trying to manage Hudson in respiratory distress....
Leads to another run to the ER... and admission for rhinovirus. Prayers are appreciated.
Monday, April 30, 2012
Tuesday, April 24, 2012
Botox anyone?
As my "big birthday" approaches, this post could very well be about me...because I'd be a liar if I said I have never considered filling the squinty lines between my eyes or my forehead with a syringe or two... BUT this is a Hudson post....and I could use a little feedback.
We saw ENT yesterday and decided Hudson's adenoids are not large enough that removal would make a significant difference. The risk of putting him under and surgery is....risky!
This dr. did agree Hudson sounds like he is drowning in his secretions, and so we decided our next step would be trying Botox injections in his salivary glands, which would be less risky.
There is a risk it could affect his tone, which is little to begin with, but we are going to try the smallest amount and see if it helps. Anyone out there try this or know how well this works with reducing secretions? Hudson is soaking the top half of his shirts and sounds junky ALL the time... would love it if this would help! We are scheduled in 2 weeks... 2 injections on each side of the face...
Hhhhmmmmm...it is actually a week before my birthday... Wonder if I could "accidentally" shove Hudson over and get my face in the way of those injections!
We saw ENT yesterday and decided Hudson's adenoids are not large enough that removal would make a significant difference. The risk of putting him under and surgery is....risky!
This dr. did agree Hudson sounds like he is drowning in his secretions, and so we decided our next step would be trying Botox injections in his salivary glands, which would be less risky.
There is a risk it could affect his tone, which is little to begin with, but we are going to try the smallest amount and see if it helps. Anyone out there try this or know how well this works with reducing secretions? Hudson is soaking the top half of his shirts and sounds junky ALL the time... would love it if this would help! We are scheduled in 2 weeks... 2 injections on each side of the face...
Hhhhmmmmm...it is actually a week before my birthday... Wonder if I could "accidentally" shove Hudson over and get my face in the way of those injections!
Thursday, April 19, 2012
Where do I begin?
I seem so removed from blogging...what used to be so therapeutic no longer holds the same effectiveness for me. Maybe I just need to dive in and start doing it again and hope I will find its purpose and usefulness in my life. I am not sure. If I may be honest, I have turned inward in the past 4 months...my world, my emotions, my life is very private...so coming here and blogging is difficult...because I have always been about being totally honest and raw...and yet the pain of the last 4 months I have experienced is nothing I want to share. There are less than a handful of people who have walked with me, who I have allowed "in"....we all deal with things, especially life changing things, differently...I have seen unbelievable love and grace poured out to me and the kids, and never knew how much we were loved by so many...it has been humbling. Jesus has shown up all around us....so grateful for the abundance of love. Sadly, there is the flip side...sometimes, some people thrive on gossip, and on others pain, I don't get why this is so, but maybe it is just human nature. That adds pain to the pain....I will not allow such things touch me or the kids. We press into God....He has been so faithful, and my kids are thriving and actually doing really well. No one would ever choose pain and heartache to face their children at such a young age (or any age), BUT, I see how my kids press into God, how their faith is built on Jesus and His promises...it blows me away, and teaches me to be more childlike. I am confident these trials have brought them in closer relationship with God and in faith...this will sustain them through life...and any future trials they will have to endure through life....and we all know how difficult life can be!
Then there is Hudson....I never imagined a bigger trial to have to endure, a more catastrophic, life changing event, then when we found out something was wrong with Hudson. It is still very painful and I am unsure I will ever come to full acceptance. The past 5 years....all I can say...it has been alot, more than one family should have to bare. Because I am honest, the truth is, I think about Hudson and his little life alot. Our family has endured so much...I see so many mito kids dying at the hands of this awful disease...our mito world has lost so many in the last year. Recently, Emily Evans flew to heaven, and my heart has been so heavy...when I found out I was full of tears. This life can be so unfair. I look at Hudson and am so grateful he is here...he pulls through each and every hospitalization, he fights so hard daily to simply live....the reality is this disease is cruel and unfair, and our children suffer so much. I don't want to ever imagine living without him, I can't imagine the kids and I dealing with anymore heart ache and suffering...I also know aside from a miracle, Hudson's life won't be a long one...and this just sits in the back of my head... no mom should have to stew on such thoughts. All I can do is trust God and His timing...He knows what we need, and when and how....I am certainly not the author of my life...so I am learning to trust He who is penning it.
Hudson is doing o.k. He is still gunky but in a different way then when he was so sick. Nest week we have 2 appointments at Children's to follow up from our hospitalization. The kids are on spring break this week and I had two offers to get away...one with a friend to the Oregon Coast, and another to Eastern Washington...I had to decline both...Hudson's needs are greater now than ever. He requires O2 at night...the converter is big and very loud. I do have a tank as an alternative, but I just felt home is the best place for him, and the best for my peace of mind. I feel bad for Hunter and Hailey...I didn't even tell them about the Oregon Coast with their friends because I knew it would only disappoint once I made my mind up. They would have liked to have gone to E Washington, just to get away, but they have been super understanding. We did have a double play date, they went to the Pacific Science Center with friends, my wonderful friends/neighbors took the kids to The Wizard of Oz in the movie theater and lunch, tonight Hailey will go on a dinner date with her Uncle to a fancy restaurant, we have some sleepovers planned...so it isn't a total bust. It is just such a hard balancing act....Hudosn's needs, keeping life stable and steady for Hunter and Hailey while trying to add fun, finding any time for me and my well being...
Slowly I have integrated some "me" time....how???? I was granted hours through DDD to get help in Hudsons care. He did not qualify for any nursing, but I could pretty much employ a trained/certified caregiver full time with the hours I was granted. I didn't have it in me to call an agency and get some random person...I went the route of getting word out in the community, praying God would provide the right person at the right time. So far, I have 1 gal. She works for 2 other families so she is filling the gap in her day with Hudson. We knew several mutual people, and although she is young (24) she has been doing this for 8 years and grew up with her own sister who has CP. So far so good....we have a flexible schedule so every week is different...it has allowed me on some days to go to work without brininging Hudson, workout more regularly, shopping kids free, and I even went to the opening Mariners game last Friday with NO kids!!! I paid her extra to keep all 3 :) I could really use another person or two but my mom is also going to get trained and be paid help as well. It has been great to have a non family member be able to feed Hudson, carry him, suction him, dress him, use his oxygen, etc. The little help I have gotten has made a huge impact on my life. I hope and pray for more of the right people to come along so I can really utilize the hours I have been given.
I am living a day at a time...I am healing with time.... I focus on God and my kids daily, and keep that as my priority. I am thankful for friends and family who lift us up daily, as we continue to plug along one day at a time. I am thankful for Jesus.
Then there is Hudson....I never imagined a bigger trial to have to endure, a more catastrophic, life changing event, then when we found out something was wrong with Hudson. It is still very painful and I am unsure I will ever come to full acceptance. The past 5 years....all I can say...it has been alot, more than one family should have to bare. Because I am honest, the truth is, I think about Hudson and his little life alot. Our family has endured so much...I see so many mito kids dying at the hands of this awful disease...our mito world has lost so many in the last year. Recently, Emily Evans flew to heaven, and my heart has been so heavy...when I found out I was full of tears. This life can be so unfair. I look at Hudson and am so grateful he is here...he pulls through each and every hospitalization, he fights so hard daily to simply live....the reality is this disease is cruel and unfair, and our children suffer so much. I don't want to ever imagine living without him, I can't imagine the kids and I dealing with anymore heart ache and suffering...I also know aside from a miracle, Hudson's life won't be a long one...and this just sits in the back of my head... no mom should have to stew on such thoughts. All I can do is trust God and His timing...He knows what we need, and when and how....I am certainly not the author of my life...so I am learning to trust He who is penning it.
Hudson is doing o.k. He is still gunky but in a different way then when he was so sick. Nest week we have 2 appointments at Children's to follow up from our hospitalization. The kids are on spring break this week and I had two offers to get away...one with a friend to the Oregon Coast, and another to Eastern Washington...I had to decline both...Hudson's needs are greater now than ever. He requires O2 at night...the converter is big and very loud. I do have a tank as an alternative, but I just felt home is the best place for him, and the best for my peace of mind. I feel bad for Hunter and Hailey...I didn't even tell them about the Oregon Coast with their friends because I knew it would only disappoint once I made my mind up. They would have liked to have gone to E Washington, just to get away, but they have been super understanding. We did have a double play date, they went to the Pacific Science Center with friends, my wonderful friends/neighbors took the kids to The Wizard of Oz in the movie theater and lunch, tonight Hailey will go on a dinner date with her Uncle to a fancy restaurant, we have some sleepovers planned...so it isn't a total bust. It is just such a hard balancing act....Hudosn's needs, keeping life stable and steady for Hunter and Hailey while trying to add fun, finding any time for me and my well being...
Slowly I have integrated some "me" time....how???? I was granted hours through DDD to get help in Hudsons care. He did not qualify for any nursing, but I could pretty much employ a trained/certified caregiver full time with the hours I was granted. I didn't have it in me to call an agency and get some random person...I went the route of getting word out in the community, praying God would provide the right person at the right time. So far, I have 1 gal. She works for 2 other families so she is filling the gap in her day with Hudson. We knew several mutual people, and although she is young (24) she has been doing this for 8 years and grew up with her own sister who has CP. So far so good....we have a flexible schedule so every week is different...it has allowed me on some days to go to work without brininging Hudson, workout more regularly, shopping kids free, and I even went to the opening Mariners game last Friday with NO kids!!! I paid her extra to keep all 3 :) I could really use another person or two but my mom is also going to get trained and be paid help as well. It has been great to have a non family member be able to feed Hudson, carry him, suction him, dress him, use his oxygen, etc. The little help I have gotten has made a huge impact on my life. I hope and pray for more of the right people to come along so I can really utilize the hours I have been given.
I am living a day at a time...I am healing with time.... I focus on God and my kids daily, and keep that as my priority. I am thankful for friends and family who lift us up daily, as we continue to plug along one day at a time. I am thankful for Jesus.
Tuesday, April 10, 2012
Quite an Easter
(I love how Hunter is cheering his sis on in the background!)
An update on Hudson to follow...
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Hudson Tyler
Our sweet angel!