Re: Zipporrah has pneumonia

[Guest guest]

Darla

Do you have a cough assist machine? Zipporah should be able to benefit from it. It helps with coughing and clearing. It is non-invasive and the best tool around to help them cough. Ask you ped or pulmo for it.

We'll keep you in our prayers and hope the rest of the kids will stay unaffected.

best regards

rosy

[Guest guest]

Ugh.... Darla thats awful!

I hope the two of them fight it off on their own and your able to

stay away from the hospital...

Keely

> I had to take Zipporrah and our new foster son to ER last

night due to

> both of them going downhill with their excessive phlegm and lung

issues and

> as expected Zipporrah and he have pneumonia. Zipporrah also has

terrible

> double ear infections. The ER staff advised us to try keeping

them home as

> the hospital was full of RSV in the children's section presently

and

> wondered if it would actually hurt them, especially Zipporrah.

They gave

> them both Rosephen (spelling?) shots and advised us to go to the

docs again

> today to keep a very close eye on them. I have been doing neb

treatments

> every 4 hours on Zipporrah for the last several days and began to

do so with

> Joey as well the other day as he just started going downhill

really

> yesterday. This is a nasty bug and wish it on noone! We are

doing ok

> though even though the virus hit at a bad time dealing with two

new ones in

> the home. I am really hoping the little girl, , doesn't

also get

> ill. Asenath also has the bug and was worse a couple of days ago

and we are

> hoping she keeps fighting it of well. Zipporrah has had a small

right-sided

> hit already, but no major setbacks thus far. We would appreciate

your

> prayers.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome,

iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

So sorry to hear that , your baby, Zipporah, Asenath, and

Joey are all sick (let's mix two families into one e-mail, shall we?

Thinking of all of you. Hope they all get better soon.

Hi Darla,

We will keep you all in our prayers.. please do the

same for us as we think the baby might have gotten RSV

from the hospital. She is doing ok but needing

constant suctioning.. about every 2 to 3 minutes at

this point and just got his EEG done with

major seizure activity on all levels they tested. This

is not good as this is very new for him. He also has

totally stopped bowel sounds and is so distended he

looks like he will pop. I am waiting for Tom to get

home to take him to the ER to get an X ray done to

find out if there is an obstruction. Please everyone

put our kids in your prayers as well.

We will keep both of your little ones in ours!

Kimberley

--- Darla Klein

wrote:

[Guest guest]

Darla, Kim and everyone else battling sickness with their kiddos,

My prayers go out to all of you and your families. Audrey too has been down with another sinus infection. Have any of you tried to get the RSV shots for your little ones? Audrey's doctor wrote a letter of need to her insurance company explaining her need for the shots because she is so compromised and it was approved. It is getting kind of late for this year but it is a thought for next year. They will argue that they don't meet the criteria for these shots (they are VERY expensive) but because of the decreased muscle tone and the inability to fight off infection they do qualify. The first year Audrey didn't get the shots she ended up with RSV and a hospitalization. The second year they got her approved and she did fine. Last year they said she was too old as they only give them to children under two because by then the "normal" child is able to get through these infections. Yep, she was back in the hospital and we nearly

lost her. This year she has been receiving the shots and she has done better again. Please talk to your doctors about this, at least for next year.

My prayers are being said for all of you.

Kathy, grandma to Audrey, 3 yearsKimberley Kretzmer wrote:

Hi Darla, We will keep you all in our prayers.. please do thesame for us as we think the baby might have gotten RSVfrom the hospital. She is doing ok but needingconstant suctioning.. about every 2 to 3 minutes atthis point and just got his EEG done withmajor seizure activity on all levels they tested. Thisis not good as this is very new for him. He also hastotally stopped bowel sounds and is so distended helooks like he will pop. I am waiting for Tom to gethome to take him to the ER to get an X ray done tofind out if there is an obstruction. Please everyoneput our kids in your prayers as well. We will keep both of your little ones in

ours! Kimberley --- Darla Klein wrote:> I had to take Zipporrah and our new foster son> to ER last night due to > both of them going downhill with their excessive> phlegm and lung issues and > as expected Zipporrah and he have pneumonia. > Zipporrah also has terrible > double ear infections. The ER staff advised us to> try keeping them home as > the hospital was full of RSV in the children's> section presently and > wondered if it would actually hurt them, especially> Zipporrah. They gave > them both Rosephen (spelling?) shots and advised us> to go to the docs again > today to keep a very close eye on them. I

have been> doing neb treatments > every 4 hours on Zipporrah for the last several days> and began to do so with > Joey as well the other day as he just started going> downhill really > yesterday. This is a nasty bug and wish it on> noone! We are doing ok > though even though the virus hit at a bad time> dealing with two new ones in > the home. I am really hoping the little girl,> , doesn't also get > ill. Asenath also has the bug and was worse a> couple of days ago and we are > hoping she keeps fighting it of well. Zipporrah has> had a small right-sided > hit already, but no major setbacks thus far. We> would appreciate your > prayers. > > See www.caringbridge.org/ia/mitomomof9 and> www.heartbeatsformito.org to see > a photo look into what Mito looks like> Darla: mommy

to> Asenath (4) Mito, CNS Vasculitis, strokes,> migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, global delays,> asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye> issues, autistic behaviors, > gastric emptying issues...> Zipporrah (14 months) Mito, strokes, neuro-motor> planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme> fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian> artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping> syndrome, iron > deficiency, ...> Luke (16), Leah (14), Rachael (13), Isaac (10),> Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with> Mito symptoms) > __________________________________ Do

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[Guest guest]

I will send lots of prayers your way. I hope this goes away really quick for you guys.

They are probally right about not exposing the kids to RSV, that is a really nasty thing. My oldest daughter got it at ten months, she spent 4 days in the hospital and two more years dependent on the nebulizer (and she was healthy at the begining!) It is probally not possible, if you have a virus running through your house, but twice when Grace had to be admitted after surgery they put her on the cardiac floor to avoid her being exposed to anything. The cardiac floors are sterile and they wont even admit visitors if they are showing any signs of a virus. They really make a good place for a non contagious mito kiddo. (The cardiac kids usually like the new face for a few days too!)

Best wishes

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[Guest guest]

Sorry to hear about the illnesses, Darla! Please let me know if there's

anything I can do to help. We are battling strep throat here. I took Mason

in this morning. I am just kicking myself as Lindsey got a hold of his

medicine syringe and was walking around sucking on it (after he had his

mouth on it!) So, just waiting for her to come down with it and end up in

the hospital. Oh, better days are ahead, right!!!???

Let me know how I can help!

Kim

Zipporrah has pneumonia

>

> I had to take Zipporrah and our new foster son to ER last night due

> to both of them going downhill with their excessive phlegm and lung issues

> and as expected Zipporrah and he have pneumonia. Zipporrah also has

> terrible double ear infections. The ER staff advised us to try keeping

> them home as the hospital was full of RSV in the children's section

> presently and wondered if it would actually hurt them, especially

> Zipporrah. They gave them both Rosephen (spelling?) shots and advised us

> to go to the docs again today to keep a very close eye on them. I have

> been doing neb treatments every 4 hours on Zipporrah for the last several

> days and began to do so with Joey as well the other day as he just started

> going downhill really yesterday. This is a nasty bug and wish it on

> noone! We are doing ok though even though the virus hit at a bad time

> dealing with two new ones in the home. I am really hoping the little

> girl, , doesn't also get ill. Asenath also has the bug and was

> worse a couple of days ago and we are hoping she keeps fighting it of

> well. Zipporrah has had a small right-sided hit already, but no major

> setbacks thus far. We would appreciate your prayers.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

> see a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>