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Update on Spencer

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Hello everyone,

Well, I have just been going through all of the mail that I had missed over

the last couple of weeks.

Well, let me just tell you about our little trip to Cincinnati. We got into

the Mc house on Tuesday afternoon. We got there Monday night

and stayed at a hotel.

Tuesday we went into the Clinical Research Center for the IV iron test dose

and then one complete dose if he didn't react. They told me that with his

history that he would probably react. Well suprise, suprise.....he handled

it just fine. A little temp and cranky but that is about it. We were

scheduled to go in for 4 complete doses (50mg's) I believe.

Well, first let me tell you how impressed I was with some of the hospital

protocol. This may not seem amazing to you all, but it was to me. Any time

they access his line they have two nurses there, sterile, masks and betadine

for three minutes and dry for 1 minute and then they have to document it on

the chart and the other nurse signs off. VERY IMPRESSING TO ME! The only

problem is that they only flush with 5 cc's of saline (not too bad) but only

3-5 cc's of 10 unit heparin. ACK! I asked if they could make a standing

order for him to use 100 unit hep and they said it was hospital policy and

they couldn't. Doc's couldn't even make the change unless it got to the

point of having to Urokinaise him.

Well, anyway the first day went well......we were there for about 9 hours

altogether. Dr. Putnam stayed there almost the whole time. Apparently he

got his licenses approved the week we got there. YEAH!

On Thursday night when I was ready to hook Spencer up to his TPN his line

was a little harder to flush than usual......but not bad. Well, I flushed

and connected him. All of a sudden I noticed blood everywhere on his shirt.

I decided to unhook him and flush again to see if his dressing would get

saturated. It didn't.......so I decided to pull back and blood came right

under neigth his Covaderm VAD dressing. So I pulled that back and the

outter lumen had burst.........sooooo I ran him to the ER. When I say ran,

I mean ran. The RMH is right next to the ER. They promptly put him in step

down trauma, with two nurses at his side at all times.

I was totally unimpressed with the ER. They kept on touching his broken

line with bare hands, no mask.....etc. Anyway, finally surgeon on call came

in....actually three of them and they determined that it was unrepairable.

The inner lumen had a pin hole in it somewhere and it would be impossible to

fix. So they put him on a " add on " for surgery. I told the nurses and

resident that Spencer has a BIG sugar problem and wasn't sure if he would be

okay over night. So they took his blood sugar and it was at 56. So they

said......take him back to RMH and hook him up to his j-tube feeds and it

should keep his BS up. (Hmmm, only 15 cc's an hour of Ped Vivonex). Oh

well, I believed them. They told me to turn his feeds off at 8 am. By that

time it was almost three. So he got about 80 cc's of vivonex.

I called at 7 am to see when he was scheduled for and he wasn't yet, then

got a call back 15 minutes later saying hurry up and get over here...we have

an opening. Well, I took a bit of time to get over there....cause I had to

talk to anathesialolgists and all and GI.

I brought him in at 9 am and told them everything......the whole history!!!

Finally told them his Blood sugar may be a problem. He was acting really

tired, but I thought from the late night it might be just sleepy. Well,

they decided to take him back and draw his Blood sugar once they have an IV

in. Nurse came out and told me it came in at 28. I was freaked out of my

mind. They continued with surgery and about 1 1/2 hrs later the surgeon

came out and said that they got at really good site, tunneled and cuff up 1

1/2 inches. YES! She also said that they had been running Vaco over the

entire surgery and it was to run for 2 1/2 hours.

Finally got to see him and his BS was up to 50, they had him hooked to D-10

1/4. Then took his sugar about an hour later and it was up to 92. They

then decided to take him to extended stay same day surgery. They took his

blood sugar again about an hour later and it was back to 50. So they

started to infuse the D-10 1/4 at a rate of 65 per hour. Finally my husband

got there from Detroit and brought in his tpn and hooked him up to that and

he stabilized.

The really huge bummer is that he got " Redmans Syndrome " from the vanco!

But they aren't sure if it is only just redmans or a true allergic reaction

b/c it was ran over 2 1/2 hours 92 mg. So now we are stuck.....Next time he

need Vaco or family of drug he has to go to PICU or step down. Well, we

finally got back to RMH and it doesn't end.

Saturday we notice that he is bleeding a lot from his site. I guess they

call it weeping?? Anyway......keeping a close eye on it. It is still

weeping.

Sunday, I went to pick Spencer up and his G/J tube got caught on the edge of

the foot stool and completely came out balloon inflated and all. 14 French

size and 10 cc's of water. Ugh!

Monday was heck........did the iron treatment that didn't get done on

Friday. He was running a temp, so they did cultures on him. Waited in

Fluoroscopy for 3 1/2 hours for them to put a new G/J tube back in. That

really sucked. But we were a fit in. They didn't have the right

radiologist to put it in. They needed intervention and not reg. radiologist

so had to page and the whole deal. Anyway, decided to put a 16 French in to

see if we won't have the problem of the balloon just popping out. It looks

much better and no drainage around his G-tube site like before.

So Tuesday I waited until I got 24 hour cultures back and they were neg.!

So they said we were free to go home. Only problem is that Spencer never

shows growth until 48-72 hours. Oh, well......I wanted to leave.

Needless to say it was MORE than I had expected.

We did find a wonderful townhouse to move into on the 13th of November in a

nice suburb of Cincinnati, called Fairfield township. 15 minutes from the

hospital and there is the Children's GI outpatient clinic 5 minutes from us.

Dr. Putnam will be there 3 Monday's out of a month. So really good there.

Unfortunately Mike will have to stay here in Michigan for who knows how long

until he can get a job in Ohio. But the drive is about 3 hours or so from

here so not bad. Take I 75 all the way.

Apparently this hospital only does liver transplants and Dr. Putnam and Dr.

Rudolph are going to be heading up the small bowel transplant team with the

Liver team. He is going to be Director of some division......I would assume

Transplant. Not sure though. A Director of some sort in GI.

Anyway, Spencer is still running a low grade fever and weeping from his

site. He is happy though he complains about it hurting. I wouldn't blame

him. We are headed off to move in on the 13th of November. Finally!!!

It's about time.

Anyway......sorry to ramble on so much (if you got this far),

My thoughts and prayer are going out to each and every one of you.

Love,

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  • 5 months later...
Guest guest

Sorry for cross posting.........

Update on Spencer

> Well Hello everyone,

>

> We are back home for less than 24 hours for an appointment for me. It's

> been really crazy to say the least.

>

> Since it has been so long I will just give you all the update from the

last

> couple of weeks. Spencer just got out of the hospital from being there

for

> a couple of weeks. I took him into his surgeons office to look at his CVL

> site b/c it looked like it was infected. It has some puss that came out

of

> it. Well right there they admitted him and pulled his CVL the same day.

> They put him on Vanco and to prepare him for surgery. They did decide to

> move his G-tube and put in a J-tube and put in a new central line (We did

a

> MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided

> to get really sick and ended up on 4 times the amount of steroids, a picc

> line, and breathing treatment of two different drugs for about 5 days. We

> tried about three times to take him to surgery and all three times they

said

> he was too sick. So we are home now and surgery is scheduled for the 21st

> of this month.

>

> Dr. Putnam was acting a little quiet and distant this last hospital stay

and

> my husband finally found out why........he has been thinking pretty hard

> about Spencer and our new baby.

>

> First he wants us to seriously think about putting the new one directly on

> Elecare (as he believes this disease is genetic) so that we can by pass

some

> terrible times with ng tube and G-tubes and so forth. He told us what

ever

> we do, do not do the D*** Nissan on the new baby, it's for reflux only!

His

> words.

>

> He also has a theory about Spencer. Although Spencer seems to have

> Gastroparisis, CIP and so forth he thinks he has something called

" Visceral

> Hyperalagesis " (sp) in addition to the Eos's disease. He explained it

like

> this.....that Spencer experiences an extreme amount of pain when the gut

has

> to do something. In other words, when Spencer gets fed a bolus of Elecare

> it will make his stomach bigger (which is normal) but for him it causes an

> extreme amount of pain and because the brain has an impulse for pain in

the

> gut it tells the gut where ever it hurts to shut down. So, in essence, he

> mimic's a lot of disorders. How we will ever treat this, I have no idea.

>

> I have not looked this up yet on the web, but I think it is kinda

rare...but

> now sure.

>

> I will keep you posted though on how Spencer does with the surgery on the

> 21st.

>

> As for me........well, I am due on the 8th of August. I have seen the

doc's

> 3 times in Cinci and will deliver there at a hospital called Bethesda

North.

> I have had two ultrasounds so far. IT'S A GIRL!!!!!

> I am so excited and so is both Mike and Spencer. We are going to name her

> Kelsey Marie (Not sure on the spelling though). I am going to the high

risk

> clinic every two weeks and also am doing ultrasounds frequently. On the

> last ultrasound they found something called bright bowel.

> Interesting......it can signify Cystic Fibrosis, obviously bowel

disorders,

> blocks and so forth so we are keeping close eye on it. Please pray that

she

> will be okay. Other than that, physically, she looks very normal.

(Sharon,

> didn't Clayton have bright bowel???)

>

> I decided to do a C-section again.........on the 1st of August, unless she

> decides to come early of course. My tummy is getting big and I am

starting

> to really feel pregnant.

>

> In 7 weeks our lease is up in Michigan so we are going to pack everything

up

> and put it in storage. Mike is going to try to work out with his work to

> work three days in Michigan and two days in Ohio so we can keep the same

> insurance and also be with a company that is so understanding of Spencer's

> condition. I sure hope that this works out. We really want to get a

house

> by May, so hopefully that will work out too. I told Mike, if I have to

come

> back from the hospital to the RMD I will scream bloody murder! LOL!

>

> Well, that is about it in the Allred household......I will keep you

updated

> as things progress.

>

>

>

>

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