Yep, this is much too controversial for facebook and I might lose a few readers from this video, but this says everything I always have believed to be true about vaccines. Complete 180 since having a child whose immune system is compromised.
Tuesday, November 29, 2011
Sunday, November 27, 2011
Humbled
First of all, just so I don't forget, I found this link through another blog I follow. Just can't remember which one, so I don't know who to link back to (sorry!). Thought you might enjoy it, especially if you or your kids or your spouse have the problem of speaking before thinking.
Onto today's post:
Last Tuesday, I went down to the Salt Lake Rescue Mission and took some pictures for my brother-in-law, Brady. He works at the Mission and does their newsletter and promo materials so he wanted lots of different shots that they'll be able to use year-round. Saying I was humbled would be an understatement. Then need, the smiles, the anger, the happiness, all of it wrapped into one. The irony of the governor coming to serve, followed around by his personal photographer. undoubtedly to get some good publicity shots. Nonetheless, a man serving out of what seemed a genuine heart.
The most rewarding experience I had was working in the shoe tent (I was supposed to be snapping pictures, but got sucked into filing through hundreds of pairs of shoes to find "just the right ones" for the people coming through the line).
There was a little girl. She was 5 and looked like Dora.
She wanted pink shoes. In a size 8 or 9. So, we found some sparkly tennis shoes with rainbow laces... you know the love between a woman and "that pair" of shoes.
It starts young.
Oh yes, and the shoes were new. With brand-new tags. She was ecstatic! I was ecstatic. Prematurely.
We laced the shoes and tried to put them on her feet. Unsuccessfully. They wouldn't fit.
She was trying to cram them in, saying "they're fine!" when her toes were all but busting out the front.
"I'll find you new ones. That are just as great. I promise."
The words escaped my mouth before I could do anything. As I walked back to the shoe tent, I prayed over and over again, Please Lord, I know you can help me find the shoes she wants. I can pray that because I know He does care. About those little things. Or, in a 5-year-old's mind, those big things.
After much shuffling, I found them. Pink shoes with silver sparkly velcro laces. Even better than the first ones.
We put them on her feet, and they fit perfectly! She bounded off, skipping over to show her dad, who smiled and waved. A genuine smile and wave.
Isn't that just like Him? Glimmers of hope in a dark and broken world.
I'm thankful for those glimmers, how about you?
Onto today's post:
Last Tuesday, I went down to the Salt Lake Rescue Mission and took some pictures for my brother-in-law, Brady. He works at the Mission and does their newsletter and promo materials so he wanted lots of different shots that they'll be able to use year-round. Saying I was humbled would be an understatement. Then need, the smiles, the anger, the happiness, all of it wrapped into one. The irony of the governor coming to serve, followed around by his personal photographer. undoubtedly to get some good publicity shots. Nonetheless, a man serving out of what seemed a genuine heart.
The most rewarding experience I had was working in the shoe tent (I was supposed to be snapping pictures, but got sucked into filing through hundreds of pairs of shoes to find "just the right ones" for the people coming through the line).
There was a little girl. She was 5 and looked like Dora.
She wanted pink shoes. In a size 8 or 9. So, we found some sparkly tennis shoes with rainbow laces... you know the love between a woman and "that pair" of shoes.
It starts young.
Oh yes, and the shoes were new. With brand-new tags. She was ecstatic! I was ecstatic. Prematurely.
We laced the shoes and tried to put them on her feet. Unsuccessfully. They wouldn't fit.
She was trying to cram them in, saying "they're fine!" when her toes were all but busting out the front.
"I'll find you new ones. That are just as great. I promise."
The words escaped my mouth before I could do anything. As I walked back to the shoe tent, I prayed over and over again, Please Lord, I know you can help me find the shoes she wants. I can pray that because I know He does care. About those little things. Or, in a 5-year-old's mind, those big things.
After much shuffling, I found them. Pink shoes with silver sparkly velcro laces. Even better than the first ones.
We put them on her feet, and they fit perfectly! She bounded off, skipping over to show her dad, who smiled and waved. A genuine smile and wave.
Isn't that just like Him? Glimmers of hope in a dark and broken world.
I'm thankful for those glimmers, how about you?
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| The man in the red hat kept asking me to take his picture. Finally I asked why and he said,"Because people need to know. They need to know there's people like us who need jobs and a place to live." |
Saturday, November 19, 2011
This is the one where I ramble... oh wait, that's every one!
"Shall we accept good from God, and not trouble?" ~Job 2:10
I've really been challenged by this verse lately. Challenged by Job's story. I am quick to thank God for the miracles He continues to perform every day. And, rightfully so! He shows up in so many small ways throughout the course of my day. I would be remiss if I failed to recognize His hand in all the wonderful things He brings and provides each and every day. It's when calamity strikes that I start asking "Why!?" and I forget how good He is. I forget that He's still good in the face of trial and suffering. I forget that sometimes the hardest things we face in life are really blessings because of the fruit we develop, because of the connections we make, because of the glory He is due. I forget that sometimes hardships are sent our way to teach us, grow us up, use us.
I don't know where you stand on the living-in-a-fallen-world vs. God's sovereignty debate, and to be honest, I'm not exactly sure where I stand either. But, one thing I do know for sure.
I've really been challenged by this verse lately. Challenged by Job's story. I am quick to thank God for the miracles He continues to perform every day. And, rightfully so! He shows up in so many small ways throughout the course of my day. I would be remiss if I failed to recognize His hand in all the wonderful things He brings and provides each and every day. It's when calamity strikes that I start asking "Why!?" and I forget how good He is. I forget that He's still good in the face of trial and suffering. I forget that sometimes the hardest things we face in life are really blessings because of the fruit we develop, because of the connections we make, because of the glory He is due. I forget that sometimes hardships are sent our way to teach us, grow us up, use us.
I don't know where you stand on the living-in-a-fallen-world vs. God's sovereignty debate, and to be honest, I'm not exactly sure where I stand either. But, one thing I do know for sure.
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| Practicing wearing masks... this is the only way he'd wear his! LOL. |
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| J was enthralled with the CMA Awards Show! |
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| Treatments with Daddy... |
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| Treatments with Grandma! |
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| Our last at-home IV treatment!!!! We were so happy! |
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| The PICC line after they removed it... kind-of gross, but fascinating all the same |
Monday, November 14, 2011
Home.
Yes, we came home on Saturday! I am not going to lie. This is a lot of work.
Don't get me wrong, I'm happy to be here. Especially since a nurse and doctor told us to get out as soon as we could, since the floor was filling up with respiratory sicknesses. That was enough for me to push our way out (not that we even needed to push, they were doing enough pushing of their own!).
However, wow!
Our schedule is full. Treatment at 7:30, breakfast at 8:30 and an IV antibiotic during breakfast. Nap at 10, treatment at 11:30, lunch at 12:30, another IV at 2:30, another at 3, treatment at 3:30, dinner at 5, treatment at 7:30 and another antibiotic during 8:30 bottle, then another IV at 2:30 am. Yes, it probably would have been easier to stay at Primary's, but I'm thankful to be home and thankful this is short-lived.
Yesterday was a weepy day and I knew my post would be a little too depressing, so I decided to post today instead. We were told by a doctor upon discharge that we needed to keep J out of the public again this winter. She assured us that CF kiddos always need to be careful, but the first 2 winters are extremely important. This sent me a little over the edge and I spent yesterday feeling sorry for myself. Cry-fest with Matt and a husband-mandated relaxing bath, quiet time and afternoon nap. He's so wonderful, I don't deserve him.
After that afternoon, I'm over it. What's best for J is best for our family, and my service to the Lord right now is my service as a mom. Learning to be okay with that takes more than I realized.
I just hate Cystic Fibrosis. I hate that Matt and I can easily be sent into a tailspin over one small cough or a throat rattle. I'm frustrated that we have to worry about his lungs. I hate that we've had to count calories since the day we found out.
I recently befriended a 29 year old woman on the internet who has CF. She has already challenged my view of CF and reminded me of the feeling I felt when J was first diagnosed. I remember feeling overwhelmed, but I knew God was in control. I've lost that feeling lately. I've started grasping for hope lately, and not necessarily clinging to him the way I know I ought to. Not because I "should" or have to, but because I know that's where the best life possible lies.
I'm working on getting back to this. And by working, I mean reminding myself of who God is and what His ultimate plan is. The lady I referred to earlier said in an e-mail, "God is the sustainer of life and CF makes you figure out if you really believe that or not." Wow. I needed that. I have always believed that He was our sustainer, but haven't always lived that day by day. So, here is my goal. To remind myself daily of who He is, what He's done and how much we have to be thankful for! I am working towards being one thankful girl!
Don't get me wrong, I'm happy to be here. Especially since a nurse and doctor told us to get out as soon as we could, since the floor was filling up with respiratory sicknesses. That was enough for me to push our way out (not that we even needed to push, they were doing enough pushing of their own!).
However, wow!
Our schedule is full. Treatment at 7:30, breakfast at 8:30 and an IV antibiotic during breakfast. Nap at 10, treatment at 11:30, lunch at 12:30, another IV at 2:30, another at 3, treatment at 3:30, dinner at 5, treatment at 7:30 and another antibiotic during 8:30 bottle, then another IV at 2:30 am. Yes, it probably would have been easier to stay at Primary's, but I'm thankful to be home and thankful this is short-lived.
Yesterday was a weepy day and I knew my post would be a little too depressing, so I decided to post today instead. We were told by a doctor upon discharge that we needed to keep J out of the public again this winter. She assured us that CF kiddos always need to be careful, but the first 2 winters are extremely important. This sent me a little over the edge and I spent yesterday feeling sorry for myself. Cry-fest with Matt and a husband-mandated relaxing bath, quiet time and afternoon nap. He's so wonderful, I don't deserve him.
After that afternoon, I'm over it. What's best for J is best for our family, and my service to the Lord right now is my service as a mom. Learning to be okay with that takes more than I realized.
I just hate Cystic Fibrosis. I hate that Matt and I can easily be sent into a tailspin over one small cough or a throat rattle. I'm frustrated that we have to worry about his lungs. I hate that we've had to count calories since the day we found out.
I recently befriended a 29 year old woman on the internet who has CF. She has already challenged my view of CF and reminded me of the feeling I felt when J was first diagnosed. I remember feeling overwhelmed, but I knew God was in control. I've lost that feeling lately. I've started grasping for hope lately, and not necessarily clinging to him the way I know I ought to. Not because I "should" or have to, but because I know that's where the best life possible lies.
I'm working on getting back to this. And by working, I mean reminding myself of who God is and what His ultimate plan is. The lady I referred to earlier said in an e-mail, "God is the sustainer of life and CF makes you figure out if you really believe that or not." Wow. I needed that. I have always believed that He was our sustainer, but haven't always lived that day by day. So, here is my goal. To remind myself daily of who He is, what He's done and how much we have to be thankful for! I am working towards being one thankful girl!
Friday, November 11, 2011
Day Seven
Well, we got the green light!
We are going to discharge tomorrow and finish the clean-out at home.
I'm actually having mixed emotions about this. I won't lie, it is nice to have someone there 24/7 to help with caring for your child. The nurses get his meds, the kitchen cooks his food, the respiratory therapists do his treatments (and are fun for me to chat with), the custodians clean the bathroom and floors, and no one really has any expectations of me. I don't have to do laundry, I don't have to cook, I don't have to clean the house.
BUT. He is sounding so much better and is finally over whatever it was that was ailing him (he tested positive for rhinovirus... just the common cold, but I think there was some residual gunk left over from his bout with Roseola). And, in case you didn't know it, hospitals are pretty germy places. And, we are one out of 8 CF patients on the floor. It all is getting to me a little bit. I also don't love that you have no control over who your doctors and nurses are (at least for this first visit), so you never know who will come waltzing into your room at any hour. Add in the fact that J was fussier today than he has been and is reminding me of this lion. He is ready to be home and down on the ground to play!!!
I am a little nervous about the at-home clean out because of all the intricacies of the picc line on a squirmy little guy that we can't fully communicate with yet. Our schedule at home will be jam-packed basically from 7:30 am until 9:00 pm. There are 5 IV treatments total, 4 respiratory treatments, and the usual 3 meals and 2 naps that need to fit in there somewhere. So, I'm feeling a little anxious but choosing to trust that this is the best option for him. He wasn't suctioned at all today, so they will do one last assessment tomorrow to ensure that he is still as clear as he was on days after being suctioned.
I have been fighting the blues today for unknown reasons. I got all weepy at weird times during the day. Matt even came up to stay the night with J in the room and I didn't want to leave. I hung around the room until it was far too late and then went grocery shopping, of all things. I think I've just been so used to constant company that being alone is a little tricky. I'm praying that a good cry, for so many reasons, is just what's needed and I'll wake up tomorrow refreshed! :)
Why are you cast down, O my soul,
Yes, my hope is in Him. Hope for J, hope for tomorrow.
We are going to discharge tomorrow and finish the clean-out at home.
I'm actually having mixed emotions about this. I won't lie, it is nice to have someone there 24/7 to help with caring for your child. The nurses get his meds, the kitchen cooks his food, the respiratory therapists do his treatments (and are fun for me to chat with), the custodians clean the bathroom and floors, and no one really has any expectations of me. I don't have to do laundry, I don't have to cook, I don't have to clean the house.
BUT. He is sounding so much better and is finally over whatever it was that was ailing him (he tested positive for rhinovirus... just the common cold, but I think there was some residual gunk left over from his bout with Roseola). And, in case you didn't know it, hospitals are pretty germy places. And, we are one out of 8 CF patients on the floor. It all is getting to me a little bit. I also don't love that you have no control over who your doctors and nurses are (at least for this first visit), so you never know who will come waltzing into your room at any hour. Add in the fact that J was fussier today than he has been and is reminding me of this lion. He is ready to be home and down on the ground to play!!!
I am a little nervous about the at-home clean out because of all the intricacies of the picc line on a squirmy little guy that we can't fully communicate with yet. Our schedule at home will be jam-packed basically from 7:30 am until 9:00 pm. There are 5 IV treatments total, 4 respiratory treatments, and the usual 3 meals and 2 naps that need to fit in there somewhere. So, I'm feeling a little anxious but choosing to trust that this is the best option for him. He wasn't suctioned at all today, so they will do one last assessment tomorrow to ensure that he is still as clear as he was on days after being suctioned.
I have been fighting the blues today for unknown reasons. I got all weepy at weird times during the day. Matt even came up to stay the night with J in the room and I didn't want to leave. I hung around the room until it was far too late and then went grocery shopping, of all things. I think I've just been so used to constant company that being alone is a little tricky. I'm praying that a good cry, for so many reasons, is just what's needed and I'll wake up tomorrow refreshed! :)
Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation and my God. ~Psalm 42:11
Yes, my hope is in Him. Hope for J, hope for tomorrow.
Thursday, November 10, 2011
Days Five and Six
We are still doing well!
Jason actually sounds a lot clearer today (thank you, Lord!). Yesterday two of our doctors offered us the option to discharge early and go home tomorrow!! This would mean finishing the clean-out at home (home IV antibiotics and 4 treatments a day). We were super excited about this proposition, but don't want to jump the gun on anything so we asked for another day. The plan is currently to go home Saturday and have a good in-depth assessment tomorrow. We requested for the nurse who saw him in clinic last Friday and ultimately recommended a clean-out to come and see him tomorrow to do a one-week follow-up and go with her advice and the advice of the pulmonologist to see if they think he's ready. We really just don't want to check out earlier than we should. The reason we're vascillating so much is because the suction has been so incredibly helpful for him. I'm currently looking at the nasty container of mucus that they've collected over the course of our visit and I'm a little grossed out, but I also love that it's in that container and not in his little body!!!
If he'd benefit from more suctioning, we're going to stick it out longer. Today, though, he hasn't been suctioned and still sounds fairly clear, so maybe we're past the point of having to rely on suction! We shall see.
We've had a few great visitors, Kevin brought us Cafe Rio last night (hallelujah!) and Jason ate some of the black beans and drank some strawberry lemonade out of a straw for the first time! :) My friend Kim brought me pizza for lunch and we got to chat for a little bit, it was wonderful! Yesterday, my mom and Matt's mom came up to watch J in the afternoon so I could get out of the room. I met my friend Jess at the Starbucks in University Hospital. We're both in situations that aren't the best, but it's little perks like coffee dates that get you through living at a hospital.
Jason really is getting used to this... he smiles and "talks" to his nurses now and is currently rolling around his crib and playing while his PICC line is hooked up.
Never thought we'd be in this boat as a family, but God is good to provide strength and optimism.
Looking forward to bringing this little one home and sleeping in our own beds, but not wanting to rush the process.
Hope you're having a great Thursday!
Jason actually sounds a lot clearer today (thank you, Lord!). Yesterday two of our doctors offered us the option to discharge early and go home tomorrow!! This would mean finishing the clean-out at home (home IV antibiotics and 4 treatments a day). We were super excited about this proposition, but don't want to jump the gun on anything so we asked for another day. The plan is currently to go home Saturday and have a good in-depth assessment tomorrow. We requested for the nurse who saw him in clinic last Friday and ultimately recommended a clean-out to come and see him tomorrow to do a one-week follow-up and go with her advice and the advice of the pulmonologist to see if they think he's ready. We really just don't want to check out earlier than we should. The reason we're vascillating so much is because the suction has been so incredibly helpful for him. I'm currently looking at the nasty container of mucus that they've collected over the course of our visit and I'm a little grossed out, but I also love that it's in that container and not in his little body!!!
If he'd benefit from more suctioning, we're going to stick it out longer. Today, though, he hasn't been suctioned and still sounds fairly clear, so maybe we're past the point of having to rely on suction! We shall see.
We've had a few great visitors, Kevin brought us Cafe Rio last night (hallelujah!) and Jason ate some of the black beans and drank some strawberry lemonade out of a straw for the first time! :) My friend Kim brought me pizza for lunch and we got to chat for a little bit, it was wonderful! Yesterday, my mom and Matt's mom came up to watch J in the afternoon so I could get out of the room. I met my friend Jess at the Starbucks in University Hospital. We're both in situations that aren't the best, but it's little perks like coffee dates that get you through living at a hospital.
Jason really is getting used to this... he smiles and "talks" to his nurses now and is currently rolling around his crib and playing while his PICC line is hooked up.
Never thought we'd be in this boat as a family, but God is good to provide strength and optimism.
Looking forward to bringing this little one home and sleeping in our own beds, but not wanting to rush the process.
Hope you're having a great Thursday!
Tuesday, November 8, 2011
Day Four
Well, today was another relatively good day!
I had two wonderful surprise visitors bearing very sweet gifts. These were great surprises and it really brightened my day! They both brought fun new toys for Jason, and he spent the day playing with them... great!
Matt came in the afternoon so I could go and get some last few details wrapped up with the trip I'm working on for Hungry for Life (they leave Saturday!). It felt good to get out, but I was racing from Primary's to Draper and then back again in a short amount of time, so it wasn't really "relaxing". :) But, I was thankful for sunshine and fresh air!
Matt's mom aka Nana was also able to come up today, which is good for them both!
Our main CF pulmonologist didn't come up today and I was sad that she hadn't come to see us yet, but while I was gone, she called our room and talked to Matt about Jason. She is an extremely kind doctor and we like to think that J is one of her faves. :) She raved over the picture that we left for her (see below) in her office last week and said she wants to submit it to the Cystic Fibrosis Foundation for them to use as how great infants with CF can thrive! Talk about a compliment!
She went on to say she was sorry to hear that we were in (she was out of town at the CF conference last week when we were told to come in) but that she knows "Jason will be fine because he's always been such a healthy little guy". Glad to hear that, coming from her. She's never one to sugarcoat things, so I know she would tell it like it is. I may try to give her a call tomorrow so I can talk to her too.
During evening treatment, chatting with the respiratory therapist, I found out that she is a Christian and just adopted a little girl from China. It was a sweet time where we got to talk about faith and when things don't happen the way we would have planned (CF for us, infertility for her). What a nice encouraging surprise visit with a sister in Christ to chat about real-life stuff. During treatment (hypertonic saline), Jason was acting kind-of weird. He acted like he was choking, then would try to cough but kind-of couldn't. After the saline, he had some good coughs and then all of a sudden all this mucus/throw-up came out. I was glad he got it out, but since he threw up they couldn't finish with percussion because of risking aspiration. That was a little disappointing because his percussion treatments have been so productive. So, we are going to go a little longer tomorrow during percussions to make up for it. Good news, the respiratory therapist listened to him after the treatment and was shocked at how much clearer he sounded! She thinks he got some good stuff up, which is very encouraging. I also found out the therapist we had today requested that she get to come to our room again tomorrow, so I'm glad that J's cute little personality is finally shining through and winning a few hearts along the way. :)
Matt and I are learning to enjoy our little times together and all the random places that we're finding for J to play within these 4 walls. :) We're practicing with a baby mask every day in hopes that we can get out of the room to play a little (walking in the halls) but we'll see! There are 3 other CF admits on the floor, so we don't want to wander too far. The nurses said they'd tell us where the other CFers are so we can stay away from those wings.
Continuing to pray for strength for us and peace for J. He's sleeping well at night and actually has a few favorite nurses, so we're thankful for that!
Here's the collage I gave to our doc, a great first year!
I had two wonderful surprise visitors bearing very sweet gifts. These were great surprises and it really brightened my day! They both brought fun new toys for Jason, and he spent the day playing with them... great!
Matt came in the afternoon so I could go and get some last few details wrapped up with the trip I'm working on for Hungry for Life (they leave Saturday!). It felt good to get out, but I was racing from Primary's to Draper and then back again in a short amount of time, so it wasn't really "relaxing". :) But, I was thankful for sunshine and fresh air!
Matt's mom aka Nana was also able to come up today, which is good for them both!
Our main CF pulmonologist didn't come up today and I was sad that she hadn't come to see us yet, but while I was gone, she called our room and talked to Matt about Jason. She is an extremely kind doctor and we like to think that J is one of her faves. :) She raved over the picture that we left for her (see below) in her office last week and said she wants to submit it to the Cystic Fibrosis Foundation for them to use as how great infants with CF can thrive! Talk about a compliment!
She went on to say she was sorry to hear that we were in (she was out of town at the CF conference last week when we were told to come in) but that she knows "Jason will be fine because he's always been such a healthy little guy". Glad to hear that, coming from her. She's never one to sugarcoat things, so I know she would tell it like it is. I may try to give her a call tomorrow so I can talk to her too.
During evening treatment, chatting with the respiratory therapist, I found out that she is a Christian and just adopted a little girl from China. It was a sweet time where we got to talk about faith and when things don't happen the way we would have planned (CF for us, infertility for her). What a nice encouraging surprise visit with a sister in Christ to chat about real-life stuff. During treatment (hypertonic saline), Jason was acting kind-of weird. He acted like he was choking, then would try to cough but kind-of couldn't. After the saline, he had some good coughs and then all of a sudden all this mucus/throw-up came out. I was glad he got it out, but since he threw up they couldn't finish with percussion because of risking aspiration. That was a little disappointing because his percussion treatments have been so productive. So, we are going to go a little longer tomorrow during percussions to make up for it. Good news, the respiratory therapist listened to him after the treatment and was shocked at how much clearer he sounded! She thinks he got some good stuff up, which is very encouraging. I also found out the therapist we had today requested that she get to come to our room again tomorrow, so I'm glad that J's cute little personality is finally shining through and winning a few hearts along the way. :)
Matt and I are learning to enjoy our little times together and all the random places that we're finding for J to play within these 4 walls. :) We're practicing with a baby mask every day in hopes that we can get out of the room to play a little (walking in the halls) but we'll see! There are 3 other CF admits on the floor, so we don't want to wander too far. The nurses said they'd tell us where the other CFers are so we can stay away from those wings.
Continuing to pray for strength for us and peace for J. He's sleeping well at night and actually has a few favorite nurses, so we're thankful for that!
Here's the collage I gave to our doc, a great first year!
Monday, November 7, 2011
Day Three
Well, there is nothing really new to report. Treatments continue to go well, with the exception of this morning because he was tired from a less-than-full night's sleep.
I think he is adjusting somewhat to everything (except the suctioning!) and has been having some productive coughs. We are thankful for that!
We're starting some bad habits that I'm hoping don't carry over into home life! The biggest one being watching this ridiculous Sid the Science Kid DVD over and over and over again to keep entertained during CPT and eating. Matt seems fairly confident that he won't need those comforts at home, but I'm not convinced!!! We'll see.. I've enlisted Matt to bring the Veggie Tales sing-alongs from home so that I don't have to hear this song 12 billion times a day!
I'm a little frustrated that we haven't met with our usual doctors yet, but am going to push for it tomorrow. I want to make sure that the inpatient staff are on the same page as the CF outpatient team who we normally see. No sense in adding extra days to our stay, right!!?? One pulmonologist did come in today and listen to his lungs. I asked how they sounded and he said that he heard "a little bit of crackling" on the back, but they "sounded fine". Crackling = fine!? News to me! It's interesting how nonchalant people can be about things that they're experts in. I think sometimes case-by-case gets lost in floods of information and knowledge. Like I said, hoping we get to see our great CF doc tomorrow.
God continues to give us strength, patience, and peace. He is our ever-present help in times of trouble. Thank you Lord that you've already conquered my fears and we have so much to be thankful for.
Since this post isn't as long, here are a few pics and a pretty funny video from today. See, it's not that bad!
I think he is adjusting somewhat to everything (except the suctioning!) and has been having some productive coughs. We are thankful for that!
We're starting some bad habits that I'm hoping don't carry over into home life! The biggest one being watching this ridiculous Sid the Science Kid DVD over and over and over again to keep entertained during CPT and eating. Matt seems fairly confident that he won't need those comforts at home, but I'm not convinced!!! We'll see.. I've enlisted Matt to bring the Veggie Tales sing-alongs from home so that I don't have to hear this song 12 billion times a day!
I'm a little frustrated that we haven't met with our usual doctors yet, but am going to push for it tomorrow. I want to make sure that the inpatient staff are on the same page as the CF outpatient team who we normally see. No sense in adding extra days to our stay, right!!?? One pulmonologist did come in today and listen to his lungs. I asked how they sounded and he said that he heard "a little bit of crackling" on the back, but they "sounded fine". Crackling = fine!? News to me! It's interesting how nonchalant people can be about things that they're experts in. I think sometimes case-by-case gets lost in floods of information and knowledge. Like I said, hoping we get to see our great CF doc tomorrow.
God continues to give us strength, patience, and peace. He is our ever-present help in times of trouble. Thank you Lord that you've already conquered my fears and we have so much to be thankful for.
Since this post isn't as long, here are a few pics and a pretty funny video from today. See, it's not that bad!
Sunday, November 6, 2011
Day Two
I'm writing a little early today to get it out of the way and I have good news to report!
It's amazing what a good night's sleep will do. Jason's 7:30 treatment went really well!! He cried a little bit, but with the help of the Cat in the Hat, Super Why, and Dinosaur Train on tv, it was a success! He has his next treatment at 11:30, so I found some episodes on itunes to download... I think that will work. Well, I'm praying it will!
GOOD NEWS! We got the results of his virus scan back and he just has rhinovirus, the basic cold. So glad it's not something worse that hints at a respiratory infection. This means we're not on isolation and, while wearing a mask, we can go out in the hallways and J can walk behind a toy. I think we'll get out this afternoon, I'm looking forward to it. A dear family friend of ours (she's known me since birth!) is in town this weekend. We're super disappointed that we're in the hospital while she's here, but they're going to come up and visit and spend some time up here this afternoon. I think that will be a good time to get out and do some playing. :)
A few things I forgot to mention yesterday:
1. The doctor reassured us that this is a "routine" clean-out. That really put my mind at ease. They're not doing anything special or different than they do with other clean-outs, and that's with the knowledge of his chest x-rays. We'll find out tomorrow when he gets his next x-ray.
2. The respiratory therapists that do his percussion treatments have this awesome suctioning tube that goes up his nose and down his throat and then they suction as they come out. Seriously, this thing is awesome. I never thought I'd be so excited about irrigating my child's sinuses. :) They got a lot of gunk out yesterday and he didn't even need it today. My guess is they'll do it at the 11:30 am treatment and the 7:30 pm treatment. He hates it, but it's really helping.
Okay, other than that there's nothing new to report. He ate his breakfast well and is sleeping now, thankful that he's adjusting a little bit. Now, if we could get him to like some of his nurses, that would be awesome. But, I'm not going to hold my breath. :)
It's amazing what a good night's sleep will do. Jason's 7:30 treatment went really well!! He cried a little bit, but with the help of the Cat in the Hat, Super Why, and Dinosaur Train on tv, it was a success! He has his next treatment at 11:30, so I found some episodes on itunes to download... I think that will work. Well, I'm praying it will!
GOOD NEWS! We got the results of his virus scan back and he just has rhinovirus, the basic cold. So glad it's not something worse that hints at a respiratory infection. This means we're not on isolation and, while wearing a mask, we can go out in the hallways and J can walk behind a toy. I think we'll get out this afternoon, I'm looking forward to it. A dear family friend of ours (she's known me since birth!) is in town this weekend. We're super disappointed that we're in the hospital while she's here, but they're going to come up and visit and spend some time up here this afternoon. I think that will be a good time to get out and do some playing. :)
A few things I forgot to mention yesterday:
1. The doctor reassured us that this is a "routine" clean-out. That really put my mind at ease. They're not doing anything special or different than they do with other clean-outs, and that's with the knowledge of his chest x-rays. We'll find out tomorrow when he gets his next x-ray.
2. The respiratory therapists that do his percussion treatments have this awesome suctioning tube that goes up his nose and down his throat and then they suction as they come out. Seriously, this thing is awesome. I never thought I'd be so excited about irrigating my child's sinuses. :) They got a lot of gunk out yesterday and he didn't even need it today. My guess is they'll do it at the 11:30 am treatment and the 7:30 pm treatment. He hates it, but it's really helping.
Okay, other than that there's nothing new to report. He ate his breakfast well and is sleeping now, thankful that he's adjusting a little bit. Now, if we could get him to like some of his nurses, that would be awesome. But, I'm not going to hold my breath. :)
Saturday, November 5, 2011
Day One
Today was the first day of our first CF clean out. Bear with me, it's late and I may ramble and miss some grammar and spelling errors! At this point I am choosing not to care! :)
We checked in around noon and soon met the staff we'd be working with. I was worried that there would be loopholes because we decided to check in today instead of Monday, and I was right. They weren't sure the IV team would be able to place the PICC line today and the respiratory therapists were thrown for a bit of a loop. It's all working out though.
The IV team was able to come down and place the PICC line which leaves a lot to be desired. J had to be sedated and we had to be out of the room for an hour. We were told he'd be out of it and sleeping the whole time so we went and grabbed some coffee and stopped by a hoity-toity toy store in Foothill Village to buy J an adorable little phone toy that we knew he'd love (and yes, he did!). We got back to his room and found out that he had a reaction to the Phentenol (sp?) that "happens to a few kids" where it has the reverse effect and ends up aggravating them instead of relaxing them. So, he whined and was restless through the entire procedure. When we got there, he was sitting up in his crib and watching a video of Cookie Monster singing with Will.I.Am on the nurse's phone. Pretty hilarious. He saw us and tried to stand up and ended up face planting, the sedation was still wearing off. I felt bad for giggling, but there were some pretty cute groggy-baby moments today.
Our schedule was totally thrown for a loop because of that procedure. He couldn't have milk after 6 am, and could only have clear liquids until 10. They finished placing the PICC line at 3, so that means he had gone 9 hours without real sustenance, and since he didn't rest during the procedure, 6 hours since he had slept last. Let's just say our attempt at lunch didn't go well, neither did drinking out of the hospital bottles. But, he ate some, then took a good long nap.
Never fear, I ran home and grabbed his bottles and some home comforts to make this as easy as possible on him. We are praying that he doesn't have a virus so that he doesn't have to be on "isolation" in our room. If the test comes back negative, we'll be able to wander the halls a bit.. they even have cozy coupes for kids to ride in. Pretty sure that would make his week!
This evening we had our first treatment with the respiratory therapist. It did not go well. For so many reasons. A masked caper coming to pound on his chest wasn't something J was down with. The difference in nebulizers and difference in setting threw him for a loop. Our biggest prayer request for tomorrow is that he gets used to the new treatments somehow. They are going to do treatments 4 times a day, so it's a pretty frequent and crucial part of his care. Good treatments mean more cleaning out, so prayers are greatly appreciated!
It's so silly to us how hospital stays work. We have all his medication already ordered and even paid for, yet we have to use the meds from the hospital. The treatment issues would be solved if we could use the same equipment we use at home, but no, we have to use disposable nebulizers. I understand they have to cover themselves, but with every barcode that gets scanned, I can just see it listed on our hospital bill. Let the billing begin!?
Luckily, we budgeted this year as though we'd be paying our out of pocket insurance max. God is good to provide exactly what we need.
We are continually blessed by the support we're surrounded by. Whether it be a text, e-mail, phone call or visit, rest assured that your thoughts and prayers don't go unnoticed and we pray that you're blessed just as you have blessed us.
Praying this gets easier, but as the blog title commands, "day by day".
We checked in around noon and soon met the staff we'd be working with. I was worried that there would be loopholes because we decided to check in today instead of Monday, and I was right. They weren't sure the IV team would be able to place the PICC line today and the respiratory therapists were thrown for a bit of a loop. It's all working out though.
The IV team was able to come down and place the PICC line which leaves a lot to be desired. J had to be sedated and we had to be out of the room for an hour. We were told he'd be out of it and sleeping the whole time so we went and grabbed some coffee and stopped by a hoity-toity toy store in Foothill Village to buy J an adorable little phone toy that we knew he'd love (and yes, he did!). We got back to his room and found out that he had a reaction to the Phentenol (sp?) that "happens to a few kids" where it has the reverse effect and ends up aggravating them instead of relaxing them. So, he whined and was restless through the entire procedure. When we got there, he was sitting up in his crib and watching a video of Cookie Monster singing with Will.I.Am on the nurse's phone. Pretty hilarious. He saw us and tried to stand up and ended up face planting, the sedation was still wearing off. I felt bad for giggling, but there were some pretty cute groggy-baby moments today.
Our schedule was totally thrown for a loop because of that procedure. He couldn't have milk after 6 am, and could only have clear liquids until 10. They finished placing the PICC line at 3, so that means he had gone 9 hours without real sustenance, and since he didn't rest during the procedure, 6 hours since he had slept last. Let's just say our attempt at lunch didn't go well, neither did drinking out of the hospital bottles. But, he ate some, then took a good long nap.
Never fear, I ran home and grabbed his bottles and some home comforts to make this as easy as possible on him. We are praying that he doesn't have a virus so that he doesn't have to be on "isolation" in our room. If the test comes back negative, we'll be able to wander the halls a bit.. they even have cozy coupes for kids to ride in. Pretty sure that would make his week!
This evening we had our first treatment with the respiratory therapist. It did not go well. For so many reasons. A masked caper coming to pound on his chest wasn't something J was down with. The difference in nebulizers and difference in setting threw him for a loop. Our biggest prayer request for tomorrow is that he gets used to the new treatments somehow. They are going to do treatments 4 times a day, so it's a pretty frequent and crucial part of his care. Good treatments mean more cleaning out, so prayers are greatly appreciated!
It's so silly to us how hospital stays work. We have all his medication already ordered and even paid for, yet we have to use the meds from the hospital. The treatment issues would be solved if we could use the same equipment we use at home, but no, we have to use disposable nebulizers. I understand they have to cover themselves, but with every barcode that gets scanned, I can just see it listed on our hospital bill. Let the billing begin!?
Luckily, we budgeted this year as though we'd be paying our out of pocket insurance max. God is good to provide exactly what we need.
We are continually blessed by the support we're surrounded by. Whether it be a text, e-mail, phone call or visit, rest assured that your thoughts and prayers don't go unnoticed and we pray that you're blessed just as you have blessed us.
Praying this gets easier, but as the blog title commands, "day by day".
Friday, November 4, 2011
Going in...
Well, the dreaded time has come.
We were hoping we'd be the lucky families who don't have to deal with CF cleanouts for awhile, but tomorrow we'll be admitted for J's first cleanout.
I have lots of mixed emotions. When he was first diagnosed, we were told to "plan on" 2 weeks of cleanout every year. We got through his first year without a cleanout, and hoped that meant we wouldn't have to go in for awhile!
Well, this lingering virus has gooped up his lungs, which creates a breeding ground for bacteria. The hope through this cleanout is just that, that we'll be able to clean out his lungs from all the gunk settling in there.
Prayers would be greatly appreciated for strength for Matt and me, calm for Jason (he'll have IV antibiotics through a PICC line and 4 treatments a day), that Jason would continue to eat well and gain weight like he has been (praise the Lord!), that the mucus build up in his lungs would get out, that infection won't develop, and that God would use this in our lives to encourage others and shine His light.
I'll try to post everyday with an update on how we're doing... here goes nothing??
We were hoping we'd be the lucky families who don't have to deal with CF cleanouts for awhile, but tomorrow we'll be admitted for J's first cleanout.
I have lots of mixed emotions. When he was first diagnosed, we were told to "plan on" 2 weeks of cleanout every year. We got through his first year without a cleanout, and hoped that meant we wouldn't have to go in for awhile!
Well, this lingering virus has gooped up his lungs, which creates a breeding ground for bacteria. The hope through this cleanout is just that, that we'll be able to clean out his lungs from all the gunk settling in there.
Prayers would be greatly appreciated for strength for Matt and me, calm for Jason (he'll have IV antibiotics through a PICC line and 4 treatments a day), that Jason would continue to eat well and gain weight like he has been (praise the Lord!), that the mucus build up in his lungs would get out, that infection won't develop, and that God would use this in our lives to encourage others and shine His light.
I'll try to post everyday with an update on how we're doing... here goes nothing??
Thursday, November 3, 2011
Words
Hi everyone!
I am writing you feeling like a load has been lifted off my shoulders. I'm really a "yes girl", and find myself struggling to balance my priorities. I easily get overwhelmed and then wonder why! Today I quit my school district job. It was actually really hard because I just loved the people who I worked with, and let's be honest, I felt like I failed a little bit. I've never had to quit a job without the excuse of a college degree or the birth of a baby, so I wasn't sure how to go about it.
I wanted to be professional, but let's be honest, that has never really been a word that has suited me well. I sat down and chatted with the sweet girl who hired me. She has always been supportive, encouraging, helpful and complimentary. It was so hard to tell her this was just the straw that broke the camel's back. The job was really interfering with Jason's CF morning treatments, and I found myself struggling to be all things to all people. I was humbled by her gracious response, as she told me that she will support me professionally and personally in whatever ways I need. What a surprise, I feel so relieved and know now that I'm at my tipping point as far as work goes. I'm glad I know that now though, so that I can say no when I need to. I think maybe it's time for me to be able to do that anyway, without having a trial and error and failing a bit. Sometimes failure, or perceived failure, is really God's way of gently bringing us back to a place of reliance on Him.
So, on a completely different note, I've been convicted lately about my thoughts. Where do they lead me when I let them wander? Let me tell you, nowhere good. They lead me to a place of discontentment and discouragement and I end up questioning my marriage, my role as a mom, my friendships, my "am-i-enoughs?". You would think that I would automatically go to a place where I could meet with God and remember His truths about me. I am His. I am precious to Him. He loves me and wants to be with me. He is enough. That has yet to happen automatically, on my own. I always need reminders. So, I surround myself with His words. They are by my kitchen sink. On the bathroom mirror. On my nightstand, on J's nightstand. I literally have to put them eye-level, smacking me in the face, out loud. For those days that too often come my way. Days when I don't have the energy or, let's face it, desire to crack open the fresh words of God. When my stubbornness and selfishness seem more important than a real, convicting, encouraging truth from the one who made me and gave me this wonderful life.
How do you make sure to stay in the Word? Memorization? Bible Study? Thoughts welcome.
I am writing you feeling like a load has been lifted off my shoulders. I'm really a "yes girl", and find myself struggling to balance my priorities. I easily get overwhelmed and then wonder why! Today I quit my school district job. It was actually really hard because I just loved the people who I worked with, and let's be honest, I felt like I failed a little bit. I've never had to quit a job without the excuse of a college degree or the birth of a baby, so I wasn't sure how to go about it.
I wanted to be professional, but let's be honest, that has never really been a word that has suited me well. I sat down and chatted with the sweet girl who hired me. She has always been supportive, encouraging, helpful and complimentary. It was so hard to tell her this was just the straw that broke the camel's back. The job was really interfering with Jason's CF morning treatments, and I found myself struggling to be all things to all people. I was humbled by her gracious response, as she told me that she will support me professionally and personally in whatever ways I need. What a surprise, I feel so relieved and know now that I'm at my tipping point as far as work goes. I'm glad I know that now though, so that I can say no when I need to. I think maybe it's time for me to be able to do that anyway, without having a trial and error and failing a bit. Sometimes failure, or perceived failure, is really God's way of gently bringing us back to a place of reliance on Him.
So, on a completely different note, I've been convicted lately about my thoughts. Where do they lead me when I let them wander? Let me tell you, nowhere good. They lead me to a place of discontentment and discouragement and I end up questioning my marriage, my role as a mom, my friendships, my "am-i-enoughs?". You would think that I would automatically go to a place where I could meet with God and remember His truths about me. I am His. I am precious to Him. He loves me and wants to be with me. He is enough. That has yet to happen automatically, on my own. I always need reminders. So, I surround myself with His words. They are by my kitchen sink. On the bathroom mirror. On my nightstand, on J's nightstand. I literally have to put them eye-level, smacking me in the face, out loud. For those days that too often come my way. Days when I don't have the energy or, let's face it, desire to crack open the fresh words of God. When my stubbornness and selfishness seem more important than a real, convicting, encouraging truth from the one who made me and gave me this wonderful life.
How do you make sure to stay in the Word? Memorization? Bible Study? Thoughts welcome.
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