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In Need of Emotional and Mental Support Right Now
- Thread starter momof6kids
- Start date
momof6kids
NJRC Member
Andy called and told me that Maddie had a minor seizure last night on one side of her body. They gave her an injection which was able to stop the seizure. The doctors feel there is some kind of neurological damage, though they do say that infants brains reproduce brain cells so quickly that it should repair itself but we don't know what the extent of the recovery will be.
This morning her oxygen levels dropped again, so they have put her on a ventilator.
This morning her oxygen levels dropped again, so they have put her on a ventilator.
Oh Erna! I am so sorry to hear that ! You, Maddie and your family are so on my mind and in my thoughts and heart at this time. I hope and pray that a root cause and course of corrective action is determined soon. Do keep faith that small children, especially infants, are amazingly resilient.
momof6kids
NJRC Member
No Phyl, I started with a fever and chills last night, and Doug is not feeling well today. We need to recover super quickly because Linda will have to go to work for at least a few days next week, and I need to go down and watch Maddie. So, I am pumping myself with all kinds of vitamins and drugs.
It sounds like this is going to be a long haul. The doctors made the comment about 2 weeks minimum in PICU.
We got the results back from the EEG, and Maddie is showing reduced brain wave activity. This means that her brain was impacted during the metabolic shock this past weekend, and is the reason that she's not recovering quickly. Because she's an infant she stands a better chance of recovering from the damage than an adult would, although her metabolic condition makes her recovery more difficult too.
Our #1 request is for prayer that Maddie's brain will heal. At this point we just need to wait and see if that happens. It will take time. They'll repeat the EEG again next week to see if she makes any progress.
They have reduced her ventilator from giving her 100% oxygen to 60%, and her levels are remaining the same. The doctors say that is good. She is breathing 40% on her own.
They did give her a catherter this afternoon so they can moniter her output on urine. And make sure her kidneys are functioning well.
The neuroligist today made a comment that he feels she has been in a coma since Monday. Maddie did have her eyes open a number of times yesterday watching Andy play guitar and sing to her.
My brother and sister-in-law went down to see her today and to give me an update on Andy and Linda and how they are holding up. They told me that either Andy is a great actor or he is amazingly strong. Linda is having a really hard time, which I can totally understand.
We are getting concerned how this is affecting our other children. Our 18 year old made a comment today that our family is going to need therapy after this is over.
KEEP PRAYING!!
It sounds like this is going to be a long haul. The doctors made the comment about 2 weeks minimum in PICU.
We got the results back from the EEG, and Maddie is showing reduced brain wave activity. This means that her brain was impacted during the metabolic shock this past weekend, and is the reason that she's not recovering quickly. Because she's an infant she stands a better chance of recovering from the damage than an adult would, although her metabolic condition makes her recovery more difficult too.
Our #1 request is for prayer that Maddie's brain will heal. At this point we just need to wait and see if that happens. It will take time. They'll repeat the EEG again next week to see if she makes any progress.
They have reduced her ventilator from giving her 100% oxygen to 60%, and her levels are remaining the same. The doctors say that is good. She is breathing 40% on her own.
They did give her a catherter this afternoon so they can moniter her output on urine. And make sure her kidneys are functioning well.
The neuroligist today made a comment that he feels she has been in a coma since Monday. Maddie did have her eyes open a number of times yesterday watching Andy play guitar and sing to her.
My brother and sister-in-law went down to see her today and to give me an update on Andy and Linda and how they are holding up. They told me that either Andy is a great actor or he is amazingly strong. Linda is having a really hard time, which I can totally understand.
We are getting concerned how this is affecting our other children. Our 18 year old made a comment today that our family is going to need therapy after this is over.
KEEP PRAYING!!
Holy Carp. You better hurry and get better FAST! I trust you're already on antibiotics so that you can start your 2 days of being away?! Your whole family should be on them right now! Eeep! I hope that this rough patch passes really soon. It sounds like it is really hard on all.... your other children included.
momof6kids
NJRC Member
No we are not on antibiotics. The doctors explained to me that while the antibiotics would keep us from getting strep, it would not keep us from getting a secondary viral infection. Which is what I am thinking we have. I have no sore throat just a fever, a stuffy nose, and a cough. Aches and pains also. More flu like symtoms.
It has been very hard on the younger children. Susie who is 10 just keeps disappearing into her room. And then comes out, and sits on my lap asking how Maddie is now. Jeff is feeling better from his strep, doesn't really know how to respond to Maddie, so is looking for attention in all the wrong ways.
It has been very hard on the younger children. Susie who is 10 just keeps disappearing into her room. And then comes out, and sits on my lap asking how Maddie is now. Jeff is feeling better from his strep, doesn't really know how to respond to Maddie, so is looking for attention in all the wrong ways.
reefsandrotts
NJRC Member
Our prayers are with you and your family.
momof6kids
NJRC Member
I ended up going back to the doctor, I have a sinus infection. They did put me on antibiotics. So hopefully I will start recovering soon.
The neurologist feels that Maddie has been in a coma since Monday.
Maddie is starting to move a little more, she actually put her arm over her
head yesterday. Her heart rate has been high, but, they feel that this is
because she is agitated being on the ventilator. Most people who are on
ventilators are sedated. Maddie wasn't before, but they have started her on a low dose sedative to hopefully calm her down, and bring her heart rate down.
The doctors say her brain needs to rest and recover, which is why she is in
the coma. We have no idea how long this may take, but the Lord knows each
and every step of our path.
The neurologist feels that Maddie has been in a coma since Monday.
Maddie is starting to move a little more, she actually put her arm over her
head yesterday. Her heart rate has been high, but, they feel that this is
because she is agitated being on the ventilator. Most people who are on
ventilators are sedated. Maddie wasn't before, but they have started her on a low dose sedative to hopefully calm her down, and bring her heart rate down.
The doctors say her brain needs to rest and recover, which is why she is in
the coma. We have no idea how long this may take, but the Lord knows each
and every step of our path.
momof6kids
NJRC Member
She was running a low temp again last night, but Tylenol was able to bring it
down.
She is moving her arms a lot more. She almost pulled her feeding tube out.
Yesterday, when Andy was playing guitar and Linda was singing, Maddie would
open her eyes partially for 10 seconds, close them for a little, and then
open them again. She is also starting to make faces and grimace while in the coma.
More baby steps.
Maddie's hemoglobin was down this morning. Later, when they take it again, if it is still low, Maddie will need a small transfusion.
down.
She is moving her arms a lot more. She almost pulled her feeding tube out.
Yesterday, when Andy was playing guitar and Linda was singing, Maddie would
open her eyes partially for 10 seconds, close them for a little, and then
open them again. She is also starting to make faces and grimace while in the coma.
More baby steps.
Maddie's hemoglobin was down this morning. Later, when they take it again, if it is still low, Maddie will need a small transfusion.
Erna, I see we haven't had an update in a few days. I was hoping to hear how Lil' Maddie was doing. My heart breaks for you all and what you're going through. How are you feeling? Hopefully the antibiotics have kicked in and you're all healthy enough to support them the way you want to.
momof6kids
NJRC Member
Thank you all for thinking and praying for our family. Maddie is still in the hospital. Not because of her metabolic disorder, at least according to her doctor. First, Maddie came down with RSV, which is a very serious respiratory viral "cold". So she ended up back on the ventilator. Then, she came down with MRSA, which is a very severe staff infection. It is extremely resistant to antibiotics. So, Maddie is on 3 different antibiotics to try to knock this out of her system.
The doctors just were in this morning to see Maddie and her xrays today are about the same as yesterday. The plan right now is for Thursday night to give her some medication that will reduce the swelling around the ventilator tube. And then on Friday morning to remove the ventilator.
They want to give the antibiotics some time to work and also to build her up with food, since they won't be able to feed
her for 6 hours after the tube is removed.
I have made contact through the support group with three families that have children who have the same metabolic disorder as Maddie. I spent an hour and a half on the phone with a woman in Virginia who has an 11 year old. There is a 6 year old in Kentucky and a 1 1/2 year old in Philadelphia. They have been extremely helpful and encouraging to us.
I am spending a lot of time at the hospital now. Linda had to go back to work this week, she unfortunately hadn't been at her job for a year, so family leave is not an option. So, Doug is working from home one of the days that I am down here and the other older kids are taking off time to be at home with Jeff and Susie.
We are hoping that by next week they will start talking about coming home.
Thank you all again. We truly value all the prayers that have gone up in Maddie's behalf. If any of you are on facebook, my brother and I have started a cause page for Maddie. We have 898 members so far. There are some pictures and updates daily.
Here is the link. http://apps.facebook.com/causes/231937
I will try to be better about updating here too. :
Just a wee bit tired, and wouldn't you know that we lost another hour of sleep last weekend, as if we weren't tired enough.
Erna
The doctors just were in this morning to see Maddie and her xrays today are about the same as yesterday. The plan right now is for Thursday night to give her some medication that will reduce the swelling around the ventilator tube. And then on Friday morning to remove the ventilator.
They want to give the antibiotics some time to work and also to build her up with food, since they won't be able to feed
her for 6 hours after the tube is removed.
I have made contact through the support group with three families that have children who have the same metabolic disorder as Maddie. I spent an hour and a half on the phone with a woman in Virginia who has an 11 year old. There is a 6 year old in Kentucky and a 1 1/2 year old in Philadelphia. They have been extremely helpful and encouraging to us.
I am spending a lot of time at the hospital now. Linda had to go back to work this week, she unfortunately hadn't been at her job for a year, so family leave is not an option. So, Doug is working from home one of the days that I am down here and the other older kids are taking off time to be at home with Jeff and Susie.
We are hoping that by next week they will start talking about coming home.
Thank you all again. We truly value all the prayers that have gone up in Maddie's behalf. If any of you are on facebook, my brother and I have started a cause page for Maddie. We have 898 members so far. There are some pictures and updates daily.
Here is the link. http://apps.facebook.com/causes/231937
I will try to be better about updating here too. :
Just a wee bit tired, and wouldn't you know that we lost another hour of sleep last weekend, as if we weren't tired enough. Erna