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Roberts Stanford tests/Surgery/ and Recovery (Read 5846 times)
Islandentity
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My son Robert has MM

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Drummond Island, USA, usa, 387, 60, MI, Michigan
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Roberts Stanford tests/Surgery/ and Recovery
Oct 18th, 2006 at 12:38am
 


Day 1- Spect Scan- Stanford

Running out of space scroll down to 11/01/06 reply to see rest

Alls well that ends well, Met Jill shes cool, Tests were cool to see done, The techs that did it I dont think had much experience with little ones though.  He went through the Diamox administrstration and relaxing, so well that he fell asleep, then they took him straight from there to the scan (appearently they needed to use the older one, ) They didnt block his head and he slowly slipped down about 2 inches in the 30 minute scan , the camera coming with inches of his face with out warning scared him and he spent the last ten minutes fighting back tears, They had to re-do it and that scared him more, But they put him in the new machine,which dosent move so close, blocked his head, and he didnt flinch........My advice to any parents out there is have them use new machine and block the head-MJP

Day 2
Today was a off day at the hospital, no tests or appointments. Tomorrow is house keeping day, maybe a little shopping for essentials......Mike

Day 4
Today was a busy day, we had a MRI, 2nd half of spect scan, TCD (transcranial Doppler). we then met with Dr. Steinberg. He will be doing the right side 1st. Roberts first surgery is scheduled to start at 0730 tomorrow( thats cali time) he will then spend the night in ICU after the 5-8 hour procedure. The MRI was easy, the spectscan was the second 1/2 (robert was a bit fidegety.........maybe to much sugar...lol) came through it fine..The TCD was the best of them all, the mri and spect did require a IV for contrast and tracers)..................will try and post tomorrow , I make no promises as it will be a long day......................mike

Day 5
ROBERT IS OUT OF HIS 1ST SURGERY
............. Dr. Steinberg came out to see us, he said he was able to do the direct by-pass and it immedately doubled his blood flow to the right side of the brain. His eeg never changed during surgery which was a positive sign for no stroke or damage to the brain during surgery. This day was made easier by the fact that Robert was so brave this morning and never broke down, that made it so much better for Julie and I. We will be able to see him in about a hour. One side down, one side to go............ I will post again this evening-mjp

2130 pacific time

Robert is doing great all motor skills seem to be intact wiggling toes and finger arms and legs, talking joking, etc. wont let me take his picture though...says he dont feel up to a picture. He is still abit nauseated, but thats to be expected with no food since 1030 last night and a pile of drugs being pushed though his 4 iv lines. swelling is present but not yet as bad as I expected will have to see tomorrow how bad it is..........MJP

DAY 6

0530- Robert had a rough night between the nausea and the pain, He appears to be getting over the nausea albeit slowly. Keep reminding myself that he was under for between 6-7 hours and still has had nothing to eat 32 hours and counting. The nurses in Ped-ICU are great. His pain has been just a nag hovering around a 5 on a scale of 1 to 10. All neorus are in tact he is sounding stronger, and looking better. swelling has gotten worse with the eye starting to blacken, However still only about half as bad as I expected. will post pics soon-mjp

0930 Robert had about 15 mintutes of stomach pain at the level of 7 out of 10. Turns out his cathader was causing the bladder to spasm and he had pressure in his stomach, they removed the cath and within minutes robert had to peeee. Pain is gone, vomiting has subsided to nothing swell still under control. We will be moving out of ped-ICU to the three floor with a hour.....Roberts been playing game boy, and watching cartoons. the next paragraph is from him........MJP

Hi Everyone, 1st surgery went OK, just had a little pain, and puked a little bit. Thank you for all the cards and the posts on the web site-----Robert


1700 Pacific time- we made it to roberts room finally, I think they we waiting to dischare to make room for him. We are on the 3rd floor robert is doing well down to 2 iv lines, his bp o2 monitors and a heart monitor.....he is now eating solid foods and able towalk around........all doctors and visitors are amazed at his recovery.-mike

Day 7

48 hours post-op Robert continues to do well he is gaining strenght back quickly and is looking quite well for the procedure that was done. If he continues to do so well and his MRI later this afternoon goes well, we may be out of here for the weekend tomorrow. Then back on Tuesday for the other side-mjp

Day 8

Today, has been a very good day, Robert is relaxing in the Hotel Room, and is gaining strength back. We go back to the Hospital on Tuesday for the second surgery, from all reports this will be the longer recovery of the 2 (2 major Trauma's in a week) - MJP

Day 10

Sorry didnt post yesterday, all is well robert is able to be active for a few hours but then is just whipped and needs to lay doiwn for about 4 hours to get color back needless to say its been a long couple days in the room He is his normal self just extremely tired--anyhow will post more later-mjp

PM-Robert is more is normal self.............wont stop talking(lol). I think he is going a bit stir crazy, from being in the motel so long, maybe tomorrow we will be able to venture out a little bit, and have him burn off some energy-In the mean time he got his mohawk today, Take a look at the pictures- www.caringbridge.org/visit/robertpettit

Day 12

Hello, diddnt post yesterdayas we were spending time with Robert got him out for a while to burn off some excess energy, Today he is back in the Hospital for his 2nd surgery, he went in to OR about a hour ago should be between a 5-8 hour procedure again then back to Ped ICU for the night then to the 3rd floor rooms will post as sonn as we here results-Mike

ROBERT IS OUT OF HIS SECOND SURGERY


1633 Update  the surgery went faster then before with Dr. Steinberg startling us at 1211 with the news that the surgery went well no wavers in the EEG no heart problems etc. Appeaqrently The blood on Roberts left brain was actually flowing backwards from the veins (used blood) into the carotid artery. Which is the oppisite of how it should be (Cartiod to veins). I have not yet been able to find out what would be a normal flow score, but Dr. Steinberg said he was at -11 prior to surgery with a +15  I am vastly aware of how luckyt we are to have such a successful outcome and  the bullet we dodged with the delays in diagnoisses. I have seen Robert he is doing well all neuros are intact, he is talking fine although is extremely droggy. he is ready to eat candy....Nurses wont let him , The Hospital puts on quite the trick or treat for the kids with it covering all 4 floors and nurses and parents making the rounds for those who cant, I also noticed they had brand new costumes at the door for kids that came to the hospital without a costume. Thanks to all the cards, care packages, posts and warm wishes we have received it has made it all so much easier for Robert and Us-MJP

Mike

Running out of space scroll down til reply of 11/1/2206 for rest of journal
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« Last Edit: Nov 1st, 2006 at 10:25pm by Islandentity »  

BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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janicetedd
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #1 - Oct 18th, 2006 at 10:22pm
 
Mike

God Bless you and Robert.  Keep us posted.

Janice
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Islandentity
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My son Robert has MM

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Roberts Stanford tests/Surgery/ and Recovery
Reply #2 - Oct 25th, 2006 at 12:32am
 
OK just posted day 5 up above
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lotsofkids
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #3 - Oct 26th, 2006 at 11:31am
 
Thank God all went well!

I am relieved to hear the news.

Wishing the second surgery goes as smoothly as the first. He is a brave trooper. Please tell him I have him in my thoughts and prayers.

smiles....diane
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Hmmm....seems I'm kinda "special" LOL
 
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Mar
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #4 - Oct 26th, 2006 at 8:11pm
 
Hi Mike,

I’m so tickled all went well with Robert’s 1st surgery. Our prayers were answered once again. Tell him how proud we are of him and how very brave he is. He deserves a big atta boy and lots of hugs. Smiley That’s one down and one to go. Tell him to hang in there and before he knows it, it’ll all be behind him.

Our continued prayers. Hang in there too Mom & Dad!

Mar
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elaine
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #5 - Oct 26th, 2006 at 9:34pm
 
Hi Mike and Robert Cheesy Glad everything has went sooooo well for you,,,,,,,GOD-BLESS YOU------You are in my Prayers,,,,,,,,,,,,,,,,,,,,,,,,,


     Elaine Calvert
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Elaine
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jnokes
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #6 - Oct 27th, 2006 at 11:36am
 
Hello.I am so happy to hear that Robert's 1st surgery went so smoothly and that he is making a quick recovery.Hope everything goes as smoothly with the 2nd surgery.You and your family are in our thoughts and prayers.Hang in there and this will all be over with before you know it.

Jennifer(Paige's Mom)
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STrantas
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #7 - Oct 30th, 2006 at 10:03am
 
Glad to hear Robert is doing so well!  Keep up the good healing work, Robert!  Sending hugs Smiley from Philly!

-Shari
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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #8 - Nov 1st, 2006 at 11:57am
 
Excellent job Robert! What a strong little boy, it makes me so happy to here both surgerys went well, before you know it you will be home and it will be all over and back to normal. Congrats on everything going so well.
                          Nancy Smiley
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Greg-NJ1
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in 2005, arterial restricion

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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #9 - Nov 1st, 2006 at 8:09pm
 
Way to go Robert.  Congratulation from NJ. I'm glad to hear that everything went well.

Greg and Olga
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I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.
 
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Islandentity
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My son Robert has MM

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Drummond Island, USA, usa, 387, 60, MI, Michigan
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #10 - Nov 1st, 2006 at 10:22pm
 
Sorry ran out of room on other post so starting a new one

Day 13

Robert made it through the nigh with minimal problems, he is such a brave boy, The swelling is worse this time but still not as bad as we expexted. He only had 2 doses of pain meds. And although he felt like he was gonna get sick several times he had no wrecthing or heaving, He is eating jello now and expecting to have several of the IV's pulled shortly We are expecting a MRI today or tomorrow after we get switcheed to a regular room, I dont know if we have been that lucky or if all the staff here is that great but all of hIS NURSES TO DATE HAVE JUST BEEN EXCELLENT. wILL POSTAGIN LATER AND TRY TO GET HIS PICS UP.......sorry not yelling just fat fingers........Mike

1900 pacific time, Robert made it out of the ICU and to a regular Room today, He is just whipped, the second surgery really took his strenght away, I dont mean that as being a problem, but rather 2 surgeries in a week has just wore him out, also the steriods (for swelling are keeping him awake so he dont sleep well at long. All in all his is doing well have a MRI tonight at 2130 to check for leaks(precautionary). Dr Steinberg already said earlier that we wont be going home in 2 days this time, and once we do get discharged he will want to see us the following friday for a follow-upThanks every one for everything-MJP

Posted a story under jibber jabber today felt is was appropiate, please take a minute to read

Day 14

Well robert has his energy back...LOL, he is full of it today laughing and Joking, He is doing very well and The attending says its ultimately up to Dr. Steinberg but everything is looking like we get discharged tomorrow. Sorry it took so long to post the 2nd surgery pictures but there are up now............Take care Mike

1805 Pacific Robert is doing very well, he is active and full of pent up energy, Dr. Steinberg said the MRI cameback fine with no leaks or sign of stroke from the procedure, There was a few minutes of concern with the attending dr. and nurse. Seems the nurse wanted to get Robert a walker because of his limp, The attending didnt now anything about the limp and was immeadatley thinking stroke, We resolved the issue by letting them both know that once the IV was out of Roberts foot, there would be no limp......LOL...Still appears as we are out of here tomorrow........MJP

Day 16

Robert got discharged from the hospital yesterday, he is doing well, although he is more tired there seems to be less dizziness and headaches then with the frist surgery. We couldnt be happier with the outcome of the surgery as well as the recovery process to date....everything is looking positive. We will have a follow up next week to get the all clear as to when we can leave for Home-MJP

Day 18
We have made the move to a condo donated by one of our angels on the Island. Its near Napa and will make a very Nice place for Robert to recover while waiting for the all clear to head home ..................although this is a very nice place .........we are ready to come home, we miss the Island and all of our freinds- Robert continues to do well has had no symptoms of the type he had before surgery, He does maybe once every couple days complain of being Dizzy or a weird sensation in the top of his head. according to the doctors this is common in patients with this type of surgery and may very well be a result of the increase in oxygen and blood getting to the brain and should subside over the next couple weeks however it does sometimes happen for months-MJP

November 11th,

I have lost track of days.......LOL

sorry havnt posted was having trouble with internet connection, Robert has been cleared to fly on Monday, He continues to do well is off his steroids and zantac, He continues to take one baby asprin a day. He is visable getting stronger by the day. should be home on Tuesday-MJP






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« Last Edit: Nov 11th, 2006 at 10:05pm by Islandentity »  

BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin
 
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lotsofkids
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #11 - Nov 2nd, 2006 at 3:08am
 
So glad the second surgery also went well and Robert is faring as he should. This is pretty tough stuff!

I too had negative blood flow. I was neg 3 on my right and after surgery went to a positive 18.

On my left side, I was a negative 13 and after surgery went to a postive 54! Dr Steinburg wanted a higher pressure on my left side, as that is my dominate side. I asked what was the pressure ranges and they said it can be any range (??) so I guess the doc decides what is best for the graft and the patient as to the flow.

He did say a neg 13 was very significant....so if Robert had a neg 11....well that was right up there!!!

Hope all the family is doing well.....

PS: how did the hotel turn out?

warm wishes....diane : )
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Hmmm....seems I'm kinda "special" LOL
 
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lotsofkids
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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
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Re: Roberts Stanford tests/Surgery/ and Recovery
Reply #12 - Nov 2nd, 2006 at 3:29am
 
Just went to the site: http://www.caringbridge.org/  
~~ click/visit a CaringBridge site/enter:   robertpettit ~~

tell Robert his MOHAWK looks awesome!


PS: your link was acting funny (?)...so I relisted it above.

smiles....diane : )
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« Last Edit: Nov 2nd, 2006 at 3:31am by lotsofkids »  

Hmmm....seems I'm kinda "special" LOL
 
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