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In Need of Emotional and Mental Support Right Now

D

daveh285

Hi Erna,

Maddie is a littel doll, She is in my prayers,I have also put her in the prayer chain for tomorrow. The Doctor in New Brunswick,are they affilated with Robert Wood Johnson? I found they have No bed side manors what so ever. Over three years ago,Their top nuro surgeon told me to "Go home get my affairs in order and wait to die" "I have six months to a year" I haven't been back since. Never give up, Put it in Gods hands,"Remember God dosen't give us what we can handle,God helps us to handle what we were givin". The distance to travel is never far for someone you love. My prayers are with you, Dave
 
P

poconofishy

momof6kids said:
Thank you for your support. Andy called with an update. They are surmising right now (waiting for the final test results), that she has a UTI and this caused her to not eat well yesterday, (or to need more to eat than she did). So, this morning her body didn't have enough energy and started feeding off her muscle tissue. We normally would eat off of the fat we have stored. ;)Maddie's condition doesn't allow her to store fat. When it feeds off of the muscle it turns it into toxins which put her into the crisis mode. She is on IV's and has to eat more often than before (every 4 1/2 hours). This is supposed to flush the toxins out of her system.

Michelle, Thank you for your words of wisdom. If you know of any doctors in the area that are know about this I would love to have their names. They were given two doctors names when they found out about this. The one they are going to in New Brunswick and the other one was in Philadelphia. They felt Pa was too far to be running to every time you needed your doctor. But, this doctors bedside manner is lacking. When Linda called this morning it took 45 minutes for her to call back and the first thing she said was, "Well, if you look back over your notes, I told you this would start showing when she was between 3 and 4 months." Not what a new mother needed at the time.
Click to expand...

Erna,
I'm sorry for all your family is having to deal with right now. I know this crisis is scary. But I'm glad to hear it is from a UTI. It is not uncommon for kids with similar conditions to end up in the hospital when simple infections stress their bodies. Hospital stays like this are not out of the ordinary and can be very difficult for the families to endure, but usually treatment is very effective. It's just that there are more issues to manage. I'm not familiar with many of the docs at UNDMJ. But I can tell you bad bedside manner is not limited to any one facility. I'm sorry that this is what your daughter heard, though it may be factual, it is not helpful.

I do not know who the top doc is for this specific disorder. But I will see what I can find out. I can make some recommendations as to Geneticists. If you want and excellent doctor with a good bedside manners in the region, I would recommend:

Carol Anderson, M.D.
St Christophers Hospital
Erie Avenue at Front Street
Philadelphia, PA, 19134
1-215-427-8413

I know they have satellite clinics but I'm not sure where they are. They may have one in the Lehigh Valley. I'm not sure where your daughter is located.

or

Rhonda E. Schnur, M.D.

Office Locations:
110 Marter Avenue
Moorestown, NJ 08057
Phone: 856-968-7255

Three Cooper Plaza
Suite 200
Camden, NJ 08103
Phone: 856-968-7255

6400 Main Street Complex
Voorhees, NJ 08034
Phone: 856-968-7255
 
Brizjuan

Brizjuan

She is absolutely adorable... My son is about the age of Maddie and I cannot believe what it must feel like to get news of your child having a terrible illness... It sounds to me like Maddie is their little miracle child and I am sure she will be healthy in no time... We are all praying for Maddie...
 
M

momof6kids

NJRC Member
Thank you all again for your thoughts and prayers. Maddie got home from the hospital tonight, and the poor baby smiled when they laid her down in her own crib.

What a nightmare experience. One thing this experience has definitely shown them is that they need to switch doctors.

BTW, the UTI test came back negative, so they have no idea what kind of infection she was fighting off. Wish it had been the UTI, kind of scary when there are no symptoms like vomiting or a runny nose or fever. :(

Michelle, thank you again. I am forwarding Andy & Linda all the information that you sent to me. They live in Warren, NJ.
 
M

momof6kids

NJRC Member
Maddie, who was discharged yesterday and seemed to be her happy normal self, though not 100%, was very lethargic and not as responsive as she should be this morning. So Andy and Linda are on their way back to the hospital (St Peters) now to have her re-evaluated. Please think of Andy, Linda and Maddie as well as the doctors as they seek to evaluate/treat Maddie.


Andy just texted me to say that she is extremely hypoglycemic (low blood sugar). It is supposed to be 60-100 and she is at 7. Temperature was 96. They took a bunch of blood again and have her on an IV. They are going to ICU. And they are going to do a CAT scan to make sure there is nothing wrong in her head.

Erna
 
Phyl

Phyl

Officer Emeritus
Officer Emeritus
Oh Erna. That's so frightening. I hope that she's ok and that they get that blood sugar up as soon as possible. She has my prayers.
 
D

debfife

Oh no! I hope she's ok. That's a really scary blood sugar level.
They should reconsider going to CHOP. I know the 2+ hour drive is awful but they really have all of the BEST specialists there.

You're all in my thoughts.
 
M

momof6kids

NJRC Member
Maddie was not eating so they put a temporary feeding tube down her nose.
They will be feeding Linda's milk to her. 3 oz. every 3 hours.

They took another round of blood at 8 o'clock, every 6 hours around the
clock. They will be doing new genetics testing with this blood to see if
Maddie has other chromosomal issues that might be hindering her responding.

Her ammonia level is down to 40, 30 is normal. So we are thankful
that she is heading in the right direction. They are going to give her
carnitine to boost her energy. She's not awake much, but her grip is
stronger now.

They are starting to decrease her IV by 5 ml every 6 hours. The plan is to
have the IV out by noon tomorrow.

The speech therapist is coming tomorrow to watch her swallow reflex and hopefully have some suggestions on getting her to eat.

Erna
 
Brizjuan

Brizjuan

Good luck to you and your family. I know my boyfriend had posted earlier on, but I just wanted to tell you that you are in our thoughts and prayers. I can only imagine what you are going through, having a three month old myself. Good luck. I'm positive everything will turn out for the better.
 
Baxreefs

Baxreefs

Nothing can be worse that haveing a child you love in a situation like this. My thoughts are with you and your family today.
 
M

momof6kids

NJRC Member
When it rains, it pours. I spent today at the doctor with Jeff, who has come down with a serious case of strep. Which for all intensive purposes quarintines our family from seeing Maddie/helping Andy and Linda. AAAGGGHHHH!!!! I am so frustrated right now. While Jeff won't be contagious after being on the antibiotics after 24 hours, we have a 2-5 day window of incubation for the rest of us.

Maddie had a bad day today. She has not gotten any better and her oxygen levels started dipping, so she is now on oxygen. Also, they are having to suck flem from her throat every hour. If this doesn't get better, they are talking about putting her on a ventilator, to lower the chance of pnemonia.

She is still out of it most of the day. When the speech therapist came to watch her swallow, Maddie wouldn't wake up and swallow for them. So, they gave Andy and Linda a pacifier and gave them some exercises to try with Maddie to get her sucking reflex back.

The speech therapist is coming back tomorrow, as well as a neuroligist. They also did an EKG and a MRI today and those results should come back tomorrow. They said the genetic blood work will take a couple of weeks to get those results.

Praying for a better day tomorrow. Erna
 
B

boontonbob

Hi Erna - So sorry to hear about your sweetheart's struggles. I will say a prayer for your family this evening. Being close by at work, let me know if there is anything I can do to help in any way.
Bob
 
AngelPete

AngelPete

Hi
Our family will keep your baby in our prayers. lmk if you would like us to submit a prayer request to our church, Calvary Chapel Old Bridge. (CCOB.org)

Peter
 
M

momof6kids

NJRC Member
Peter,
Absolutely, the more prayers ascending to the throne of grace, the better.


First of all, thank you everyone for your prayers, they are the only thing holding us together right now. I just got back a little while ago from cleaning Andy's house. Since, I am not allowed down at the hospital right now, I think they wanted to give me something to do. Plus, the three dogs are shedding and the house was in need of some cleaning up. It must be really depressing for Andy to go home late at night and be alone. Every room has something of Maddie's in it. Pray for strength for both of them. It's not easy for Linda to sleep (or not) at the hospital either.

The last update that I had gotten was from about 12:30. And just as I
started writing this Andy called with another update. So this is a mix of
the two updates.

Her ammonia is back up a little so they're keeping their eye on that.
They are going to move her off of the breast milk and start her on a slow
drip of a lucine-free formula. The first feeding for this was at 3:30.

The MRI was clear, but they are taking her down right now to do another
one, that uses a different scanner. This one will check her chemical
impulses, instead of her electrical ones.

They switched her to a different oxygen meter, giving her a reduced
amount.

Andy took his guitar down to play, and books to read to Maddie and some
music. He was saying that has made a difference. She is opening her eyes
more, and looking around. Keep praying.

Erna
 
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