Friday, January 23, 2009

Packing Up & Going Home!

There isn't much more to say than this......................We are going home discouraged, baffled, bewildered and down right disappointed. We had hoped for so much more than this for our trip, but for some reason this was not our time for answers. We appreciate everyone's prayers, encouragement and messages. We have heeded the advice given and we will follow up with the Wisconsin doctors over the phone. We just don't have the energy to chase another path right now. Randy has to turn around and fly back out to work in California as soon as we get home, and Lori just doesn't have the strength to deal with Connor and all the doctors on her own if they were to go to Wiscconsin. Plus, it is time to get home to the other kids and to nursing Alex too. We tried to make the most of our stay here and we will post a lot more pictures once we are home. But for tonight, we must find some rest. Today was just exhausting not getting anywhere with the doctor. It literally sucked the life and hope right out of us. In a nutshell, we were told to possibly change Connor's formula, slow down the rate of his feeding and add Benifiber to his formula. All the way to Minnesota for that??????????????? Go figure. Poor little guy is in so much pain from his g-tube site he just screams. It is raw, red and bloody and even that was not cause enough for concern or intervention. We must now go about the business of figuring things out on our own. I don't know how and I don't know why, but this seems to be the case.

Frustrated and Tired.

Thursday, January 22, 2009

Tears are falling...

We've been released from the hospital after what was a frustrating and unproductive stay. Nothing came of the tests that were preformed on Connor today other than to say that everything is just fine. No dumping syndrome, or if it is it is extremly mild. No Hershenbergs syndrome. His anatomy is perfectly normal so there is no reason that he shouldn't be able to preform typical GI tasks without problem. Well, the problem is that that is not the case. We are so frustrated and angry. I have spent the entire night in tears, Randy is mad and Connor has been screaming in pain because they changed his G-Tube and it is raw & bloody. They released us with the most ridiculous orders and no pain management for Connor. We are glad that Mayo Clinic has been helpful for others, but for us it has been nothing but trouble.

We are at the Ronald McDonald House tonight and tomorrow we will see the original doctor from Monday again. The only things that they have told us are to change the rate of speed at which Connor gets his feedings and maybe that, along with a formula change will do the trick. In their eyes, there is no urgency of finding what is causing the problems, only experimenting with things we've already tried. Granted we are tired, frustrated and far from home, but we are starting to feel that things are never going to change and this was just a major wild goose chase.

Forgive the candidness in which I speak, but it is from an aching mother's heart who is weary from this long battle. As always, we remain hopeful but even that is waning.

Lovebug Hugs,

PS ~
I understand our little angels at home got lots of extra TLC and playtime today. How we loved the pictures and videos on Facebook. We are ready to come and see them.

Wednesday, January 21, 2009

At the hospital

Well today we admitted Connor to St. Mary's Hospital at 8am. In typical hospital style, nothing really happened until after 3pm when they started taking the blood glucose tests before and after Connor's feedings. They are looking for a dramatic drop in blood sugar to occur if he does have Dumping Syndrome. So far, the levels are not remarkable enough to make any determination. He had 5 episodes today and each one of them were missed by the doctors. We would alert the nursing staff that "this was it" and no one ever came until the episode was complete. So, they will be continuing with the plan for tomorrow which is to send Connor into the OR under sedation for quite a few procedures. The results, I'm told, might take a while, so I don't know what the plan is for us after the procedures are done. We do know that we have a follow up appt. with the original Dr. Tung on Friday at 3:30. So, we remain patient, hopeful and expectant for good things.

Another thing thrown out by one of the doctors today was something called Herschbergers Disease. This is where the muscles and the nerves in the anus do not cooridinate during a bowel movement. They aren't sure, but they will check for it. So far, a lot of talk and not a lot of movement, but I guess it will happen all in time.

We were able to get an available room at the Ronald McDonald House which is right across the street from this hospital instead of across town. I will be staying in the hospital with Connor tonight and Randy will be over there. Depending on what the plan is for Connor, at least we have a convenient and comfortable place to stay once we are discharged from the hospital.

Thanks for all your continued prayers. We still need them very much!!!!

Lovebug Hugs For Tonight,

PS ~
Today back home Miss Mackenzie had a fun play date with Auntie Shawn. I've seen the pictures over email and watched a brief video of their time together. It brought tears to our eyes to see her having so much fun, but we are happy to see her having fun. It's harder than we ever imagined to be away from the other kids. Our thanks go out to Grandma Nanny and Grandpa for staying with them and everyone else who is stepping in to provide company and fun for them. You are all dear to us.

Pictures from Tuesday!!!

The start of the day...a big smile!!!

A silly look from a silly boy!!

Playing Davey Crocket with Daddy and Mama on the bed!!!

Davey, Davey Crocket King of the Wild Frontier!!!

Checking into Nuclear Medicine for all of my testing. You can tell by the look on my face this isn't gonna be fun.

Here's the big machine that took my pictures 7 times yesterday. I had to lay still for 4 minutes...It took 4 people just to hold me still for that long.

Mama's taking off my probes.....Yippee, that means I'm done with that test!

Hey Mackenzie, we found Mickey Mouse in Minnesota. What's he doing here? He's supposed to be at home with you in the clubhouse doing the Hot Dog Dance....Hot Dog Hot Dog Hot Diggity Dog!!!! I miss morning cartoons with you sis.....I'll be home soon for a breakfast date with you!!

Connor cruisin' along the waiting room floor to Daddy!!

Watch out ahead....It's a runaway Bug!!!

Connor and I went exploring and you wouldn't believe what we found. Daddy took the shuttle to WalMart (he forgot socks...Mr. Always Prepared) and me and Mommy found lots of fun stuff. The first thing we found was a cool beaver and duck pond on the kids unit.

Here we are...see the little ducks?? I'm glad Daddy and Abbey weren't here to see those ducks or there would have been a problem!!!

Mama even found a big fish tank so we could watch Little Nemo!!!

Can you believe it, we even found Noah's Ark.

Here's proof that there really is a Mrs. Noah!!!!

I love to pose with my new friend Teddy Bear!!

Saying a prayer in the chaple!!! Lord, Please heal our little boy!!

Ok, it's time for school. Mama had to get some educational time in with me so we headed to the library for some reading. It's always nice to read a little Elmo and Winnie the Pooh!!

Oh yeah, and Mama had to stop off in the pumping room a few times....That Alex is sure lucky that Mama wants him to have the good stuff.

Playing Music Box Dancer with Daddy...Yep...that's right, my dad, the pilot, knows Music Box Dancer!!!

Sticking my tongue out with Daddy is fun!!!

End of a long day (Tuesday) waiting for the shuttle back to our hotel and we need some rest...can you tell???

Tuesday, January 20, 2009

Here's the plan...

Today was a long 7 hour test day. We checked Connor in this morning at 9am to St. Mary's Hospital where we headed up to the 6th floor to Nuclear Medicine. He was administered a radioactive sustance that they proceeded to watch travel through his body for 7 hours. This test is called a gastric emptying study. In typical individuals you would see the stomach empty between 20-40% after 1 hour. When we heard from the doctor this evening with results, she was concerned that Connor's emptying was "rapid". In the first hour, Connor's emptying was 80%. By two hours in was 87%. This could be consistent with his symptoms of pain, vomitting and discomfort when having a bowel movement. This is called "Dumping Syndrome."

Because of the results today, we have been told to admit to the hospital tomorrow as an inpatient and he will be observed with his normal feeding schedule. During this observation, they will test his blood glucose levels after each feeding and during the episode. These results should direct the doctors as to the course of treatment if this is dumping syndrome. If it is dumping syndrome then we will travel down a different course than originally planned. If it is not, then we will continue with the plan which is following through with Upper GI's, Lower GI's, Lab work, and x-rays all done under sedation on Thursday at the hospital. We will definately know more tomorrow, so for tonight we will hold off on posting the pictures of the day. We must let Connor get to sleep and us too because we will board the hospital shuttle at 6:30am. We will have computer access tomorrow so we will post pictures and information there. Please continue your prayers. We definately came here to get on the right path and to find out answers. How we have hoped and prayed for a miracle of healing, but maybe it is a diagnosis that we will recieve. It's all still in the Lord's very capable hands.

For tonight, Lovebug Hugs,

Monday, January 19, 2009

Events of the day!!!!

Little Bug did not want to go to bed last night...He was up until after 11pm. What a stinker!!!

Connor in his bed...but not wanting to sleep!!

Randy got creative with the way we set up Connor's sleeping quarters. We hung a blanket up with wall tacks to create a barrier so he sleeps in front of the bathroom area and he can't see any light from our area. We played his nighttime sleepy CD from home to make him feel comfortable...let's hope he konks out before 11pm tonight!!!

Just before heading out to the skyway to our appt.

In the hallway outside our appointment area. Mayo Bldg. floor #9

Mama's filling out the book of information on me....WOW...there's a lot she has to talk aobut with the doctor.

Daddy and Connor found an old antique scale....I think Randy's surprised how much Connor has grown...Mama wouldn't even go near the scale...She says posting all these pictures has renewed her energy to drop the baby weight!!! Hee Hee

Daddy and Connor playing in the waiting room before the big appointment.

Here we are waiting for the doctor to arrive in my examination room.

Here we are in the new pediatric floor waiting for the x-ray technician to come and get us.

Mama does a good job of undressing me quick for all these things...

Don't I look cute in my paper outfit!!! Hee Hee...I'm so silly!!
Happy family waiting in the X-ray waiting area.
I'm done with my X-ray and I get to get back in my own clothes...Let's go back to our hotel and play now.
Well, that was my day today. Daddy and Mama are still frustrated with the process here, but we're gonna do our best. Tonight I am fasting after 8pm so I won't get my tube feeding through the night. I will go into the hospital Tuesday at 9am for what's called a gastric emptying study. It will take about 7 hours of x-raying every hour and a half. We'll let you all know how it goes.
We've met lots of people that we need to be praying for. Peter and Wanda need our prayers as do our new little friends Hannah and Addison. We also met a little girl named Anabell that stole our heart. She's a cancer patient and she's so cute. Everyone here has a story and they all need our love and prayers too.
Lovebug Hugs,

Frustrations are setting in!!!!!!!!

I am sitting here in the waiting room of the Mayo clinic after Connor's 1st evaluation with the doctor. We are frustrated because they don't seem to have any openings for his procedures until Thursday or Friday which will potentially extend our stay. We said from the beginning that we would do anything for Connor, but it will be frustrating to sit in a hotel for 3 days doing nothing.....waiting!!!!!!! We're here, let's get things done!!!!!!! Ugh!!

The appt. was uneventful in the fact that Connor was a little ham and delight. He didn't have any of his episodes to "show" the doctor, so everything was simply a report of information. We have been hoping that someone would be able to see what Connor goes through to sympathize with his plight and to understand the seriousness of his problems.....but no, not today....he's in rare form which is nice, but frustrating to say the least.

Medically speaking they are looking into doing upper GI and lower GI tests as well as blood work, liver function, thyroid function, gallbladder function, pancreas function, gastric emptying studies and the like. We'll keep you posted on our progress...right now it looks like things aren't going as smooth as we would have liked. But.....we will remain positive and prayerful that we're going to get somewhere here.

Lovebug Hugs,

Sunday, January 18, 2009

We're Here!!!

Our great adventure has begun and we are safe and sound in Minnesota. The trip went well and Connor did quite well on the plane and shuttle ride today. We are going to get some sleep and prepare for a big day tomorrow. Here's the pictures of the 1st day of our journey.

Just getting dropped off at SeaTac at 5:45am!!! Wow that's early for a Little Bug!!

Daddy's giving Little Bug the drill on checking bags and gives Mommy a hard time that she's overpacked....In Mommy's defense, she just had to have outfit options for me, you never know how we might need to dress. Options are always good in Mommy's eyes!!! Hee Hee

Ridding the tram at SeaTac to gate N11...Whee...........This is fun Dad!!!

Getting ready to go through security...I can't believe they make you take a 3 year olds shoes off!!!

On the plane making our reservations for the Go Rochester Direct Shuttle.

Waiting for the shuttle in Minneapolis....I'm so tired!!!

Playing on the floor in our hotel room. Hey guys, can we go to the pool soon!!!

We'll post more tomorrow. Keep praying for us!!!

Lovebug Hugs,
Randy, Lori & Little Bug