It has been about 3 weeks since I took Hudson to the E.R.
At the time I asked the Dr. to give him an antibiotic, but she didn't want to and I was told it would have to run its course. I wish some doctors didn't think they know my son better than me. He doesn't fit the typical mold, and running its course leads me to taking him to his PCP 3 weeks later for antibiotics.
You might think I am making a pot of coffee in the background of this video. No...it's Hudson's breathing....it's the gunk that has turned yellowish/green that is sitting in the back of his throat...I am certain it is the same stuff that has been brewing since we took him to the E.R. 3 weeks ago. He is choking on it, coughing, vomiting......seizures remain off the charts.
He is seizing through the night...early in the morning....it wakes me up, because he cries out....coughs....chokes....
This child endures far behind his capacity....he is a fighter....thank God!
As one can imagine....the only way I can really help my little guy is constant suctioning....sometimes I have to go back with catheter further than I would like to make him cough up the goo that is suffocating him.
He will sound better for a few, and then it build right back up again.
This is right after suctioning....
Between illness and seizures he is so lethargic.
He has been spending his days lying or sitting, but nothing else. I don't have it
in me to do much more with him. I canceled PT yesterday, I stayed home from work today....
one of the gals I work with.....her daughter came down with chicken pox 2 weeks ago....
none of my kids have the vaccine....and she would be there today with her kids...couldn't risk it,
I needed another week for peace of mind.
Praying I see a turn around now that we have Augmentin.....in return, I hope his seizures back off.
We did get the script written by his PCP for the Clobazam (never without a fight).....now I am waiting for the Canadian Pharmacy to call me and get my money so they can send it.....feels like the waiting game is endless!!!
I sure hope it is worth it.....poor Hudson needs some relief!
Tuesday, April 26, 2011
Sunday, April 24, 2011
Friday, April 22, 2011
Sharing Ella Mae
- Ella Mae Will Dance for Jesus in the Kingdom | Sermon Notes, Luke #71
- Over 400K Will Watch the Good Friday Film This Year
- Yes, We Will Be Live-Streaming the Easter Celebration at Qwest
Posted: 21 Apr 2011 10:18 PM PDT
In this week’s sermon, Pastor Mark told us about meeting Ella Mae, a young pastor’s daughter in eastern Washington. Ella Mae has spina bifida, but has always dreamed of being a ballerina. When Pastor Mark mentioned this in an early sermon, a young woman who was in the service and is a ballet dancer with the Pacific Northwest Ballet came up afterward to say that they would love to have Ella Mae come meet all the ballerines next time she was in Seattle.
So Pastor Mark wrote her dad to let them know the good news. This was Ella Mae’s reaction, as told in her dad’s reply:
Dude. Huge. I don’t even know what to say. I read your note to her this afternoon. Ella Mae’s eyes got big and she exclaimed, “Really??!! Truly? I get to meet a REAL BALLERINA? Mom, Mom, guess what Pastor Mark did for me!” Oh man, I should have videoed it … it would have put gas in your tank for miles. Her face was priceless. Good stuff.Read Pastor Mark’s full story about Ella Mae in this week’s sermon transcript.
We’ve sometimes wondered whether or not we should “encourage” the whole ballerina thing, for obvious reasons. And then I overheard her telling Levi a couple days ago driving home, “Levi, do you know what will make heaven so wonderful?” “What?” he said. “Heaven will be wonderful because there won’t be any walkers, braces, wheelchairs, or Spina Bifida, which means I’ll finally get to run and play with you like I’ve always wanted to do,” —said in her excited voice, as only she can— “and I’ll be able to dance for Jesus too. He’ll love it. He’s amazing you know, and he really likes ballerinas. I can’t dance now because my legs don’t work, but he’ll fix them in heaven, and then I’m gonna dance my heart out. He can’t wait to see me dance.”
Word for word, from her mouth. My eyes watered and I almost drove off the road.
So bring on ballerinas. One day, here or there, my daughter’s gonna dance. So thanks for blessing our family with this gift. It’s a little like Christmas in April. Seriously, we’re overhwhelmed, humbled, and grateful. God is so good.
Tuesday, April 19, 2011
too many seizures for one little boy
I wonder if in his little life, if we will ever see a day without a seizures.....
there is no break
there is no rest
he battles daily....
we try to put on battle gear (his meds)...
but it all just crumbles all around us....
leaving him completely defenseless against these monsters....
I wish I could see a glimpse of who Hudson is...
without his seizure saturated brain...
without a mushy body....
without trouble swallowing....
without a g-tube....
without debilitating drugs that put him in a fog.....
without this thing called mitochondrial disease.....
I wish I could hear his voice.....
would it be raspy, soft, loud, sweet?
I long for a belly laugh....or even just a giggle.
I wish I could be the one to figure out how to lift the fog that surrounds....
to find answers....
to help a little boy that I absolutely adore...
I would give up everything....including living....to see him live....
to let him have every opportunity of a life he so deserves.
I hate seizures.
I hate what they do before, during and after their attack.
They are like a thief in the night....
they stalk my son on a hourly basis...
It is choking me to see him seize so much....
and yet I can only imagine what it feels for him...
to go through endless seizures for the last 3 1/2 years....
daily...
too much for such an angel....just too much.
grab the tissue box....
I just read this on another blog for the first time....
I am the Disabled Child
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.
I am the Disabled Child
~Author Unknown~
there is no break
there is no rest
he battles daily....
we try to put on battle gear (his meds)...
but it all just crumbles all around us....
leaving him completely defenseless against these monsters....
I wish I could see a glimpse of who Hudson is...
without his seizure saturated brain...
without a mushy body....
without trouble swallowing....
without a g-tube....
without debilitating drugs that put him in a fog.....
without this thing called mitochondrial disease.....
I wish I could hear his voice.....
would it be raspy, soft, loud, sweet?
I long for a belly laugh....or even just a giggle.
I wish I could be the one to figure out how to lift the fog that surrounds....
to find answers....
to help a little boy that I absolutely adore...
I would give up everything....including living....to see him live....
to let him have every opportunity of a life he so deserves.
I hate seizures.
I hate what they do before, during and after their attack.
They are like a thief in the night....
they stalk my son on a hourly basis...
It is choking me to see him seize so much....
and yet I can only imagine what it feels for him...
to go through endless seizures for the last 3 1/2 years....
daily...
too much for such an angel....just too much.
grab the tissue box....
I just read this on another blog for the first time....
I am the Disabled Child
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.
I am the Disabled Child
~Author Unknown~
Tuesday, April 12, 2011
neurology appointment
This morning we had an appointment with Dr. Saneto.
I was 25 minutes late...never a good thing....unfortunately all too common for me though.
My expectations were little. I feel like we have spent more time at Children's this last month than home.
We have been hospitalized, in the ER twice, we've seen GI, we've seen Respiratory and now today neurology. I run to the hospital several times a month to pick up meds too...bleh....so sick of it!!!!
Anyways...being we just saw Dr. Saneto as we were in-patient last month, and the fact that I am in constant contact with his nurse, keeping him on their radar, as we constantly are tweaking his meds in hopes of seeing some sort of seizure relief.....I expected nothing out of this appointment. It is sad to come to a place where you expect no more "lets try this" or no expectations of a "plan"
I feel like we have come to this "holding pattern" in the world of Hudson and seizures.
We can't get into the study for the "mito drug" because we have no genetic link.....we increase "this" and wean "that" resulting in little to no change....we just stay put, where we are and have been for what seems like forever.....a seizure ridden baby boy, zapped of energy, vomiting, gunky junky cough......a heart broken mom who is helpless to resolve any of this for her precious child.....
Our appointment was quick....normally about an hour, it lasted about 30 minutes. My guess is Dr. S spent the 25 minutes that I was sitting in traffic, coming up with a "plan" or in another words, the next drug to try....Clobazam. I am told it is not FDA approved and so Dr. S dictates a letter to Hudson's PCP to see if he will write the prescription and then it is sent to Canada, and delivered to my home. Dr. Saneto explained he can manage the drug but can't write the script for it. Of course this all means we have to pay out of pocket since it is not legal here. I am told it is not too expensive though.
So many hoops to jump....
We have tried so many drugs in the last almost 4 years, it is hard to have any hope in yet another one....I just don't feel hopeful when it comes to getting rid of these horrible monsters....and yet I am grateful I didn't leave today the same way we came....at least there is something to try.
He said he has a little girl who like Hudson has mito and tonic spasms, and the combination of Clobazam and Rufinamide has nearly made her seizure free...I can't imagine....
Hudson tried Rufinamide when it first came out and it was a nightmare drug for him.
We agreed that we need to do some "clean up" when it comes to seizure meds....this will be #5.. tacked on to Zonegram, Depakote, Vimpat, and Lamotrigine......
Thanks for your ongoing and faithful prayers for Hudson and our family.....there are days where I solely rely on God and his faithful followers to see me through....life continues to be really tough lately....a rough season for me especially.
If I am somewhat absent in this area of life, it is because I have very little to give to this platform.....
it seems to come in waves....there are times when I need this for therapy, and then there are times when it is just too much!
Thanks everyone for bearing with me.
I was 25 minutes late...never a good thing....unfortunately all too common for me though.
My expectations were little. I feel like we have spent more time at Children's this last month than home.
We have been hospitalized, in the ER twice, we've seen GI, we've seen Respiratory and now today neurology. I run to the hospital several times a month to pick up meds too...bleh....so sick of it!!!!
Anyways...being we just saw Dr. Saneto as we were in-patient last month, and the fact that I am in constant contact with his nurse, keeping him on their radar, as we constantly are tweaking his meds in hopes of seeing some sort of seizure relief.....I expected nothing out of this appointment. It is sad to come to a place where you expect no more "lets try this" or no expectations of a "plan"
I feel like we have come to this "holding pattern" in the world of Hudson and seizures.
We can't get into the study for the "mito drug" because we have no genetic link.....we increase "this" and wean "that" resulting in little to no change....we just stay put, where we are and have been for what seems like forever.....a seizure ridden baby boy, zapped of energy, vomiting, gunky junky cough......a heart broken mom who is helpless to resolve any of this for her precious child.....
Our appointment was quick....normally about an hour, it lasted about 30 minutes. My guess is Dr. S spent the 25 minutes that I was sitting in traffic, coming up with a "plan" or in another words, the next drug to try....Clobazam. I am told it is not FDA approved and so Dr. S dictates a letter to Hudson's PCP to see if he will write the prescription and then it is sent to Canada, and delivered to my home. Dr. Saneto explained he can manage the drug but can't write the script for it. Of course this all means we have to pay out of pocket since it is not legal here. I am told it is not too expensive though.
So many hoops to jump....
We have tried so many drugs in the last almost 4 years, it is hard to have any hope in yet another one....I just don't feel hopeful when it comes to getting rid of these horrible monsters....and yet I am grateful I didn't leave today the same way we came....at least there is something to try.
He said he has a little girl who like Hudson has mito and tonic spasms, and the combination of Clobazam and Rufinamide has nearly made her seizure free...I can't imagine....
Hudson tried Rufinamide when it first came out and it was a nightmare drug for him.
We agreed that we need to do some "clean up" when it comes to seizure meds....this will be #5.. tacked on to Zonegram, Depakote, Vimpat, and Lamotrigine......
Thanks for your ongoing and faithful prayers for Hudson and our family.....there are days where I solely rely on God and his faithful followers to see me through....life continues to be really tough lately....a rough season for me especially.
If I am somewhat absent in this area of life, it is because I have very little to give to this platform.....
it seems to come in waves....there are times when I need this for therapy, and then there are times when it is just too much!
Thanks everyone for bearing with me.
Friday, April 1, 2011
my apologies...
for not getting on here sooner and letting those who don't know we are out...
we actually were in the ER all day, no surprise, but the shocker was we actually left the ER and went
home 5 hours later.
It all started with coughing all day Wednesday, and me bringing out the suction machine full time.
By Wed. evening Hudson had a low grade fever. I was up with him until 4 a.m. suctioning, holding his little hand through gripping seizures, gave him albuterol....you would have thought I was peculating a pot of coffee if you walked by his bedroom....his breathing was so loud and rattly.Hudson woke with a 101.8 temp, which is too high for him, especially with the continued vomiting.
First thing in the morning I called mito nurse and she got back to me and told me he likely needed i.v. drip. I soooo prepared for this trip to the hospital...I packed several outfits and all things to make me comfortable, including my pillow and blanket. Maybe that was the key, sorta like having the umbrella without any rain.
They got him on his i.v drip per his ER protocol letter. This has been such a huge life saver. Every year Hudson's mito/nuero writes up a letter directed at the E.R. explaining Hudson's diagnosis and first line of treatment, what labs need to be drawn, what they need to watch for,etc. It is instrumental in curtailing the "hudson spiral" I highly, highly recommend something like this for any medically fragile child.
Even though we were able to get him to our hospital, I was informed Dr. S was leaving that day for a conference out of town and the mito RN was also heading out.....another reason why the specific direction from his doctor is crucial....he is not always gonna be there!
Surprisingly Hudson's labs came back normal, his chest xray was seemingly clear, his fever didn't return, and there wasn't really anything getting admitted would do other than give me a miserable night sleep and get Hudson woken up and poked and prodded a dozen times.
I think the nurse was laughing when I asked if I could just leave after I got him dressed....I have never walked out of the E.R with my child...ever!!!!
He seems to have whatever the gunk is that is going around. Sneezing a ton, mucous galore, coughing, wheezy and uncomfortable. We both were exhausted last night and today even more so. I had to work this morning and my other two had no school, so they cane with me and Hudson stayed with my mom.
Hudson has still remained fever free today, but I am constantly suctioning as he is constantly coughing.
His seizures suck....big time....but that's nothing new. He is clustering again after a big tonic spasm and I believe that is the culprit behind the throwing up. The mucous and cough certainly don't help either. We have had some pretty nasty episodes of just throwing up mucous....t.m.i. I know....but it's our life...my reality.
Really grateful to be home tonight....it is a little like being on pins and needles when he is this sick....he still could go down hill if anything brews and sets in, which would send us back to the E.R.
The good part is I get lots of cuddling in with him....I don't feel guilty letting him lie around because he is too weak and tired to have to work at anything.
Tonight is snuggling movie night with me and my kids....I couldn't think of a better place to be and with better company....I adore my kids!
Thanks for the prayers for Hudson. You all are awesome....I love my blog family :)
we actually were in the ER all day, no surprise, but the shocker was we actually left the ER and went
home 5 hours later.
It all started with coughing all day Wednesday, and me bringing out the suction machine full time.
By Wed. evening Hudson had a low grade fever. I was up with him until 4 a.m. suctioning, holding his little hand through gripping seizures, gave him albuterol....you would have thought I was peculating a pot of coffee if you walked by his bedroom....his breathing was so loud and rattly.Hudson woke with a 101.8 temp, which is too high for him, especially with the continued vomiting.
First thing in the morning I called mito nurse and she got back to me and told me he likely needed i.v. drip. I soooo prepared for this trip to the hospital...I packed several outfits and all things to make me comfortable, including my pillow and blanket. Maybe that was the key, sorta like having the umbrella without any rain.
They got him on his i.v drip per his ER protocol letter. This has been such a huge life saver. Every year Hudson's mito/nuero writes up a letter directed at the E.R. explaining Hudson's diagnosis and first line of treatment, what labs need to be drawn, what they need to watch for,etc. It is instrumental in curtailing the "hudson spiral" I highly, highly recommend something like this for any medically fragile child.
Even though we were able to get him to our hospital, I was informed Dr. S was leaving that day for a conference out of town and the mito RN was also heading out.....another reason why the specific direction from his doctor is crucial....he is not always gonna be there!
Surprisingly Hudson's labs came back normal, his chest xray was seemingly clear, his fever didn't return, and there wasn't really anything getting admitted would do other than give me a miserable night sleep and get Hudson woken up and poked and prodded a dozen times.
I think the nurse was laughing when I asked if I could just leave after I got him dressed....I have never walked out of the E.R with my child...ever!!!!
He seems to have whatever the gunk is that is going around. Sneezing a ton, mucous galore, coughing, wheezy and uncomfortable. We both were exhausted last night and today even more so. I had to work this morning and my other two had no school, so they cane with me and Hudson stayed with my mom.
Hudson has still remained fever free today, but I am constantly suctioning as he is constantly coughing.
His seizures suck....big time....but that's nothing new. He is clustering again after a big tonic spasm and I believe that is the culprit behind the throwing up. The mucous and cough certainly don't help either. We have had some pretty nasty episodes of just throwing up mucous....t.m.i. I know....but it's our life...my reality.
Really grateful to be home tonight....it is a little like being on pins and needles when he is this sick....he still could go down hill if anything brews and sets in, which would send us back to the E.R.
The good part is I get lots of cuddling in with him....I don't feel guilty letting him lie around because he is too weak and tired to have to work at anything.
Tonight is snuggling movie night with me and my kids....I couldn't think of a better place to be and with better company....I adore my kids!
Thanks for the prayers for Hudson. You all are awesome....I love my blog family :)
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Hudson Tyler
Our sweet angel!