Monday, January 19, 2009

Emma and Daddy

The other day Emma and Daddy wanted to watch the newest addiction at our house- Flicka. It is at the top of my favorite movie list and when daddy told Emma that, she decided it was her favorite movie too. And it is, she LOVES it. I recommend it to those who have not seen it, though I have to warn you, it is not the best made movie, not the best actors, and sometimes has cheesy lines. I LOVE it though. Tim McGraw is in it so it explains why I like it so much. Anyways, Emma watches it almost everyday, and on the days she doesn't get to watch it, she asks to watch it.

So, the other night, Emma and Daddy were watching it, and I didn't want to watch so I was in the other room on the Internet watching the TV shows that I can see on since we don't have regular TV. Anyways, Burke was asleep and Daddy said that he was going to deal with Emma and they were going to just finish the movie and he would put her down after it was over. After a LONG while, I decided to check on them because their movie should've been over already and I found this:Check out her neck- it looks painful. And I can't believe she was still asleep because daddy was snoring like a bear and the music at the end of the movie was blaring. It was so funny I had to capture the Emma and daddy moment. And this is extra fun to see because Emma never falls asleep on the couch to a movie, it was great!

Sunday, January 18, 2009

More Craziness Continued

Burke is about to wake up from his nap, and I want to take this time to continue from the last blog post about our crazy lives. So here goes.

My back has been feeling a TON better of which I am so glad, until two weeks ago when I slipped on some snow at a friend's house. I totally tweaked (sp?) my neck and back. It has been okay since, until two days ago when I literally woke up in the morning to awful pain and could barely move. I would yawn and my back hurt, I would point with to something and my back would hurt. I had to go see my awesome NUCCA Chiropractor (whom I highly recommend- Dr. Stork in Meridian, Idaho). I luckily was squeezed into their schedule that morning and was seen. They told me that one of my ribs is out!! What? I never knew that happened. I thought maybe it was broken? No, I just slept wrong, I did absolutely nothing to break my rib, but no, that meant that my muscle was pulling my rib out of its designated spot in the body. Yeah, who does this happen to, oh, only me! And it happens to me when I have everything else piled on my plate. I don't have time to ice, rest, heat and repeat. No, but Dr. Mix (Dr. Stork's wife who is in the practice with him) said that maybe this is my body's way of telling me that I am over doing it. Nah, couldn't be. I don't have huge stresses on me right now. NO way. It's not like I am taking care of a sick child who just had two major heart surgeries in the past two months, no, I am totally not over doing it.

Okay, you saw right through that one, I am totally over doing it, but that is what I have to do. I thought I have been dealing with the stress of everything just fine, until I happened to sleep wrong (actually on my tummy) and all heck breaks loose and my back gives way. But, the realization I am coming to is that life will go on. It has to no matter what.

So, that was Friday, and then on Saturday morning feeling much better from almost being incapacitated the day before, Burke wakes up with a cold. A cold!? You've got to be kidding! How could this kid get sick when I do everything to keep him away from things that would make him sick. Luckily it hasn't gotten too bad, obviously, or we would be posting from the hospital right now, but it is not too bad and hopefully won't get too bad. He needs to be well for his heart catheter next week which is vital to getting his left branches of his pulmonary artery to grow. He can't have the full repair of his heart until the pulmonary arteries grow. And right now they are growing very, very slowly, if at all. But, we have canceled appointments before and we might have to do it again if he doesn't get better soon.

Tyler and Emma went to the ranch this weekend and Burke and I have stayed home. And since Burke is sick, I said, what the heck I might as well go to church and take him with me. We just sat in the back and tried to stay away from a lot of people. It was great to take him. He hasn't been to church in months. And he has only been to church a handful of times in his life anyways. He did great and looked SO cute in his attire. Thanks to my sister for having a boy who is a couple months older than Burke, Burke has so dang cute clothes! The shirt and pants are from Kyle and the vest he finally fits into and shoes are ours. Here is what I had to do in order to get ready to go to church.
Because I wanted to get in here

I had to get him all situated in this. He needed to be on his feeding tube and now that he is walking EVERYWHERE, I couldn't be sure that he would just sit while I took a shower. So, I thought and thought how I was going to do this, and I came up with this. I have never brought my highchair into our bathroom, but man this is THE way to go. It worked like a charm, and I was able to take a nice hot shower, do my hair and get ready for church and guess what? We were ever a little early for church! YEP, that's right folks I can do anything!
Here is the big church going man!

Our Recent Craziness

Here is what has been going on in our house lately. I haven't blogged in awhile because it seems like one thing after another just piled on our plate without a break. We are surviving it though and as I think about all that happens during my day or over this past week, it is probably good that all of these things happen so that I do not get complacent. So that I stay on my toes in order to be ready for anything and not let it catch me by surprise. Because I am learning I do a lot better when I am mentally prepared and aware for something, or when I know that there is a chance that something could happen. Heavenly Father knows me so well and is prepping me so I can manage taking care of our precious Burke.

Here is a look into our lives at this time. Burke has a feeding tube in his nose that goes into his stomach also known as a NG tube. He gets fed through the NG tube every 3 hours during the day for a total of five feedings a day. The way I feed him is by a feeding pump which looks like an IV stand and you might have seen it in one of the previous posts where Burke pulled it over during the night. The feedings last 45 min. and he recieves about 4 oz. over those 45 min.. Then on top of that Burke gets fed on a contiuous feed all night long. He gets about 1 oz every hour for 10 hours. Let me tell you that the feeding pump alone is a full time job in and of itself. Not to mention that I have to check the NG tube placement everytime I go to feed him or give him his medications. I have to check placement by drawing back some of the fluid from the stomach to make sure it is in the correct spot and that is hasn't moved. Sometimes the tube gets stuck to the wall of his stomach and I can't pull any fluid back. I have to then try and push a couple of cc's of water to check if it is clotted or if it is in the wrong spot. We also were taught when he was first born (because he came home with a feeding tube then too) to check placement by pushing a few cc's of air into his stomach and listen for a swooshing sound and that tells us that it is in the stomach. I do that if I can't draw any fluid back but it is not a routine way to check placement anymore. These details seems to maybe not make sense to some people which is COMPLETELY understandable, and may also seem boring and lengthy to others. Again, understandable. But, I write this to describe what I have to do in order to take care of Burke. I am not writing this to complain, I just need to get this out, so I can get it out of my system and move onto with my day, onto another feeding. Or wait, I guess I have about 2 hours and 15 minutes until I have to start another feeding, because I just got back downstairs from stopping one of Burke's daily feeds. And I have finally become good enough as to not wake up Burke if he is sleeping. He I think is now used to the beeping enough to just sleep through that when I turn off the feeding pump.

So, last week I was worried that the feeding tube was in the wrong place and I could not for the life of me draw back any fluid. So, I had to call David, Ty's brother who is an ER doctor and who happens to live right around the corner from us. I knew this wasn't an emergency, but since he was due for a feeding, I had to get it checked out it see if it was in the right spot. Thanks David for checking it that day, and thanks to magical worker David, Burke's tube drew back fluid on David's first try! Yeah, I had just checked it before leaving the house, and Ty had just gotten home for lunch and he tried too. Anyways, that's how it always goes when you get something checked out, and when the doctor or nurse checks it everything is fine. We had a good laugh over it though.

Okay, so Burke had a great afternoon nap that same day and low and behold when I go and get him from his bed that blessed NG tube was pulled out of his nose. It was still taped to his face, but the part that is supposed to be in his stomach, was now outside of his stomach. On top of knowing that I had to be the one to put it back in, the tube had leaked all over his bed dripping stomach fluid mixed with formula! Yum, throw up smell everywhere.

So, after cleaning up his bed and him, I had to deal with the fact that I had to put it back in. I was taught to put the tube in when Burke was a newborn. And when Burke was in the hospital just two weeks ago, I tried to put it in then because it got pulled out during his swallow study. I tried, and I failed. I tried, and Burke turned blue, purple, and every bad color pointing to the fact that the NG tube probably went down the wrong tube and was obstructing his airways. Not good. And the nurses just stood there and hardly did a thing, while I was freaking out debating on weather or not to take it out. "Should I take it out? He doesn't look right to me. He can't breathe, what should I do?" I said in a total panic while the nurses just held him down and didn't say anything like they had gone mute. So, I quickly took it out and comforted my poor child. So, I told the two nurses that whom ever is the quickest at putting in tubes should put this one in. Of course, the senior nurse tells the junior man nurse (I usually don't have anything against male nurses, because I have LOVED our male nurses down in Utah, but this one-enough said) that he should be the one to do it. OKay, I knew that she was trying to teach him, but come on, don't have some one train on a heart baby who has oxygen for a reason- he already isn't getting enough on his own people. Don't put him through more trauma than his has to. Anyways, he couldn't get it in and told the other nurse to do it and she got it in on the first try and everything was fine after Burke took a little while to recover from that traumatic experience. Okay, so long story, I tried that time, but did not suceed, and I knew I had to do it again, but this time suceed. So, Ty was supposed to come home and help me hold Burke down while I put the NG tube in, but he had to stay at work late, so I chose to do it on my own. The hospital told us to come in to have them put it back in, but there is a reason why Primary's specifically taught me before I left the hospital, so that I could put it in in this situation.

Anyways, I tried and he turned blue again. It was awful and terrible he couldn't breathe and was choking. I regained my strength and knew that I could do it, so I tried one last time, and I did it! Yep, that is right, I put in an NG tube folks. I need to remember to put that on my resume. I was so proud of myself for what I had done. I taped it to his face and though it was not as nearly as good as Tyler's tape job from the week before, but it was a fine tap job and that was that. I had our good friend Angie who is a nurse come over and check the placement just to be sure, and she said that it was in. The only true way to tell if it is in is to do an x-ray, but since we were getting fluid from the stomach, it was most likely in. (And there was NO way I was going to the hospital again just for that).

And I do all of this, and a ton more all because of this little kid.

I was going to write more, but I think I will let you all have a breather, (breathe now) and I'll write more about what else I do during the day/night another day. But before you go, here are some more reasons I am doing what I do, and keep doing what I do everyday.

Sunday, January 11, 2009

Updating Burke's Pictures from Hospital Stay

Warning: very long post ahead. You all have been warned, but I warn you, there will be some dang cute pictures, so enjoy (okay so I'm biased, sorry)! Okay, I want to update some pictures of Burke while in the hospital in Dec. 2008. The one of Emma, Burke and I was taken on Christmas Eve, Emma came with me really late that night and spent a little while with Burke. We had a great time. Below is Burke playing with his "toys". A lot of the nurses commented on how the kids who stay in the hospital for long periods of time begin to enjoy and want to play with the instruments that the doctors and nurses use. He was very interested in the thermometer and here he is trying so hard to get it back into its holder. He got so frustrated when he couldn't get it back in. There is one of he and Santa a couple of days before Christmas. He came around to every child in the hospital. He was pretty excited to see him at first, but when Santa began to shake his bells, oh man Burke just cried so hard and was literally scared so bad that we tried to comfort him until Santa left. I had the camera at first taking pictures at the beginning and then when I saw the look of complete and utter fear on Burke's face I decided to put the camera down and comfort my child laying helpless in the hospital bed. And we come to find out after Santa left, that this Santa is THE Macy's Santa. I don't know how Primary's was able to steal him for this Christmas, but that is THE Santa, pretty cool huh? The picture of Burke sleeping was the first day he was extubated after having the breathing tube in for about 2 weeks. Doesn't he look totally peaceful? I walked into the room to him looking like that, and I about cried, because for the previous two weeks he hadn't even looked like himself with all the tubes he was hooked up to. I love that picture also because it has a literal and physical evidence that Burke was making progress. Tubes were beginnning to be removed slowly and having the breathing tube come out was a huge step and huge physical change that I as a mother just loved. My little Burkie was coming back to normal. The one of Burke and I just shows when he was first starting to sit up again after surgery. He was really weak still but he loved sitting up and looking at everything.

Here are some of us on Christmas day. I can't have all of the ones be perfect of Burke so, the one above is so sad. He always wanted me to hold him. Burke got to ope his stocking in the hospital. In it was a bunch of tools and a few animals. I also learned how to crochet just before we went down to Utah so I was able to make quite a few hats and finished this brown one for Burke just before Christmas. It is so cute and fits him great, but some people might confuse Burke with being a chemo patient- he's not though! But the hat is decieving. Emma was cute opening her stocking. We had opened presents with her earlier that morning at the Ashton's condo where we were staying. The only thing she didn't open was her stocking and she was SO excited for this. She got some animals also but she got new big girl panties which she wanted to open each one and take the little tape off of each one and threw them all over Burke's crib and on the floor. She thought they were pretty cool. The below two pictures are documenting Burke's room and the atmosphere and also to show that daddy was really present. He got sick while we were down there and wasn't able to come into the PICU for a few days. Luckily by Christmas day he was feeling better and was okay enough that he put on a mask and saw Burke on Christmas day. He was our designated video camera/still shot man! It was great, and I was so glad that we were able to be together on Christmas, but I felt so bad for Tyler as did he because he wanted to be with Burke but we just couldn't risk him getting sick.The last three are some random pictures of cute Burke. I've realized this is totally out of order and kind of crazy and not organized at all, but I think you get the just of it. But now I can finally post pictures of when we got home from Primary's and get on with my life. As can you after this long winded post.

Wednesday, January 7, 2009

Picture of Burke home from hospital

Burke playing with Emma's purse right when we got home yesterday. I just wanted to document his homecoming from another unexpected hospital visit. At least this one was only two days and not three weeks. We are making progress here folks.

Last Night

Are you kidding me? Last night, actually last evening, was the evening from HECK!! We thought Burke would go down great considering his sleep deprivation while staying in the hospital. We thought Emma would go to sleep too with all the craziness that she has been through with playing over at Grandma's and with Will and Weston the past couple of days. But oh no, we thought TOTALLY WRONG!! We tried putting Burke down about 8 or so and he just cried hysterically. This time he didn't end up going into coughing attacks because of crying so we just let him cry it out, trying to get him to learn that it was bed time and that he is supposed to go to sleep without the help of mom or dad rocking him to sleep like he used to do before these past two surgeries. The crying went on and on, and we knew he was okay because it wasn't like he was gasping for air, he was just crying to have us come yet him out. By that time last night, I was done. I was spent and I just wanted him to stop crying and Emma to actually stay in her room and TRY to fall asleep. But no, the second I walked down stairs from putting her down about 9:30ish she came out of her room (which is a HUGE NO NO at our house) and called for me at the top of the stairs, "mommy, I'm not tired."

After multiple attempts at putting her back in her bed I shut the door to her room which is the ultimate punishment for her. So, I have this crying sleep deprived, now spoiled little boy and this screaming at the top of her lungs little girl all wide awake late last night. Not a good thing. What was a good thing though was Tyler who was in a great mood who dealt with Emma and convinced her to go to sleep and then picked up Burke and brought him downstairs for a little while longer to play. Usually we are both tired by then so the whole family is bent out of shape, but Tyler was amazing last night and saved the night. He did end up getting fed up with Burke's winning for me to hold him, resulting in me taking him and putting him back to sleep where he FINALLY decided that he was tired. This is how we found him last night when he would NOT fall asleep. It was pretty funny and we had a good laugh. That is his feeding pump that is another one of his little buddies these days. He had never tipped it over until last night. Hopefully this won't be a habit for him and we can get him back on his schedule that he was on way back in November. Sigh.(Click on picture to see the close up of Burke expression on his face- classic Burke face.)

Tuesday, January 6, 2009

We're HOME!!

Yeah! We finally got discharged from the hospital this afternoon and arrived home about an hour ago. Burke is doing well, and trying to get some sleep upstairs right now. When we got home he was playing and just enjoying being in his own territory.

The swallow study went well today. He is still aspirating thin liquids though and cannot have anything by mouth that is thinner than honey consistency. We are learning though that his tongue probably has a lot to do with why he can't swallow some foods. He has had his tongue clipped twice, once when he was about 6 weeks old and then the second time just last August and he even had to be put under for the second procedure because it would be too traumatic for him otherwise. So, in August we thought we conquered his tight frenulum, but oh no, it has fought back. Since he sucks his fingers all the time he forces his tongue to stay down which is bad for chewing and swallowing. His tongue needs therapy (that sounds funny) and we will be going to a speech therapist regularly to help with his tongue needs.

His lungs sound good now after a couple of days on the antibiotics and the cardiologist actually stopped that med, so we will see how he does. He is on reflux meds to help with the food coming up from his stomach, but that won't totally help him from aspirating the food in his stomach. So, we will see if we land in the hospital again sometime soon for aspirating because sometimes you can't even tell if the foods he has been approved to eat will go into his lungs or not. Great. We are pretty much perturbed right now and it is probably due to the fact that Burke is way fussy right now while we are trying to get him to go to sleep. Hopefully he will have a good night sleep and be in a better mood tomorrow. We are doing well just a little tired. Until next time, when there will be yet another thing that will come up on top of everything else going on. I don't mean to leave on a bad note, I guess that is the way it is when I am tired. So long.

Monday, January 5, 2009

Burke's in the hospital, again

Yesterday Burke was admitted to the hospital here in Boise. He was coughing a lot Saturday and Sat. night and we called down to Primary's to explain what was going on and the NP said you need to immediately get him checked out. We likewise talked with the cardiologist on call here in Boise and she likewise wanted him to be seen. Off to the ER we went. Ty stayed at home with Emma because we thought it was just another check up, but we soon learned that it was more than just a check up.

He got a chest x-ray and they saw that he has fluid in his lungs, more in the right than left. This tells that he has been aspirating the food that we have given him and even the food that has been in his stomach. When he has these coughing attacks (mostly Saturday night- all night long) he coughs so hard that he gags and then chokes because he is refluxing and when that fluid comes up he aspirates it which means it goes directly into his lungs. They have officially diagnosed it pneumonia because any fluid in the lungs is pneumonia. They put him on a powerful antibiotic and temporarily stopped his feeds yesterday and last night so that he wouldn't reflux his stomach fluid. He had a great night last night and actually slept and didn't have bad coughing attacks. He coughs every so often because there is still fluid in his lungs but not nearly as much as there was. They had to increase his oxygen yesterday but were able to ween him down to only 1 liter which is what he is on at home.

He had a good day today. Tyler stayed with him during the day so I could go home and get some sleep because I stayed over last night with him and hardly slept. But it is for sure a lot different when Burke is in the hospital here in the town we live in. We actually can go home and escape for a little bit. It is amazing the difference. Burke should only be in the hospital until tomorrow evening, but maybe longer. They need to watch him as they introduce more feeds. Tommorrow he will have a swallow study performed on him where they can tell which foods he is aspirating so they have a better idea of what foods he can eat. I guess I should give some background to why they need to do this. When he was at Primary's he had to be put on ECMO (heart lung machine) and they had to go in through the viens in his neck. They might have damaged the nerve that deals with his vocal cords and also deals with his swallow. His right vocal cord is paralized and hopefully over time if the nerve is just stretched it will improve. If it was cut then his voice might not come back. But we are hopeful because he could hardly talk when he was discharged from Primary's and just since that time his voice has improved a lot. We are anxious for tomorrow swallow study to see what foods he can eat, because the poor little guy is so hungry and wants to eat so bad.

As a result of the pneumonia he is in isolation and every nurse and doctor that comes into his room has to put gowns, gloves and masks on. Emma was given a mask to put on a hospital dolly that she got at Primary's and she found it in her room tonight. She immediately wanted to wear it. I took the chance to take her picture because she never has wanted to wear it until tonight. I thought it was very fitting considering Burke is in isolation. He didn't get the pneumonia from someone, so he probably is not contagious (especially now that he is on a very powerful antibiotic) but they take every precautions to make sure everything is sanitary for others.
Overall Burke is doing well and very anxious to get out of the hospital yet again. But he has been such a trooper and has dealt with all the doctors and their examinations for the most part, really well. Hopefully after this pneumonia goes away we can have a couple weeks of peace and quiet before he has to go to Primary's again for another heart catheter to balloon open his arteries at the end of January.

Thursday, January 1, 2009

Home for New Years

Did you hear? We are home!!! Yes, that is right, we were actually discharged from the hospital yesterday and got home last night about7 pm. Jan, my mother in law, told someone that I left to take Burke in just for a check up exactly three weeks ago and I have not been home since- (until yesterday that is). I can't believe that it has been three weeks since I took Burke in to the doctor because I was worried about him and felt like something was wrong. I for sure didn't expect to spend three weeks in the hospital especially over the Christmas holiday. But we got a great New Years' gift, we were able to be together as a family again in our own home for the first time in three weeks!

Speaking of gifts, here are a couple of Burke getting to play with his Christmas gift for the first time. It is a tool bench and he was able to play with the small tools in the hospital, but we could not bring the bench in so we set it up at home and he LOVED it!!!

And thanks to a hand-me-down from Sadie (Emma's cousin) Emma was able to enjoy her big gift this year which was a piano. Thank you SO MUCH Sadie- Emma LOVED it! Actually there is a fun story about the first time Emma and Burke discovered the piano, which was last night. She saw it first then Burke saw it and he booked it over to see the piano. Burke has only taken a couple of steps since surgery and he took about 4 in order to get to the piano. He doesn't walk for hardly anything these days, but the piano was exciting enough that he walked a long ways to check it out. So, thanks David and Mindy for the great gift for Emma, AND Burke.