Monday, April 30, 2012
6th birthday video
Well, I tried posting Hunter's birthday video to his blog like I do every year but, this time for some reason, it kept posting it too big so you could only view half the picture as it played. Anyway, I'm finally giving up and just offering the link to the video (here) for your viewing pleasure.
You better head on over and check it out because I'm counting this as my one post for 2012. Seriously.
Sunday, July 3, 2011
Ward pool party
We took Hunter to the pool Friday night for the ward party. We brought his bath chair along thinking he could lay on it in the kiddie end with me and Rock and "swim" a little. Unfortunately, my idea merely resulted in a serious case of the goosebumps for Hunter. Despite the temperature being in the mid-80's that evening he still got pretty chilly half in/half out of the pool. I think the bath chair would have worked if we were there in the heat of the day. We'll give it another go.I'm so grateful Hunter has a big stong daddy to help make outings like this one possible.
Friday, April 22, 2011
Sunday, April 17, 2011
Yesterday - Day 4
Yesterday we graduated to just mild oxygen support via the cannula. He looked 100% better than the day before! I think both of these pictures really tell the story well. His eyes are so bright and alert.
As part of his respiratory therapy he gets to "shake" in this black vest whenever he gets his albuterol treatments. He vocalizes the whole time. It's cute. 
So happy with his progress! We may get to come home late this afternoon or tomorrow.
As part of his respiratory therapy he gets to "shake" in this black vest whenever he gets his albuterol treatments. He vocalizes the whole time. It's cute. 
So happy with his progress! We may get to come home late this afternoon or tomorrow.
Friday, April 15, 2011
RSV
Well, the dreaded RSV has finally caught up to us. Around midnight on Tuesday Hunter really started to crash after a couple days of illness. His sats were in the toilet (mid to low 70's) and he was wheezing and struggling to breath unlike anything I've ever seen him do before. I took Hunter to the ER around 2 AM. It took about 4.5 liters of oxygen to get his sats where they needed to be. His respiratory rate wasn't really coming down even with the oxygen support. They gave him a breathing treatment in the ER, not albuterol something else?, that seem to give him a little relief. Once the usual admittance dance was done I closed my eyes for a minute. At 6:30 I had to run home to nurse Rockwell so Bry came down to be with Hunter. About an hour later, after feeding the baby and getting my mother-in-law squared away to watch the kids, I arrived back at the hospital.
Outside the door to Hunter's room I could see a whole host of people gathered around his bed. My heart was in my throat as I walked in the room. The mood in the room was really tense. Hunter had a big mask on his face that hadn't been there when I left. They told me while I was gone he'd taken a turn for the worst and was requiring non-invasive ventilation called BiPAP. The nurse gently told us that if he didn't start responding positively soon they might need to intubate him and transfer him to Primary's. The next hour or so was scary for me. My dad came and helped Bryson give Hunter a blessing. I wanted to cry while they were blessing him but I just couldn't. I can't explain the adrenaline/I-need-to-be-strong-for-my-child mentality that just stops up all my emotion when I'm in these situations.
Beneath that though I felt really afraid. Maybe the most afraid I've been his whole life. Thankfully, after what seemed like an eternity he started responding. His labor to breath eased somewhat.
Since that crisis it has been business as usual except that he hasn't been able to transition from the BiPAP to CPAP yet. His chest x-rays looks terrible again today. I know we aren't out of the woods yet but I'm not panicked anymore.
Sometimes I feel disgusted with my selfishness because I want him to stay with me even though I know his life is difficult and painful much of the time. But I'm always relieved when he fights and literally lives to see another day.
On a lighter note, the past couple of evenings as I walk out to my car I pass several young, pregnant couples (with their pillows) on their way in for what I'm guessing must be some kind of birthing class here at the hospital. I can't help but smile at their "sparkliness". They look like shiny new pennies. Not like me, dirty and exhausted. I'm torn between wishing I could go back to that version of me-blissfully unaware that life is hard-and gratitude that we've come as far as we have and are stronger and more tender for it.
Outside the door to Hunter's room I could see a whole host of people gathered around his bed. My heart was in my throat as I walked in the room. The mood in the room was really tense. Hunter had a big mask on his face that hadn't been there when I left. They told me while I was gone he'd taken a turn for the worst and was requiring non-invasive ventilation called BiPAP. The nurse gently told us that if he didn't start responding positively soon they might need to intubate him and transfer him to Primary's. The next hour or so was scary for me. My dad came and helped Bryson give Hunter a blessing. I wanted to cry while they were blessing him but I just couldn't. I can't explain the adrenaline/I-need-to-be-strong-for-my-child mentality that just stops up all my emotion when I'm in these situations.
Beneath that though I felt really afraid. Maybe the most afraid I've been his whole life. Thankfully, after what seemed like an eternity he started responding. His labor to breath eased somewhat.
Since that crisis it has been business as usual except that he hasn't been able to transition from the BiPAP to CPAP yet. His chest x-rays looks terrible again today. I know we aren't out of the woods yet but I'm not panicked anymore.
Sometimes I feel disgusted with my selfishness because I want him to stay with me even though I know his life is difficult and painful much of the time. But I'm always relieved when he fights and literally lives to see another day.
On a lighter note, the past couple of evenings as I walk out to my car I pass several young, pregnant couples (with their pillows) on their way in for what I'm guessing must be some kind of birthing class here at the hospital. I can't help but smile at their "sparkliness". They look like shiny new pennies. Not like me, dirty and exhausted. I'm torn between wishing I could go back to that version of me-blissfully unaware that life is hard-and gratitude that we've come as far as we have and are stronger and more tender for it.
Wednesday, March 16, 2011
Bad news at the ENT
On Monday I took Hunter to his appointment with the ear, nose & throat (ENT) doc. I was feeling really apprehensive about this visit. Although Hunter has enjoyed a hospital-free winter I've been watching him decline in some day-to-day ways that have been hard to watch. He has started making snoring-like noises, although they sound more desperate than the average person sawing logs, while he's sleeping. His chest retracts dramatically as he struggles to get air into his lungs. Sometimes these episodes of airway obstuction will last up to 30ish seconds with him as pale as a ghost by the end.
He has also been having episodes (for lack of a better word) of chills?/shaking, followed by vomiting and then a high fever of 103-105. These episodes follow a very precise pattern/timeline when they occur but I haven't been able to pinpoint what triggers them and they appear to occur totally randomly. Sometimes he'll have two episodes in a week and them he'll go a month without having one.
The last thing Hunter's been dealing with is a complete inability to be upright. The minute we put him in his wheelchair or his carseat(I know, how dare I!) the coughing begins. Let me be clear that this cough is in no way related to mucus or sickness. He's been freakishly healthy considering. It is just a dry cough that produces white foamy saliva. He coughs until he makes himself throw up, which is problematic in too many ways to name, but I will highlight a few.
1) Every time he throws up there's a chance he'll aspirate some of his vomit which could cause pneumonia.
2) I feel obliged to prevent said puking and resulting illness to the best of my ability which means no chair and no carseat for Hunter right now.
3) Hunter - carseat and wheelchair = our life coming to a complete standstill. (Which is a hard graduation considering that's pretty much where things were at anyway.)
Thankfully, we added robinol to our ever increasing list of meds last week and that seems to be helping Hunter with the coughing spells. Our pediatrician's theory was that he was aspirating a little bit of saliva with every breath-kind of like when you are drinking a glass of water and a little bit goes down the wrong tube. For whatever reason, probably since being upright is hard work and the difficultly trickles down to everything else, when Hunter is sitting up it occurs a lot more than when he's lying down. Although I was extremely nervous about using this drug I have to admit that it seems to be helping him stay on top of his secretions, hence eliminating the worst of the coughing.
So, back to the ENT appointment. To sum things up, it looks like we will be traveling one of following roads with our boy in the future.
Road #1- The surgery path. Hunter undergoes at least one, but probably a couple, very serious, difficult-to-recover-from surgeries. He experiences significant amounts of pain as a result of these surgeries and there are no guaranteed results. Despite all we can do, he goes home to Heavenly Father much too soon.
Road #2- We do nothing and things progressively get worse. We watch our son slowly decline and potentially suffer significantly before passing away.
Road #3- We do nothing and this becomes the new baseline. Hunter hangs in there for several more years enjoying a decent quality of life in the meantime. Inevitably, however, we reach a crossroads and are forced to go down one of the aforementioned paths.
It was ironic for me to be receiving this news by myself. I used to force Bry to come to EVERYTHING after Hunter was first diagnosed. But it has been a while now that I am the only parent at the appointments. My hubby has this tiny thing called a job that demands his attention lately. I was pondering that we've both grown up a lot over the past five years.
Apparently not so much though that I didn't cry my eyes out on the way home and call Bry and my mom and dad for support the minute I got to my car. I don't know if I feel grown up enough to be making the kind of decisions that are ahead of us.
He has also been having episodes (for lack of a better word) of chills?/shaking, followed by vomiting and then a high fever of 103-105. These episodes follow a very precise pattern/timeline when they occur but I haven't been able to pinpoint what triggers them and they appear to occur totally randomly. Sometimes he'll have two episodes in a week and them he'll go a month without having one.
The last thing Hunter's been dealing with is a complete inability to be upright. The minute we put him in his wheelchair or his carseat(I know, how dare I!) the coughing begins. Let me be clear that this cough is in no way related to mucus or sickness. He's been freakishly healthy considering. It is just a dry cough that produces white foamy saliva. He coughs until he makes himself throw up, which is problematic in too many ways to name, but I will highlight a few.
1) Every time he throws up there's a chance he'll aspirate some of his vomit which could cause pneumonia.
2) I feel obliged to prevent said puking and resulting illness to the best of my ability which means no chair and no carseat for Hunter right now.
3) Hunter - carseat and wheelchair = our life coming to a complete standstill. (Which is a hard graduation considering that's pretty much where things were at anyway.)
Thankfully, we added robinol to our ever increasing list of meds last week and that seems to be helping Hunter with the coughing spells. Our pediatrician's theory was that he was aspirating a little bit of saliva with every breath-kind of like when you are drinking a glass of water and a little bit goes down the wrong tube. For whatever reason, probably since being upright is hard work and the difficultly trickles down to everything else, when Hunter is sitting up it occurs a lot more than when he's lying down. Although I was extremely nervous about using this drug I have to admit that it seems to be helping him stay on top of his secretions, hence eliminating the worst of the coughing.
So, back to the ENT appointment. To sum things up, it looks like we will be traveling one of following roads with our boy in the future.
Road #1- The surgery path. Hunter undergoes at least one, but probably a couple, very serious, difficult-to-recover-from surgeries. He experiences significant amounts of pain as a result of these surgeries and there are no guaranteed results. Despite all we can do, he goes home to Heavenly Father much too soon.
Road #2- We do nothing and things progressively get worse. We watch our son slowly decline and potentially suffer significantly before passing away.
Road #3- We do nothing and this becomes the new baseline. Hunter hangs in there for several more years enjoying a decent quality of life in the meantime. Inevitably, however, we reach a crossroads and are forced to go down one of the aforementioned paths.
It was ironic for me to be receiving this news by myself. I used to force Bry to come to EVERYTHING after Hunter was first diagnosed. But it has been a while now that I am the only parent at the appointments. My hubby has this tiny thing called a job that demands his attention lately. I was pondering that we've both grown up a lot over the past five years.
Apparently not so much though that I didn't cry my eyes out on the way home and call Bry and my mom and dad for support the minute I got to my car. I don't know if I feel grown up enough to be making the kind of decisions that are ahead of us.
Thursday, February 17, 2011
Families Can Be Together Forever
I'm so grateful for this message. When death feels like a lurking, too real presence in my life I can lean on my testimony of the fact that my family will be together.
Forever.
Also, I love what President Eyring says about real love = putting the welfare of others above our own. Could that be any more opposite of the message the world bombards us with every day? The world says that is should be all about ME, ME, ME!
Not so says the Lord.
I believe becoming a mother is the best way to learn what real love is and implement it in your day-to-day life. God knew our children would teach us about real love in the most tender, sacred, beautiful way possible. His plan is perfect.
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