We decided not to go to Portland for New Years....for several reasons really....Hudson has pretty much been home since the hospital, and we just don't want to jeopardize his health by doing too much with him, Paul leaves for 10 days on business for Hawaii come Monday, so he would like to be home before that trip.
So, New years the fam will be here at our house, which is easier...kids have their Wii, and all their new Christmas goodies, so they don't get "bored" trying to stay up til midnight. We are doing our crab feast here, games, Beatles Rock Band :) etc. My brother flies in today to be with us too, so the kids will be happy.
My good friend gave me a really nice humidifier for Hudson's room, and we used it last night and this morning his breathing is sooooo quiet, and his tummy is working less hard, pretty much normal breathing. I was so dissapointed yesterday morning when I woke to Hudson coughing at 6 a.m.He was wheezing a little so I gave him 2 puffs of the albuterol and suctioned him and he feel back asleep. We had almost gone 1 week without albuterol. This gave me the thought about the humidifer, and when I was at my friends house yesterday she had mentioned she was going to give theirs to Good Will....I totally lucked out! (Thank you-Thank you Mary Lynn- that was a perfect unexpected Xmas gift!) So we will see, long term, if the humidifier is helping, but for now, he seems to be breathing better!
My prayer and wishes for all of you in 2010.....
May Gods peace and love shower your families in the new year.
For all of us with sick children, I pray for therapies, medicines, and Gods miraculous touch to bring healing to many our children ... bringing restored health. ....that God may use our little soldiers to be a testament of his miraculous touch here on earth...what seems impossible is possible for God!!!
I pray for those who are discouraged and feeling defeated.
I praise God for those families who got there miralces in 2009, and pray that your babies continue to flourish and thrive in 2010.
Thanks to all my friends and family who have stuck by us through this last year....we covet all your prayers, and continue to ask for prayer for Hudson, for Paul and his commute Vegas /WA, and that all changes to happen 2010 will be easy as possible on the kids...I pray that somehow this all works well for our family, as it seems to be Gods will.
Be safe tonight.....
Love,
Deb
Thursday, December 31, 2009
Tuesday, December 29, 2009
Depression
It just hit me this morning....the one main reason why this Christmas seemed so joyous this year....this feeling of contentment, and that it was "the best" in many years.....it's simple really....Hudson.
You see, the holidays, especially Hudson's birthday, typically creates a feeling within, that I just want it to be over with. It is too painful to see my baby, who should be walking, talking, running around with excitement with his brother and sister, not doing those things and instead contends with seizures, coughing, mucous getting suctioned out of the back of this throat that makes him gag and tear up..... and I have to inflict this upon him.
Holidays, birthdays.....they don't discriminate...they don't give him "the day off" from his daily work battling this life of a broken body...he is inflicted through it all....we witness it daily, no vacation from it, no holiday giving us the day off either.
I do believe he knows the love of his Mamma, his Nanna and I am certain he adores his big sister, BUT these celebrations always seem to be a reminder of what Hudson is not doing, and it becomes a feeling of just getting through it, wanting it over, so we don't have to be reminded.
It is strange though....I think God gave me a gift by hospitalizing Hudson right before Christmas....I know that sounds crazy, and strange.....but......I was so grateful just to be home for Christmas, with Hudson, he was home...with all of us....he was and is our reason for a celebration, for a great, joyous Christmas. With Mitochondrial disease, I have been told by his neurologist, that typically what takes these kids lives is not the disease itself, but typical compounding viruses that their body simply can't continue fighting off and they shut down. Mito is all about energy, producing energy, sustaining the body's organs and functions through these energy cells, if they are dysfuctional, it makes it very hard to fight off viral infections....daily living without viral infection is is a battle in itself....then throw seizures, GI issues, and muscle weakness, and it is war raging within this little boys body to be here....then throw H1N1 on top of that and now this virus on top of that....do you see what a miracle my little boy is?
That is why God filled me with joy and gladness...He made me realize the greatest gift this year, as we celebrate this birth of our Savior, is the gift of Hudson, who is here, present, with us.....it doesn't matter if he is not running, or talking, or tearing presents open with his brother and sister...his presence is enough this Christmas, simply who he is....those big brown eyes, his flat little head, his smile that he works so hard to reveal....He is such a fighter....I have said this before, but it always amazes me how many times I hear from nurses and doctors when we have been in the hospital and they do something Hudson is trying to resist....."he is so strong!" A disease where strength is all lacking, and yet he musters strength from where? Well, I believe God gives this soldier the strength to continue his battle, and I pray that Hudson's gift of strength through God is one that stay with him for a very long time.
I wanted to do this post, so come May, when Hudson's 3rd birthday is here, and the overwhelming feeling of depression and sadness kicks in, when I think of what he should be doing at 3 and what he is not doing at 3......... I can look back and remind myself of a time where I could have focused on the sadness and the negative of this depressing disease and chose to find gratefulness and joy.
You see, the holidays, especially Hudson's birthday, typically creates a feeling within, that I just want it to be over with. It is too painful to see my baby, who should be walking, talking, running around with excitement with his brother and sister, not doing those things and instead contends with seizures, coughing, mucous getting suctioned out of the back of this throat that makes him gag and tear up..... and I have to inflict this upon him.
Holidays, birthdays.....they don't discriminate...they don't give him "the day off" from his daily work battling this life of a broken body...he is inflicted through it all....we witness it daily, no vacation from it, no holiday giving us the day off either.
I do believe he knows the love of his Mamma, his Nanna and I am certain he adores his big sister, BUT these celebrations always seem to be a reminder of what Hudson is not doing, and it becomes a feeling of just getting through it, wanting it over, so we don't have to be reminded.
It is strange though....I think God gave me a gift by hospitalizing Hudson right before Christmas....I know that sounds crazy, and strange.....but......I was so grateful just to be home for Christmas, with Hudson, he was home...with all of us....he was and is our reason for a celebration, for a great, joyous Christmas. With Mitochondrial disease, I have been told by his neurologist, that typically what takes these kids lives is not the disease itself, but typical compounding viruses that their body simply can't continue fighting off and they shut down. Mito is all about energy, producing energy, sustaining the body's organs and functions through these energy cells, if they are dysfuctional, it makes it very hard to fight off viral infections....daily living without viral infection is is a battle in itself....then throw seizures, GI issues, and muscle weakness, and it is war raging within this little boys body to be here....then throw H1N1 on top of that and now this virus on top of that....do you see what a miracle my little boy is?
That is why God filled me with joy and gladness...He made me realize the greatest gift this year, as we celebrate this birth of our Savior, is the gift of Hudson, who is here, present, with us.....it doesn't matter if he is not running, or talking, or tearing presents open with his brother and sister...his presence is enough this Christmas, simply who he is....those big brown eyes, his flat little head, his smile that he works so hard to reveal....He is such a fighter....I have said this before, but it always amazes me how many times I hear from nurses and doctors when we have been in the hospital and they do something Hudson is trying to resist....."he is so strong!" A disease where strength is all lacking, and yet he musters strength from where? Well, I believe God gives this soldier the strength to continue his battle, and I pray that Hudson's gift of strength through God is one that stay with him for a very long time.
I wanted to do this post, so come May, when Hudson's 3rd birthday is here, and the overwhelming feeling of depression and sadness kicks in, when I think of what he should be doing at 3 and what he is not doing at 3......... I can look back and remind myself of a time where I could have focused on the sadness and the negative of this depressing disease and chose to find gratefulness and joy.
Saturday, December 26, 2009
Christmas 2009
In spite of the unexpected hospital stay, the stress of preparing for Christmas on a tighter schedule, everything went off wonderfully, in fact, I think we may have had one of the best Christmas' in a long time! (wouldn't have expected that!)
We were able to still go to engagements that we had planned months ago, and uphold yearly traditions, in spite of the "crunch!"
So.....I got to go with my mom, as planned, to the Rockettes and out for dinner. I highly, highly recommend this show if it comes to your town...absolutely wonderful, fun, and ends with an amazing live narration of the nativity...it made me teary-eyed and major goose-bumps! My kids are going for sure next time they are in town.
We were also able to go on the Christmas Cruise that Fred takes us on every year out on Lake Washington. Hudson of course didn't go, so Paul was with him at the time in the hospital. Stinks that we couldn't all be together, but that is becoming our "normal" in many ways. Here are some pics on the Christmas Cruise...
We went to a great little Italian restaurant in Kirkland and then walked to the ship. As you can tell it was a bit windy and rainy, but we had a blast! Oh, and just for those of you who have picky eaters, that would be a plate of smoked salmon pasta that Hunter and Hailey shared, which they LOVED...and they thought the dipping oil for the bread was heavenly! Not the typical 5 and 8 year old palate...the waitress got a kick out of them!
Thanks to one of Santa's helpers, a.k.a my friend Valerie, took my 2 while my mom took Hudson, and I got to get all of my grocery shopping done....Trader Joes, Costco, and grocery store, it took hours because of all the huge lines. My helper even made Christmas cookies with the kids so Santas cookies were ready for him...one less thing to have to tackle.
Val and I also took the kids, in one van (that was crazy!) to Spanaway, where you drive through a lighted display in this huge park....the kids went wild, out of there seats, looking at all of the fun characters, etc. We do it every year, but something about this year, doing it all together, made it that much more fun and exciting!
Christmas Eve I cooked a lot....2 pans of holiday bars, 2 breakfast casseroles, sticky buns, and a potato dish for Christmas day. By 7:00 I was done in the kitchen, showered, had all the munchkins dressed and ready to go to my mom's. It was the best Christmas Eve dinner I have had in long time....we had fillets with the most amazing mushroom sauce, lobster, twice baked potato, asparagus, and croissants from William Sonoma...seriously sinful!
(Christmas Eve...)
Hunter was thoroughly enjoying his surf and turf! My mom is an amazing cook and the food was so good...I am full for the rest of the year!
The best part, was the food was soooo good that my brother and my husband willingly helped clear the table and wash the dishes while my mom and I sat and finished our wine, cuddled with Hudson, and enjoyed watching the 2 guys help in the kitchen....I even have a pic to prove it!
For dessert we had our Happy Birthday Jesus Pie, that the kids got to decorate with sprinkles, and sing their glories to our Savior....our pie looks a bit gross, but they enjoyed decorating it and eating it!
Hudson even liked it!
Off to church we went at the 10 p.m. service. The kids were tired but they did great! When we came home it was jammies, letters to Santa, sprinkle of pixie dust for the reindeers to see our house, and eventually, at about 12:30, the kids got to bed. Paul and I were up until 2 a.m.
You can only imagine how tires we were on Christmas day, but the adrenaline of the kids kept us going. Santa did well, got them their top-on-the-list-item,and the rest of us got them everything else.
On Hailey's list to Santa, she had asked for Hudson to get a new Webkinz, and Hunter asked Santa to get him a glowing bouncy ball.....
It is very hard for me to get gifts for Hudson...he has a ton of "baby" toys, with lights and music, and I hate to buy, just to buy...and he doesn't know, as much as I wished he did, reality....no clue...so I got him a few stocking stuffers...a pinwheel, squishy ball, and a Webkinz (all 3 got one in their stocking) and then I got some hand puppets that were fly's and had metallic wings.
That was it. My mom gave me some money for clothes and she got him a cute little Snoopy, piano playing, musical plush.
My brother, I have to give him credit, put a lot of thought into Hudson's gift. This is what he brought in for him...it looked like a big, heavy, body bag....
The kids of course were thrilled to open all of Hudson's gifts for him......
And this is what he got him.....it is not a stuffed animal....it is a Sleep Number Dog for him to lye on, do therapy on, etc. It is from one of those Sleep Number Stores. He really put a lot into getting Hudson a cool gift...pretty cool Uncle!
I had Christmas brunch after opening presents...I promised I wouldn't show the family pic, so this is just the kiddies...
Christmas dinner was another fabulous dinner at mom's. My Aunt and Lester came over from Portland which was fun and so did Fred. We had more present exchanges, dinner and then a mean game of "Chicken Feet" (dominoes game) which Fred won!
Hudson got some new Hanna jammies from my aunt and Fred...the hat cracked me up.....
Another late night last night...I crashed so hard....I am still recouping from the holiday craziness!
Hudson is doing so well, considering a week ago he was so bad. I am still suctioning but haven't used the albuterol in several days. We have been keeping him at home, not taking him out in public, just to make sure he doesn't "catch" anything else. Seizures have gotten better since we have been home too...back to where they were. I think that getting home, back on his regular schedule has been key. The first few nights home I was waking up at about 3-5 a.m. and having to suction him and give him the albuterol. Slowly he is getting better. I don't hear him coughing in the middle of the night, and no breathing treatments in the last 3 days. Praise God for the strength of this little guy. I still suction him a lot, but like I said we are making very slow progress toward getting better.
Looks like we are heading to Portland for New Years....as long as Hudson stays well. We will stay with my brother, Fred, my mom and Katelyn will get a hotel and Fred is bringing crab...yum-o! My aunt wants to have us all over New Years Day for breakfast with my cousin there too....should be fun...my family is a bit crazy (in a good way) so we always have a good time!
Hope all of you...my family who couldn't be with us, friends, and my internet bloggers/friends.....are having a great Christmas weekend, with loved ones.....I am grateful for such a Christ filled season with His amazing grace, love and glory shining all around me and my family.
We were able to still go to engagements that we had planned months ago, and uphold yearly traditions, in spite of the "crunch!"
So.....I got to go with my mom, as planned, to the Rockettes and out for dinner. I highly, highly recommend this show if it comes to your town...absolutely wonderful, fun, and ends with an amazing live narration of the nativity...it made me teary-eyed and major goose-bumps! My kids are going for sure next time they are in town.
We were also able to go on the Christmas Cruise that Fred takes us on every year out on Lake Washington. Hudson of course didn't go, so Paul was with him at the time in the hospital. Stinks that we couldn't all be together, but that is becoming our "normal" in many ways. Here are some pics on the Christmas Cruise...
Thanks to one of Santa's helpers, a.k.a my friend Valerie, took my 2 while my mom took Hudson, and I got to get all of my grocery shopping done....Trader Joes, Costco, and grocery store, it took hours because of all the huge lines. My helper even made Christmas cookies with the kids so Santas cookies were ready for him...one less thing to have to tackle.
Val and I also took the kids, in one van (that was crazy!) to Spanaway, where you drive through a lighted display in this huge park....the kids went wild, out of there seats, looking at all of the fun characters, etc. We do it every year, but something about this year, doing it all together, made it that much more fun and exciting!
Christmas Eve I cooked a lot....2 pans of holiday bars, 2 breakfast casseroles, sticky buns, and a potato dish for Christmas day. By 7:00 I was done in the kitchen, showered, had all the munchkins dressed and ready to go to my mom's. It was the best Christmas Eve dinner I have had in long time....we had fillets with the most amazing mushroom sauce, lobster, twice baked potato, asparagus, and croissants from William Sonoma...seriously sinful!
(Christmas Eve...)
The best part, was the food was soooo good that my brother and my husband willingly helped clear the table and wash the dishes while my mom and I sat and finished our wine, cuddled with Hudson, and enjoyed watching the 2 guys help in the kitchen....I even have a pic to prove it!
Off to church we went at the 10 p.m. service. The kids were tired but they did great! When we came home it was jammies, letters to Santa, sprinkle of pixie dust for the reindeers to see our house, and eventually, at about 12:30, the kids got to bed. Paul and I were up until 2 a.m.
You can only imagine how tires we were on Christmas day, but the adrenaline of the kids kept us going. Santa did well, got them their top-on-the-list-item,and the rest of us got them everything else.
That was it. My mom gave me some money for clothes and she got him a cute little Snoopy, piano playing, musical plush.
My brother, I have to give him credit, put a lot of thought into Hudson's gift. This is what he brought in for him...it looked like a big, heavy, body bag....
My Aunt Edith
Hudson is doing so well, considering a week ago he was so bad. I am still suctioning but haven't used the albuterol in several days. We have been keeping him at home, not taking him out in public, just to make sure he doesn't "catch" anything else. Seizures have gotten better since we have been home too...back to where they were. I think that getting home, back on his regular schedule has been key. The first few nights home I was waking up at about 3-5 a.m. and having to suction him and give him the albuterol. Slowly he is getting better. I don't hear him coughing in the middle of the night, and no breathing treatments in the last 3 days. Praise God for the strength of this little guy. I still suction him a lot, but like I said we are making very slow progress toward getting better.
Looks like we are heading to Portland for New Years....as long as Hudson stays well. We will stay with my brother, Fred, my mom and Katelyn will get a hotel and Fred is bringing crab...yum-o! My aunt wants to have us all over New Years Day for breakfast with my cousin there too....should be fun...my family is a bit crazy (in a good way) so we always have a good time!
Hope all of you...my family who couldn't be with us, friends, and my internet bloggers/friends.....are having a great Christmas weekend, with loved ones.....I am grateful for such a Christ filled season with His amazing grace, love and glory shining all around me and my family.
Tuesday, December 22, 2009
Made it...
....home, last night. I really don't think Hudson "sounds" all that great, and too be honest, after what we went through last Thursday, I think I am a bit traumatized and nervous being home.
A re-cap....Hudson didn't seem well last Thursday....coughing lots, threw up with my mom, and by evening he was coughing and thick yellow mucous was coming out his nose and mouth. He had diarrhea that night too. The coughing and mucous were so difficult for him to handle that it became a vicious cycle of coughing-crying-mucous-suctioning. I thought on Friday I would call his pediatrician, because the antibiotic he was on for 10 days did nothing! At 3 a.m. I heard Hudson faintly coughing (coughing in the middle of the night has been the norm the past 5 months) I remember waking, hearing him cough, and thinking he didn't sound like he was awake or too irritated, so I closed my eyes, thinking I was going to go back to sleep. Something nudged me to get up and check on him, in the past I have heard him cough much worse, where he can't stop as if a tickle in the throat, and I instantly get up to position him differently to help stop the drip or tickle...this cough did not alarm me...But he did have a rough Thursday so maybe that is why I got up...I am just thankful I did....I went in his room and his eyes were closed and he was barely getting air....it was almost like an asthmatic breath...very wheezy in and out and very labored. I scooped him up and woke Paul. I have come to realize I don't do well in an emergency sitaution...I don't think clearly....thank God Paul does....he stays calm and rational....not me....my thoughts were.... do I have time to throw him in my car and drive to Children's Hospital? or do I take him to our local Children's hospital? Well, I pretty much knew he couldn't make it to Seattle....but that is when Paul said get dressed, you need to get an ambulance for him....my response....call 9-1-1?????? (Yeah, you don't want me around in an emergency)....YES DEBBIE, CALL 911!!!!!!!!!!!
Seems like forever until they came,,,they didn't even check his O2, they took one look and knew this could be a matter of life and death...I grab some of his meds, the emergency protocol letter from Dr. S, and I hopped in the ambulance. One of the medics shut our front door and locked Paul out of the house. He was banging on the door, ringing the door bell, trying to wake Hunter and Hailey up so they could let him in, they were fast asleep...never knew a thing! I had my cell so I had to call my mom.....imagine the panic for her....although she said I sounded very calm....ambulances in front of our house, Hudson lying inside, Paul locked out.....all out of a dead sleep, she woke to that! So she got Paul in the house and off I went.
Mary Bridge treated Hudson with some breathing treatments, and he was running a fever. They were very nice but I think they knew with his dx of mito disease this was out of their league, the E.R. doc was on board with me to get him admitted to Children's. By 8ish we were transported via ambulance to Children's. Once there, I started feeling more comfortable...knowing all his doctors are there. Dr. Saneto had been talking to the ER doc at Mary Bridge, telling her what to test for immediatley and what they could wait to do once he got to Seattle. I am so grateful for his accessibility. I was talking to one of the docs on the nuero team when in the ER. He was trying to explain to me how the mitocholdrial are affected when one has compounding viruses. Then he made the comment that he was reading some literature that just came out on Mito disease and he said he had to smile when after reading he saw who wrote the article...Dr. Saneto. He said that really the best doc to explain mito is Dr. S not himself and that he knew we have been through all the mito talks with Dr. S......then he said....." do you know Dr. Saneto is one of the top 5 nuerologist in the country specializing in Mitochondrial disease? Hudson is in the best hands!"
Again, confirmation....with Vegas, where Hudson needs to be, how dire it is for him to have "the best" This disease sucks, BUT, I have total confidence that Hudson will have the latest therapies, drugs, etc. because of one very dedicated doctor.
So, it hasn't been a breeze since home. I gave Hudson an albuterol treatment when we got home...he was wheezing a little. Then...at 3 a.m....beginning to hate that hour....I woke to check on him, and he didn't sound very good to me. So I deep suctioned him, which made him soooo mad, and gave hime another albuterol treatment, and he sounded better after about 15 minutes...he fell asleep. I kept waking and checking on his after that. Scary stuff. Really, really scary.
Praying we stay out of the hospital....I have lost 5 days...once again...the house a disaster, laundry up to my eye balls, last minute gift shopping, wrapping, food, baking..........most importantly though.....we are home.....Hudson is home......please just pray for him to get better, for us to see improvement.....that is the only gift I want!
A re-cap....Hudson didn't seem well last Thursday....coughing lots, threw up with my mom, and by evening he was coughing and thick yellow mucous was coming out his nose and mouth. He had diarrhea that night too. The coughing and mucous were so difficult for him to handle that it became a vicious cycle of coughing-crying-mucous-suctioning. I thought on Friday I would call his pediatrician, because the antibiotic he was on for 10 days did nothing! At 3 a.m. I heard Hudson faintly coughing (coughing in the middle of the night has been the norm the past 5 months) I remember waking, hearing him cough, and thinking he didn't sound like he was awake or too irritated, so I closed my eyes, thinking I was going to go back to sleep. Something nudged me to get up and check on him, in the past I have heard him cough much worse, where he can't stop as if a tickle in the throat, and I instantly get up to position him differently to help stop the drip or tickle...this cough did not alarm me...But he did have a rough Thursday so maybe that is why I got up...I am just thankful I did....I went in his room and his eyes were closed and he was barely getting air....it was almost like an asthmatic breath...very wheezy in and out and very labored. I scooped him up and woke Paul. I have come to realize I don't do well in an emergency sitaution...I don't think clearly....thank God Paul does....he stays calm and rational....not me....my thoughts were.... do I have time to throw him in my car and drive to Children's Hospital? or do I take him to our local Children's hospital? Well, I pretty much knew he couldn't make it to Seattle....but that is when Paul said get dressed, you need to get an ambulance for him....my response....call 9-1-1?????? (Yeah, you don't want me around in an emergency)....YES DEBBIE, CALL 911!!!!!!!!!!!
Seems like forever until they came,,,they didn't even check his O2, they took one look and knew this could be a matter of life and death...I grab some of his meds, the emergency protocol letter from Dr. S, and I hopped in the ambulance. One of the medics shut our front door and locked Paul out of the house. He was banging on the door, ringing the door bell, trying to wake Hunter and Hailey up so they could let him in, they were fast asleep...never knew a thing! I had my cell so I had to call my mom.....imagine the panic for her....although she said I sounded very calm....ambulances in front of our house, Hudson lying inside, Paul locked out.....all out of a dead sleep, she woke to that! So she got Paul in the house and off I went.
Mary Bridge treated Hudson with some breathing treatments, and he was running a fever. They were very nice but I think they knew with his dx of mito disease this was out of their league, the E.R. doc was on board with me to get him admitted to Children's. By 8ish we were transported via ambulance to Children's. Once there, I started feeling more comfortable...knowing all his doctors are there. Dr. Saneto had been talking to the ER doc at Mary Bridge, telling her what to test for immediatley and what they could wait to do once he got to Seattle. I am so grateful for his accessibility. I was talking to one of the docs on the nuero team when in the ER. He was trying to explain to me how the mitocholdrial are affected when one has compounding viruses. Then he made the comment that he was reading some literature that just came out on Mito disease and he said he had to smile when after reading he saw who wrote the article...Dr. Saneto. He said that really the best doc to explain mito is Dr. S not himself and that he knew we have been through all the mito talks with Dr. S......then he said....." do you know Dr. Saneto is one of the top 5 nuerologist in the country specializing in Mitochondrial disease? Hudson is in the best hands!"
Again, confirmation....with Vegas, where Hudson needs to be, how dire it is for him to have "the best" This disease sucks, BUT, I have total confidence that Hudson will have the latest therapies, drugs, etc. because of one very dedicated doctor.
So, it hasn't been a breeze since home. I gave Hudson an albuterol treatment when we got home...he was wheezing a little. Then...at 3 a.m....beginning to hate that hour....I woke to check on him, and he didn't sound very good to me. So I deep suctioned him, which made him soooo mad, and gave hime another albuterol treatment, and he sounded better after about 15 minutes...he fell asleep. I kept waking and checking on his after that. Scary stuff. Really, really scary.
Praying we stay out of the hospital....I have lost 5 days...once again...the house a disaster, laundry up to my eye balls, last minute gift shopping, wrapping, food, baking..........most importantly though.....we are home.....Hudson is home......please just pray for him to get better, for us to see improvement.....that is the only gift I want!
Monday, December 21, 2009
home?
Right now it looks like we could be going home!!!
Not necessarily because he is doing so good but because hhe is about the best he is going to get. I am ready to go home, and I think Hudson is too. He needs solid sleep,no poking,prodding,machines,with all there noises and alarms. It looks as if I will get a script for albuterol just as a precaution if I hear wheezing at home.I have noticed the albuterol makes him WILD!restless and sort of hyped.
I asked for some of the tiny tubes that attach to the suction machine,they use it in his mouth and actually can get some of that pooling in the back of hus throat. It can help him cough too which brings up the larger loogies and then I need the larger catheter.
My mom is on her way with my car and kids. The hospital finally has the flu clinic open to all family members so Hunter,Hailey, and mommy are getting the seasonal flu shot.
Not necessarily because he is doing so good but because hhe is about the best he is going to get. I am ready to go home, and I think Hudson is too. He needs solid sleep,no poking,prodding,machines,with all there noises and alarms. It looks as if I will get a script for albuterol just as a precaution if I hear wheezing at home.I have noticed the albuterol makes him WILD!restless and sort of hyped.
I asked for some of the tiny tubes that attach to the suction machine,they use it in his mouth and actually can get some of that pooling in the back of hus throat. It can help him cough too which brings up the larger loogies and then I need the larger catheter.
My mom is on her way with my car and kids. The hospital finally has the flu clinic open to all family members so Hunter,Hailey, and mommy are getting the seasonal flu shot.
Sunday, December 20, 2009
Update
Paul and I swapped places...I came home last night and he is at the hospital. I needed to at least shower and get some clean clothes as I had been the one at 3 a.m. Friday morning in the ambulance with Hudson.
The latest report...yesterday's chest xray showed no pneumoniam good news. It is showing some type of viral infection though, but it doesn't seem they are giving him anything for it.
They started albuterol treatments on a consistent basis, every 4 hours I think. It help to open the constricted airways. He is still breathing on his own, and Paul said with the ongoing breathing treatments he is not working as hard to breathe. He is still coughing a lot, and is not running a fever.
The one thing with Hudson is that he one minute can seem seem like he is doing well, and then within an hour he can deteriorate fast, really fast!
Seizures have been really bad, I guess his bodies reaction to all of the chaos.
The other issue is his ammonia levels have been high, and they have to do blood draws to check this. This is a metabolic issue and it was explained to me that kids with mito disease have a tendency to have high ammonia levels with viral infections.
Driving home I finally let go of some emotion. I have stayed pretty strong, especially running on no sleep, but my heart breaks to see Hudson work so hard, day-to-day, to exist. I just want him home.My strength ran away from me on the drive home....the tears flowed as I thought about the last 48 hours. My fears and thoughts creep in and I wonder if he is deteriorating, if this is the beginning of a new symptom, breathing issues. But he does have a virus of some sort, so rationally I know that is why his breathing is affected.
Being here without him is so odd to me. I keep listening for him, I want to go in his room and check on him, I need to feed and do his meds, and yet he is not here...so strange.
I just got another text update from Paul...they are going to try and get him back on his Pediasure feeds today and are talking about sending him home tomorrow! He must be doing much better this morning! Yeah!
I am heading back to stay tonight...
THANK YOU, THANK YOU, THANK YOU......for all the prayers, getting him on your blogs, prayer chains, etc. Don't stop....Our family is so grateful for all the phone calls, email,comments left on this blog and the love and support we have received from so many....God Bless all who read and continue to lift our little angel up in Gods care.
(once I am in the hospital I can only update in the comment section on my blackberry, so look there for updates!)
Love-Deb
Friday, December 18, 2009
Urgent Prayer request...
Hello to all who read and love the Austin family. I am Debbie's friend and posting for her today because she is enroute to Children's hospital via ambulance. 911 was called this morning because Hudsons breathing was labored and he was lethargic. They were taken to Mary Bridge in Tacoma and they completed a chest xray and feel like it is some sort of pneumonia. They are transporting him via ambulance to Children's for further evaluation. He is really sick and so I know the family would appreciate each and every one of you using whatever sources you have to get Hudson on prayer chains so our Father can hear our petition on behalf of our little angel, Hudson. Thanks to all who love and support this dear family.
Wednesday, December 16, 2009
The Unpredictable
From my experience, most kids are pretty unpredictable, especially young ones.
Just when Hunter and Hailey have gotten to an age of reasoning, understanding, and learning the expectations and consequence for behavior, the "unpredictability factor" has gone way down. In fact, I was thinking how just a few short years ago, I hated going out to eat, at a restraunt, with my kids, because it just wasn't fun, relaxing or enjoyable...home was sooo much easier! Now, they are at an age, where taking them out is fun, going to Bennihana's was so fun, they were so well behaved, and truly enjoyed the experience...in fact all of us did! The other group at our table even commented on how well behaved and well mannered they were.
I realize this uncertainty is what I live with day to day, hour to hour, with Hudson. There is so much uncertainty when it comes to seizures, crying...the why's and what's, tummy issues...(thankfully still no vomiting, in spit of extreme coughing and gagging)......every time I go out, especially when I know we need a "good" baby, a quiet baby, I always wonder if it will be a nightmare or a dream.....Sunday, a dream....we really lucked out with how well he did, Tuesday....a nightmare!
The kids school Christmas performance.....it didn't help that I was a little stressed, getting them there 10 minutes late, and it was pouring rain, and I had them all dressed in their Christmas best....getting drenched as we ran in to the church. Paul brought Hudson in after parking the car, my mom and Fred and my brother (who surprised the kids and flew up yesterday just to see the performance) met us there. My mom wanted to hold Hudson, so as I attempted to get him out of the stroller, picking him up, holding him against me, the stench of poop filled the air, and his damp dress pants were up against me, he was loaded!
So me and this lovely mess ran in to the bathroom, to change him and as I strip his pants the poop goes smearing down his leg, on to his socks....as bad as it could possibly get...stress level rises once again as the lights had dimmed just as I was leaving to tackle this mess...the holiday show was beginning.
I had a blanket, thank goodness, because Hudson had no pants or socks! I just have to say cleaning him up was such a disaster, that it was even in his toes....it was the kind where you just put them in the tub and bathe them right then and there...if you were home that is. So, I took him back in to the church, half naked, and let him just sit in his stroller. I kept looking at my sleeves and top, convinced I must have poop smeared on me somewhere...I felt like a human diaper pail! Hudson was pretty good for about the first 40 minutes or so, but as soon as Hunter walked on stage, he got restless and started fussing, which quickly turned into crying...I couldn't believe it....I had my video camera all ready and my regular camera...up I went with Hudson. He quieted as I rocked him in my arms, and my arms were getting tired, so I thought I could go back and sit down, and as soon as I did....crying started again! Fred....who is like the dad I never had (my dad died when I was 3) ran to the back of the church, with Hudson's stroller, and told me to I shouldn't have to miss my kids on stage....Hudson at this point was screaming so loud we were in the vestibule, church doors closed and you could still here him! I took Fred up on it, and he stayed with Hudson so I could watch the rest of the performance. I got the looks...from some...to get out of the church as soon as he started squawking. I get some of those looks, from those who wondered why my son was half naked, and I got that puzzled look from some, as to why I couldn't calm or reason with what appears to be a toddler.
The Hudson packaging is so deceiving....you just can't tell what is going on with him by looking at him...he has no dysmorphic features or anything odd to his appearance to let strangers know there is something wrong with him....seizures in public usually do the trick, and I hate when that happens more than anything, more than the crying or pooping mess! So yesterday....a bad night for the poor little guy. Not sure why...maybe he was less than thrilled sitting bottomless, ans shoeless in public. I guess it would be a good thing if he was uncomfortable...at least he was trying to let us know!
Real quick....not sure why, but since right before Vegas, when I saw those clusters, and was freaking out, well since I have been home I have seen none! I am thinking it had something to do with the steroid for the croup, maybe? Never got any info from the neuro. His seizures have been, do I dare say, waaaay better! I am talking all this week....no tonic seizures! None of those stiff, ugly, holding his breath, tonics....he is still seizing but it is very minimal....he looks like he is about to have a seizure (tonic) then it looks like a "startle" and after the startle he starts crying,as if it scares him and then that's it! Looks better than the tonics, but who knows. I think today he may have had 1 or 2 of those, that's it! Crazy!
Again, the unpredictable....no rhyme...no reason.....but for once, I am looking forward to our 24 hour EEG in January(hate EEG's and hospital stays)....praying for good news...praying for no more hypsarythmia....praying for answers, for a med to take these suckers away (I know, wishful thinking) but today I am just happy to not see those tonics, I just wish I knew why!
Just when Hunter and Hailey have gotten to an age of reasoning, understanding, and learning the expectations and consequence for behavior, the "unpredictability factor" has gone way down. In fact, I was thinking how just a few short years ago, I hated going out to eat, at a restraunt, with my kids, because it just wasn't fun, relaxing or enjoyable...home was sooo much easier! Now, they are at an age, where taking them out is fun, going to Bennihana's was so fun, they were so well behaved, and truly enjoyed the experience...in fact all of us did! The other group at our table even commented on how well behaved and well mannered they were.
I realize this uncertainty is what I live with day to day, hour to hour, with Hudson. There is so much uncertainty when it comes to seizures, crying...the why's and what's, tummy issues...(thankfully still no vomiting, in spit of extreme coughing and gagging)......every time I go out, especially when I know we need a "good" baby, a quiet baby, I always wonder if it will be a nightmare or a dream.....Sunday, a dream....we really lucked out with how well he did, Tuesday....a nightmare!
The kids school Christmas performance.....it didn't help that I was a little stressed, getting them there 10 minutes late, and it was pouring rain, and I had them all dressed in their Christmas best....getting drenched as we ran in to the church. Paul brought Hudson in after parking the car, my mom and Fred and my brother (who surprised the kids and flew up yesterday just to see the performance) met us there. My mom wanted to hold Hudson, so as I attempted to get him out of the stroller, picking him up, holding him against me, the stench of poop filled the air, and his damp dress pants were up against me, he was loaded!
So me and this lovely mess ran in to the bathroom, to change him and as I strip his pants the poop goes smearing down his leg, on to his socks....as bad as it could possibly get...stress level rises once again as the lights had dimmed just as I was leaving to tackle this mess...the holiday show was beginning.
I had a blanket, thank goodness, because Hudson had no pants or socks! I just have to say cleaning him up was such a disaster, that it was even in his toes....it was the kind where you just put them in the tub and bathe them right then and there...if you were home that is. So, I took him back in to the church, half naked, and let him just sit in his stroller. I kept looking at my sleeves and top, convinced I must have poop smeared on me somewhere...I felt like a human diaper pail! Hudson was pretty good for about the first 40 minutes or so, but as soon as Hunter walked on stage, he got restless and started fussing, which quickly turned into crying...I couldn't believe it....I had my video camera all ready and my regular camera...up I went with Hudson. He quieted as I rocked him in my arms, and my arms were getting tired, so I thought I could go back and sit down, and as soon as I did....crying started again! Fred....who is like the dad I never had (my dad died when I was 3) ran to the back of the church, with Hudson's stroller, and told me to I shouldn't have to miss my kids on stage....Hudson at this point was screaming so loud we were in the vestibule, church doors closed and you could still here him! I took Fred up on it, and he stayed with Hudson so I could watch the rest of the performance. I got the looks...from some...to get out of the church as soon as he started squawking. I get some of those looks, from those who wondered why my son was half naked, and I got that puzzled look from some, as to why I couldn't calm or reason with what appears to be a toddler.
The Hudson packaging is so deceiving....you just can't tell what is going on with him by looking at him...he has no dysmorphic features or anything odd to his appearance to let strangers know there is something wrong with him....seizures in public usually do the trick, and I hate when that happens more than anything, more than the crying or pooping mess! So yesterday....a bad night for the poor little guy. Not sure why...maybe he was less than thrilled sitting bottomless, ans shoeless in public. I guess it would be a good thing if he was uncomfortable...at least he was trying to let us know!
Real quick....not sure why, but since right before Vegas, when I saw those clusters, and was freaking out, well since I have been home I have seen none! I am thinking it had something to do with the steroid for the croup, maybe? Never got any info from the neuro. His seizures have been, do I dare say, waaaay better! I am talking all this week....no tonic seizures! None of those stiff, ugly, holding his breath, tonics....he is still seizing but it is very minimal....he looks like he is about to have a seizure (tonic) then it looks like a "startle" and after the startle he starts crying,as if it scares him and then that's it! Looks better than the tonics, but who knows. I think today he may have had 1 or 2 of those, that's it! Crazy!
Again, the unpredictable....no rhyme...no reason.....but for once, I am looking forward to our 24 hour EEG in January(hate EEG's and hospital stays)....praying for good news...praying for no more hypsarythmia....praying for answers, for a med to take these suckers away (I know, wishful thinking) but today I am just happy to not see those tonics, I just wish I knew why!
Tuesday, December 15, 2009
Busy,Busy, Busy....
What a crazy time of year! Lots of fun, lots of traditions, but also lots of exhaustion!
We had a really great weekend as a family and also for some "me" time.
Friday night I was out until 12:30 a.m. at a neighbors for a holiday party and bunko....girls only! Lots of fun!
Saturday morning I met a good friend for coffee. It always amazes me how I can run off with a friend and how quickly the morning goes...we left at 9 a.m. and sat at Starbucks until 12! It felt like we had just sat down and started catching up on life and 3 hours flew past us in minutes...crazy how we girls can talk and talk!
I came home and took all three kids to our library for gingerbread house making...my kids ate their houses as they were walking out the door!
Saturday night we took the kids to a Live Nativity at one of our local churches...it is pretty spectacular. You drive thru or walk. It is only one weekend and at night. There are torches lighting up the pathway as you drive/walk through the town of David. They have live animals (donkeys and goats) and a whole cast of people dressed the part as you make your way thru Nazareth, where you see a big star up high and the stable in the distance...it is very cool. We let the kids out of their seats and made cookies/hot chocolate for the ride...they love it!
Sunday we did or traditional pics with Santa downtown at Nordstrom. For years we had always stood for hours outside, as you make your way to the cottage, and then Santa. Our first year with Hudson, as we stood in the cold, I thought about asking about special accommodations and I must say, Nordstroms is awesome. Since Hudson, we make reservations every year and they have a "special needs" Santa inside on the 5th floor. It is awesome...not to have him in the cold, among all the people...don't get me wrong...I 'd rather be among the norm, but the fact that this is our situation, and Nordstrom offers such a wonderful service to families like mine is a blessing. They are also great about letting you take your own pictures...they even took a family pic, and it actually turned out good, so I have turned into Christmas cards...I realized it has been since I was pregnant with Hudson, that we had a family pic, and never with Hudson, so it was a real blessing to get a unexpected, decent family picture! So pictures it was, then to Westlake Center for a carousel ride, which I took Hudson on too....he loved the lights! Then Bennihana for dinner which my kids LOVED! My kids have a very sophisticated palate....soup, shrimp, chicken, steak and fried rice...they cleaned their plated well!
The best part of the whole evening was being together as a family. It is always a crap-shoot....how Hudson will be...how his seizures will be....how the cold and the running around will affect him, but he was a trooper and he did wonderful. Toward the end, when it was desert time he started getting tired and I made the mistake of giving him ice cream and forgot how he hates things super cold...so he started crying....thank goodness it was the end of our evening. All in all ...a great weekend, and to be a complete family was the best!
Tonight....kids Christmas performances, class parties, last week of school. Saturday...our family with my mom and Fred to dinner and Christmas Cruise around Lake Washington, Sunday...my mom and I got to the Rockettes and dinner in Seattle....still have a ton to do in the next 10 days.....Christmas comes way too fast, don't ya think?!?
Just Curious.....If you have a ton of therapists for your kiddo, like I do, what do YOU get them Christmas????? Need ideas!
We had a really great weekend as a family and also for some "me" time.
Friday night I was out until 12:30 a.m. at a neighbors for a holiday party and bunko....girls only! Lots of fun!
Saturday morning I met a good friend for coffee. It always amazes me how I can run off with a friend and how quickly the morning goes...we left at 9 a.m. and sat at Starbucks until 12! It felt like we had just sat down and started catching up on life and 3 hours flew past us in minutes...crazy how we girls can talk and talk!
I came home and took all three kids to our library for gingerbread house making...my kids ate their houses as they were walking out the door!
Saturday night we took the kids to a Live Nativity at one of our local churches...it is pretty spectacular. You drive thru or walk. It is only one weekend and at night. There are torches lighting up the pathway as you drive/walk through the town of David. They have live animals (donkeys and goats) and a whole cast of people dressed the part as you make your way thru Nazareth, where you see a big star up high and the stable in the distance...it is very cool. We let the kids out of their seats and made cookies/hot chocolate for the ride...they love it!
Sunday we did or traditional pics with Santa downtown at Nordstrom. For years we had always stood for hours outside, as you make your way to the cottage, and then Santa. Our first year with Hudson, as we stood in the cold, I thought about asking about special accommodations and I must say, Nordstroms is awesome. Since Hudson, we make reservations every year and they have a "special needs" Santa inside on the 5th floor. It is awesome...not to have him in the cold, among all the people...don't get me wrong...I 'd rather be among the norm, but the fact that this is our situation, and Nordstrom offers such a wonderful service to families like mine is a blessing. They are also great about letting you take your own pictures...they even took a family pic, and it actually turned out good, so I have turned into Christmas cards...I realized it has been since I was pregnant with Hudson, that we had a family pic, and never with Hudson, so it was a real blessing to get a unexpected, decent family picture! So pictures it was, then to Westlake Center for a carousel ride, which I took Hudson on too....he loved the lights! Then Bennihana for dinner which my kids LOVED! My kids have a very sophisticated palate....soup, shrimp, chicken, steak and fried rice...they cleaned their plated well!
The best part of the whole evening was being together as a family. It is always a crap-shoot....how Hudson will be...how his seizures will be....how the cold and the running around will affect him, but he was a trooper and he did wonderful. Toward the end, when it was desert time he started getting tired and I made the mistake of giving him ice cream and forgot how he hates things super cold...so he started crying....thank goodness it was the end of our evening. All in all ...a great weekend, and to be a complete family was the best!
Tonight....kids Christmas performances, class parties, last week of school. Saturday...our family with my mom and Fred to dinner and Christmas Cruise around Lake Washington, Sunday...my mom and I got to the Rockettes and dinner in Seattle....still have a ton to do in the next 10 days.....Christmas comes way too fast, don't ya think?!?
Just Curious.....If you have a ton of therapists for your kiddo, like I do, what do YOU get them Christmas????? Need ideas!
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Hudson Tyler
Our sweet angel!