Re: Kris- Mayo hospital and scan info

[Guest guest]

Usually we see Dr. Renaud personally the next day and once later

the same day (that one was done very early in the morning). We have

also talked on the phone to her about the results. We have had

several brain scans and angiograms with Asenath so have had many

opportunities to hear the news in different ways. If you are there

for IV fluids only before the scan you will want to make sure to know

how and when to be admitted to the hospital. If you are going

through admissions it works best, but if you need to go through the

ER, make sure you have Dr. Whiteman set it all up for you and call

ahead to make sure they received his plans for admittance. Sometimes

the ER needs to call to the resident on call on floor three to get

Dr. Whiteman's set up plans. I don't want to worry you because it

always works out ok and it quite quick if all is set up. I just

wanted to warn you that not everyone is always up to speed and it can

be a scary thought to think you drove all that way and they don't

know your coming. In a last resort they can always call Dr. Whiteman

or one of his associates.

St. 's is a " home-away-from-home " for us and we know quite

a few of the nurses and doctors by now. Everyone is usually quite

nice and if you are there for only IV fluids you will be pretty much

left alone. When you go for other reasons there are tons of doctors

involved and retelling info can be tiring at times. The play rooms

are great and you can bring anything to your room and have them extra

clean for your child if needed. You can ask the flight crew to do

the IV if you feel more comfortable but ask shortly after you arrive

so they can have time to get them. We always use them as the girls

are hard sticks. Asenath looks like a pin cushion even with the

flight crew from this last trip. Zipporrah always takes two to three

sticks as well. Mayo has a policy of one stick per person unless it

is the flight crew. (At least they used to have that policy?!) Feel

free to ask more questions if you want.

Some days Dr. Whiteman is busier than others. We tend to see

him in the afternoon and so he is less hurried. We were scheuled

three hours with him but only used 1 1/2 hours this past Wednesday.

He never rushes through our visits and we are able to ask anything we

need to. We have developed a good relationship with him and I am

sure we are one of his challenging families to figure out. Asenath's

CNS vasculitis is so rare and our Rheumotologist thinks Mito is

totally to blame so it gives Dr. Whiteman a lot to look into and to

try to keep her healthy. Now with Zipporrah also being affected, and

so much like Asenath, except much worse earlier on, I am sure he

wishes to find out which type of Mito we have. He definitely has the

credit of saving our daughter's life. Asenath was so sick when we

first saw him. We never thought she would live this long. If it

weren't for the vasculitis, I think she would be much better off,

although we believe many of her strokes are metabolic in nature,

rather than vascular. Every day is truly a gift. I thank God we are

able to see how precious our kids are! Tonight my two oldest were in

their school play and I am amazed how grown up they have become.

Luke is growing a mustache now and so big. Leah is maturing into a

beautiful young lady. Even my Rachael, not in the play, has grown up

on me. We are truly blessed! Every one of us. It has been a hard

week and yet I can say it is all worth it just to have these kids.

Let me know how Mayo goes or if I can help you further. Best

wishes for the scans. If you don't have a plan as to when you hear

the results, call Dr. Renaud and ask her when you will hear. Take

care.

Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Isaac,

Tirzah, Kezia, and Marquis

> So glad to here there were no change in her scans-- I'm sure it

will

> be a relief to get her off the steroids. I am amazed by you all

the

> time. I only have to children to deal with and you handle such a

> large family with such strength.

>

> I have a few questions regarding the scans done at Mayo. The boys

> are having theirs the 7th and will be admitted the 6th to St.

's

> for IV's. Will Dr. Whiteman or Dr. Renaud see us while we are

> there? How long to get results--is this done at a follow up

> appointment or while we are still there. What has been your

> experience with St. 's? Last time we saw Dr. Whiteman he was

so

> busy that we hardly got to discuss any details--normally he spends

> the whole morning with the boys so he must really be swamped these

> days.

>

> Thanks so much,

>

> Kris

> Cole-partial complex 1, probable thiamine responsive PDH

> Zack-probable thiamine responsive PDH

>

> > Asenath's scans showed no change so thankfully no more

narrow

> arteries. This means we will continue to wean off the steroids

over

> the next 7 months. She will always be in danger of strokes form

the

> 4 narrow arteries she has and there is always a possibility of

> worsening so we will follow closely. She is dealing with a urinary

> tract infection so we will be going back to Mayo sometime soon to

do

> more testing. Otherwise, she is doing well. The trip was very

> tiring for her and she needs to catch up on her rest though.

> > Zipporrah has the trachea problems I spoke of in another

> letter so I won't go into them all here. She is doing well with

the

> g-tube but unfortunately will not be doing oral foods for a while

at

> least. We will continue to update you on the girls. Thanks for

your

> prayers.

> >

> > Darla: mommy to:

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

> tube, disautonomia issues, hypotonia, heat/exercise intolerance,

> oxygen use, asthma...

> > Zipporrah (6 mon.) Mito, strokes, sensory issues, g-tube, slight

> tracheomalacia, tracheal ring...Get more from the Web. FREE MSN

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