My husband found it off of Craig's list and just at the right time. It's a 2000 Toyota Camry, but it was taken such good care of that it looks and runs brand new. It's a comfortable riding car and you don't feel every bump in the road. I like that, as I don't like cars that you can feel every joint-jabbing bump in the road!!
Okay, I'm gonna end this post and go check on Frankie. Thank you for letting me rant and rave for awhile. It did help and I feel a lot better, just getting my feelings out on paper. I think that's why I love writing so much. I'll end this post with another one of my poems written long ago. Hope you enjoy! Have a blessed weekend!!
Until next post,
Along The Road
Floating so freely
With not a care
Across the road and it's gone
Not paying attention to what's fair.
It doesn't matter
It just leaves
Not turning to hear senseless chatter.
It makes not one friend
For it never stays
It had no beginning so how can it have an end?
It moves from place to place,
A drifter-and a proud one
An art done well,
An art done with grace.
Floating so freely, not carrying one load-
It loves life, for it doesn't
Have to live it.
It drifts along,
This leaf hurrying along the road.
FibromyWHAT? by Melissa Schranz is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.