Baby phaser!

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Originally Posted by 2long4u

Ian, we have the exact same Kangaroo joey pump. He gets all his meds through the NG and he gets his milk from the pump when he is too tired to get it by mouth. He is on 6 different meds now. When he was in the ICU at one point he had 10 pumps!

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2long4u,

Since Mitchell was a kidney patient, fluid intake was very important, naturally. However, the pumping got to insane levels. As he grew out of his toddler years, we naturally went to whole milk. He was downing two liters of milk every 24 hours at five years old, plus his medicine and that was outside of regular food. Of course, like any other kid, he liked his McDonalds nuggets, fruit juice and milkshakes. The poor kid was so pumped up with fluid that it was insane.

At six, we removed the NG tube and went to a G-tube button surgically implanted in his tummy via abdomen. At eight, we removed it because it was time to trust the kid to drink enough on his own.

I hate to sound like an idiot, but is this pump you speak of used to feed the children food via a tube directly into their stomaches? Any particular reason why Mitchell needed to be pumped full of liquids? Kidneys required a high-flow b/c of the transplant or something? Just curious :)

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Originally Posted by [XC] gomeler

I hate to sound like an idiot, but is this pump you speak of used to feed the children food via a tube directly into their stomaches? Any particular reason why Mitchell needed to be pumped full of liquids? Kidneys required a high-flow b/c of the transplant or something? Just curious :)

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Respectfully, I have to keep 2long4u positively motivated, so I won't go into a whole lot of detail.

Think of a 32 week old pre-mature baby that is 6-1/2 pounds (he would have been 10-1/2 pounds at full size). Small right?

Think of a 108 pound 5 foot two inch woman (my wife). Think of her right kidney removed and placed into the baby's body.

Each of Mitchell's kidneys were actually about twice the size of an adult's. Very large. Very useless. They were pushing up on his diaphram and so he couldn't breathe properly. His body was fighting hard to breathe at birth and therefore his BP was sky high. Anyway.

What is a kidney? It is a filter of impurities. It works like a sponge. Purified blood passes through, nuitrition is absorbed, etc. Kidneys need to be hydrated. Think of a dry sponge. Not very useful, right? Kidneys get damaged if they dry out.

As a boy grows, his body grews enough to conform to the capacity of a transplanted adult kidney. However, until the boy reaches a certain age, you will have a big kidney in a small boy, which makes it all the more important to keep it hydrated. Also, as you don't have much ability to absord important nuitrition, like vitamins, calcium for strong bones, potassium, etc. All the more important to pump up the boy in terms of nuitrition.

What if there were a lot of impurities in the blood? The body gets contaminated. Another way to say it is.. poisoned. The heart wouldn't work so well.

In Mitchell's case, kids with kidney issues are usually stunted. Example is Gary Coleman. We pumped Mitchell in every possible way. He's a baseball pro's dream. He gets Epogen and Aranesq for increased red blood cell growth. He gets Nutropin growth hormones. He gets fed well. He gets pumped up. Accounting for Mitchell's part Asian ethnicity (from me), Mitchell is on track to become tall enough.. about 6 feet even is the current estimation. Otherwise, if we had done nothing at all, Mitchell would probably be about 5 foot 2 inches or around there.

As for as the NG tube, its a Nasal Gastric tube. It gets inserted through the nose down into the stomach. Special care is taken that the NG tube is not placed down the windpipe, or the lungs will get flooded and the kid will choke to death. Serious stuff.

When it gets to the Gastro Intestinal tube, which Caleb will not need, it gets more serious. You cut under the skin, you cut into the stomach lining and you surgically implant a GI tube. Anything you feed gets on the express track into the tummy, then into the small and then the large intestines. Any meds you give through the GT tube kicks in pretty quickly.

Every kid is different. Mitchell did not have cardio-vascular surgery, which is highly risky and serious. However, transplanting kidneys and livers isn't exactly child's play. You still have the same arterial/aorta issues. The same BP issues. etc.

I have a degenerative kidney disease called IgA. It is where my body is slowly breaking down my kidneys. I found this out when I failed the piss test for FedEx ( I had blood and protein in my urine ). The kidney problem is causing high blood pressure whick in turn causes kidney damage. The only thing I can do is to keep my BP in check. My Dr. says 10 or 20 years down the road I will need dialysis or a transplant.

If we don't get him to feed by mouth in about 2 months they will put a G-tube in. From what we heard from the support group is from everyone that had to have a G-tube said it was a good thing.

We have him on a high calorie diet to bulk him up before the next surgery. He is on Captopril for his blood pressure (it reduces the load on the heart), and Lasix which is a diuretic that keeps his kidneys functioning. When we were in the ICU right after his surgery his blood pressure was soo low his kidneys couldn't filter. IIRC they were putting about 50 mil's into his body and he wasn't getting rid of it. If you look at the pic with his chest open you will see that he was really puffy.

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Originally Posted by 2long4u

Pete, what is crimbo, and we already have a MAPP torch!!

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Xmas, Christmass, Santa etc etc

That his present then the MAPP tourch, LOL

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Each of Mitchell's kidneys were actually about twice the size of an adult's. Very large. Very useless. They were pushing up on his diaphram and so he couldn't breathe properly. His body was fighting hard to breathe at birth and therefore his BP was sky high. Anyway.

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"Airflow restriction is one common cause for excessive high side pressure." :)

Well wish us luck again. We just got a phone call from UCSF, and we need to be there on Monday for a test, and the surgery will be on Wednesday. The second procedure is the glen.
Here is some info on it. http://www.ctsnet.org/sections/clini...rt_tech-6.html

Good luck to your son, your family, and you. The love in your family can go a long way and I hope it pulls you through this rough spot.

Good luck from me to! Hope he gets as strong as a scroll compressor :up: .
Its hard to find the right words for me, because of my english... (to keep it simple) : I hope everything goes fine!

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Originally Posted by Moc

Its hard to find the right words for me, because of my english... (to keep it simple) : I hope everything goes fine!

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I think all of the German cooling community thinks like moc

I hope for you only the best

I hope for the best! Go get em little guy. After reading that link I feel like I could rebuild a heart myself with a butter knife and some fishing line :eek:

Sheesh man. Hope the best of luck to you. Please keep us updated. I am so glad the little fighter has been doing so strong so far. im sure he will keep pushing along.

regards

Good luck 2long4u to you and the kid. Been a dad since 8 months myself but I can't imagine going through what you're going through.

Can't say much more, my thoughts are with you :)

Well durring his cath lab they found out they had to balloon his aorta. Doing that can create lesions that need to heal before they perform the surgery. He had a few rough days where his o2 saturation was dropping so he had to be put on o2. He recovered very quickly and is home now. He is scheduled for surgery on the 25 of March.

When we were at UCSF last time for the norwood precedure there was another baby boy that came into the ICU a few days after us. His name was Caleb also. He had a similar if not the same condition as my Caleb. When my wife was there this week he passed away. He never left the ICU, and would have been arould 4 months old. :(

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Originally Posted by [XC] 2long4u

Well durring his cath lab they found out they had to balloon his aorta. Doing that can create lesions that need to heal before they perform the surgery. He had a few rough days where his o2 saturation was dropping so he had to be put on o2. He recovered very quickly and is home now. He is scheduled for surgery on the 25 of March.

When we were at UCSF last time for the norwood precedure there was another baby boy that came into the ICU a few days after us. His name was Caleb also. He had a similar if not the same condition as my Caleb. When my wife was there this week he passed away. He never left the ICU, and would have been arould 4 months old. :(

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Kinda brings it home what could happen loads more and really indepth.

I hope everything goes well dude, sounds like you have a fighter on your hands!

Well its about that time. He leaves for San Francisco tomorrow. I am sooo scared. It's harder the older he gets. Here is a couple pics taked on easter.
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Dude,

The inquzeative look, full color, baby lookig the little dude looks perfect to me and with what he is going through he is more amazing. How is he doing though, i really hope he is okay.

What about you and your partner? Both holding up?

I hate to dwell over it but this is amazing, it could of been so much worse and im so happy how well he is doing.

My thoughts are still with you guys

Pete

So far he's doing great. There is another boy in sacramento with the same thing and he couldn't eat without breaking a sweat. He had the feeding tube up till the 2nd surgery. After the surgery they put in a g-tube, and he is still on o2.
Every time I take him in to the Dr. for his checkup he asks me how he is doing and it seems like he is a normal baby. I guess he's blessed. :shrug:
I just think he is the cutest thing!

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Originally Posted by [XC] 2long4u

So far he's doing great. There is another boy in sacramento with the same thing and he couldn't eat without breaking a sweat. He had the feeding tube up till the 2nd surgery. After the surgery they put in a g-tube, and he is still on o2.
Every time I take him in to the Dr. for his checkup he asks me how he is doing and it seems like he is a normal baby. I guess he's blessed. :shrug:
I just think he is the cutest thing!

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I guess it's sort of comforting to know that it's not just your self's going through this and that others are too, though it's not nice seeing others suffer but it also is sorta rewarding at same time.

I can only guess and hope that normal is good, that has got to be better than having him being mega ill and needing all your time more than what a baby does anyway.

He is blessed, he's the baby phaser, by my own account of chatting to you here he has a totaly awsome dad, his got a hot mom and then he has all of us asking after him and wishing him the best. Let alone the fact he is bloody cute. I think once he is old enough get him here and user title ''Little Phaser Dude'' will be perfect.

He really looks like a Phaser :D
I wish you and especially him the best - and no more complications please :worship:

Aww he's a cutie! He's come a long way from those first few pictures in this thread :up: I hope his trip to San Francisco goes well, praying for your son and the medical team assisting him. Little kids are so funny, I always think they look like really old men, minus the wrinkles. I don't know how I see that in them :shrug:

I hope everything goes successful for you and your son 2long. Wow... I probably wouldnt be able to take anything like this happening to my children. You and Ian must be very strong people to be able to keep going after all of these scary procedures.

My hat goes off to you. :toast:

Is he still in San Fran?

He came home today!! We need to be careful picking him up again. He needs 5 more weeks for his sternum to heal. He won't be his normal self for a few days or weeks.
Now we need to get him back on his sleep schedule. Being at the hospital, the nurses bug him every 2 hours for vitals. I'll post some pics soon.

Well I was just reading the thread and I wanted to thank everybody for caring about my son and my family.
He is doing great although he has a little cold right now, and his nose is runny.
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