Thursday, July 18, 2024
Thursday, April 30, 2015
A Good 2+ Years
Can't believe I'm jumping back on this train after almost 3 years of no blogging! I'm sure those who followed our story gave up on me long ago...I realize no one may even lay eyes here, but I will attempt to give it a go anyways.
No way can I recap the last 2+ years, but I can say in general, life is at a really good,stable place. Hudson has had the best 2+ Years in his whole almost 8 years. No, not much has changed...development, seizures, etc all the same. What has changed is our ability to care for him at home which has resulted in no inpatient hospital stays since September 2012! That is a miracle! When he does get sick, I've got the antibiotics, and prednisone on hand. We have the neb, and vest we do several times daily. It's been such a gift! Hudson is such a gift...I never thought I'd be here saying he is doing well at this age...in our world, in the mito world, as impacted and sick as hudson is...8 years is quite an amazing feat for my boy.
The rest of us are doing really well too...
Hunter is 13, Hailey 11. They are thriving and amazing kids, and for that I am grateful. My family is everything to me aside from God. He has seen me through so much and I can honestly say I am doing really, really good. I am happy and healthier than I have ever been...the gym is my therapy and I hit it 6 days week, as well as running outdoors has been a new love.
I take care of me and make my health and me a priority. Having a child as sick as Hudson and then single parenting all 3, well it's easy to loose yourself and not make yourself a priority, but I have found some great balance in the midst of the past 3 years. It's a great place to be.
So, so much going on in our lives, too much to pour out in one post, and more than I could ever pour out, BUT most important of them all is...
we are alive and well!
Wednesday, October 2, 2013
CF
So today one of the doctors informed me that because Hudson is dealing with this chronic pseudomonas, and because he is in need and on many of the treatment regimens for Cysytic Fibrosis, they are going to do a sweat test to test for CF.
I am told they think it is a slim chance that he does have it.
So please keep this is prayer.....we don't need to add to our list of ailments and diseases.
I am told they think it is a slim chance that he does have it.
So please keep this is prayer.....we don't need to add to our list of ailments and diseases.
Monday, September 30, 2013
1 week down....1 to go
We have changed our plans....
Coming into the hospital we thought we would be coming home at the half way mark with picc line in, and antibiotics. However, after much thought it was really a no brainer. Hudson needs to stay in the hospital for as long as he is on this picc line. He is getting respiratory therapy, similar to that what I do at home, but they are doing it 4 times a day. They are also very aggressive and getting alot of gunk out of him....I am definitely not as aggressive, I'm his mom, it breaks my heart to upset him or cause him more hurt or discomfort.
I also could never have the time in a day to treat him 4 times a day on top of living in the real world; two other kids, school, sports, activities, etc, etc.
So what's best for Hudson is to remain in the hospital the entire duration of intravenous antibiotics.
He is doing well. He did amazing getting his line put in and came out of the anesthesia like a rock star. He is such a strong kid.
Praying we see big improvements this week. It's been slow, but it has also been forever that he has been suffering with all these respiratory issues. I don't expect things to clear overnight, and they are not too encouraged that we will get all the pseudomonas, but my prayer is that we see a significant change and that we can get to a new and better baseline.
Wednesday, September 25, 2013
Quick Hospital Update
We got here Monday, they tried to place the picc line without anesthesia and Hudson was not having it. No surprise, my little fighter was so mad they couldn't place it. So he has had an IV since Monday getting two different antibiotics.
Today (Wednesday) he will be put under anesthesia to get the picc line placed. As you can imagine, I am really worried about this process. Anesthesia can be very tricky and difficult with mito.
Prayers are appreciated as always. I need him to do well with this whole process. I need to be on the other side of today with Hudson stable and well.
Today (Wednesday) he will be put under anesthesia to get the picc line placed. As you can imagine, I am really worried about this process. Anesthesia can be very tricky and difficult with mito.
Prayers are appreciated as always. I need him to do well with this whole process. I need to be on the other side of today with Hudson stable and well.
Sunday, September 22, 2013
The unexpected call
I was feeling optimistic how things were going. The combo of nebulizer treatments, albuterol, and vest therapy, it seemed to be doing its thing, making a difference. There have been still alot of secretions, but they had thinned out, the color changed from yellow-green to frothy white. When I finally took a sputum culture it wasn't looking as nasty as it was prior before we started the above treatments.
I felt like the floor fell out from under me when I got a direct call from Hudson's pulmo asking me to call her, giving me her direct office line. I knew it wasn't good. When I found out his body is still growing the bacteria pseudomonas, I was devestated. Hudson's lung is also partially collapsed. We had to come up with a plan, an aggressive plan. With flu season right around the corner this is just heartbreaking news for me and Hudson. Mito/pseudomonas/secondary illness could be devestating.
The Plan:
Tomorrow (Monday) we go inpatient. Hudson will be getting a Picc line placed and will get intravenous antibiotics for at least two weeks. If he does well, we won't have to stay inpatient the entire two weeks. I will administer at home through the Picc line.
I was told to be "cautiously optimistic" They don't believe we will be able to kill all the pseudomonas. We will clear his lung, and the inflammation, and kill off as much as possible. The bacteria burrows itself in the tissues making it hard to reach and treat. They believe this has been in his body longer than we think.
Medicine may not eradicate it all.....but God is the greatest physician. Your prayers for this bacteria to leave his body entirely would be greatly appreciated. Also that the procedure of placing the Picc line would go smoothe and with little trauma to his body.
I will try to update during the week while in the hospital.
Thanks ahead of time for prayers for Hudson, my children at home, and my worried momma heart.
Wednesday, September 4, 2013
Best News Possible
Hudson's CT scan showed no signs of damage to the tissues of the lungs or bronchial area. There was a specific area they were looking at that is commonly affected by pseudomonas. Praise the Lord Hudson shows no signs of progression or damage in this area. They also scanned his sinuses....NORMAL....not a term we hear often.
The pulmo was hugely concerned over the right side of Hudson's chest. She said it is completely full of mucous. Not a big surprise to me. We have started a regime of albuterol, saline nebulizer treatments, and then his vest therapy. The whole process takes us over an hour and is done twice a day. Thankfully Hudson's caregiver is familiar with using the nebulizer, so she is able to do one of the two daily sessions for me.
Next I will need to get a sample of what he is coughing up through a trap that attaches to his suction machine.
Once I get that to the lab we will find out what exactly it is that has inhabited that right side of his chest. The pulmo believes he is going to need a highly aggressive and long series of antibiotics.
My son deserves a cape...
If you listened to him breathe through this crud, if you saw what he coughs up, if you witnessed the toll it takes on his little body....he truly is miraculous. He demands so little, suffers so much, and fights for survival every second of his life. He inspires me....because he wants nothing of this life...toys, clothes, money...things just don't matter. He only has a will to live, and its not even an existence that any other human being would desire.
He fights...every day....through seizures, weakness, mucous, blocked lungs, meds, tube feeds, therapies...
He fights so hard, and I am so grateful, and yet my mind can't wrap around how hard he has fought and survived the last 6 years, and how hard he continues to fight.
Yes, Hudson is a superhero....he is my hero, and I see his cape flowing behind him morning, noon and night as he carries a giant S on his back.
The pulmo was hugely concerned over the right side of Hudson's chest. She said it is completely full of mucous. Not a big surprise to me. We have started a regime of albuterol, saline nebulizer treatments, and then his vest therapy. The whole process takes us over an hour and is done twice a day. Thankfully Hudson's caregiver is familiar with using the nebulizer, so she is able to do one of the two daily sessions for me.
Next I will need to get a sample of what he is coughing up through a trap that attaches to his suction machine.
Once I get that to the lab we will find out what exactly it is that has inhabited that right side of his chest. The pulmo believes he is going to need a highly aggressive and long series of antibiotics.
My son deserves a cape...
If you listened to him breathe through this crud, if you saw what he coughs up, if you witnessed the toll it takes on his little body....he truly is miraculous. He demands so little, suffers so much, and fights for survival every second of his life. He inspires me....because he wants nothing of this life...toys, clothes, money...things just don't matter. He only has a will to live, and its not even an existence that any other human being would desire.
He fights...every day....through seizures, weakness, mucous, blocked lungs, meds, tube feeds, therapies...
He fights so hard, and I am so grateful, and yet my mind can't wrap around how hard he has fought and survived the last 6 years, and how hard he continues to fight.
Yes, Hudson is a superhero....he is my hero, and I see his cape flowing behind him morning, noon and night as he carries a giant S on his back.
Tuesday, August 27, 2013
The End of Summer....
I can't believe this is the last week of our summer ...
for the most part it has been a really great couple of months. The weather here in Seattle has been absolutely gorgeous and warm, Hudson has managed to stay out of the hospital since May, I was able to jet set to CA kid- free, we did a family trip out of the country (Canada), we have enjoyed friends and family, bbq's, swimming, birthdays....the list goes on and on!
I am not ready to send my kids back to school, and all that it entails...early mornings, homework, schedules, therapists....I need another month or two of summer!
Hudson is still struggling as usual, with seizures and respiratory issues. I believe the vest has saved us from several trips to the hospital. I shake him 2-3 times a day. I think it keeps things loose and prevents him getting clogged up and into respiratory distress and failure. I guess the true test will be this fall/winter when the cold season is at its worst. I do think he has caught a few colds over the summer but has pulled through without hospitalization because of this vest. So I am really grateful we have it and serving its purpose.
This Thursday, I take Hudson first thing in the morning to Children's for a CT scan of his chest and sinuses. Thankfully, we do not have to use any anesthesia, but he needs to be sleepy and still. I will admit, I am a little nervous for what those results will show. He struggles so much in this part of his body, but answers and a new treatment to help this struggle would be the best case scenario. Remembering to lift Hudson in prayer on Thursday would mean so much.
for the most part it has been a really great couple of months. The weather here in Seattle has been absolutely gorgeous and warm, Hudson has managed to stay out of the hospital since May, I was able to jet set to CA kid- free, we did a family trip out of the country (Canada), we have enjoyed friends and family, bbq's, swimming, birthdays....the list goes on and on!
I am not ready to send my kids back to school, and all that it entails...early mornings, homework, schedules, therapists....I need another month or two of summer!
Hudson is still struggling as usual, with seizures and respiratory issues. I believe the vest has saved us from several trips to the hospital. I shake him 2-3 times a day. I think it keeps things loose and prevents him getting clogged up and into respiratory distress and failure. I guess the true test will be this fall/winter when the cold season is at its worst. I do think he has caught a few colds over the summer but has pulled through without hospitalization because of this vest. So I am really grateful we have it and serving its purpose.
This Thursday, I take Hudson first thing in the morning to Children's for a CT scan of his chest and sinuses. Thankfully, we do not have to use any anesthesia, but he needs to be sleepy and still. I will admit, I am a little nervous for what those results will show. He struggles so much in this part of his body, but answers and a new treatment to help this struggle would be the best case scenario. Remembering to lift Hudson in prayer on Thursday would mean so much.
My trip to CA, wine tasting.
Canada
12!
Surprise party at GWL!
Wednesday, May 29, 2013
Easing back to our routine
Thanks all for the prayers...
We got discharged Friday afternoon. It was a really long week, as I literally stayed inside those hospital walls the entire stay. My mom had a cold, and so I couldn't risk either one of them catching anything more, so I powered through the week with Hudson ....sleepless and weary.
I still feel like I am recovering.
He is doing okay. We did have a go at the therapy vibrating vest the entire time we were there. The RT said she has never seen a kid cough up so much stuff after using it. So guess what? I am getting trained so we can use one at home. I am hoping insurance will cover the very unfashionable $16,000 vest...not its not a Versaci or Gucci....it's a Hill-Rom Therapy Vest with a huge price tag!!!
Our hope is it will keep him out of the hospital if we use it on a regular basis.
Hopefully by the weeks end we will be using it daily.
Hudson is still super gunky like always, but sleeping like a champ and feeling much better.
Our plan for now is to get a CT scan sometime this summer of his chest. We need to know if the pseudomonas has been eradicated, or if it has buried itself deep into the tissue of the lung. Praying it is gone...because worst case scenario, he would need surgery to remove that portion of the lung...and that is just not an option for Hudson....so we don't entertain the idea. Hopefully the CT scan will just give us a baseline of what his chest looks like.
Hudson and I were happy to be home for the 3 day weekend, to be with family, and to be in our own beds!
I thought I would share some pics of recent big happenings over the last few months...
We got discharged Friday afternoon. It was a really long week, as I literally stayed inside those hospital walls the entire stay. My mom had a cold, and so I couldn't risk either one of them catching anything more, so I powered through the week with Hudson ....sleepless and weary.
I still feel like I am recovering.
He is doing okay. We did have a go at the therapy vibrating vest the entire time we were there. The RT said she has never seen a kid cough up so much stuff after using it. So guess what? I am getting trained so we can use one at home. I am hoping insurance will cover the very unfashionable $16,000 vest...not its not a Versaci or Gucci....it's a Hill-Rom Therapy Vest with a huge price tag!!!
Our hope is it will keep him out of the hospital if we use it on a regular basis.
Hopefully by the weeks end we will be using it daily.
Hudson is still super gunky like always, but sleeping like a champ and feeling much better.
Our plan for now is to get a CT scan sometime this summer of his chest. We need to know if the pseudomonas has been eradicated, or if it has buried itself deep into the tissue of the lung. Praying it is gone...because worst case scenario, he would need surgery to remove that portion of the lung...and that is just not an option for Hudson....so we don't entertain the idea. Hopefully the CT scan will just give us a baseline of what his chest looks like.
Hudson and I were happy to be home for the 3 day weekend, to be with family, and to be in our own beds!
I thought I would share some pics of recent big happenings over the last few months...
Hailey turned 9
Hudson turned 6
I turned...(never mind that one!)
Tuesday, May 21, 2013
How did we get here????
A week ago Hudson was doing so much better, and I thought we were finally getting to the bottom of his ongoing respiratory struggles...he sounded better, looked better, and NOW look at us....
We found ourselves driving to the ER at 1:00 a.m. this morning. We sat sleepless and miserable in the ER from 2a.m. until 10:00 a.m.
Hudson is on bipap, getting CTP every 4 hours with the therapy vibrating vest, on two I.V. antibiotics to treat what looks to now be pneumonia, as wells the pseudomonas, as well as rhinovirus!
We are a HOT mess!
I say we and in include myself in that equation because I am as sleep deprived as they come, and I froze sitting in the ER for 8 hours sitting in a hard chair in a stupor....I dream of a hot bath and sleep , but that is not happening as long as I am here. Not sure how long we will be here this time around.
So your prayers are once agin appreciated.....Hudson must kick this once and for all as my little champ continues to go to battle.
Saturday, May 11, 2013
Breathing Easier
Finally!!!
It took almost a week being on Ciprofloxacin to finally start seeing a change for the better. His coughing is SO much better, and no more long coughing spells. All the thick gunk he would cough up is less in volume and has thinned out alot. I still am getting some thick goobers but nothing like it was for the past several months.
Definitely breathing a sigh of relief....so good to see some relief in this area where it has been such a struggle for so long.
I honestly don't even know what Hudson's baseline is anymore, it has just been so long since he has been at baseline. Please continue to pray for this to clear up...it is not totally gone and his regimen is for 21 days, so we still have time to see the antibiotic continue to do its thing. In the meantime I am just so thankful to see some improvement.
Guess who turns 6 next week???
It took almost a week being on Ciprofloxacin to finally start seeing a change for the better. His coughing is SO much better, and no more long coughing spells. All the thick gunk he would cough up is less in volume and has thinned out alot. I still am getting some thick goobers but nothing like it was for the past several months.
Definitely breathing a sigh of relief....so good to see some relief in this area where it has been such a struggle for so long.
I honestly don't even know what Hudson's baseline is anymore, it has just been so long since he has been at baseline. Please continue to pray for this to clear up...it is not totally gone and his regimen is for 21 days, so we still have time to see the antibiotic continue to do its thing. In the meantime I am just so thankful to see some improvement.
Guess who turns 6 next week???
Friday, May 3, 2013
Fighting Infection
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!
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!
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.
Friday, November 2, 2012
Recovering at home
Yes, we are home now, antibiotics are doing it's thing, and Hudson is resting comfortably this morning in his own bed. When awake he is coughing up a ton of junk, all that stuff that has been sitting in his lungs. So grateful for his strong cough....Lots and lots of suctioning in the days ahead.
Thank to all who have been praying for him.
Deb
Thank to all who have been praying for him.
Deb
Tuesday, October 30, 2012
One sick kid
For those of you not connected to me on Facebook...Hudson has been admitted into the hospital today. He has pneumonia and partial collapsed lung with his heart being pushed over.
Prayers are appreciated.
Prayers are appreciated.
Friday, October 19, 2012
In a month...
Wow...a month has passed since I have updated. I am sorry to those who actually read my blog and have wondered how Hudson is doing...I really didn't mean to leave you hanging ( and I say that literally to the one person who may actually stop here and read.... as I am not even sure if anyone reads this blog anymore!)
Hudson is holding steady...his last hospitalization was on the heels of my mom's 4 week vacation on a cruise around the world....okay, not around the world, although it feels like she has been gone that long, but an amazing vacation she so incredibly deserves! Hudson just knew there was no margin for error once Nana was on the high seas, so he made sure to get his hospitalization in prior! Way to go Hudson! He got all the good juices he needed to keep him going while she has been gone....today, he is his regular gunky self, some days are better than others. This has actually been a pretty great week for him. Minimal seizures, sleeping well, not a ton of suctioning....praise God for a good week! We deserve them and will gladly take them!!! I should rephrase...HUDSON deserves them...he deserves far beyond "good" days....but we take what we we can get, and praise Jesus for the "good" ones.
I had a ton of anxiety with my mom heading out of town. I rely so much on her.
Honestly? It completely sucks to be my age and admit you need your mom....but I do. She takes over with Hunter and Hailey when Hudson needs medical attention, she is my best friend, she is my wine drinking partner, she is my confidant, she makes me laugh and sometimes frustrates me, BUT I adore her...and I right now I really miss her. I have some truly great friends....I am so blessed. Friends that knew it would be rough on me with my mom gone...after all, the past 10 months my mom and Fred have not left my side, they have been there at every moment...as I go through this process of trying to heal, and come to grips with all that has happened....they have never left my side. I encouraged them to go on this amazing cruise out of Hawaii, ending in Australia. I reassured them I would be just fine, the kids were great, Hudson would do well....and we are. In the meantime, those wonderful friends I mentioned have stepped in and filled my weekends. Girls nights out, dinner at friends, pumpkin carving and pizza night....they just let me know I am not alone. I am blessed.
What I have found, is when I stop worrying and let God do the work in my life...the work to figure out the small details that sometimes I just don't want to look at, He shows up and shows me He is working it all out for my good. I am grateful to know this. To know it is not all up to me.
So, all in all, things are good. The kids are doing really well in school...they have the absolute BEST teachers. Even the best "past" teachers....I got an email from Hunter's teacher from last year. Get this....he wanted to know if he could just spend some time with Hunter, as Hunter holds a special place in his heart and so they will hang out after school one day a week....shooting hoops, hitting the tennis ball, playing games, working on homework, etc. Like I said....God just shows up.
I am so proud of my kids...they have been through alot....they both are straight A students, and continue to give their all in everything they do. They are so faithful, and loving...I am so proud of who they are in spite of all our trials. I pray for them constantly...I rely on God as a father to my kids...and He shows up....He is a dad that is always there for his kids, he doesn't disappoint...
It is beautiful.
I am doing pretty okay myself. I have good and not so good days, but God shows up for me too....after all, I am one of His kids too! The week my mom left, Hudson's caretaker became my full time caretaker. She was only giving me 1-3 hours a couple days a week. The week my mom left her full time family of 4 years parted ways with her....their loss has been my gain. She is here pretty much 5 days a week, either from 10-3, or 9-2. At first I felt guilty spending so much time away from little Hudson, but I know in 5 years I have been there 24/7 with no help. I have always put myself on the back burner and taken care of everyone elses needs. Not anymore. I workout a minimum of 5 days a week. Hardcore cardio....where I am dripping and disgusting...it feels AMAZING! I throw my head phones on and listen to worship music or a sermon I missed and sweat! I feel the best I have felt in years....I am taking care of ME! It is truly the best therapy....good for the mind, body and soul. I started this process back in April with the help of my mom and Christina. I was worried with my mom being gone, my gym days would be far and few between....having her full time once my mom left was Gods way of once again taking care of those fine details.
It is all about Gods great providence....
life happens, tragedy happens, sadness ensues, the unexpected swallows you whole.....where do you go? Who do you turn to?
I have allowed my trials and tragedies to deepen my faith, to rely on God, to trust He who is in control...I am a work in progress...I don't always do it well or right....but I have a great God who makes it all well and right, even through all my screw ups! I am blessed....HE just shows up for me.
I leave you with our trip to the pumpkin patch last weekend, in our efforts to pick the perfect pumpkin!
Hudson is holding steady...his last hospitalization was on the heels of my mom's 4 week vacation on a cruise around the world....okay, not around the world, although it feels like she has been gone that long, but an amazing vacation she so incredibly deserves! Hudson just knew there was no margin for error once Nana was on the high seas, so he made sure to get his hospitalization in prior! Way to go Hudson! He got all the good juices he needed to keep him going while she has been gone....today, he is his regular gunky self, some days are better than others. This has actually been a pretty great week for him. Minimal seizures, sleeping well, not a ton of suctioning....praise God for a good week! We deserve them and will gladly take them!!! I should rephrase...HUDSON deserves them...he deserves far beyond "good" days....but we take what we we can get, and praise Jesus for the "good" ones.
I had a ton of anxiety with my mom heading out of town. I rely so much on her.
Honestly? It completely sucks to be my age and admit you need your mom....but I do. She takes over with Hunter and Hailey when Hudson needs medical attention, she is my best friend, she is my wine drinking partner, she is my confidant, she makes me laugh and sometimes frustrates me, BUT I adore her...and I right now I really miss her. I have some truly great friends....I am so blessed. Friends that knew it would be rough on me with my mom gone...after all, the past 10 months my mom and Fred have not left my side, they have been there at every moment...as I go through this process of trying to heal, and come to grips with all that has happened....they have never left my side. I encouraged them to go on this amazing cruise out of Hawaii, ending in Australia. I reassured them I would be just fine, the kids were great, Hudson would do well....and we are. In the meantime, those wonderful friends I mentioned have stepped in and filled my weekends. Girls nights out, dinner at friends, pumpkin carving and pizza night....they just let me know I am not alone. I am blessed.
What I have found, is when I stop worrying and let God do the work in my life...the work to figure out the small details that sometimes I just don't want to look at, He shows up and shows me He is working it all out for my good. I am grateful to know this. To know it is not all up to me.
So, all in all, things are good. The kids are doing really well in school...they have the absolute BEST teachers. Even the best "past" teachers....I got an email from Hunter's teacher from last year. Get this....he wanted to know if he could just spend some time with Hunter, as Hunter holds a special place in his heart and so they will hang out after school one day a week....shooting hoops, hitting the tennis ball, playing games, working on homework, etc. Like I said....God just shows up.
I am so proud of my kids...they have been through alot....they both are straight A students, and continue to give their all in everything they do. They are so faithful, and loving...I am so proud of who they are in spite of all our trials. I pray for them constantly...I rely on God as a father to my kids...and He shows up....He is a dad that is always there for his kids, he doesn't disappoint...
It is beautiful.
I am doing pretty okay myself. I have good and not so good days, but God shows up for me too....after all, I am one of His kids too! The week my mom left, Hudson's caretaker became my full time caretaker. She was only giving me 1-3 hours a couple days a week. The week my mom left her full time family of 4 years parted ways with her....their loss has been my gain. She is here pretty much 5 days a week, either from 10-3, or 9-2. At first I felt guilty spending so much time away from little Hudson, but I know in 5 years I have been there 24/7 with no help. I have always put myself on the back burner and taken care of everyone elses needs. Not anymore. I workout a minimum of 5 days a week. Hardcore cardio....where I am dripping and disgusting...it feels AMAZING! I throw my head phones on and listen to worship music or a sermon I missed and sweat! I feel the best I have felt in years....I am taking care of ME! It is truly the best therapy....good for the mind, body and soul. I started this process back in April with the help of my mom and Christina. I was worried with my mom being gone, my gym days would be far and few between....having her full time once my mom left was Gods way of once again taking care of those fine details.
It is all about Gods great providence....
life happens, tragedy happens, sadness ensues, the unexpected swallows you whole.....where do you go? Who do you turn to?
I have allowed my trials and tragedies to deepen my faith, to rely on God, to trust He who is in control...I am a work in progress...I don't always do it well or right....but I have a great God who makes it all well and right, even through all my screw ups! I am blessed....HE just shows up for me.
I leave you with our trip to the pumpkin patch last weekend, in our efforts to pick the perfect pumpkin!
 |
Tuesday, September 18, 2012
The season isn't here.....
And we are in the E.R.
Hudson has some type of viral infection but being admitted for what it is doing to him metabolically .
High ammonia levels, high heart rate, dehydrated, horrific gripping seizures.
I think he is all about making a statement during Mitochondrial Awareness Week.....
Hudson has some type of viral infection but being admitted for what it is doing to him metabolically .
High ammonia levels, high heart rate, dehydrated, horrific gripping seizures.
I think he is all about making a statement during Mitochondrial Awareness Week.....
Tuesday, August 28, 2012
Facing my Fears means Trusting
I have had my share of fear facing in one life time.
As a parent, I can't think of anything worse than finding out your child is not only sick, but suffers at the hands of an incurable disease. It is the most helpless feeling not being able to help your child, communicate with your child, mend what ails them....and honestly, with time it doesn't get any easier, it is just a painful reality daily.
The more I want to and tend to hold on to Hudson with white knuckles, is when I realize I really have to lay him at the feet of Jesus... over and over again....
I must trust He who created him...and pray Hudson's time here on earth is carved out longer than this disease allows him to live. That had not been an easy place to come to and I am not sure I am fully there....but the fear of having a sick child and the fear of outliving your child, can be paralyzing. I choose not to be paralyzed with fear...I think for much of Hudson's time here so far I have been numb with fear....fear of how I can care for him as he grows, fear of what pains him, fear of loosing him one day...fear creeps in often, and the enemy can and will pounce on vulnerability....
I choose Jesus, not fear.
So much of Hudson's life is out of my control....
I choose to replace my fears with trust...
I am going to trust God has a plan with Hudson, I am going to trust that His love for Hudson surpasses all the love I have for him, I choose to trust in the plan God has for today and will not worry about tomorrow.
Many days I have to repeat these thoughts in my head...because it is so easy to find myself worried, and blanketed in fear. I have to remind myself how big God is and how perfect His plan is and how imperfect mine are.
The state of WA has a huge Whooping Cough outbreak. I am not sure if other states are experiencing what we are, but it is bad here. I probably wouldn't be paying much attention to the epidemic if it weren't for Hudson. It has been seeded in the back of my head for some time now...none of my kids are vaccinated (worry) What happens if Hudson gets this? (worry) Do I need to vaccinate? (worry)
More worry...whooping cough has hit 2 of my best friends...
I found out a friend of mine who lives in Eastern WA, who was here for a visit, both her kids were confirmed whooping cough cases at the beginning of summer. Then just a week ago my neighbor and good friend got it....now she thinks her husband may have it. I know it is hard on a healthy person to endure....what happens to Hudson if he gets it????(worry, worry, worry)
So, the nagging at me lead me to call the mito nurse. She confirmed it is imperative Hudson, Hailey, and Hunter get the vaccination. Anybody who is in contact with him should be newly vaccinated. There is the belief that those who were vaccinated years ago, the vaccine may not have been strong enough, which is why it is spreading.
Yesterday we all got vaccinated, my mom and Kate did as well. I am asking anyone who we are in contact with often to get vaccinated. The kids will go back to school soon and it will be a whole new set of worries and exposure. Hudson has to have a series of vaccines because of his age, so he is not fully protected right now.
Whooping cough attacks the respiratory system. Hudson has many strikes against him, and as I was reminded, this virus kills healthy babies.
What more can I do?
I trust...
I will pray that God will blanket Hudson in protection, that His plan is greater than mine. That any fear will subside knowing God is in control, and He will bring me peace.
I remind myself how God is in control and has shown me time and time again of this...
I was told if Hudson got Swine Flu, he could die....lots of fear...and he did get it, and clearly survived....and actually got through it fairly easy...praise God!
A few months back he got RSV....another one that can be life threatening, especially for children like Hudson...he survived....praise God!
Yes, God has a plan for my super hero....I know Hudson is here to serve Him, to encompass Gods love and goodness and to spread that here on earth...
I thank God for him, for his mission, for giving me such an angel boy who is teaching me life lessons....I will pray for his mission to be a long one, that no whooping cough epidemic will touch my boy....I pray, I do my best to protect, and I trust. God is in control.
Be Strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6
As a parent, I can't think of anything worse than finding out your child is not only sick, but suffers at the hands of an incurable disease. It is the most helpless feeling not being able to help your child, communicate with your child, mend what ails them....and honestly, with time it doesn't get any easier, it is just a painful reality daily.
The more I want to and tend to hold on to Hudson with white knuckles, is when I realize I really have to lay him at the feet of Jesus... over and over again....
I must trust He who created him...and pray Hudson's time here on earth is carved out longer than this disease allows him to live. That had not been an easy place to come to and I am not sure I am fully there....but the fear of having a sick child and the fear of outliving your child, can be paralyzing. I choose not to be paralyzed with fear...I think for much of Hudson's time here so far I have been numb with fear....fear of how I can care for him as he grows, fear of what pains him, fear of loosing him one day...fear creeps in often, and the enemy can and will pounce on vulnerability....
I choose Jesus, not fear.
So much of Hudson's life is out of my control....
I choose to replace my fears with trust...
I am going to trust God has a plan with Hudson, I am going to trust that His love for Hudson surpasses all the love I have for him, I choose to trust in the plan God has for today and will not worry about tomorrow.
Many days I have to repeat these thoughts in my head...because it is so easy to find myself worried, and blanketed in fear. I have to remind myself how big God is and how perfect His plan is and how imperfect mine are.
The state of WA has a huge Whooping Cough outbreak. I am not sure if other states are experiencing what we are, but it is bad here. I probably wouldn't be paying much attention to the epidemic if it weren't for Hudson. It has been seeded in the back of my head for some time now...none of my kids are vaccinated (worry) What happens if Hudson gets this? (worry) Do I need to vaccinate? (worry)
More worry...whooping cough has hit 2 of my best friends...
I found out a friend of mine who lives in Eastern WA, who was here for a visit, both her kids were confirmed whooping cough cases at the beginning of summer. Then just a week ago my neighbor and good friend got it....now she thinks her husband may have it. I know it is hard on a healthy person to endure....what happens to Hudson if he gets it????(worry, worry, worry)
So, the nagging at me lead me to call the mito nurse. She confirmed it is imperative Hudson, Hailey, and Hunter get the vaccination. Anybody who is in contact with him should be newly vaccinated. There is the belief that those who were vaccinated years ago, the vaccine may not have been strong enough, which is why it is spreading.
Yesterday we all got vaccinated, my mom and Kate did as well. I am asking anyone who we are in contact with often to get vaccinated. The kids will go back to school soon and it will be a whole new set of worries and exposure. Hudson has to have a series of vaccines because of his age, so he is not fully protected right now.
Whooping cough attacks the respiratory system. Hudson has many strikes against him, and as I was reminded, this virus kills healthy babies.
What more can I do?
I trust...
I will pray that God will blanket Hudson in protection, that His plan is greater than mine. That any fear will subside knowing God is in control, and He will bring me peace.
I remind myself how God is in control and has shown me time and time again of this...
I was told if Hudson got Swine Flu, he could die....lots of fear...and he did get it, and clearly survived....and actually got through it fairly easy...praise God!
A few months back he got RSV....another one that can be life threatening, especially for children like Hudson...he survived....praise God!
Yes, God has a plan for my super hero....I know Hudson is here to serve Him, to encompass Gods love and goodness and to spread that here on earth...
I thank God for him, for his mission, for giving me such an angel boy who is teaching me life lessons....I will pray for his mission to be a long one, that no whooping cough epidemic will touch my boy....I pray, I do my best to protect, and I trust. God is in control.
Be Strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6
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Hudson Tyler
Our sweet angel!