I am 3 years old. I was born with unhealthy organs. I had to get new ones so that I could live. They gave me new ones 3 weeks ago, new heart, liver, and both lungs.
I am in the hospital with my parents, their online nicknames are jst-me and kytcat. I am the luckiest boy ever...not only did I get the new organs so I could live, but I have the best mommie and daddy a little boy could ever want.
They are
always with me...so they can't work so that they can have
money. I wish they had money just for little things like
eating while here at the hospital, they already have so
much stress worrying about me.
Hi how are things there. Fine here. P-nut's doing pretty good. He is off the ventilator and breathing on his own. No major problems yet. A few little ones though. Still in PICU.
Thanx for the e-mail, Brendon is doing fine, still improving each and every day.
Can not check e-mail over the week end after 4:30 today because the computer is in the library and is closed during the weekend. I will answer all e-mail on Monday.
Thanx again for all the thought and prayer's, If ya want to send P-nut a card the address is:
Then on the bottom corner of the envelope put (PICU) Brendon Ednie
Some asked of how to donate funds ect..., I will let ya'll know more about that on Monday.
Thanx for all the e-mail and concern, It is greatly appreciated. Hopefully by the beginning of next week, he will be moved to his room on the 7th floor.
Sincerely, Jst-Me (Bryon) KytCat (Rebecca) P-nut(Brendon)
P.S. feel free to pass this address on to others who
want it.
Hi to all thanks for all the thoughts and prayers. We surely do need them.
Brendon is doing great started him on clear liquids today (a little watered down apple juice). Hopefully something a little stronger tomorrow. They have removed all his drainage tubes by the last weekend and today they are going to remove the arterial I.V. in his arm.
Hopefully by tomorrow he will be on the 7th floor out of PICU and in his own room.
Thursday the are going to do a lung biopsy and a heart catherization, hopefully they will show no signs of rejection.
Rebecca and I are holding up great were just surprised on how well things have been going. It is almost a scary thought on how well.
About all we do is be with Brendon (more when he gets his own room) is sleeping and eating. I'll probably gain about 25 Lbs here.
Well gotta go, oh yeah, some asked the mailing address here it is:
If we move rooms it will find us.
Once again thanx for all the support. Please feel free to share this address to all those who would want it.
Bryon (Jst-Me),
Rebecca (KytCat),
Brendon (P-Nut)
Thanx in advance for the package annd prayers. Brendon will love anything someone sends him during this time.
He was moved up to the 7th floor yesterday afternoon. He is enjoying his own tv and vcr as well as any Barney video we can come up with. I think Barney is going to drive me insane --like over the edge --funny farm time here---.
Only thing he has on him now is a central line, nasal cannula with 1/4 liter oxygen flowing and pace maker wires in case they for some reason have to regulate his heart.
He also recieves chest PT (percussion therapy) to bring all the mucus from his lungs up every two hours as well as insulin checks.
Talked to Pam today she has a cold right now and cannot come up today like she hoped and Lisa"s daughter I guess was hospitalized with a bad cold (note: was asthma).
We took P-Nut for a wagon ride yesterday around the floor, he has no restriction as long as it is kept to the 7th floor.
Whenever we went to take him back to his room he would yell out nooooo, riiideee. pr>The number for are room in the hospital is (412) 692-8169. His room number now is 7644 (7th floor room 44 -what the heck the 6 is for I don't know).
Still waiting to find out when the heart cath and lung biopsy is going to be though.
The goal for today is to get him out of bed and moving as much as possible. Well got to go, lots of nothing to do today.
Thanx once again for all the support and prayers.
Oh, yeah, they have him on a liquid diet restriction of 600cc a day but can eat all the solids food he wants. For him, though, it wasn't much ~ he ate before so its moving slowly but surely.
Bryon (Jst-Me),Rebecca (KytCat), Brendon (P-Nut)
Sherri, thanx for the books and that wonderful bear. We received it yesterday afternoon but did not get a chance to e-mail you then.
Brendon is back in PICU because he underwent a 6 hour surgery the other day. They had found infection in his peritoneal cavity and they had to go look for it and clean it out.
He is doing well so far I havent seen him yet today. We spent the night at the Ronald Mcdonald house for a change. I'll let you know later how he is doing.
Pam is supposed to stopping by at 10:30 today so I have to make this a short e-mail.
Also thanx for the money (until this little adventure, I did not understand the meaning of liquid assets) and the pictures were an added pleasure.
See ya around,
Bryon
Hi, how are you doing today. We are pretty good here. After that surgery everything was going fine until about 2 days ago he had a medication induced siezure. Everything turned out alright they think it was due to a high level of a drug that they are giving him it had been high all day long. Now it is back to normal.
I tried to e-mail you yesterday on a computer at the Ronald McDonald House, the manager let us use the computer there, right after I finished the letter I went to spell check and the time, the free trial ended so it didn't send the message. It took me awhile to get to my yahoo mail because they used AOL there and it took a while to figure it out.
Well, I am going home on the 16th this wed. On 4/15 I have to go pay bills and get back to work Rebecca will still be here until Brendon comes home and I will try to come up as often as possible.
The news release is 2 weeks behind schedule ,sometime around then I have to fly up on my weekend and deal with that.
I have to go now, thanx for all the help and prayers
Bryon
P-Nut is doing well according to rebecca. I came home last wed night.
He had been going through hyperbaric chamber treatment to open up his hepatic artery that seemed to have shut down --but today Rebecca said it had began to flow again so no more of that treatment.
Later this week he will under go a lung biopsy and tomorrow upper GI to look at his bowel resection that was done 2 weeks ago.
We still want to thank all those who have kept Brendon (p-nut) in their thoughts and prayers. It has really made a difference in his recovery.
Well this was a short one because I dont know all the details myself. Just passed down info from my wife. Nothing against her, but accuracy on medical things isn't her fortie.
Gotta get ready to go to sleep. 11 pm gets here too quick and I have to go to work.
Bryon
He seemed to be doing well today nurses started him on cleal liquids. Friday he was under so they could put a tube down to his small intestine for supplementary feedings and did a lung biopsy as well as a few more tests to which I will try to find out about the outcome to them tomorrow.
Brendon is doing ok. Doc said they will be trying to take out respirator today to see how he does. They have tried a few time past few days, but had to put him back on it. His Aterial line kept bleeding so they had to take it out yesterday.
Sorry not much info, but being back here in Florida kinda puts me in a dilemma for information to share.
My mom annd daughter are going up today to Pittsburgh to see them (Kyt and P-Nut).
Right now I am in the process of getting a new house. Closing should be in about 2 weeks, so right now, between that and packing ect.. I am keeping busy.
I am on my dads computer. He has a trialship on AOL it is a pain to figure out. Tried to get into chat but since it is a trial memebership, it is a lower (?) 3.0 you need 4.0 or higher to enter chat. But later tonight, when I am back on my webtv,(10-15), I shall return. Probably late, since my mom and daughter's flight doesn't leave until 8pm and then I have a 1 1/2 hr trip home.
Well gotta go, sorry to hear such a dilemma you are going through. I couldnt imagine celebrating (?) a son who has died 1st birthday. But I will not be with Brendon on his 3rd birthday this Friday, and that does somewhat get me depressed. Bryon (Jst-Me)
P-Nut went to his own room yesterday. He is off positive flow to his trachea to 40% oxygen inhaled as e breathes.
Next week will determine his time of getting out of the hospital. He is eating a little, but gaining weight. He is up sitting and playing, and is also waving hi to everyone. This is just a quick update for ya.
~BRYON~
Brendon was doing fine, he is still in his own room. But he has recently developed a fever of 101 and his white blood cells are starting to rise (usually a sign of infection).
They had to put him back on tube feedings to ensure his weight gain because he wasn't eating enough without the supplements.
I will hopefully be going up in 1st week Dec. They want me up there to learn the equipment he will be discharged with.
Hopefully this fever thing will not be another set back, we will not know for sure till later.
~BRYON~
12-6-98
I (serenzipity) spoke with Brendon's Mother over the weekend. She informed me that on December 4th Friday, Brendon's heart had stopped beating for one minute and required some action from the medical staff. I do not know how involved the maneuvers were to restart his heart. He did not require life support afterwards.
Brendon recieved a full work-up after his heart stopped, and no reason was found for his heart stopping. And, his heart has been beating on it's own since.
Brendon continues to require additional oxygen via his trachea tube in his throat. He was on 40% oxygen on the day that I talked with his mother. (Normal air has 21% oxygen) But, as parents of children requiring supplemental oxygen know, these percent rates of oxygen change daily and sometimes even every couple of hours.
Brendon does not have warm clothes while he is in Pittsburgh, as he is from Florida. His mother told me he is 24 pounds, and that the ICU nurses prefer button or snap down types of clothing to be able to get around the tubing. He is still at the address listed above.
I have recently chatted with Brendon's Father, who told me that Brendon had been transferred to a rehab hospital (good news...Praise God! ). And if Brendon continued in his remarkable recover that there will be talks regarding Brendon being transferred to a Florida hospital, where Brendon and his family live...again Praise God!
2-7-99
Well...I finally got to talk to both Brendon's parents on the phone while they were taking a lunch break in Ronald McDonald House where his mother has been staying and his daddy gets to visit when his busy schedule allows. Brendon's daddy has been busy setting up Brendon and his family's new home!
Here is Brendon's Update...he still has his trach tube to recieve oxygen...during the day, he is on 10% oxygen with blowby (that is not hooked directly to his trach...it is near it and blowing indirectly). At night he does require higher O2 because of being asleep. He is hooked up to a CPAP breathing machine. This is set to only breathe for him if he does not meet the prescibed breathes per minute...otherwise, he breathes on his own through the trach with the supplemental O2. The doctors are trying to wean Brendon's supplemental O2 as Brendon tolerates it.
He will be getting another lung biopsy in the upcoming week to test rejection. One of the rejection symptoms is that his bronchial tubes constrict/narrow at the connection site of his and his new lungs. They will titrate his rejection drugs based off of these biopsy results. It is best for transplant recipients to be on as low a dose of anti rejection drugs as possible so that they will not suffer from lowered immune system.
Brendon's cough has become much stronger and this allows him to force the accumulated secretions from his lungs much better, thereby decreasing the amount of suctioning that he requires to be able to exchange O2 and CO2.
Because of the CPAP breathing machine being rather large, Brendon's activities are limited to being in close proximity of his crib. Physical therapy comes in and places him on a mat in front of his crib for therapy and his parents play with him on this mat too. He does like to try to stand in his crib as well as on the mat.
He still LOVES Barney the purple Dinosaur and also has fell in LOVE with Teletubby too. The Telletubby Company read about Brendon and sent him his Telletubby present, which can be seen in Brendon's picture on the following link, and Telletubby also has a trach so he can be like his friend Brendon. Brendon loves to sing too.
There is a very good possiblity that Brendon may be discharged to a hospital closer to his home in Florida within the next 1-2 months if he continues with his miraculous recovery. This will certainly make things much easier on his family, allowing his father to be able to visit more often and also will be able to see his sister Rachal more often as well. Let's continue to pray for Brendon's recovery and that he will be allowed to be placed closer to his home and eventually be allowed to actually return home...(I did get goose pimples while writing this part!).
Brendon's father also told me that there is a baby in Australia that might have the same genetic disorder (Alliguiles...not sure I spelled correctly) and that once diagnosis is confirmed that the baby's parents are going to try to arrange a meeting with the doctors in Pittsburg PA USA to see about treatment and possibly having their baby placed on the transplant list...since the doctors in their area have told them that there is nothing that can be done for their baby in the area that they currently live in. How wonderful to hear that because of Brendon's story being published worldwide, a sick baby may have a chance to live. The baby's mother read about Brendon's symtoms from his condition and recognized most of them. She was quite instrumental in having her baby diagnosed from what I have heard from Bryon...Brendon's father.
To see the recent press releases along with a scanned newspaper photograph, go HERE
Dearest Almighty God in Heaven...We lift up our hearts to you in prayer for you to comfort the family of Brendon's Donor.
We pray to You to cast out Satan, for He will surely try to plant seeds of doubt into their souls.
I pray to You to send down your very special Heavenly Spirit to guard over and protect little Brendon, the Heavenly Spirit who gave the gift of life to Brendon, for their souls have truly been united by Your Grace.
Thank You Dear Lord For Hearing Our Prayers....Amen
