Spencer Update (long)

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Hi all........it is 2:07 am and......I can't sleep AGAIN so I thought that

I would write an update.

So..........I am really sleep deprived and had to drive to Pittsburgh,. PA

today from Detroit, MI.........6 hours away for a GI doctors appointment.

Was prepared to stay there a few days. I Emailed the doc the day before we

left with the whole scoop on what was going on with him and he said that he

needed to evaluate Spencer in person before he could make any decisions on

what to do next.

So, I start to drive out to Pittsburgh by myself.......(Very scared cause I

have no sense of direction) About 25 minutes into the drive I can hardly

stand it cause I can't keep my eye's open. So I stop at the nearest Rest

stop and buy some No-Doz........I took three today to try to stay awake and

be normal in front of the doctor. I think that I looked like a disaster to

him. I was wearing sweats, I did my hair and makeup though. (I think that

was good of me?)

So, I get there and right on time.......well, 1 minute late. My appt was

for 2:40 and they wrote that I got there at 2:41.....big deal. Anyway, I

go and get Spencer weighed......lost a few oz's. No growth.......So the

doc comes in and I tell him everything that I told him was going on in the

email I sent him the night before, (he writes it down), hummmmm.......I

think it was already written down in the email??? Well, anyway......He

listen's to Spencer's chest? Duh? I can do that myself and tell if there

is a problem......he feels his belly. Duh? I can tell if he is bloated or

has an obstruction of some sort. That was it basically. He say's " Well,

in order for us to decide what to do next we need to put him under General

and do full biopies of everything, top to bottom...find out why he is

bleeding, why he is not doing well on the prednisone anymore?? " All, by

the way, mentioned in the email I sent him that I thought he would want to

do. My impression was that we were going to do all that stuff there, while

we were there since I drove flippen 6 hours to get there in the first

place.

So he proceeds to tell me that he wants to do this procedure next Tuesday

or Wednesday. So I am thinking, ummmmm.....why did I come all the way out

here to tell you exactly the same thing I told you in the email and then

come all the way back, to come right back the next week??? (Not even a

week, less than a week.) I am working, buying a house and have my own

medical probems to deal with.

(These are just my thoughts) No, this is not going to work. I can't stand

the drive........I am pissed that he brought me all the way there to say

exactly what he said back to me in the email........! Ahhhhh, what a waste

of time.

Next week will be worth it, but..... maybe he could have thought about

scheduleing the appt and then an endoscopy for the next day so we could

have done it all together. Even if there is a thought that he MIGHT want

an endoscopy done??? So we can do it all in one trip? What do ya'll

think? Am I crazy or what for thinking this?

PLEASE, don't get me wrong here......I love Spencer's doctor. He is a

great guy and is very knowledgeable, he has done wonderful things for him.

I am sure he would have died if it weren't for him....but I am a little

peeved right now. (Sorry, I know doctor's are human and defnetly not

perfect)

In August, Spencer broke his IV line and it was patched up, but they used 2

french sizes too big for the line. His line was a Cook 5 double lumin and

they used a size 7 to patch it. Doc today sent us down to radiology to

have it checked to see if it needed to be replaced. (Thinking.... AND told

the doctor myself that, it seems to be working fine to me....no leaking, no

infection, site looks good. I can figure that part out myself). So that

is what the surgeon radiologist told me. Exactly what I thought and told

the doctor. They did say, though, that it was not an optimal line cause

it broke so close to the incision site and it is really flimsy, so they

called the doc to see if he wanted it replaced. He told them to keep it

because we need to save his veins....because he will need them and we don't

want to ruin a vein because he will be long term TPN dependant.

Wow!!!...He was supposed to be on TPN for only 3 month initially I was

told. Well, I guess that is the way that things go. (I should know this

by now......that is the way it always goes.)

So now the doctor told me that Spencer is loosing weight. He weighed in at

18lbs, 20.5 months old, 27 inches long. Most of it is Steroid weight. So

his likely weight is really 16 lbs at 20.5 months old. Heck, I can't

believe that he is so dang tiny. I get so used to it. Anyway, the doctor

said that he is to the point that he is going to raise his TPN even higher.

BTW...we started out at 400 cc's TPN and 800 cc's Vivonex through the

g-tube. Now at 608 cc's of TPN and only can tolerate 200 cc's of Vivonex

at 15 cc's an hour. (But really don't know how much he get's cause it leaks

all of the time and get's dissconnected) But he still gagges and retches

and has diahrea. So, doc said he can't survive on 15 cc's an hour and

current TPN rate so he is going to be totally dependant on TPN now. I am

so said about this. I feel that he is just going backwards and not

forwards. It is so frustrating to me.

On a good note, we interviewed a really nice RN for Spencer.......I think

that we will have to have three all together. But we are just going to

start out with one 5 days a week, during the day (initially). He will only

be hooked up to his pumps till about 12 pm, but she can un-hook the TPN and

G-tube and give med's and flush and just play with him. I like that idea

because I will be able to watch and see how she deals with him. She also

said that she really wasn't looking for night shifts, but when brought

Spencer out to meet her she said that she would work things out with us on

moving to night shifts. Also we are moving about 30 minutes away and she

said she would travel out there to do Private duty for us as well. (Sounds

like she wants a permanate position, I hope it's not just a " between, I get

a real job thing " . We will see.

There is another gal that will work for us every other weekend.....day or

night. Whatever I pick.

Doctor said that he would write up a letter demanding nursing care for him

as much as we need.....all we have to do is tell him how long and how many

days to authorize. Cigna said that they will pay for whatever the

specialist say's he needs. Thank heaven's.

I will be having surgery sometime soon for my back (slipped

disc's)......the daytime nursing care will help as well with that.

So, I will keep you all posted on what happen's throughout the week and

what the results of the procedures will be and what we will do next.

Sorry this is so long and I hope I don't sound too ronchy......but I really

feel peeved right now. It's nice to vent sometimes, ya know?

Love,

.......Mum to Spencer, we really don't know what the heck is going

on.

P.S. Does anybody live near the Pittsburgh area that would feel okay with

Spencer and I staying with them while we are out there if we need to stay

for longer than one day?? To cut down the cost and it would be great to

meet someone in person dealing with similar problems.

andrea.allred@... (email address)