Re: My son Jonah

[Guest guest]

, How devastating for you all. Yes, I would go after that Dr. Maybe

they will start keeping better informed, maybe they will try to keep up more

on the mito issues which are not as rare as they all seem to think.

I think keeping the electrolytes balanced is difficult for mito patients

which is why we have a hard time with extreme heat and fevers and vomiting

etc. I think even a small imbalance is very difficult for us to handle where

the normal person could roll with it. The medical field needs to recognize

this and we need help understanding and dealing with it.

We need a handbook of possible problems and things to try and when to get

help.

Like my 2 yr old grandson spiked a 106 fever the other day and within hours

was pretty much OK again. Shenan has told the Dr.s her 2 kids go to 108 and

even the suppositories don't bring it down until it suddenly comes down on

it's own. They have a hard time believing it even when they see it!

I am so very very sorry for your little Jonah. I wish I knew something

brilliantly comforting to say to you. I honestly know how it feels as my son

died at age 3 and they did a trach and brought him back and told me if he

lived he would be severely braindamaged. I will never forget that long

anguished night and the following 3 days while we waited.

In our case he pulled thru and told us about going to heaven and being told

to return here. He knew all kinds of new words and turned out to be our

gifted student. He was legally dead for over 9 minutes.

I guess what I'm trying to say is I believe God has a purpose in all He does

so try to hang on and let His peace come into your soul and some reason will

reveal itself one day, if not on this earth, then in the life to come.

There is a poem about God weaving light and dark threads and how we don't

understand them now but that both are needful to make the tapestry

beautiful.

I send you love and understanding in your tears. If you want a copy of the

poem I will find it for you. Love, S.

My son Jonah

>From: shelley_lev@...

>

>Hello everyone, I hope you remember me, some of you who I have corresponded

with have really been supportive during a tough time for us.I haven't posted

for a while as Jonah has been quite ill.I am so frustrated and angry I don't

even know what to do anymore.You may remember he was in hospital 2 months

ago to get established on home parenteral nutrition, well the GI doctor I

have been having trouble with decided to take him off the tpn and his iv

carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs

disagreed but since Jonah was under the GI service at the time he had the

final say.We all explained to this doc that Jonah has cyclic diarhhea and

vomiting and goes down very quick.He had gained 4 pounds on the tpn and the

carnitine had really improved his strength and health.TPN doesn't come

without it's risks,infection and liver damage being the 2 worst, but the

alternative for Jonah is starvation and dehydration.So anyway, Jonah came

home and over the following two weeks he lost more and more weight and

fluids until finally his metabolic doc said come back, we need to put him

back on.I was so relieved!This was last friday.On Sunday his vomiting

increased five fold and he went into a seizure and aspirated the vomit.I

rushed him to emerg and he was taken care of and was actually doing okay by

6pm.We waited another 6 hours to go to a room just for overnight observation

and by 1 am he looked odd so the nurse called our pediatrician and he cam in

to start an iv.When he attepted to do it Jonah didn't even respond, he had

gone into a coma state.They rushed off blood work and it came back his

electrolytes were very unbalanced and he had a sodium of 174.`176 is

incompatible with life.They start flushing him with fluids and his rouses

enough to start seizing and he had a 1.5 hour seizure.He just kept

convulsing from there.They arranged for transfer to a bigger centre and

intubated him.I was told he probably wasn't going to make it.I was reeling,

I couldn't believe it.What had gone wrong?!!!He is now severly braindamaged,

blind, seizing and in a great deal of pain.Just a week ago he was smiling,

talking sitting up, eating and breaking in his first tooth.I was told that

he dehydrated and lost a lot of free water from his system causing his

sodium level to go up,(it eventually went to 198),and that the sodium wasn't

processed through properly because of his mito disorder.If he had stayed on

tpn this would have not happened, so I am wanting to really hurt that gi

doc.He will not want to run into me right now.Has anyone else experienced or

heard of severe electrolyte problems in mito children, we need some more

light shed on this.I have lost my son due to something that could have been

prevented.I just feel so helpless and I don't know if I can handle this

one.Jonah has always made it easier for people around him to accept his

illness, because he was so happy, vibrant, social and bright little guy, and

now that is gone and what do we do? Thanks for listening.

,mom to an angel.

>

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