Hudson needs your prayers.
This will be quick....my iPad /blogger doesn't want to do this post for some reason (very frustrating)
Hudson was put on Prednisone and antibiotics after seeing his Pulmonoligist last week. We did a chest X-ray and it was unchanged since his last hospitalization. She had me take a sample of the very thick mucous he is coughing up. This poor child has been coughing up the most vile, thickest mucous I have ever seen. He wakes anywhere between 4-6 in the morning and coughs for 30min to and hour non stop for a good month now. I sit by his bed and suction so he doesn't choke, aspirate, suffocate.
I took the sample in to the lab and got a phone call this week from the pulmo clinic.
Hudson has a bacterial infection positive for Bronchitis. He is also growing another bacteria called Pseudomonas . I was told if not treated effectively it can cause long term damage. We changed to a new antibiotic to better treat these bacterial infections. We started this new one on Tuesday night.
I have yet to see a change...it is likely to soon. I am suppose to call the nurse to let her know how he is doing. If he doesn't start to improve, he will need to be admitted and get intravenous antibiotics. Clearly I would like to avoid a hospitalization. However ultimately I would give anything to see him have a great improvement to this never ending respiratory struggle we have been dealing with that feels like forever. Hudson suffers enough with mito and seizures....all of this is just too much .it is heartbreaking to see how much he endures. What is amazing is for the most part his spirit is pretty calm and happy and relaxed. No big crying jags, or increased fussiness. I have noticed bigger, longer seizures lately, which is tough to watch.
This antibiotic is a real pain ...it can't be given with dairy, and of course Hudson is only fed Peptamin Jr. through his gtube. So, in order to not totally mess up his normal feed/med schedule, I am having to wake at least 2 hours prior to his first a.m. feed and two hours past his last p.m. feed. The formula will ultimately make this med inaffective if given together or within the 2 hour min. time frame.
As of now I will be giving him this for 21 days....I am one tired mom!
Prayers....
we just need prayers something will give, he will get better and stop suffering so much with respiratory issues. What scares me the most is the thought that maybe his respiratory system is deteriorating because of his mito. The Pulmonoligist wants a CT scan done on his chest this summer. I am sure it will tell us what state his respiratory system is in.
I have all the faith Hudson will fight through this like he always does...he is such a vessel of strength, such a mighty warrior!
Friday, May 3, 2013
Wednesday, April 17, 2013
Spring Break
A slew of emotions flood me as spring break arrived this week....
It is a serious mix of emotion....
My kids are off all week, I don't have to work...wouldn't it be fun to whisk away on a plane somewhere tropical, hot...where there are beaches or swimming pools and I could sip on some sweet fancy drinks with umbrella's. Sometimes it feels like everyone around me is doing just that...making memories with their families, feeling the sun on their skin, enjoying time off.
In my world I never get a day off...I have to get up at a certain time to make sure I keep Hudson on schedule, I can't jump on a plane, or surprise my other two kids with a fun trip to Disneyland or Hawaii or any place other than WA. We can't go farther than a drive in the car for the day. Hudson is so medically fragile, I can't take him anywhere really. Home is the best and safest place for him.
Monday was our first day of break...I spent it with Hudson at Seattle Children's Hospital. Hunter and Hailey were happy they didn't have to go when I offered to let them go to "Spring Break Awesomeness" A teacher from their school is doing a day camp throughout the week and all the money goes to their sister school in Liberia.
Day two was me making an attempt to surprise my kids with something I thought they would enjoy. It was a pretty spring sunny morning so we drove to the Harbor, parked and walked along the harbor...the air was crisp, and the sun was shining and it felt glorious!
We walked to a little diner in the Harbor and had breakfast. Hudson was with my mom that morning, so it was a little one on one time with two of my favorite little people. On our way home Hailey had said something pretty profound, and strange in a way.....
"I think we are lucky to have a sick brother with a disease because we don't have to worry about spending money on expensive trips, we can just stay home and do fun things together here."
I am not sure what exactly she meant by that. I did tell the kids it is not where we go or what we do, it is just being together that matters...because on the flip side of feeling sorry for myself that I never get a real break or that my kids have never had a real vacation in the last 5 years...is that I would never ever want those things because the price would be too high...
If I could keep Hudson forever and do what I do on a daily basis for the rest of my life, I would without hesitation sign up. He is my world, he is a living angel that I have been appointed to, to love on and care for the rest of his life.....however long that may be. Every day is a gift. Every day I am grateful for his presence on this earth....I would bask in his presence for the rest of my life and never bask in the presence of an exotic beach, or a trip to Europe, or any amazing vacation that I could dream up....
It is because I know that there will be a Spring Break that may look so much different than today, that I am able to be grateful for this spring break at home with all 3 of my kids. As sick as he is, it is with a grateful heart that I can say he fights on, and continues to go to battle each and every day as he is so strong and such a warrior. This life with mito is so uncertain, and so scary at times. I see Hudson struggling more and more with respiratory issues, my heart aches to see what he endures on a daily basis....When I think of the possibility that I may one day have to live without him... I fall apart. It may seem cold and heartless to think those things, but it is the reality of this degenerative disease. Every day is a gift....every moment, every snuggle, even the suctioning, the pushing of meds,thoe hospitalizations, the lifting and carrying, the diapering....all a gift, because one day I will mourn doing those things....and to me that seems unbearable.
So....
I imagine his legs walking one day, running....I imagine his hand grabbing mine.....I imagine the feel of his arms around my neck....I imagine what a kiss from him would feel like.....I imagine the conversations we one day will have.....
I layed my head down last night and prayed for him as I always do....I imagined Jesus touching his frail, broken body and I imagined healing....I prayed and asked for healing as I have the last almost 6 years.....and then I prayed if it is the will of our Father.....and I know in my heart this is how Hudson must live on this side of heaven. He continues to teach though he can't speak...he is one amazing little boy.
I continue to try to do my very best balancing parenting two healthy vibrant kids and one very sick child...all while doing it as a single mom. Thursday I am taking all three of my kids to Olypmic Game Farm in Sequim. Hudson can go as we stay in the car and drive through a "zoo" of sorts. Hunter and Hailey are super excited. No, its not Palm Springs or Disneyland....it is just me trying to make the best of this life we have been handed....trying to teach my kids the value in what we have and showing them how to find joy in what we have been given. Whether they ever know spring break to be different than they do today, I think Hudson continues to teach all of us how to be grateful for the simple things in life.
It is a serious mix of emotion....
My kids are off all week, I don't have to work...wouldn't it be fun to whisk away on a plane somewhere tropical, hot...where there are beaches or swimming pools and I could sip on some sweet fancy drinks with umbrella's. Sometimes it feels like everyone around me is doing just that...making memories with their families, feeling the sun on their skin, enjoying time off.
In my world I never get a day off...I have to get up at a certain time to make sure I keep Hudson on schedule, I can't jump on a plane, or surprise my other two kids with a fun trip to Disneyland or Hawaii or any place other than WA. We can't go farther than a drive in the car for the day. Hudson is so medically fragile, I can't take him anywhere really. Home is the best and safest place for him.
Monday was our first day of break...I spent it with Hudson at Seattle Children's Hospital. Hunter and Hailey were happy they didn't have to go when I offered to let them go to "Spring Break Awesomeness" A teacher from their school is doing a day camp throughout the week and all the money goes to their sister school in Liberia.
Day two was me making an attempt to surprise my kids with something I thought they would enjoy. It was a pretty spring sunny morning so we drove to the Harbor, parked and walked along the harbor...the air was crisp, and the sun was shining and it felt glorious!
We walked to a little diner in the Harbor and had breakfast. Hudson was with my mom that morning, so it was a little one on one time with two of my favorite little people. On our way home Hailey had said something pretty profound, and strange in a way.....
"I think we are lucky to have a sick brother with a disease because we don't have to worry about spending money on expensive trips, we can just stay home and do fun things together here."
I am not sure what exactly she meant by that. I did tell the kids it is not where we go or what we do, it is just being together that matters...because on the flip side of feeling sorry for myself that I never get a real break or that my kids have never had a real vacation in the last 5 years...is that I would never ever want those things because the price would be too high...
If I could keep Hudson forever and do what I do on a daily basis for the rest of my life, I would without hesitation sign up. He is my world, he is a living angel that I have been appointed to, to love on and care for the rest of his life.....however long that may be. Every day is a gift. Every day I am grateful for his presence on this earth....I would bask in his presence for the rest of my life and never bask in the presence of an exotic beach, or a trip to Europe, or any amazing vacation that I could dream up....
It is because I know that there will be a Spring Break that may look so much different than today, that I am able to be grateful for this spring break at home with all 3 of my kids. As sick as he is, it is with a grateful heart that I can say he fights on, and continues to go to battle each and every day as he is so strong and such a warrior. This life with mito is so uncertain, and so scary at times. I see Hudson struggling more and more with respiratory issues, my heart aches to see what he endures on a daily basis....When I think of the possibility that I may one day have to live without him... I fall apart. It may seem cold and heartless to think those things, but it is the reality of this degenerative disease. Every day is a gift....every moment, every snuggle, even the suctioning, the pushing of meds,thoe hospitalizations, the lifting and carrying, the diapering....all a gift, because one day I will mourn doing those things....and to me that seems unbearable.
So....
I imagine his legs walking one day, running....I imagine his hand grabbing mine.....I imagine the feel of his arms around my neck....I imagine what a kiss from him would feel like.....I imagine the conversations we one day will have.....
I layed my head down last night and prayed for him as I always do....I imagined Jesus touching his frail, broken body and I imagined healing....I prayed and asked for healing as I have the last almost 6 years.....and then I prayed if it is the will of our Father.....and I know in my heart this is how Hudson must live on this side of heaven. He continues to teach though he can't speak...he is one amazing little boy.
I continue to try to do my very best balancing parenting two healthy vibrant kids and one very sick child...all while doing it as a single mom. Thursday I am taking all three of my kids to Olypmic Game Farm in Sequim. Hudson can go as we stay in the car and drive through a "zoo" of sorts. Hunter and Hailey are super excited. No, its not Palm Springs or Disneyland....it is just me trying to make the best of this life we have been handed....trying to teach my kids the value in what we have and showing them how to find joy in what we have been given. Whether they ever know spring break to be different than they do today, I think Hudson continues to teach all of us how to be grateful for the simple things in life.
Saturday, April 6, 2013
My Little Brother
As I was going through Hailey's Friday folder containing her work for the week, I came across this.
Sometimes I think the kids only see Hudson and his illness....nothing on this paper says seizures, mito, or sick....
My heart swelled when I read her words about her little brother...So beautiful!
Tuesday, April 2, 2013
Time
I am not sure how to come back here after completely hijacking this blog.
I'm not sure if I can give this the time and energy it takes to do the whole blogging thing.
I must rephrase...I am certain I don't have it in me, I am certain I have likely lost Hudson's faithful readers and prayer warriors, I am most certain of all the reasons I don't want to come here....
But then I am also certain I have heard God whisper to me several times over the last 5 months that I have not been blogging, and I am convicted by what I hear.....
that my life song is Hudson's story...if I don't blog, Hudson's voice is not being heard, and in return Gods goodness is not being glorified. I had put an end to blogging Hudson's story out of selfish reasons.
All I can say is we are back...
I'm not sure how often, and I'm not going to try and back pedal and replay the last 5 months, but I will do my very best to share my Hudson with the world, as he continues to fight his battle with mitochondrial disease and multiple seizure disorder. His story will be shared so his voice can be heard to the glory of God.
The story has not changed much....
Hudson still battles seizures daily, he has mito with no known origin, he has been in the hospital more times in the last 5 months than I can count (we sit here today inpatient under respiratory distress) he has physically grown a ton, he is a warrior beyond comprehension, and he soldiers through this most difficult life with amazing grace and strength.
We have been through a lot....more than most....but we stand because we don't rely on our own strength but only on His strength, our eyes are fixed on Jesus....He is our Rock.
I'm not sure if I can give this the time and energy it takes to do the whole blogging thing.
I must rephrase...I am certain I don't have it in me, I am certain I have likely lost Hudson's faithful readers and prayer warriors, I am most certain of all the reasons I don't want to come here....
But then I am also certain I have heard God whisper to me several times over the last 5 months that I have not been blogging, and I am convicted by what I hear.....
that my life song is Hudson's story...if I don't blog, Hudson's voice is not being heard, and in return Gods goodness is not being glorified. I had put an end to blogging Hudson's story out of selfish reasons.
All I can say is we are back...
I'm not sure how often, and I'm not going to try and back pedal and replay the last 5 months, but I will do my very best to share my Hudson with the world, as he continues to fight his battle with mitochondrial disease and multiple seizure disorder. His story will be shared so his voice can be heard to the glory of God.
The story has not changed much....
Hudson still battles seizures daily, he has mito with no known origin, he has been in the hospital more times in the last 5 months than I can count (we sit here today inpatient under respiratory distress) he has physically grown a ton, he is a warrior beyond comprehension, and he soldiers through this most difficult life with amazing grace and strength.
We have been through a lot....more than most....but we stand because we don't rely on our own strength but only on His strength, our eyes are fixed on Jesus....He is our Rock.
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Hudson Tyler
Our sweet angel!