The last 5 days....

{ Warning...this is incredibly long...that's what I get for not updating for awhile...it's been a crazy couple of weeks}

Were incredibly taxing for our family and especially Matthew. Let me back up just a bit first. To the weekend of the 21st. Matthew was having increasing seizures and in collaborating with his doctors in MN, the decision was made to go to the ER 2 Saturdays ago to get IV fluids and rest his belly. We stayed through the weekend and saw GI on Monday and we made the decision to try a GJ tube for Matthew due to his increasing vomiting and also not gaining any weight since December. His food can go in the "J" port and that will allow him not to vomit his formula because that enters the small intestine vs the stomach. We will still work on oral feeding and giving him some food in his G portion of his tube to keep his stomach active. But we need to put some weight on the little tiger.

All was well and good for a week. Then, last Saturday (the 28th) Matthew started vomiting more again, but this time is was just mucousy..and then he couldn't stop. He would just retch; which is not fun to watch either. Each day it got significantly worse. Tuesday night after I got home from work, I stayed up all night long with him. Wednesday morning, we took him to the GI's office for them to check him out. He consulted with pulmonology because he was thinking he may have pneumonia. His chest xray was normal. We know that whenever Matthew gets intubated (as he was during the GJ placement) that some reaction is set off in his body that makes him produce massive amounts of mucous; which he has a hard time dealing with. I'll save you all the rest of the details; but suffice it to say, it's not fun for Matthew.
So Wednesday left us with little answers and I took off for work again as soon as we got home from the dr.'s (with no sleep yet). When I got home shortly after 1 am, I could hear a weird sound coming from Matthew's room. I ran in, flipped on a light and he was choking; on his own vomit, and Steve was sound asleep in bed. I quickly flipped him on his side, cleaned him up and got suctioned out. He (and consequently me) then spent the whole night awake, he couldn't quit vomiting.

Thursday, he woke up with a fever. I threw in the towel. That was it. We were headed to the hospital. I was sure he'd aspirated the night prior and had pneumonia. We were admitted to the hospital on Thursday. Thursday day and Friday night were both pretty rough for him. He was on and off oxygen. He threw up a lot. We started a new medication to help with what is known as "cyclic vomiting". It makes him drowsy, which is not especially good when he needed to be alert as possible to cough and breathe. When he was on oxygen Friday night, the on call Dr. was called and she ordered lab work and a chest xray for the morning for Matthew.

Saturday morning, Matthew looked like a new kid. He was off oxygen and had slept fairly well. Lab came to draw blood and then, THEN xray came. Matthew HATES xray's; because he hates being held down. He HATES his arms being held above his head. I immediately jumped up and started talking to him and getting the head of his bed lowered so they could do the xray. I said, "let me know where you want me to be". And the tech immediately replied, oh you can just go over there {pointing to my bed}, we will be done in a second. I chuckled and sarcastically said (cuz I was WAY overtired by then) "well, then let me know when you want my help, because he is very difficult to position and doesn't like his hands being held over his head." She again, quickly replied that they didn't even bring me a lead vest, so I wouldn't be able to help. I had smoke rolling out of my ears. I stood up and walked out of the room for a second. I went to the nurses station to put my dirty breakfast tray away, and told his nurse that they wouldn't let me help. She rolled her eyes and said, " I don't know why they do that". I then went back in the room and they were still struggling with Matthew. He was crying and arching and twisting the best he could. The tech had his arms pinned above his head and the other tech was trying to position the film on the side of the bed. They finally got the picture they wanted and then had to do another with the film under his body. They positioned him for that xray, and he was still screaming and arching. The second tech would just grab his right arm and pull him with it towards her to position him. I'd had enough. I asked them if they were done. They said they were and I picked up Matthew. I held him and was comforting him and they offered to help me get him back in bed, twice in fact. I couldn't even look them in the eye. I told them no, I was fine. I just stood there and held him until he was almost asleep. When I layed him back in bed, his right arm just flopped on the bed. I noticed it right away. I took his limp arm and tried to lift it over his head. He didn't fight me with it, he just screamed. I ran and got his nurse and showed her. She immediately called radiology.

They were back in our room in 15 minutes. The had 3 techs this time. They said the pictures didn't turn out well, and inquired about his shoulder. I told them (it was more of a yell) that they were not touching him. Even if it meant no xray. I would NOT let this happen again. Both tech's were a little defensive at first, but I stood my ground. They WOULD NOT touch my baby. NO WAY. They offered to let me position him this time (hmm...funny) and a different tech would help me. Both tech's profusely apologized, but I was furious. As soon as the scan was over, Matthew immediately fell asleep.

The pediatrician was sent to our room next. She said it was a good sign that he didn't cry when she touched his arm, even though he was asleep; but order shoulder and arm xrays just in case. She said we could wait till he woke up to do them. She said if he had a good afternoon we could go home in the evening. Both he and I took a three hour nap.

When I woke up, I felt a bit sheepish. Certainly there was nothing wrong. It was probably just sore. We went down for the xrays, and the first techs were no where to be found. We had 4 (!!yes, 4!!) techs in the room, and they were doing anything I asked. I did all the positioning and they were super patient with him. (I'm sure they'd been warned). Two hours later the pediatrician again stopped by and asked how we were doing. From a vomiting and oxygen standpoint, he was doing well, but Matthew still wasn't moving his arm and he had whimpered when we did the xrays of his arm. She went to go look at the xrays and when she came back she sat on my bed and told me the horrible news. Matthew's humerus was broken (the big bone of the arm) and up by the shoulder. I was livid. She said she would talk to the orthopedic docs immediately and let me know what they said.

I called Steve, and if I thought I was angry, it didn't even compare to Steve. After we talked, I told him we'd be home soon. As I was packing and waiting to talk to the doctor again, Steve showed up. He was so angry. I've been married to the man for 14 years, and have NEVER ever seen that side of him. Papa Bear was here, and it wasn't good. After much talking on his part to the house supervisor and the administrator on call, he was able to speak to the tech who we believe did it. He wanted answers. I'm not sure he got the answers he wanted, but he got to at least talk with her. We was angry, but remained pretty calm. His words were strong though.
Being it is was the holiday weekend, I know not much will happen until today. I would imagine I will be speaking with someone from the hospital today.

The ortho said he would splint it on his own, or we could wrap it to close to his body. They let us go home and said we can follow up with ortho in a couple weeks and it should be completely healed by then.

So that is it, in a really big nutshell. We have been home two days, and while he is fairly uncomfortable when we move it, he doesn't exactly like it wrapped either. I am still trying different ways to wrap it to see if he'll tolerate it better. His vomiting has majorly decreased and he is completely off oxygen. We've seen a couple smiles even.

I get sick to my stomach when I think about what happened. I should have just jumped in there and made them get me a vest so I could help. He always does better when I help. But, I can't beat myself up. It wasn't my fault. They were pretty adamant they were getting the xray, no matter what it took. Unfortunately, it cost Matthew. I can guarantee you it will NEVER happen again. And I hope the tech has learned a HUGE lesson. I know the hospital will do a full investigation, and I will make sure of it.

Sweetest two littlest

Mason cheering Matthew on while we work on "trunk control".

Ahh...I love these two littlest of mine

School has started!!

Last Wednesday, school started for our kids. Here is our traditional "1st day of school on the porch picture"

Micah, 7th grade

Megan, 4th grade

Mason, 1st grade

Double Digits

This beauty turned 10 years old today! Can't believe my baby girl is 10!

Happy Birthday, Megan!

Niagara Vacation: part 3

After our morning and afternoon at the park on Thursday, we decided we wanted to go take a ride on the Maid of the Mist (a 20 minute boat ride that takes you right up to the falls) with everyone before heading back to the hotel for the evening. On our way to buy tickets we saw a wedding going on. So we decided to "attend" it.

{It slightly creeped me out at the age difference between the two of them. She could not have been more than 25 or 30 and he was well in his 50's}


On to the Maid of the Mist. Here is a picture of the boat fully loaded and heading to the falls..

Below is the best picture I could get while on the boat. I put my camera away shortly after this because we were getting SOAKED! Matthew DID NOT like the wind on the boat and getting wet. He was not a happy camper during this part of the trip.

These are called the American Falls.

After the boat ride, we went and stood up on a observation deck and looked out across the falls..

Then we decided it would be fun to go take the Cave of the Winds tour. This is a series of bridges that take you right down to the bottom of the American Falls and the Bridal Falls. Again, we got soaked! But it was fun! This is the deck that you walk up (I took this picture the day before from the Canadian side)

Close up of the Falls
Steve, Micah, Megan and Mason prior to getting soaked!

Kristen and I

Matthew decided to sleep during this part of the trip, and their was a nice place to park his chair and still be able to look at the falls. Steve and I took turns going up the stairs so as not to wake up Matthew..he wouldn't have liked the water anyway..

After the Cave of the Winds, we headed back to the hotel to change, and then decided it was high time for some supper. We headed off to Bob Evans, a restaurant I had never heard of, but quickly became a fan of. We celebrated Elisabeth's Dad, Donald's, birthday. It was a great ending to our evening.

Niagara Vacation: Part 2

Wednesday we decided we would view the falls from the Canadian side, so we once again crossed the border and took in the views of the Horseshoe falls.

This was an "old scrow" that has been stranded in the upper rapids of the Niagara river since 1918Upper rapids of the Niagara River


Kiddos and Daddy posing at the falls

Horseshoe Falls

Then it was on to lunch. We were so excited to meet up with the Sorensons including Lisa's sister and brother, and the Stamm's for lunch.

Kristen and Lisa, talking

After a late lunch and more walking around we decided to head back to the hotel, and meet up with the rest of the group. We ended up sitting by the pool and visiting till late in the evening.

Thursday, we had planned to meet up with all of the families for a day at the park. What fun to be able to sit and visit with everyone in the same place and get a chance to see all of our children in the same place.Some of the guys, standing around and visiting

Our hydro kids: L to R: Tyler, Elijah, Isaac, Elizabeth, Matthew, Cayman, and Owen

Another picture of Isaac, Elisabeth, Matthew and Owen

The siblings

And the wonderful mommy's: Diane, Amanda, Jennifer, Michelle, me, Lisa and Kristen.

New York Vacation: Part 1

Last Sunday, we headed out late at night to start our first part of our vacation. This year we got the opportunity to go to Niagara Falls, to meet a bunch of families we had come to know via the internet; families who also have a child that is affected by hydrocephalus. Our trip would take 17 hours, so we decided to make a week long family vacation out of it. Sunday we decided we would drive through the night, and see how far we could get Monday before we stopped. I drove through the night and we made it as far as Toledo, OH on Monday. We did, however make a surprise pit stop at our friends, Kristen and Mike's before stopping at the motel. The kids traveled exceptionally well and we stayed in a nice hotel with a pool and let the kids swim for the evening. By 8 pm though everyone was tired and we went to bed early to start our next day.



Tuesday we decided to drive up through Detroit and then through Canada to get to Niagara Falls. Once we got to Canada, we decided to take the scenic route for a bit and drove along the shore of Lake Erie. We stopped for lunch along the Lake and to hike around a bit and explore.

After taking the scenic route for a bit, Steve (aka speed racer) decided the interstate was more his style. So we traveled the rest of the way via the canadian interstate. Their were signed posted everywhere that stated the speed limit was 100 kilometers/hour, but no one seemed to be obeying this law. Steve is never one to dawdle or be passed in traffic and he kept up well with the rest of the people. Good thing I slept during this portion of the trip. I woke up to this :
We crossed the border again into the United States and began looking for a hotel. We had been "winging-it" as far as hotels went, but a hotel was hard to come by that evening. We ended up staying about 15 minutes out of Niagara Falls. We knew Wednesday was going to be a big day for us, as we would be meeting everyone in our group, so we just lets the kids swim and called it a night.