Monday, August 31, 2009

1417 miles and we made it in one piece!

We are heading on a vacation, yes a vacation. One of my least favorite doctors at primarys told me that if we take Owen home we will never have a vacation. So this is for my two buddies at primarys..

August 17, I rented an RV and wanted to get started on our big adventure. Realizing we were not packed and the night I would probably have, we waited for the next day.

August 18: We left for Sheridan around 9 am. We traveled up through Jackson and had lunch there. During the first few hours of the trip, Abby would keep reminding Owen that we were going the opposite way from the doctors.

Gayle, Bentley, and Abby in front of the Tetons.

Traffic came to a stand still just before Moran Jct, I figured it was a wreck until the park ranger told us there was a bear. So Gayle and the kids played tourists and got out to take a picture. Park rangers have to be so patient, they were telling the crowd that the bear had run off a pack of wolves to eat this dead elk. One guy pipes up and asks what runs off bears, confused the ranger told him another bear. Gayle and I laughed for the next couple of hours on how I would have responded to the curious little mans question. I more than less would have calmly said " my dense little friend, beings a bear is almost at the top of the food chain, a rifle would probably run that bear off."

Here is Old Faithful, and it is still faithful. It would let out a little steam every now and again and my poor 6 year olds attention span was running thin. After every spurt Abby would look back at us and say " was that it?".

It was nice that I had already been to Yellowstone, so I could stay in the rv and tend Owen. We got Owen out at really big stops but most of the time it was Gayle and the kids. We got the kids some cameras so that they could take their own pictures. You would have thought that film was going to expire, poor Abby would take pictures while she was walking. I guess that was the fun in having them. We stayed the night in the park on the East side to give us a head start to Cody.

August 19: We started the morning checking out the falls in Yellowstone and then headed to Cody. We stopped in Cody for lunch and some quick shopping. This picture is forever in my mind called anxiety pass, because that is what it gave me. We went through Lovell and there was a flashing sign saying steep grades ahead, super trucker me thought I have seen all kinds of steep grades. Let me tell you this is the most extreme grade road I have ever been on! We stopped twice to let the motor home cool down and calm my nerves. We pulled the pass doing a whopping 15 miles an hour.

At the top of anxiety pass we saw this sign. Gayle looked over at me and said " that is the reason we haven't passed any campers." There was a reason they had three runaway truck ramps and two brake cooling pull offs. The smart rv'ers went down to Greybull and took the easy pass over the hill. We got down off the beautiful bighorn mountains and went into Sheridan. Having a camper night the night before we got a room in the motel where our calves were selling the next day.

August 20: Our calves sold and I am still trying to figure out if it was the trip or the price that our calves sold for, that was causing my nausea. Probably the price, so we headed to Gillette where mom and dad had been staying. Their motel had a water park built in it so we stayed the night with them and went swimming.

We put Owen on some blankets and on a table next to the pools. He was content as a bug.

Bentley and Abby on the lazy river. They tried to wear out the slides before we left.

August 21: We woke up to an alarm on Owens concentrator. It was the first machine malfunction of the trip. I had packed some tanks but only enough to get us home, not go on with our adventure. We called around to some of the home medical supply places and lincare offered to sell us some tanks but we had to have a prescription. We called our Dr in Evanston and the first thing she did when she got to her office was call lincare. I think Depalma was sent to Evanston for a reason and we are extremely grateful for her. We had issues with lincare trying to get Owen home, surprisingly they helped us out and brought us more tanks.

Devils tower was simply amazing. I was going to skip this stop because it was off the beaten path, but I am glad I didn't. That huge pillar of rock is like I said, amazing.

Off to South Dakota we went. Wondered why all the bikers go to Sturgis, stopped in Keystone and finally made it to the presidents. That is the first time for all of us and it was amazing!

Crazy horse monument is ten miles down the road so we stopped there. I turned at the light figuring on getting a picture and not paying to get in. Well someone was thinking that same thing because there is a median in the road leading up to the pay booths. Dukes of hazard was running through my mind until the nice man at the booth let us go in for nothing. So that saved the motorhome from jumping the mound and flowers in the middle of the road.

We stayed that night in Custer, SD.

August 22: We got up and headed for home. We made a few stops in Wyoming and finally pulled into our yard at 9 pm.

Other than the concentrator, Owen and his machinery worked flawlessly. He would get upset when we stopped, he liked looking out and the vibration of the road. We saw some really pretty country; the kids saw a lot of animals in the park; I know for a fact that an RV can make it up the pass between Lovell and Sheridan; and I could move tomorrow to the black hills, some thing about rolling hills and junipers that beckons my soul.

Thursday, August 13, 2009

Sketches of Owen by Sadie Payne

My good friend Sivi asked a local artist, Sadie, to do this drawing for us when we were still in the hospital with Owen. It is amazing and we love it. I believe Owen is always this close to our Savior.

This drawing of Dr. Chan and our Savior with Owen takes my breath away every time I look at it. I asked Sadie to do this about a year ago and she put so much work and heart into it. It couldn't be more amazing! After I picked it up I remembered I wanted a title of some sort but the perfect words didn't come until later. The day before we went down to SLC for his surgeries I had a neighbor entitle it "Guardian Angels" in calligraphy, it was perfect.
Thanks Sadie!

Sunday, August 2, 2009

OH, What a week!

Monday: Gayle schedules Owen for ear tubes and remove his adenoids surgery for the 19 of August.

Tuesday: Gayle calls and tells me that she is having problems suctioning Owen and not to leave the vicinity. I went home to see what was going on, and the joy begun. It was like someone hit the code button in our living room ER. The ventilator started giving us issues, the circuits were giving us issues, the trachs were giving us issues, and my anxiety was giving us issues. After changing the vents four times, the circuits three times, and two trach changes we called Primarys' for backup. Between a few changes I hooked Owen up to see if he would vent and it almost seems like he was telling us that it still wasn't right. I hurried and hooked him up to the bag when his sats went under 50. I was bagging, bawling, and telling Gayle that I was not going to get him back. I looked and his sats were in the teens. Gayle came over, grabbed his foot, and moved the sensor slightly and it jumped back up to 50 and started climbing. That has always been a fear as a EMT not being able to revive someone. After Chris at Primarys' said that we had done everything she would have done and to start towards Salt Lake, Gayle and the kids dropped to their knees. After a wonderful prayer asking the Lord for guidance with Owen, Gayle thought of one more trach that isn't like the others. We put that trach in and off and running Owen went! After the whole ordeal, we figured that Bentley and I had bagged Owen for over an hour. And it was a wonderful opportunity to find out Evanston really isn't prepared for an emergency with a kid like Owen and we have some work to do. Mentally, physically, and emotionally exhausted we conquered that day.

Wednesday: We waited most of the day to find out when we could have Owens trachea scoped. Between Chris and us, we figured there might be a blockage in his airway as to why we had the Tuesday we had. We also hoped that while Owen was under they could do the tubes and adenoids.

Thursday: 12:15 at Primarys' preparing for surgery, Owen finally goes in at 2:20. We called Dr. Chan to come and see us. 3:00 along with Dr Chan we sat in the waiting room for Owen to come out of surgery. We talked to the surgeon, Dr Grimmer, who is the best, and he said that Owen did great. They called for one parent to go back, Gayle left. Dr Chan looked at me and told me that he wasn't a parent and went back too. Gayle told me this after Owen got to his room. I guess the nurse turned to Dr Chan and told him that only one parent was allowed. Finally turning far enough to see his tag, Dr Chan bluntly told her he was not a parent. The nurse apologized and told him that she needed to get her foot out of her mouth. Dr Chan smiled and said I am a neonatologist. We laughed all night thinking she was going to kick one of the top NICU doctors out of Owens room. We also laughed because there Dr Chan sat with us in the waiting room and listened intently to the surgeons report. They took Owen to a new wing of the hospital for vented children. Which was great because Abby and Bentley could come in and out. He had is own room and nurse for the night.

Friday: We got the discharge orders and left with Owen around 3.

Saturday and Sunday were really uneventful, that is how we like it. Owen is feeling great and doing great. Thanks to all the friends that stopped by. It seems there was someone in his room all the time, we made really great friends and really appreciate the support.

Owens' Suite

We had an appointment at Shriners last week the 22. "Aunt" Marquelle (Owens' first nurse) met us for lunch at Shriners. We tried to talk her into coming to the game and batting her eyes at Trevor and Brady, but she had school work. Thanks Marquelle for coming and meeting us in the hospital and it will be nice to have you as a NP. Owen had an appointment at 10 and we left at 3. That gave us enough time to go to the hotel and get him on the humidifier for a few hours, then to the Bee's.

We reserved a suite at the baseball game that night so that we could take Owen and invite some family. Bumble, the mascot came by to see the kids and Owen. Later during the game the VP of the Bees came by and gave Owen a signed baseball from all of the players. They are the neatest people we have been around.

Brady and Trevor came too. They aren't family but pretty close. We had barbeque brisket and chicken in the suite, Trevor and I gave Brady a pretty bad time for being the only one with chicken. So he went back for seconds to get some beef.

We had a great time besides the long day at the hospital, Trevor getting lost, and the miserable heat. The next day when we came home the van read 106 and the bank sign said 109. It was great to come back to the high 80's.