Wednesday, October 29, 2008

We have a DATE people!

I got some exciting news yesterday from Linda, the scheduler in the Cardiothoracic Surgery department at Primary Children's Medical Center! She has been working on getting Burke scheduled for heart surgery in the month of November. I think the doctors finally are thinking that Burke might really need this surgery. He was going to be scheduled for December 2, but I told Linda that he could not last that long and that he would for sure get sick before then. She said she would talk with Dr. Kouretas (Burke's surgeon) and figure out an earlier date. It took them awhile to rearrange everyone's schedule. They said it would take some effort on their part to get everything situated, because they were trying to work in two busy heart surgeon's schedules and all the doctors that need to be there that day as well. They also must have moved someone else's surgery date to another day to accommodate Burke. I feel bad for that person, and for his mother. I am so sorry that they have to go through more time just waiting to get in for heart surgery. I would go insane in they changed Burke's surgery date. That is my selfish side shinning through, then I would feel so bad for that baby, and would want that to happen if it was the Lord's plan. I am truly praying so hard that this is the time for Burke to get his heart surgery. We are hoping and praying that he won't get sick in the next week.

We are scheduled for Friday, November 7th for and MRI and Echo, Monday the 10th will be a clinical exam and Pre-op work and labs, and on TUESDAY, NOVEMBER 11, 2008- HEART SURGERY!!! (can you tell I am anxious for this to actually happen?) There is a chance still that they will not do surgery on that day. If they found something in the MRI or other testing to make them not comfortable with doing surgery now, they would postpone us or refer us somewhere else.

So, we have a week and two days until we leave for testing. I am hoping and praying that he can actually go that long without getting sick. Because he cannot be sick for testing and or surgery. They will have to put him under for the MRI and echo and they cannot do that if he has a cold or something else. I will know that things will happen according to the Lord's plan, but I am hoping with all my heart that it His plan has Burke getting his surgery when it is scheduled this time in November. We have been waiting a long time for this and hope and pray that this will work out. Will you all pray for Burke? That he will not get sick and his body will be strong and healthy for testing and surgery. Thank you for all those who are praying for Burke already, that means so much to me. They have helped so much, and for all those who have helped me with Burke in the past. Thank you. Thank you. Thank you.

Saturday, October 25, 2008

Glad ya came back, Fall

I'm glad fall came back. Probably the more correct way to say it would be; I'm glad the storm that came through Boise a couple of weeks ago didn't stay, so that we could have our regular fall season. Though I am learning that Boise's fall weather is rather cold. Colder than my California-born temperature would like. But, the sun is still shinning and I am able to do this with my kids......Okay, you can't even tell where we are at! We went to the corn maze! And we had a blast! I should have sent Emma with her preschool, group which went the day before, but since we don't know when surgery is scheduled for Burke yet, I have to be careful about how many kids we are around and in come in contact with. So, I took the kids myself and we had such a fun time! (And yes both of my kids are stuffing their faces with skittles, I know.)The half smile- I love it!I'm glad Emma and Burke could get saddled up and try and lasso a fake bull head! Burke loved the "corn box"- very clever idea. Though we were still pulling corn out of Emma bum crack like we would if it was a true sand box. Much cleaner though. Emma rode on Max and Burke on Greta below on the awesome cow train.These go-carts were fun!

For those who have not been to the Idaho Maize ( it is worth checking out! It is awesome! We got there just before it opened and there were only a couple other families so we basically had the whole place to ourselves. It was great because it wasn't ever crowded. It was really cold the day we went, but we had a great time. The maze from above looks like the Presidential Nominees, Obama, and McCain. We took the left side, (Obama side) I know, I'm not on the left side, but I was told that side of the maze was shorter, so I took it, with kids do you blame me? We also rode the hay ride, picked a pumpkin from the patch and pet the animals at the small petting zoo they had. Great day out with the kids. And completely worth it the drive out to Kuna. It is pretty out there too, I had never been out there before.

Tuesday, October 21, 2008

Life with oxygen

"The Missile" as it is right now.

I thought I might record some of my thoughts about our experience with having a child who wears oxygen 24/7. Burke has been on oxygen since June 2008 because he has congenital heart disease and as he grows his oxygen saturation levels are slowly declining.

Our lives have been changed since dealing with the oxygen. We have a couple of names for our dear friend oxygen. "The Tank." "Flammable object." According to my sister Liz it is "the missile." Tyler coined it "pain in the a**" (sorry mom and dad- it was way too funny and way too true to leave out). And it is so true. I don't mean to be the pessimist but we have had to deal with Burke's very heavy, awkward, and totally pain in the butt side kick for four months now. We know that it is very necessary, we know that he is benefiting immensely from it, but I can't rave about it all the time when it is a lot of the times the cause of frustration at our house.
At first, it was hard to deal with because it was a new thing to all of us. Burke kicked and screamed (very loudly) at the hospital when they wanted to put it on him the first time. We figured out the trick was to put on the cannula (that is what the tubing is officially called, there will be a test afterward, so please pay attention to the new terminology) without any oxygen blowing through it. We just let him get used to the fact that there was some little plastic tubing up his nose. Then once he was used to it we turned on the oxygen flow. Because it is startling at first to have air blowing up your nose. Anyways, I thought I was pretty cool because I was the one to tell the doctors and nurses that at the hospital. I think I just stole the idea from Ty when he tried it a couple of months previous when we were given oxygen for Burke, but he ended up only needing it every so often.

When we left the hospital in June we were convinced we could do this. Master the oxygen. Little did we know what lie ahead. No one ever considers what it takes to successfully deal with oxygen tubing. I didn't at least, but it is a learned skill. It takes practice. Because there were many times when our poor Burke was pulled back or had his ears totally bent over because the cannula was being pulled too tight. It bothered him at first. But now, he is mostly immune to it and can go pretty far and pulls it pretty tight on his face so that his whole face is contorted. I know it is totally sad, but I say good job, Burke, for not letting anything, and I mean anything, get in your way of what you really want, even if it is only a little toy you are sacrificing your face over.

Gradually, we got pretty used to Burke and the tubing. I would just have to be in the same room as him at all times. No biggie. I couldn't get anything done, I couldn't do anything around the house and I couldn't go anywhere. Not a problem. (wrong!) But we did managed because then he was only crawling. He was mobile, but not as mobile as he is now.

Then there's night times. How does a child sleep with oxy
gen on? Very carefully. The second I put him in his crib he automatically pushing the cannula up on his nose and does not let me put it back in his nose at all. Sometimes when he is totally out he can stand to let me put it back in his nose but for the most part the oxygen just hangs out on top of Burke's nose all night long. But that is to be expected I guess. Now that he is more mobile and rolls around more to fall asleep, he gets pretty tangled in the tubing. I feel so bad but, he is a trooper. He doesn't complain too much about it. And recently he has figured out the way to get mom back in to check on him if he isn't wanting to fall asleep. First, he throws off his blanket. How dare he. Because we all know, including him, he can't possibly fall asleep without his blanket. Next he pulls his oxygen tubes though his crib and finds the connection part. And he starts pulling. And yes he now successfully unhooks himself from the oxygen. How really dare him. And when I come in to check on him he just looks at me with the unhooked oxygen in one hand, mumbles something, then looks at the tube, then back to me.

One more thing about night time, is his pajamas. Now that the weather is getting colder I feel the need to dress him in his warm jammies with the footies. But wait, I can't. He doesn't get tangled as much if we put the tubing down his back under his shirt or onesie. But there is no outlet for the oxygen if he is all zipped up in the footed jammies. Problem. Something the normal person would never think of when putting their child in the nice, warm and oh so comfy footed jammies. I figured it out one day. I decided to put his onesie on top of his footed jammies instead of underneath. Then I could have an outlet for the oxygen so he wouldn't get tangled in the night time and potentially suffocate . It is pretty ingenious, I'd say. Okay, nerdy, but very practical, and that is what I am going for these days, practicality.
These were just taken tonight to document his "practical" sleepwear. It is more tacky when the jammies and the onesie clash better than these above. But you get the idea.

Bath time. Yes, he has to keep it on during bath time too! We flip in over him every time he turns. He now starts to move it out of his way when he sees the chance. What else. Oh, traveling with oxygen. Yeah, that is fun. Taking "the tank" anywhere is a pain. The first time I took him to the store with the oxygen I put his whole tank and the cart in the grocery cart. I had Emma that day too. And I went to Wal Mart. What in the world was I thinking. The tank and the tank's cart plus Emma took up the whole grocery cart. And I actually thought I could conquer Wal Mart? We did it and it was a total pain because all the while I am dealing with back pain because of a back injury that happened in February of this year. Now, I have learned. I take the oxygen out of it's cart and I just put it directly in the bottom of the grocery cart. I shorten his cord so it doesn't get pinched and I am ready to shop! Problem solved.

This oxygen doesn't stop me from getting out. We go on walks, bike rides, and four wheeler rides. We just strap it on the back of the ATV and we are off exploring the ranch like it was nothing! We also go to the park and we love it. Burke does really well and sometimes I just have to detach him from the cord so he can go up the stairs and then down the slide. I am so glad that it doesn't stop him from being so curious and determined.Here is The Tank, Burke with his cousin Michael.
Burke riding Hawkeye. See the cord, it's everywhere!

Since Burke has recently learned to walk, my job has gotten a little trickier. I now have to be faster at giving him slack and moving the oxygen tank closer to him so he can go where he wants to. There is never a dull moment especially when he likes to go around our island in our kitchen so much. I have to flip it back and forth over the island while trying to cook dinner. Craziness is what I call it. Then another thing you don't think of with a normal child is that Burke can't get close the fire. So, I have to keep him away from our gas stove and oven as much as possible. That is hard because he wants to be next to me while I am cooking. Needless to say a lot of the times while I am cooking he is eating in the high chair. It works pretty well.

I think I have covered most of the aspects of our lives that are changed from dealing with Burke's oxygen. Honestly, it is harder than I would have ever thought. It tests my patience and I have many times cried over the dumb cord because it seems to get caught on everything. I can't just walk out the back door very quickly because if I do, the cord gets caught on the door nob and pulls us both back. I guess I hate those moments because I end up hurting Burke and I get mad at the oxygen because of my bad judgment or move. It doesn't hurt him very bad at all it mostly scares him when we get yanked back. I am definitely learning patience. There is a reason we are given this trial to deal with. Heavenly Father knows what he is doing and he is teaching us so many things, of which I will forever be grateful for. But at the end of the day what I am most excited about, is that hopefully in a couple of months or so, after he has his surgery, that he can be free from this oxygen once and for all. That he can just run and play like any other 14 month old. That he can just be free. That he doesn't have to sit in the stroller because sometimes it is too hard for mom to deal with him if he gets let out. I want him to be let out, never to return again to the confining stroller. He is so determined to conquer anything that is throw at him, that I know he will over come this and be let free one day. He is a fighter and he will recover from this surgery like it was just a bump in the road. And then he will be everywhere. And when he is everywhere I want everyone to remind me, if I complain about having to chase him everywhere, that I wanted him to be free. That I don't ever want this hindrance on my child or anyone elses' child either. The oxygen is necessary and I am grateful that he has it, because it is buying him time to get bigger for the next surgery. But, it is truly one of the hardest things I have had to deal with in my life, on top of everything else that is going on in our lives right now. We have a child who has congenital heart disease. We have to deal with that all the time. The stress never leaves. And that is okay. We would never trade him for anything. He was meant to come to our little family and we are so grateful he did. We are looking forward to the day where he is able to do the things physically, that he otherwise can't do, right now. We are looking forward with faith in The Lord that things will work out for Burke and the surgery he will need and hopefully receive in November. We should know the surgery date soon and let you know when that will be. This post is long. I am not sorry, because this is what needed to be said about my life, right now, today. The end. But not for the oxygen, not yet at least. Not yet.

Wednesday, October 15, 2008

Testing postponed, yet again.

We should be down in Salt Lake right now for testing on Burke's heart, but we aren't. We are still here because Burke got sick about two weeks ago, and has not recovered enough to be cleared to go down for testing. We are hoping for testing to be rescheduled in about two weeks, so we will let you all know when we are heading down to Utah. The day they want to do Burke's surgery and testing is booked and so they are trying to rearrange the schedule to fit him in. They obviously think that the time in getting near to when Burke needs his heart to be fixed or they wouldn't bother with rearranging the whole schedule.
We are just anxious to get these tests done so that we can finally know what is going to be done with Burke's heart. He will have surgery of course, but we don't know what specific surgery will be performed on him. We have great surgeons and doctors on our team, and are excited for what can be done on Burke's heart to help fix him! Thank you for all the prayers and fasting done in Burke's behalf. We'll keep you posted!

Saturday, October 11, 2008

Is Fall gone, already?

I grew up in California where winters never included us wearing snow gear (unless we were skiing or going to the mountains or something of that nature). It only snowed probably three times in my hometown my entire life. One or two when I was little ,and once I specifically remember in high school- I was so happy to escape from Chemistry-at least for 15 minutes or so while we all went outside to enjoy the snow flakes. Winters in Northern California were mild, nice, rainy of course, but no snow and no freezing weather for long periods of time. I wish I had pictures of fall time in California. Especially the maple trees by our pond. They are just beautiful. Mom and dad if you would like to humor me and send some pictures through the email of the fall time back home, oh, how I would love it!!
Oh, how my life is different since I live in Idaho where it snows in OCTOBER? Yes, you heard it, and for all you who witnessed it yesterday, it actually snowed here! It's like I live in Alaska or something. It is the beginning of October for goodness sake! Fall time. Autumn leaves should be falling, and the colors should be changing to beautiful shades of yellow then orange, red, then brown. NOT from green straight to BROWN!! I have been totally jipped of fall. I love fall. I love the leaves, the colors. I especially love the smell of fall. But where did it go? Is it going to come back soon? I think I heard that the weather is supposed to be nicer next week, but I was totally caught off guard by this cold weather. Don't get me wrong, I like the winter time, but I need the seasons to change more slowly. I want to enjoy fall time before I have to be bundled inside my house all the time. Does anyone else feel that we have skipped over fall time? I hope it comes back at least for a little while. Last week was beautiful and I hope we get some more of that weather at least for my kids' sake. They do not like to be cooped up for very long (neither do I, okay, it's probably more me than them). Last week I got some great shots of Burke and Emma playing on the swings at G'ma J's. This post is pretty all over the place, but I was just sharing some of my random thoughts about this week. Maybe it's the crazy weather doing crazy things to me. I don't know. This is Emma's first time swinging on the rope (more like chain) swing at Grandma's. She was so brave. She actually let me push her too!
Burker's turn. Emma is such a little mommy as you all know, and she never gives up a chance to push her brother on the swing. He was obviously loving it.