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In Need of Emotional and Mental Support Right Now

Phyl

Phyl

Officer Emeritus
Officer Emeritus
Those are some tough diagnosis, Erna, but I'm sure with all the prayer, hope and love she's surrounded by she'll pull through those too. I'm glad she's better from last weeks horrors. It is so great to hear of the 6 and 11 year olds ahead of you on the journey. I'm sure they inspire great hope. Imagine living through the early years without even the limited knowledge you have now. I'm glad to hear it and glad you're in touch with them.

Hang in there! Thanks so much for the update. I'm sure you're all exhausted.
 
D

debfife

Many many hugs to you & your family Erna. I hope she gets to come home next week. I am so glad you found people with the same condition to talk to.
 
M

momof6kids

NJRC Member
Maddie is off the ventilator. She is coughing, crying some and mad which is a good sign. ; )

Maddie will be getting respiratory treatments every four hours to help her keep her lungs and airways open.

They have her off of the sedatives and the pain relievers. Pray that the withdrawl from the narcotics will be tolerable.

She is off of the feeding tube right now also. Pray she will start eating later in the day and not have to go back on the tube.

Erna
 
Baxreefs

Baxreefs

I've been thinking of you and Maddie quite often Erna, it's hard not to. Even though she's not 100% these are all very positive steps and I m so glad to hear of her progress.
 
M

momof6kids

NJRC Member
Just received this from our son Andy:

Wow what a day. I feel like I'm living an episode of House!

The biggest news today was that one of the tests that was sent out last week came back positive for infant botulism. Here are some highlights:

-About 100 cases of infant botulism in the US a year.
-The classic symptoms of botulism include double vision, blurred vision, drooping eyelids, slurred speech, difficulty swallowing, dry mouth, and muscle weakness. Infants with botulism appear lethargic, feed poorly, are constipated, and have a weak cry and poor muscle tone.
-The respiratory failure and paralysis that occur with severe botulism may require a patient to be on a breathing machine (ventilator) for weeks, plus intensive medical and nursing care. After several weeks, the paralysis [of her arms, legs, and face muscles] slowly improves.

So this is pretty much what sent her to the hospital in the first place. At this point the doctors expect the symptoms to fully wear off over the next three weeks or so, with no lasting damage.

In a strange way, this is really the best news we could have received. It means that there was likely some overemphasis on her metabolic condition (time will tell), and that she should make a full recovery soon.
 
Phyl

Phyl

Officer Emeritus
Officer Emeritus
Wow. How did she end up with botulism?! Holy macaroni. Hopefully she's gotten it all out at once with all she's gone through this week. I'm so glad to hear that she's feeling and acting better.
 
Brizjuan

Brizjuan

Thats great news... I am very glad to hear that it did not turn out to be a a more serious illness.. Me and my girlfriend have been following this thread religously since it started.. We talk about little Maddy as if she were our own family member and we both just took a deep breath of relief when we heard this news... Keep us posted on her recovery!
 
M

momof6kids

NJRC Member
Maddie was taken off of the ventilator on Friday morning. The RSV is cleared up also.

The botulism has to run its course. So, 3-5 more weeks and they tell us that everything will be back to normal. She has very weak muscles right now because of it. I was calling her Flopsy all Friday night. She has less control than a newborn. The doctors told us that infant Botulism comes from the soil, so they are thinking possibly the dogs brought it in and somehow Maddie got it. ???

Linda was able to nurse her for a little Friday, which was wonderful for both of them. I worked with her with her pacifier on Friday night when Maddie and I had a sleepover, so Mom and Dad could go home and get some much needed sleep. ;D

Today has been a really good day. Maddie has been taken off all antibiotics, seizure meds, and oxygen. So she has just the feeding tube now. The therapist will be coming in tomorrow to watch her swallow, and if everything is fine, they will start weaning her off the feeding tube.

Maddie has been having a problem with high blood pressure. They were going to do a kidney ulstrsound today but it has been cancelled. There is a correlation between high blood pressure and the kidneys, which is why they talked about doing this. The doctors are going to keep an eye on her blood pressure , they are thinking that possibly some of the meds she was on caused the spike. So, hopefully now that she is off most of the meds, it will go down.

They were talking about moving her from PICU to the Pediatric floor but, they are probably not going to do that now, which is really an answer to prayer. It would have meant sharing a room, and being on a noisier floor. The kids there aren't as sick as the ones in PICU and tend to be a little bit loud. ;) Plus, they know the nurses on PICU and know which ones they want to get for Maddie. The reason is that the Pediatric floor has no available beds at this time.

Thank you all for your thoughts, encouragement and prayers.
Erna
 
Phyl

Phyl

Officer Emeritus
Officer Emeritus
Glad to here that Peds doesn't have a bed for her! Hopefully she'll enjoy the rest of her stay right where she is. Thanks for the update. I'm so glad things are looking up. What a tough road.
 
M

momof6kids

NJRC Member
This picture was taken of Maddie on March 21. She is looking like her old self again. Now it is just waiting for her strength to return. Maddie has been moved to Children's Specialized Hospital in New Brunswick for rehab. She has sessions each day with a Recreational, Physical, Occupational and Speech Therapist.

Last Wednesday Maddie was able to take 2 swallows from a bottle, on Thursday she took 5 mL, Friday she took 10 mL. Saturday they were working on nursing and Sunday she took 40 mL. Just so you know 30 mL = 1 oz. so as you can see she is making progress but can't eat enough to sustain herself (She needs 4 oz. (120mL) every 3-4 hours.

Thank you all so, so much for all your prayers. And pray for strength for Andy and Linda also. We are now up to 32 days away from home.

239_23_03_09_3_56_58.jpg
 
M

momof6kids

NJRC Member
So, today is day 45 and Maddie is supposed to come home on Wednesday. ;D We have a family session with all the doctors and the therapists tomorrow afternoon to confirm this.

Maddie will continue with outpatient therapy for up to 6 weeks more. She still cannot reach for things on her own and she can't roll over still, though she is getting close.

At some point, I am hoping my life will return to normal, whatever that is. ;)

Thanks again to all,
Erna
 
Phyl

Phyl

Officer Emeritus
Officer Emeritus
Day 45. What a journey. It has to be near to overwhelming for all of you. I'm glad she's finally getting ready to go home though. Prayers for smooth sailing from here. Thanks for the update!
 
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