Pray for my son

Update

Sorry guys. I have been so busy the past few months that I really haven't posted on here. My son is STILL in the hospital but has improved alot. He is 5 months old now. He is still at Johns Hopkins in Baltimore but he will soon be transferred to a rehab facility where they will train us on how to care for him. He got a tracheotomy and a feeding tube (G Tube) so we will bring him home with a ventilator.

He got so sick in the beginning of March that they put him on a machine called ECMO. It's basically a life-support machine. He was on that for 4 weeks and we thought we were going to lose him. I was out of my mind basically the whole month of March. I hadn't held him in 2 months and I got to finally hold him on Easter Sunday. It was great.

He looks better and better each time I see him. I setup a carepage for him which is sponsored by JHH. If you all would like to see pictures or read updates, I post them on his carepage. Here is the link to it:
Visit a CarePage: lukedowell

Thanks for all your prayers and support. I appreciate it a lot.
 
Tracie, thank you for the update, and I'm sorry to hear that Luke is still in hospital. :(

But very happy to hear that he is doing better! That is truly wonderful news! :)

I clicked the link to visit Luke's page, however it looks like you need to sign in. Do we need to create our own accounts with them first?

Thanks for your clarification. I would love to see little Luke's update page and I/We will certainly keep him in our prayers.

Hope he consistently feels better by each minute.

Sincerely,

TJ
 
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traciedowell said:
Sorry guys. I have been so busy the past few months that I really haven't posted on here. My son is STILL in the hospital but has improved alot. He is 5 months old now. He is still at Johns Hopkins in Baltimore but he will soon be transferred to a rehab facility where they will train us on how to care for him. He got a tracheotomy and a feeding tube (G Tube) so we will bring him home with a ventilator.

He got so sick in the beginning of March that they put him on a machine called ECMO. It's basically a life-support machine. He was on that for 4 weeks and we thought we were going to lose him. I was out of my mind basically the whole month of March. I hadn't held him in 2 months and I got to finally hold him on Easter Sunday. It was great.

He looks better and better each time I see him. I setup a carepage for him which is sponsored by JHH. If you all would like to see pictures or read updates, I post them on his carepage. Here is the link to it:
Visit a CarePage: lukedowell

Thanks for all your prayers and support. I appreciate it a lot.
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Yea, I remember reading the news about him being on LifeSupport. I was so scared for you, Tracie. I am just so happy he is doing a lot better. Bless your heart. :)
 
Thanks Shel. :fingersx:

We continue to pray for his improvement. I don't know when he will be ready to come home but I need to prepare for the challenges that await me. There's a lot to learn. I have no experience as a nurse so I will need to get educated as to how to care for his trach and G Tube (feeding tube). I will need to learn how to work the ventilator as well. He will require 24 hour care so we will have a nurse come to be with him at night when we sleep.

I just want him home...:fingersx:
 
traciedowell said:
Thanks Shel. :fingersx:

We continue to pray for his improvement. I don't know when he will be ready to come home but I need to prepare for the challenges that await me. There's a lot to learn. I have no experience as a nurse so I will need to get educated as to how to care for his trach and G Tube (feeding tube). I will need to learn how to work the ventilator as well. He will require 24 hour care so we will have a nurse come to be with him at night when we sleep.

I just want him home...:fingersx:
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Will he have to use the trach and G Tube for the rest of his life?
 
shel90 said:
Will he have to use the trach and G Tube for the rest of his life?
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We don't know. It's just one of those things that you have to wait to see what happens. In the meantime I will try and teach him sign language so he can communicate with us. He cannot make sounds with the trach so he won't be able to speak. Also we have reason to believe that he has some hearing loss but we don't know the specifics of that.
 
traciedowell said:
We don't know. It's just one of those things that you have to wait to see what happens. In the meantime I will try and teach him sign language so he can communicate with us. He cannot make sounds with the trach so he won't be able to speak. Also we have reason to believe that he has some hearing loss but we don't know the specifics of that.
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That has to be tough. Thanks for letting me know.

Thank god for ASL, huh?

Ok, see u tmw night on ooVoo. :)
 
Yes thank God for ASL. It bridges the gap of communication for many people and it will help us tremendously. It would suck if I didn't already know it but I'm sure I would learn if it meant I could communicate with my son. I'm just so thankful that I already know it so I can begin teaching him asap. I don't know the extent of his brain damage but I'm hoping he will be able to learn it like other babies can.

Yes, i will see you tomorrow night on oovoo shel. ;)
 
Tracie, I'm glad to hear that you will have communication with your son. I hope he can come home soon and you can hold him until both your hearts' content. :)

Ok, I hate to jump off topic, but I'm jealous you two have oovoo!
 
He is getting ready to be transferred to another facility for rehab but mainly for training so we can learn how to care for him.

He is doing so much better. He still has chronic lung disease and white matter damage to his brain but we don't know what will result with those issues. The doctors say there's a chance he could grow out of the need for the ventilator. That would be a miracle.

Thanks for asking. ;)
 
Prayers and thoughts still flowing over here, Tracie.

I do hope Luke is feeling better each and every day.

I don't know if you saw my other post but followed the link to visit Luke, but couldn't access the page.

You sound amazingly strong, and Luke is lucky to have that on his side.

Our prayers continue for Luke and your family.
 
traciedowell said:
To those parents out there, please pray for my baby boy. He was born on October 31 and I was 33 weeks pregnant. He is still in NICU on a ventilator. The doctors are unsure why he can't stay off the ventilator. It is very stressful on my family.
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Wow, I am so sorry you are having to deal with this. Last December my granddaughter, AVA, was born. We knew from the sonograms that she had a nodule in her brain. It was a very blessed birth but very stressful. We didn't even know if she would live.

They say she is deaf and blind, although we don't have a clue what the future will bring.

She spent the first 2 months in the hospital in Portland, OR. Then they let her go home. But every couple of days she had to go back to the hospital with hypothermia, and urinary problems etc. It seemed that all of our time was spend in the hospital. Her mom, Jessica, had to quit her job to just be there for the baby. It is was very stressful, and I know that you must feel the same. It is so hard to rest yourself when you are always worried, and hospitals are no place to sleep.

Thank God, she has been home now for about a month. The trips to the hospital are lessening. Lots of people were praying, and continue to pray.

So have faith, and we will all be sending our prayers for speedy recovery and for extra strength for you.
 
traciedowell said:
He is getting ready to be transferred to another facility for rehab but mainly for training so we can learn how to care for him.

He is doing so much better. He still has chronic lung disease and white matter damage to his brain but we don't know what will result with those issues. The doctors say there's a chance he could grow out of the need for the ventilator. That would be a miracle.

Thanks for asking. ;)
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God is in the Miracle business. He has made it this far, and that is a miracle, so I am believing for a great outcome all the way around. I am proud of you that you are going to teach him ASL soon. I am also proud that you sound like such a good mom. I hope you have a supportive family and someone you can lean on. So often, Moms are the ones that sacrifice their own rest and health for their children, which is totally worth it, but sometimes people don't realize how much a mom gets worn out... I am gonna be praying for a special strength for you and lots of outside support. :)
 
traciedowell said:
He is getting ready to be transferred to another facility for rehab but mainly for training so we can learn how to care for him.

He is doing so much better. He still has chronic lung disease and white matter damage to his brain but we don't know what will result with those issues. The doctors say there's a chance he could grow out of the need for the ventilator. That would be a miracle.

Thanks for asking. ;)
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I did not see this till today. I will keep saying a prayer for your son to become stronger little bit everyday. Dont give up your hope. (((((((hugs)))))))) Thank you for sharing him with us here on AD.
 
dreamchaser said:
Wow, I am so sorry you are having to deal with this. Last December my granddaughter, AVA, was born. We knew from the sonograms that she had a nodule in her brain. It was a very blessed birth but very stressful. We didn't even know if she would live.

They say she is deaf and blind, although we don't have a clue what the future will bring.

She spent the first 2 months in the hospital in Portland, OR. Then they let her go home. But every couple of days she had to go back to the hospital with hypothermia, and urinary problems etc. It seemed that all of our time was spend in the hospital. Her mom, Jessica, had to quit her job to just be there for the baby. It is was very stressful, and I know that you must feel the same. It is so hard to rest yourself when you are always worried, and hospitals are no place to sleep.

Thank God, she has been home now for about a month. The trips to the hospital are lessening. Lots of people were praying, and continue to pray.

So have faith, and we will all be sending our prayers for speedy recovery and for extra strength for you.
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Wow, you too. I will add your grandchild to my list prayer.
 
He was transferred to the rehab pediatric hospital and he has been GREAT!!

Thanks to everyone for their thoughts and prayers. They are working.

I am going to do my very first trach change tomorrow. He will wear the trach for a long time so it's important for me to be comfortable changing it every week.

He is so big! I attached a picture from a few days ago. Enjoy! He is 13 lbs now.

At birth he was 4 lbs.
 

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traciedowell said:
He was transferred to the rehab pediatric hospital and he has been GREAT!!

Thanks to everyone for their thoughts and prayers. They are working.

I am going to do my very first trach change tomorrow. He will wear the trach for a long time so it's important for me to be comfortable changing it every week.

He is so big! I attached a picture from a few days ago. Enjoy! He is 13 lbs now.

At birth he was 4 lbs.
Click to expand...

He is beautiful. Glad to hear he is improving steadily.
 
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