So today Jonah and I went to see the doctor. I was a little nervous of what she'd say knowing all about Fridays trip to the ER. I was afraid she would listen to him and decide it would be best for him to be admitted. Luckily she didn't say that. She had agreed that he sounded bad, but reassured me she has heard him sound much worse. She was a little taken back on how much oxygen he was using, so like a good doc would do, she studied how he was inhaling and exhaling and came up with this... More steroids. Ha ha, I can only laugh because I have developed this bizarre sick sense of humor you can only get by being stressed to the max and sleep deprived and by being Jonah's mommy. So yes, he is now using Prednisone (Oral steroid) and an inhaled nasal steroid that will coat the inner part of his nose in hopes the O2 will flow better. She felt very strongly that his O2 was being blocked by all the snot and that's why his need for oxygen was so increased. I agreed.
I
Nov 30, 2009
Nov 28, 2009
No ambulance... I'll drive!
I am so tired of Jonah being in respiratory limbo. He had started a little cough on Tuesday, I really paid no attention hoping that it would pass. On Thanksgiving he was sounding a little worse but it was Thanksgiving and I really didn't want to bother his pulmonary doctor, so I began treatments timing 3-4 hours apart. We made it through our Thanksgiving feast (that I cooked, I might add) and when we got home Jonah was just a hot mess! He was sating low, playing magical tricks with his lips...one minute they're pink the next they're blue...AHHH! I just worry so much about him. Yes I should have brought him to the Er last night but I didn't in hopes that with time he would do a U-turn. Today has been hard. So hard in fact I cried real tears when I heard him waking up from his trazadone induced nap.
He is sick. I took him to the insta care in hopes they would throw some magical fairy dust on him and send us home. No. Didn't happen quite like that. I brought him in. We sat in the completely empty waiting room and waited and waited (no one else was even in the building...just us and the staff) I think the doc was out for lunch...he must have been because we ended up with a PA... normally I wouldn't care but I knew this poor PA was way over his head once he saw Jonah's sat levels... He was kind enough to give me the option to drive J myself or he could call me an ambulance. NO AMBULANCE! I drove him. On my way up to PCMC (children's Hosp) i called his pulmonary doc to let her know I was going up to the hospital, and to get her on my side because I knew the Dr's there would want to admit him.
Okay so long story short we were there in the ER for close to 5 hours. Jonah was using 4X the amount of O2 he is usually on. He was not impressing anyone with his mighty ability to be breathing so hard we could count his ribs. We did the usual: Chest X-ray, deep suctioning, respiratory panel and then his nice 45 min nebulizing cocktail.
The Attending Doc came in told me he thinks J should stay for observation, but that I was free to go if I chose to because He talked with the pumonoloist and she feels that J would be fine, knowing of all the equipment I have here at home. (seriously I have a mini respiratory/feeding clinic going on here) So I left with 2 prescriptions in hand...You guessed it the kid is back on steroids. What do you do. You roll with the punches and have a whole lotta trust and lot more brain power to question what may need to be questioned.
may tomorrow be better, good night.
He is sick. I took him to the insta care in hopes they would throw some magical fairy dust on him and send us home. No. Didn't happen quite like that. I brought him in. We sat in the completely empty waiting room and waited and waited (no one else was even in the building...just us and the staff) I think the doc was out for lunch...he must have been because we ended up with a PA... normally I wouldn't care but I knew this poor PA was way over his head once he saw Jonah's sat levels... He was kind enough to give me the option to drive J myself or he could call me an ambulance. NO AMBULANCE! I drove him. On my way up to PCMC (children's Hosp) i called his pulmonary doc to let her know I was going up to the hospital, and to get her on my side because I knew the Dr's there would want to admit him.
Okay so long story short we were there in the ER for close to 5 hours. Jonah was using 4X the amount of O2 he is usually on. He was not impressing anyone with his mighty ability to be breathing so hard we could count his ribs. We did the usual: Chest X-ray, deep suctioning, respiratory panel and then his nice 45 min nebulizing cocktail.
The Attending Doc came in told me he thinks J should stay for observation, but that I was free to go if I chose to because He talked with the pumonoloist and she feels that J would be fine, knowing of all the equipment I have here at home. (seriously I have a mini respiratory/feeding clinic going on here) So I left with 2 prescriptions in hand...You guessed it the kid is back on steroids. What do you do. You roll with the punches and have a whole lotta trust and lot more brain power to question what may need to be questioned.
may tomorrow be better, good night.
Nov 25, 2009
So Much to be Thankful For
When Jonah was first sick I remember feeling like something was taken from me. I was upset at the world, at myself, at my husband, at my work, at the doctors, just anyone who ever was in my life. I was hurt and I was sad.
I didn't know nor could I ever imagine the blessings that were in store for my future. Today I can say that I am greatful, truley greatful for these things:
My family, we may not have it all together, but together we have it all!
My knowledge and faith that my Family will be together forever
My beautiful husband
My free spirit Morgan and my sweet boy Jonah
Being able to stay at home with my kiddos, a place where I know that I belong
Feeding tubes, life suport, blood donors, pulsox machines, portable oxygen, walkers, suction machines, nebulizers and 6 different medications that keep my boy going! Because it's Thanksgiving I will also be thankful to PREDNISONE...however not thankful for the moon face, and stunting of growth.
The wonderful friends that I have...new & old I will always cherish you
All of the warm prayers that are sent to my family, they do reach us...ten fold
BLOGGING! How I ever function before, will continue to be one of my mysteries...
My health, I have been sick once since Jonah came along...that is truely a mighty miracle
Sun Flower Market...another one of my mysteries... I heart you!
All of those special kids who yank at my heart strings, who help me be the best mommy I can be, who show and teach me daily how to be strong...Thank you to all the bloggers who share their child's story and who open their hearts to Jonah
I am so greatful for Jonahs team of medical peeps who continue to take care of him even though he's a tough case, and his moms a nut case
I am Thankful for each day I have to spend with the 3 most important people in my life. I am thankful for the smiles, the songs, the stories, the faces, the love.
I have so much to be greatful for. Each day my gratitude grows as my eyes are opened to how much I have.
Happy Thanksgiving!
I didn't know nor could I ever imagine the blessings that were in store for my future. Today I can say that I am greatful, truley greatful for these things:
My family, we may not have it all together, but together we have it all!
My knowledge and faith that my Family will be together forever
My beautiful husband
My free spirit Morgan and my sweet boy Jonah
Being able to stay at home with my kiddos, a place where I know that I belong
Feeding tubes, life suport, blood donors, pulsox machines, portable oxygen, walkers, suction machines, nebulizers and 6 different medications that keep my boy going! Because it's Thanksgiving I will also be thankful to PREDNISONE...however not thankful for the moon face, and stunting of growth.
The wonderful friends that I have...new & old I will always cherish you
All of the warm prayers that are sent to my family, they do reach us...ten fold
BLOGGING! How I ever function before, will continue to be one of my mysteries...
My health, I have been sick once since Jonah came along...that is truely a mighty miracle
Sun Flower Market...another one of my mysteries... I heart you!
All of those special kids who yank at my heart strings, who help me be the best mommy I can be, who show and teach me daily how to be strong...Thank you to all the bloggers who share their child's story and who open their hearts to Jonah
I am so greatful for Jonahs team of medical peeps who continue to take care of him even though he's a tough case, and his moms a nut case
I am Thankful for each day I have to spend with the 3 most important people in my life. I am thankful for the smiles, the songs, the stories, the faces, the love.
I have so much to be greatful for. Each day my gratitude grows as my eyes are opened to how much I have.
Happy Thanksgiving!
Nov 24, 2009
Jonah & his new walker
Jonah and I headed up to the children's with special needs building this morning. We met with an angel. I'm not even kidding. Terri was fabulous! We spent a good 3 hours up there and learned so much. I had the chance to talk with a psychologist about Jonah's behavior. While we were there J was fitted for a helmet and got his new little feeding chair sized to suit him. I will write up a letter this week to have the Dr & OT sign and hopefully Jonah will be approved for his protective helmet. There was one there that we tried on J's head but it was an inch to small. I saw what it does and how it should fit...funny thing is Jonah didn't even mind wearing it. it was so snug I think it felt good smugging up his cute little head. This might be a blessing in disguise! The Angel Terry and I chatted for quite some time and I had a chance to really have a lot of my questions answered. She asked me about Jonahs walking (a sore topic for me to discuss) well, she mentioned a walker. Right away I slammed the idea. I told her there was no way he could do anything like that. Lets try it she said. we tried it and tears filled my eyes.
Jonah was walking!
To see my sweet little boy holding on to this medal chair and moving his feet and body to get to me, aw, it was just amazing! He has been using his walker all day long. He loves it. This is what he needed. I am so thankful for this foundation. I am so thankful for the friend who told me about it.
Jonah was walking!
To see my sweet little boy holding on to this medal chair and moving his feet and body to get to me, aw, it was just amazing! He has been using his walker all day long. He loves it. This is what he needed. I am so thankful for this foundation. I am so thankful for the friend who told me about it.
Nov 23, 2009
new post
Today strated early, or yesterday never ended...I'm not sure. I just know my feet are killing me, my bed is calling me, it's 11:15 at night and I am still waiting for laundry to finish. And then...finally...GO TO SLEEP. I hope Jonah didn't here me type that! Heaven knows as soon as I fall into my nice warm bed Jonah decides it's probably time to let out a heart wrenching squeal! And from there...Well, I'm to tired to even think about how tonight will go.
We have had a more then difficult weekend. Not all bad, On Friday we were invited to go to a birthday for the sweetest little guy,Jaxson . It was fun, and I am assuming the kids had fun as well, however Jonah did not miss the opportunity to show off his head banging and the squeal. None the less it was a fun night, and I was slightly liberated by taking him out of the house. I felt so unbelievably normal there at the party. There were a few kiddos on oxygen as well. No one stared or made comments. It was just amazing being in the presence of so many other kiddos who have fought just as hard as Jonah to stay alive.
Saturday was hard.
Sunday Jonah was hooked up to his polsox most of the day. His Sat's were in the low 80's not on oxygen and when he was put back on O's he was sating at 93 on a liter and a half. That's a lot of oxygen for Jonah and not be sating in the higher 90's was kind of bothersome. Today he has been full of mucus. I wish he would just know that the tickle in his throat means to cough. Ah, what to do....
This morning Jonah had his Six month eval/renewal with Early Intervention. His OT went over his results from the testing from last week. Results:
Gross Motor- 11 mo, Fine Motor-18 mo, Cognitive Development- 15 mo
Language-10 mo Self Help- 12mo, and Social Emotional-24 mo.
I'm not sure why this is so hard for me to look at. I thought I was officially out of denial. I would think that by being with him every second of the day I would know just the same as some test, but still it's hard to look at on paper, and for others to look at and know that Jonah is not normal. It hurts. I can't let it get in the way of our day to day life. I do understand that these tests need to be done.
Tomorrow Jonah and I will be going to a place here in Utah who carries equipment for children with those special needs. Jonah will be fitted for a helmet and we will be taking home a feeding chair. I am looking forward to the chair! I will post pics as soon as he is measured for it and it is all set up.
Jonah has been banging his head so much! It started about a year ago. Jonah would bang his head for what they call "input." ( he has difficulties getting enough stimulation) He has some sensory issues that we work on daily. About 4 months ago the head banging got more and more aggressive. Where he is leaving bruises on his head. He does it harder when he is throwing a fit, mostly because he can not communicate that of what he wants. It is super stressful...for both of us! I bought him a skate board helmet in hopes that it would solve the problem...NOPE! He found a way to make it slip off. So this new helmet should be exactly what he needs. I guess we will just have to see.
We have had a more then difficult weekend. Not all bad, On Friday we were invited to go to a birthday for the sweetest little guy,Jaxson . It was fun, and I am assuming the kids had fun as well, however Jonah did not miss the opportunity to show off his head banging and the squeal. None the less it was a fun night, and I was slightly liberated by taking him out of the house. I felt so unbelievably normal there at the party. There were a few kiddos on oxygen as well. No one stared or made comments. It was just amazing being in the presence of so many other kiddos who have fought just as hard as Jonah to stay alive.
Saturday was hard.
Sunday Jonah was hooked up to his polsox most of the day. His Sat's were in the low 80's not on oxygen and when he was put back on O's he was sating at 93 on a liter and a half. That's a lot of oxygen for Jonah and not be sating in the higher 90's was kind of bothersome. Today he has been full of mucus. I wish he would just know that the tickle in his throat means to cough. Ah, what to do....
This morning Jonah had his Six month eval/renewal with Early Intervention. His OT went over his results from the testing from last week. Results:
Gross Motor- 11 mo, Fine Motor-18 mo, Cognitive Development- 15 mo
Language-10 mo Self Help- 12mo, and Social Emotional-24 mo.
I'm not sure why this is so hard for me to look at. I thought I was officially out of denial. I would think that by being with him every second of the day I would know just the same as some test, but still it's hard to look at on paper, and for others to look at and know that Jonah is not normal. It hurts. I can't let it get in the way of our day to day life. I do understand that these tests need to be done.
Tomorrow Jonah and I will be going to a place here in Utah who carries equipment for children with those special needs. Jonah will be fitted for a helmet and we will be taking home a feeding chair. I am looking forward to the chair! I will post pics as soon as he is measured for it and it is all set up.
Jonah has been banging his head so much! It started about a year ago. Jonah would bang his head for what they call "input." ( he has difficulties getting enough stimulation) He has some sensory issues that we work on daily. About 4 months ago the head banging got more and more aggressive. Where he is leaving bruises on his head. He does it harder when he is throwing a fit, mostly because he can not communicate that of what he wants. It is super stressful...for both of us! I bought him a skate board helmet in hopes that it would solve the problem...NOPE! He found a way to make it slip off. So this new helmet should be exactly what he needs. I guess we will just have to see.
Nov 17, 2009
Can I get a whoot whoot?
Drum roll please...
Jonah just got his first shot of Synagis!! We had his happy birthday well child check and it went great! For the First time since all this medical stuff started Jonah is on the chart!! His head circumference just makes it, but I am so happy his head is finally growing!(perhaps it is just swollen from all the head banging) He is now 30 in in height and weighs 23 lbs He has gained 2 lbs in the past 6 months. though he has not hit the charts on the last 2 he IS growing!
Jonah's OT came over today for developmental testing...though we will not get those results till next week I was so surprised how much Jonah can do now, compared to six moths ago when we did the same tests. She suspects that he is now more on the 12-18 month old side of things but he is still at a 10-12 month level for Gross motor.
Morgan is doing so well at preschool. she is starting to "write" her name. She can make a really good 'M', 'o' & 'a' I am very proud of her. We do 5 worksheets a day that focus on drawing lines, shapes, opposites, & same and different. She struggles with letter recognition but I am trying new things everyday to help her with that.
Ugh, got to go , Jonah has gotten into the dog food...Again!
Jonah just got his first shot of Synagis!! We had his happy birthday well child check and it went great! For the First time since all this medical stuff started Jonah is on the chart!! His head circumference just makes it, but I am so happy his head is finally growing!(perhaps it is just swollen from all the head banging) He is now 30 in in height and weighs 23 lbs He has gained 2 lbs in the past 6 months. though he has not hit the charts on the last 2 he IS growing!
Jonah's OT came over today for developmental testing...though we will not get those results till next week I was so surprised how much Jonah can do now, compared to six moths ago when we did the same tests. She suspects that he is now more on the 12-18 month old side of things but he is still at a 10-12 month level for Gross motor.
Morgan is doing so well at preschool. she is starting to "write" her name. She can make a really good 'M', 'o' & 'a' I am very proud of her. We do 5 worksheets a day that focus on drawing lines, shapes, opposites, & same and different. She struggles with letter recognition but I am trying new things everyday to help her with that.
Ugh, got to go , Jonah has gotten into the dog food...Again!
Nov 16, 2009
Prayers are really answered!
I could cry right now. I have been on this blog stalking, googling craze and face book frenzies for so long just looking for another child who may be dealing with similar issues as Jonah. I was starting to just deal with the fact that he may be all alone in this disease. It has been very heart tearing.
Last night as I went through my one hour of all things listed above, I decided to check on a forum that I have not been on in a long while. I went through a few messages and topics then I found one that read:
Hi there! I am joining this group because my 5 year old son has been diagnosed with bronchiectasis, a complication as a result of a nasty adenovirus pneumonia when he was a year old. Anyway, it's good to meet others!
And the heavens opened, AHHHHHHHHHHH!
I am so happy to know that there is another child who has this and is living. I have sent some correspondence to this mama and am very excited about learning more about her child. It was so crazy how much her son and Jonah have in common. When I was reading her boys story I got chills at some of the similarities between the two!
Last night as I went through my one hour of all things listed above, I decided to check on a forum that I have not been on in a long while. I went through a few messages and topics then I found one that read:
Hi there! I am joining this group because my 5 year old son has been diagnosed with bronchiectasis, a complication as a result of a nasty adenovirus pneumonia when he was a year old. Anyway, it's good to meet others!
And the heavens opened, AHHHHHHHHHHH!
I am so happy to know that there is another child who has this and is living. I have sent some correspondence to this mama and am very excited about learning more about her child. It was so crazy how much her son and Jonah have in common. When I was reading her boys story I got chills at some of the similarities between the two!
Nov 9, 2009
Life is like a box of chocolates
Last night I made a big deal about how I am a changed women! And by that I meant that I was now going to be going to bed no later then 9:45pm and 10 at the very latest. Well here I am at 11:16pm typing away at my blog waiting for a test to load up for my music class.
Life is like a box of chocolates. In an instant so much can change. Some times for the better, and sometimes for the not so good. But every day choices land before us and it is up to us at that time to make the choice that will be best for our path in life. So here I am at 11:17pm typing because I have so much running through my brain. Mainly the fact that I am a very blessed individual.
I know I have mentioned before how humbled I have become with the circumstances that have been tossed in our direction, on that note I have also been so so incredibly blessed. And those blessings have not stoped. I know that some are in tune with what are needs might be and have stepped in with no questions asked. Thank you to you. Thank you Gma & Gpa, Doug & kathy Jo, Grammy, Mom & Richard, anonymous friends, Becky, Melissa, Bethany, Susie, Cate, Meghan & Alie and so many many more (I forgot to write my acceptance speech) It brings tears to my eyes that you care so much. I don't think I have ever felt so loved in my entire life. I finally understand that I am not alone in all of this, That we (my Family) are not alone. I know we all had hopes that Jonah would be better by now, It looks like we are in it for the long hall. That's okay. For those of you who have never met Jonah I'm sure you can tell by the spark in his eye that he is a life changing kiddo. He is so special to me. I hope that through the years I will continue to share this story with him. The story about how so many people cared so much about our family. I love my little boy so much. I am one lucky mama!
Life is like a box of chocolates. In an instant so much can change. Some times for the better, and sometimes for the not so good. But every day choices land before us and it is up to us at that time to make the choice that will be best for our path in life. So here I am at 11:17pm typing because I have so much running through my brain. Mainly the fact that I am a very blessed individual.
I know I have mentioned before how humbled I have become with the circumstances that have been tossed in our direction, on that note I have also been so so incredibly blessed. And those blessings have not stoped. I know that some are in tune with what are needs might be and have stepped in with no questions asked. Thank you to you. Thank you Gma & Gpa, Doug & kathy Jo, Grammy, Mom & Richard, anonymous friends, Becky, Melissa, Bethany, Susie, Cate, Meghan & Alie and so many many more (I forgot to write my acceptance speech) It brings tears to my eyes that you care so much. I don't think I have ever felt so loved in my entire life. I finally understand that I am not alone in all of this, That we (my Family) are not alone. I know we all had hopes that Jonah would be better by now, It looks like we are in it for the long hall. That's okay. For those of you who have never met Jonah I'm sure you can tell by the spark in his eye that he is a life changing kiddo. He is so special to me. I hope that through the years I will continue to share this story with him. The story about how so many people cared so much about our family. I love my little boy so much. I am one lucky mama!
Nov 7, 2009
Happy Birthday Jman!
My baby is two today. I am filled with lots of emotion. I am so grateful to be celebrating Jonah's second birthday with him. He has come so far. He is truly an example to me. He reminds me daily not to judge others, to be all that I can be, and to smile, even at the little, very little things in life, and to remember life is good.
I wish that we could have a big celebration for Jonah. Unfortunatly, Jonah's birthday lands during rspiratory season so we will just celebrate his birthday with the family. That's okay. Life really is good.
Nov 3, 2009
flame of hope
About six months ago I met a young lady in her early twenties who like Jonah, suffers from Bronchiectasis, and has just been denied for a lung transplant. At this point it would be to risky for her. She has been my go to gal for many questions that I have about the disease. It breaks my heart to know that she is not doing well. She is amazing. She is brave.
I read this poem and thought of her and then I thought well, this pertains to many of us.
The Four Candles, Author Unknown
The Four Candles burned slowly.
Their Ambiance was so soft you
could hear them speak...
The first candle said, "I Am Peace, but these days, nobody
wants to keep me lit." Then Peace's flame slowly
diminishes and goes out completely.
The second candle says, "I Am Faith, but these days, I am
no longer indispensable." Then Faith's flame slowly
diminishes and goes out completely.
Sadly the third candle spoke, "I Am Love and I haven't the
strength to stay lit any longer."
"People put me aside and don't understand my
importance. They even forget to love those who are
nearest to them." And waiting no longer, Love goes out
completely.
Suddenly...A child enters the room and sees the three
candles no longer burning. The child begins to cry, "Why
are you not burning? You are supposed to stay lit until the
end."
Then the Fourth Candle spoke gently to the little boy,
"Don't be afraid, for I Am Hope, and while I still burn, we
can re-light the other candles."
With Shining eyes the child took the Candle of Hope and
lit the other three candles.
Never let the Flame of Hope go out of your life.
With Hope, no matter how bad things look and
are...Peace, Faith and Love can Shine Brightly in our lives.
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