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Discussion Starter · #1 · (Edited)
update 8-6-2011: They placed a drainage tube and he is on antibiotics and if all goes well will be coming home Monday.. :pray:
update 8-5-2011: Folks, I just found out they r shipping SCOOTER to PITT, please pray for him!

Hey fellow 109'ers!! I am throwing out a special request for my 11 month old nephew, Daniel (AKA.. SCOOTER) ...he is out in Childrens hospital in Pittsburgh and is being prepped for a liver transplant as of now 8PM EDT. He is in the OR now and the surgery has begun, it is going to be a long night for all involved ..

Donations can be sent to my paypal account, Thank you in advance. [email protected]

UPDATED ... 5-31-2011 ...
Tomorrow Daniel will get his last transplant related surgery. They are going to close all of his abdominal muscles. They only closed his skin before because the liver he received was a little big. This surgery is known to be very painful. Since the prayers from you all have been answered in the past, I ask that you pray for an easy surgery and that he can heal quickly, with as little pain as possible.


UPDATED ... 5-8-2011 ...
New picture of Daniel and myself and he will be going through hopefully his final surgery the end of May. Abdominal muscles to be stitched back together.



UPDATED ... 4-11-2011 ....
Daniel has had his feeding tube removed, He has a few bouts of illness, common cold type stuff. He is walking on his own, to the Dr.s amazement since he still needs to have his abdominal muscles stitched back together. That surgery will be later this year.


UPDATED: ... 1-05-2011 ... 9:00AM
Daniel had a f/up with Pitt yesterday. They dropped 2 meds, one being the injection he gets 2x daily and the other is his steroid!! They also decreased 2 other meds. He gained 2 lbs 13 oz, in 6 weeks!! Working on getting rid of feeding tube, should be gone in about 2 months!! All in all he is doing really well!!


UPDATED: ... 1-01-11 ... 11.45PM
Daniel is doing good.. he did have a few visits to the ER... cough and low grade fever...
I still am taking donations for him and also a foundation that helps people in need,
http://www.walkonfoundation.com/1.html


UPDATED: ... 11-30-2010 ... 4:00PM
Daniel had his 2 wk appt in Pitt 11-29-2010. He gained over a pound and is now tipping the scale at 20 lbs!!! They are happy with everything, however labs are still pending. Next appt is not until 1/3/2011!!!


UPDATE: 11-17-2010 ... 7:45PM
:2excited::2excited::2excited::2excited::2excited::2excited::2excited:
Did I mention that I am excited?
Daniel aka Scooter is HOME
, :super:

UPDATE: 11-11-2010 ... 9:00PM...
Today was Daniel's first day of outpatient PT and OT. PT went really well, he lasted the whole hour with tons of cooperation and smiles. They were inpressed with all that he was able to do. They will work on his crawling and standing, and sitting from a laying down position. OT didn't go so well, he was too tired to cooperate. Hopefully next appt will be better.


UPDATE: 11-08-2010... 3:00PM ...
Things went well at clinic. They are not going to change anything. He gained a pound and this bilirubin is 0.2, an all time low!!!
:clap2:

UPDATE: 11-3-2010 .... 6:30PM ...
So, Apparently the Drs. only want to see Daniel and get labs once a week now. Which is a surprise, since we were only discharged a week ago. I do however, have to take him over to the clinic daily just to get a quick blood pressure check though. Labs continue to look good.
Daniel had his stitches
taken out today!!! For now all meds are staying the same. Could
possibly have some changes after we get the labs back later today. Can't believe we are 6 weeks post transplant!!! It has only been 4 weeks since they fully closed the incision, but it is healing really well!!!
We survived our first week out of the hospital. Dropped 3 meds this week. I have been able to start giving him normal baths.....which he LOVES!!! I have his meds down to a science now, except for the injection (blood thinner) that i have to give him 2x a day :-( Appts mon and thurs with Drs, so we will see what they have to say. They are still very pleased with everything

UPDATE: 10-31-2010 .... 3:30PM ....
Just to let everyone know, I got to hold *SCOOTER* today, and I am doing the happy dance and flying higher then ever....oh and I got pictures too!!!
Update from Daniels aka SCOOTER's Mom...
We survived our first week out of the hospital. Dropped 3 meds this week. I have been able to start giving him normal baths.....which he LOVES!!! I have his meds down to a science now, except for the injection (blood thinner) that i have to give him 2x a day :-( Appts mon and thurs with Drs, so we will see what they have to say. They are still very pleased with everything.


UPDATE: 10-24-2010 ... 2:30PM
Daniel was discharged from the hospital to the Ronald McDonald house . Trying to get in a whole new routine with his meds and sleep. Gonna take some time, but they will get there!!!


UPDATE: 10-12-2010 ... 5:00PM ...
Daniel ... aka Scooter was out in about in a wagon , Mom thinks this will be a regular routine with him... wow wonder if a little bit of Uncle Layne is wearing off on him, got to be out wheeling around? :)
I would like to ask you at this time to send my nephew a very happy birthday wish and prayers. He will be 1 year old on October 15, 2010. He is currently in Pittsburghs Children's Hospital , he recently has undergone a liver transplant.. here is a link to send wishes and prayers..
http://www.facebook.com/pages/Prayers-for-Daniel/139441066099564?v=wall


UPDATE: 10-11-10 .. 7:30PM Most recent picture taken today....

UPDATE: 10-11-10 ... 3:00PM
Well, they are one step close to going home. Daniel was transferred out of the PICU to a regular unit. Drs. are still very happy with his progress.

UPDATE: 10-10-10 ... 10:15PM....
sorry for not updating this on a regular basis, I / We do really love this little guy...if you fell the need to contact me please do, as a member on here has done to bring this to my attention that i have not updated lately.. Thanks BRO...(you know who you are)
BEST DAY EVER!!! Daniel is off the breathing vent. He has smiled quite a bit with no effort on my part!! They also took out his foley cath. Bilirubin is .4. ...they are also planning on taking the central line from his neck and his NG tube from surgery. :-D


I would like to at this time ask if anyone out there would like to donate to help my / this family out , please contact me, as you may know with a surgery like this bills add up quickly, Daniels , Mom is staying there with him while my Brother (Dad) must drive back and forth round trip of over 8 hours. so anything you could give to them threw donations would be greatly appreciated, contact me to donate, THANKS

UPDATE 9-29-2010 ... 6:30PM...
Daniel is doing well. For the first time, really no new news to report :) They plan on taking him back to the O.R on Fri to close up incision. If that is the case over the weekend they will start to let him move a little more and start to ween him off the breathing machine.


UPDATE 9-28-2010 ... 6:40PM ...
Dr.s say he is doing good. U/s and LFTs are good. They saw some white spots under the mesh today that they cultured. They think that they are remnant from the fluid that was in his belly on Sunday. With all the fold that are in the intestines, it is very difficult to have his belly be sterile after a washout. They are not concerned, they just want to make sure he is on the right meds.


UPDATE: 9-27-2010 ... 2:45PM
this is from 9-26-2010... Daniel is doing well. Having some trouble with his left lung again, but drs aren't concerned. He is getting some new lung treatments today so hopefully that will help. LFT's are still coming down
later in the day ... when they were changing his dressing, they noticed yellow fluid in his belly that they think is coming from his bowel. They are going to take him back to the OR around 5-ish, for another wash out and a look around. I think he likes the scrub nurses a little too much and he wants to go back and visit them. They r not concerned, labs and vitals are normal.
a little later ... Things went well in the OR, they were able to wash him out and did not find any areas that needed repaired. They are watching the flow in his one artery to his liver, the flow has decreased a little. they are changing some meds and will following him with u/s in the morning.
And now for today 9-27-2010 ...
Daniel had decreased blood flow in the artery going to his liver, so yet again he went to the OR trhis morning(i think he likes it in there, maybe he'll become a surgeon!!!) they didn't find anything concerning. They injected clot dissolving meds into the vessel, incase there was a clot. They clamped of an "axillary" vessel to the spleen to increase the pressure to the liver. They think all will be ok.


UPDATE: 9-23-2010 ... 11:45PM...
Daniel had a trip back to the OR this morning. He had small hole in his intestine, caused by first surg, that they repaired. His LFT's had a little spike this morning so they did a biopsy too. They think that spike was b/c of the leaking fluid. But they did say that on his u/s this morning that his blood flow looked "beautiful". The Dr.s here are great. We will get biopsy results today. Chest xray looks better too......
Biopsy results are back, no signs of rejection. LFT's are back down to where they were last night. Bilirubin is 1.4, the lowest he has ever been. Today's u/s was normal!!!! An eventful day with great results!!!


UPDATE: 9-22-2010: ... 4PM:
Today's ultrasound was normal!!!! Also when they did the bronchoscopy (used camera to look in his lungs). they were able to remove mucous that was blocking the left lung. Drs. eager to see the chest x-ray at 4. Today continues to be a good day


UPDATE: 9-21-2010: . 7PM
Daniel is doing really. His left lung is slightly collapsed, most likely caused by the positioning of the breathing tube, which they have adjusted and things are looking better.They were'nt able to close the incision b/c of swelling (which is normal), it is covered with mesh. They are hoping to go back in on fri and close. His u/s today showed good blood flow in the liver. His color is much less yellow if any.

Update 9-21-2010 , 8:20AM .....
Surgery is complete. Drs said that everything went well and that he looks good. The liver is already producing bile. Thank you so very much for all the prayers, love, and support.


http://www.facebook.com/pages/Prayers-for-Daniel/139441066099564?ref=ts

 

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Thoughts and prayers to you and your entire family!

I went through something similar when my now 7 yr old had to go through open heart surgery @ 8 days old. Scary times, but the good lord is always watching and taking care of you.
 

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Prayers sent for Scooter and family. Please keep us updated as you can bro, it's heart wrenching to see a little guy like that going through this.
 

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Discussion Starter · #8 ·
update. they are slowly removing his liver, we only get updates once every hour plus. His parents are there, my wife said to me fire up the gps we are going, my brother asked us not to come out right now, so we sit and wait for the updates, if anyone is close and would like to stop and give them support, let me know.
 

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Prayers out to all involved. Such a cute lil guy!!
 

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I will ask for this little boy to be blessed.

I had a nephew go through the same thing a few years ago and he is doing great.

I'm sure he will do fine. Prayers from Arkansas.
 

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Much love from New Mexico
 

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Thoughts and prayers from all in New Zealand.
Lets hope for a speedy recovery.:bigthumbsup:
 

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Prayers have been sent up!!!

My prayers have been sent up for this child and everyone connected to him.

God bless!!!
 

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Its always hard to see someone so young, having to go through something so major. Best wishes for a speedy recovery from Canada!
 

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Discussion Starter · #20 ·
Update 9-21-2010 , 8:20AM .....
Surgery is complete. Drs said that everything went well and that he looks good. The liver is already producing bile. Thank you so very much for all the prayers, love, and support.
 
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