Sunday, August 7, 2011

A Great Weekend

This weekend has been good.

Thursday we got a check in the mail from doctors appointments that we had in March. We all got our eyes checked in March. I thought it should be concidered preventive care. They charged us our co-pay and we left it at that. I guess it was preventive because the check was the amount of all three of our co-pays.

Friday we met with the surgeon ( Dr. Kenwood) to discuss if Jere needs surgery or not. After talking about the pros and cons there will be no surgery right now. Instead Jere will just be monitored ( echo with bubbles) yearly and take a baby asprin daily. Jere fell asleep during the TEE and so he didn't realize that they did a bubble test. They mix air into salt water and then inject it into your IV. There should be bubbles in the right side of your heart but not the left because the lungs should filter the bubbles out. If they is any bubbles in the left side of the heart that means that blood went through the hole and bypassed the lungs. Jere had " a moderate" amount of bubles in the left side.  Dr. Kenwood was shocked to find out Jere ran cross country in high school. Dr. Kenwood said if I felt strongly about closing it I wouldnt give you a choice. At this point and with our insurance we are looking for a reason to close it ( and there isn't really one). There are lots of hoops we would have to go through. Jere would have to get a brain MRI with bubbles, to see if bubbles( clots) are getting to his brain. Dr. Sampson was going to have a fellow stroke specialist look at Jere's stuff and she what they thought.

Friday night we went to the drive-ins. We saw Rise of the Planet of the Apes and X-Men First Class. Both movies were so good. Alma is the one who actully chose which movies to see. You know your kid is growing up fast when they chose "grown-up" movies.

Saturday we slept in until 9am, it felt so good. Jere got up and took Alma to Home Depot for their monthly craft. When they got home we where going to go to the dumps and drop off some old computer parts and see if they had any outdoors paint or stain for the shed Jere built and Alma's fort. On our way to the dumps Jere wanted to drop the monitor off at the DI  because it still worked. Since we were there we went inside to look around. We found some books, a game, a cool fleece soccer blanket, a Willow Tree figure, a Backugan toy and an office style white board cabinet. It is 4 feet by 4 feet cherry wood. You open it up and both doors have cork board on them, the center is a huge white board and there is a projector screen that pulls down . It also had markers ( that all worked) , an eraser and push pins. We tried to get it into our car but it wouldn't fit so we had to call Ellen and Naamah to bring the truck. As a thank you we took them out to eat at Carl's Jr.

At the dumps we scored a green paint for the shed and a red stain for Alma's fort.

It was a great weekend.

Wednesday, July 27, 2011

TEE Test

About 12:30PM
Here I sit waiting for Jere to recover enough from the test. Every few minute the blood pressure cuff takes his pressure and every time an alarm goes off and it is low. First it was 91/48, now it is 88/48.  There is a yellow line that I don't know what it means, I thought it was his breathes per minute but I hope not because it keeps going to zero ( and I can see him breathing still). His heart rate is jumping around but staying in the 50's.

I was going to stay with Jere as long as they let me. Them kicked me out right as they were numbing him for the test and brought me back in right after it was done. The nurse said that Jere has a great gag reflex. It took three tries to get the ultrasound thing down his throat. Jere said he could not swallow so the doctor had to push it down his throat. Thinking about it, it makes sense. They relaxed muscle that have myotonia those puppies are going to move for awhile.  The doctor also said that surgery is up in the air. We met with Jere's neurologist Friday and we will talk to her about pros and cons of surgery and then Aug 5th ( a week and half away) we met with the surgeon and talk more about surgery. The doctor also said that the MRI showed possibly more than one hole. The PA that we met with for the results of the MRI didn't tell us that. The GREAT news is that there is only one hole. I guess Jere said that the doctor was very happy with the images he was getting on the ultrasound today. I can't remember now which way the blood was flowing, I think he said left to right, but some is going right to left as well. The reason it is hard to decide to do surgery now is because Jere has no signs or symptoms of a hole other that seeing the hole. The hole will wear out his heart faster if it doesn't get closed but we have to weigh the pros and cons.

There goes the BP cuff again lets see what the results are this time..........95/52. Pulse 63. now pulse is 73. Pulse back down to 58.

I'm so hungry. I could use a hamburger and fries. I'm too scared to leave Jere's side though.

Well that is scary. I just looked up what the yellow  line on the monitor means and I was right it is his breathing, breaths per minute. Right now it is 15.

I'm writing this because I'm bored and so Jere can read it after he comes out of the sedation and wants to know how things went. I'm so stinky, I should've chosen a stronger deodorant. My body is all messed up, any hightened emotion and i sweat, then I get cold so my body kicks up the heat and i sweat even more. It really STINKS, get it stinks hahaha.

1:17 PM
The cuff is going again, and the results are....... 93/49 pulse is 60 and breathe is 12.
 Breathing went back up to 14 and pulse is jumpy is low 60's

He just moved and pulse went into high 70's ans breaths were 17 but now they are back down to pulse 61 and breaths 14.

He speaks! "It's almost 1:30?" is all he says. When asked how he is feeling " good" is all I get before back to sleep he goes.

1:30
I was just thinking I'm documenting Jere's vitals so I need to know what they gave him. They did some local stuff in his throat and the sedative in his IV. The sedative was given in the lowest possible dose three times. They slowly gave it to him until it started to work. The name on the bottle is Bacteriostatic 0.9% sodium chloride and the bottle for the local says lidocaine hydrochloride 4% on it.

The cuff just went again, the alarm is sounding again 87/49 pulse 79 and breaths 17 Jere was moving then so now they are back to pulse 59 and breaths 11.

1:40
He is awake more now. The nurses where talking about cookies in the hall and Jere said " That ain't fair". He hasn't been able to eat since last night before bed.

I just heard the nurse talking at the nurse station. Saying room 21 ( that is us) has an interesting rhythm. Saying it looks like something, ( I didn't catch what she said). His pulse is 62 and breaths 6?! Now back to 11.

1:45
"I'm ready to go home" then back to sleep.

1:47
Cuff again 93/51 pulse low 60's breaths 14. " yeah, my BP didn't beep that time"

1:50
Try sitting/ moving up and looked horrible, white/greyish. Lay back down color came back, kind of. Pulse high 50's breaths 12. Starting to get restless, by restless mean tapping hands and feet.
When asked if bored get a head nod yes.

1:55
Nurse comes in ask about neasea Jere has none. One or two more BP then let us go. Took O2 off and O2 sensor.  Pulse low 60's breath 13. " Man I felt so far out when fell to sleep"

BP cuff 99/53. Pulse high 50's and breaths 13.

2:03
" hey, what you been up too?"
He farted he must be feeling better:)
Pulse is high 50's and breath 16, nope now 10. Now 18.

2:10
Talking and ready to go home if only the nurse would agree. Still need another BP . Still looking kind of white " I just want to get up and get some food"
Nurse comes in to discharge. All good to go.

Last BP106/53 pulse 60 breath 18 ( while taking IV out)

2:45
We are home finally. He was able to walk to the car by himself. " I have a frog in my throat, do I sound hot?" " Ugh, I don't feel like driving"

He has drank water and eaten a fruit cup. Now he is doing spaghetti So all is well.

Sunday, July 24, 2011

Fullmer Camp 2011

This past week ( July 17-23) we were camping with my family. We had lots of fun. We went to Payson Lake, fishing, played in the river, played games, target practiced with paint balls and much more.


Jere and Alma went fishing, and actually caught a fish. Jere can careless about fishing but Alma wanted to go.  When Jere started to gut and clean the fish Alma was quite sad. Alma ate some of it but I don't know when he will want to go fishing again. He is such an animal lover.
Almost in tears


We went to the lake twice during the week, Monday and Thursday.  On Friday we found out that there were two bears walking around Payson Lake on Thursday. They couldn't catch them so they had to empty the campground.





We took ALL 5 of the dogs with us. They did pretty good. The little kids loved them. Everytime we turned around a little kid was over by the dogs. Spy got sick, he ate something that did NOT like him. That was a nasty mess to clean up. With the lack of a shower and washer we had to throw all the blankets away and bath the dogs with baby wipes.

Bare

Spy
Tiny
Kaiden, Bare,Spy, Tiny, Precious

Wednesday, July 6, 2011

INDEPENDENCE WEEKEND

We had such a fun weekend. We started out down south in Goblin Valley and finished up in the north at Antelope Island.


We left Friday morning for the four hour drive to Goblin Valley. We stopped in Lehi at Trafalga to see a XD movie, Jet and Jim. Before we checked in at Goblin Valley we stopped at Temple Mountain Uranium Mine. It was so hot after being in the car with A/C. The mine was so high up we only sasw it from a distance. They had some cool run down buildings. After we were done with the heat  we went to Goblin Valley and set up camp. As we were unpacking the car I noticed my shoe was broken. How was I suppose to hike with a broken shoe?!?!?!? So we finished setting up and then went into Hanksville. It was such a small town, no place to buy new shoes so we found some super glue to glue the soles back together. On our way back to Goblin Valley we saw a cool OLD tow truck.  When we got back to camp I started dinner and Jere was going to fix my shoes. He couldn't get any glue to come out so he cut the tube open and THE GLUE WAS DRIED!!!!!! We were so mad, we spent that time and money for nothing. On our way back into Goblin Valley we had stopped at the visitor center and bought some post cards, bookmarks, magnet and Alma a t-shirt. While we were walking around in the visitor center I noticed they had duct tape. So while I was finishing dinner Jere went back to the visitor center to get some duct tape. It pretty well on holding my shoes together until on Saturday when we were in the slot canyon and the tape wouldn't stick so I finally just pulled the broken pieces off and thought I will deal with it.






Saturday morning we hiked in the Valley of the Goblins. It was so fun. We were going places that Jere would have to help us into. Jere would pull us up or block us from falling, he is the man. After resting for a little and having lunch we went to Little Wild Horse Slot Canyon. That was the coolest place. Being claustrophobic it was scary but so worth it. It was in the afternoon so it was getting so hot again. When we got back to camp it was so hot almost unbearable. Jere took some sleeping bags (that we weren't using because it was so hot at night) and laid them out in some shade cast by our covered table so we could cool off. We laid there while Jere read to us.




Sunday morning we packed up, then went to the Valley of the Goblins to hike some more before leaving to come home. This time we found a cave. It was the coolest cave we found the whole time. It went back and then turned. At the end we could look up and see the guy standing above us. After hiking about and 1.5 hours we left for home.




Monday we met Jere's family at Antelope Island for a picnic. While we were Alma became a Jr. Ranger. He had to pick up trash, and do some other activities to learn about nature.  That afternoon we had a play-set raising party and BBQ. ( We got a free Rainbow play-set and needed help setting it up.) That night Dev and Naamah ( Jere's siblings) had brought some fireworks to light. Alma got his first lesson in lighting fireworks from Dev. He was taught how to light them safely and how to dispose of the safely.







It was a fun weekend.

Friday, June 24, 2011

Broken Heart But Doing Fine/ The Results

About a month ago Jere had an Echo done on his heart as normal monitoring of his heart. During his doctor visit a week later the doctor was acting weird asking interesting questions. They found a hole in Jere's heart but because they never have seen it before and Jere has no signs or symptoms they weren't sure if there was one or just the angle of the echo. (The echo tech had made a comment that Jere's heart was VERY photogenic that day. She was able to get the Carotid Artery which isn't easy. ) Because the echo tech made that comment I was sure there was a hole. Friday (June 17th) Jere went in for an MRI of his heart. ( He had an anxiety attack at the end of it, poor guy. I've had one before so I totally feel for him) Jere also had a sleep apnea test and his cholesterol checked. Yesterday we went back to get the results for all the test ( we met with a PA not the doctor). Here they are:

SLEEP APNEA: He just had to wear an oxygen monitor for a night. Anything above 90% is fine. Jere's range for the night was 98% - 88%. He was only at 88% for 5% of the night so not bad. That means he is border line sleep apnea. With most people with this result they would suggest losing weight but that isn't an option for Jere. They are just going to test him again if he has more symptoms pop up. Sleep apnea goes with MMD because the muscle walls get weak. I was relieved that he didn't need the CPAP. I was going to kick him downstairs to sleep if he needed one. I don't sleep well as it is that machine would never let me sleep.

CHOLESTEROL:
           The numbers:
                         LDL should be 130-100 or less Jere's 20 something. EXCELLENT
                         HDL should be about 40 or just above Jere's 23. NOT GOOD
                         Triglycerides should be about 150 or less Jere's 356 VERY VERY BAD

To get the HDL up we need to get the triglycerides down. To do that he has to quit smoking ( not a problem there), lose weight( from where?), exercise more (started that today. We bought a stationary bike off KSL) and watch his diet ( easier said than done).  So as a family we are all going to change our diets, can only make us healthier. I remember when I was a teen hearing my dad's test results from cholesterol and his LDL was low so was his HDL. Cholesterol is part genetics so i might have a tendency to have my numbers go the same way ( mine hasn't been checked yet because I haet needles).

HEART: There is a hole. It is between the right and left atrium. Alot of people have kind of a hole, more two over lapping flaps that don't touch and so blood can go through but not alot. Jere's is less common, it is a straight up hole. He doesn't have any of the physical exhausting that comes with it ( as far as we can tell, MMD cause exhaustion). So there are two reasons they close his kind of hole. First to help with the exhaustion, not an issue. The second blood clots, stroke and heart attack prevention. So the question isn't if they will close it but when. The GREAT news though is it isn't rip the chest open surgery, it is up the femoral artery. He doesn't have to be knocked out, they can do a local anesthetic. That is a huge relief, general anesthetics are dangerous for Jere. He has one more test to see how much blood flow is going through the hole and then we met with the surgeon. The last test is swallowing an ultrasound looking thing and " sitting it on his heart" to get more images and info.

We feel like it was a blessing that Jere's heart was so "photogenic". It is better to get it taken care of while he is still young and can recover fairly quickly. It would've been bad to find out he had a hole by him having a stroke or heart attack.

Tuesday, June 21, 2011

Getting Older

The last few weeks I've realized I'm getting older. Alma and I went swimming and I got a sunburn. I don't tan out as fast as I use to. Then we went to Lagoon a week later and I had to pee after going on the fast, intense rides. After my body got use to the rides I was fine. I was like a teenager again, riding ride after ride.

Update on the house projects: The bathroom is STILL being worked on. Jere should be done soon. I've worked alittle bit on moving the rocks in the front yard. We are being given a Rainbow play set so that will bump some of the other projects down the list. We saw the play set yesterday and Alma loved it. It looked really cool. A coat of paint and it will look new.

Thursday, June 9, 2011

Still going.......

Well the bathroom still isn't done.  The drill's battery died tonight. Could be because Jere charged it way too long.  So we went to Home Depot to get a new drill or a battery. As we are looking at the power tools Jere picks up a drill and says that is cute. I laughed so hard. He won't live this down for awhile. We ended up getting the exact same drill ( just newer model) we got for our wedding eight years ago. This drill came with two batteries, a soft case and charger. So until the motor in the old drill dies we will have two drills, SCORE!