INFECTION AGAIN !!

Zachary has not been feeling good since yesterday… Very tired and puky..I brought him in for his pre-op for his surgery on Monday and he laid there like a rag doll… The Dr. did labs on Zachary and sure enough his CRP is elevated !! Not good.. Most likely his abscess is back ! The plan is to start him on his Antibiotic again for the 3rd time and on Monday he goes in for his surgery to see what is going on in his tummy, and why he is unable to fight off this nasty infection.

Thank you for all your thoughts and prayers,

UPDATE.. Surgery is Monday Morning at 9AM.. PLease pray for an easy fix , no infection and a fast recovery. The Drs. are not sure what they are all doing until they scope him out. I will keep everybody posted throughout the day.

Zachary is truly AMAZING !!!  Even being in Kidney Failure he seems to live life to the fullest !! He did take about a 2 hr nap yesterday..  and the rest of the day he ran NONE stop !!! The heat is making him a little more nausea..We have been playing lots of catch up trying to get enough fluids in him. The heat is sucking his fluids right out of him.” He loves to be out side” , but right now it is very dangerous for him.

The last couple of nights and has been waking up about every 2 hrs again.. “Up and down throughout the nights”. I think he has developed such a bad habit of knowing that I was always there right next to him for so many months.. When He wakes up he will Just “Yell my Name”  I come in, tell him every thing is ok, and Then I wait for about 5-10min and he falls right back to sleep. I know it’s just something we need to work through..

His abscess has been draining a lot more the last 2 days too. I am a little worried…. He is also done with his 2nd round of Antibiotics.  .”Which scares me !”  The Drs. want to see if the infection is going to come back or if his body his strong enough to fight it off this time. “I am a little hesitant” Last time 1 week later he started to get very tired and puky ..The infection was back. I just pray this time his body his stronger and can fight it off !!

I still don’t have a date for his next surgery to repair his Mitrofanoff and to scope his tummy. I will let you know as soon as I here something.

July 25 , 2010   We are Walking in the 2nd Annul HopeKids Walk !!

I challenge 20 people to donate $10.00 ! in Honor of Zachary or if you have a loved one that was effected by Kidney Diseases. We have  raised  $i65.00.00 !! Awesome !!
HopeKids is an AWESOME Organization that helps kids like Zachary with life Threatening illnesses. They have giving us life outside of the hospital worry free !!

They have fun events like movie premiers, Sporting events, Valley Fair, Air Show’s, Pizza Parties, and the list goes on and on… No medicine is better then having fun events plan weekly for these kids to keep them going !!

http://www.firstgiving.com/elsenpeter

Thank you for all your thoughts and prayers.. Please Pray for Zachary’s body to be strong enough to fight any infection that want’s to invade his body.

ZACHARY IS ALSO ON FACEBOOK !!

“SAVE ZACHARY ELSENPETER”

DONATE LIFE !!

After another long day at Mayo Hospital…
We did not get the answers that we wanted to here.. Zachary is very complicated and has a lot of different issues..”Yes we know”.

They do not have any magic treatment to help get his antibodies down. The type of rejection Zachary went into was the worst rejection you could have.. “Which is not good”.

The Neg.
-They have never delt with a child like Zachary with how high his antibodies are..
-They only do 5-10 Peds Kidney Transplants a yr.
-If he would go into rejection again, they will just let the kidney go.
-His biopsy of the kIDNEY is full of restricted vessels and lots of scare tissue.
-They would do no more Plasmapheresis or IVIG
-They would do nothing different than what the U OF M is doing..
-The Drive is long.. “Which I would drive across the world if I need to” !

Positive.
It’s beautiful !!
-Zachary would most likely not be a number, and they are more proactive on there care.
-Zachary’s GFR is 32%-35% !! Which is AWESOME !! That means that he still has a little Kidney function ! It gives us more time for his antibodies to hopefully come down and to find a Match. They usually Transplant at 20%-25%.
-They told us that 3 people that were tested for Zachary are very close matches !! If is Antibodies come down..”Even a little” ! PRAY ! PRAY ! PRAY!

We are not sure if they are willing to take him on with all of his care. We still need to do a” GI, Urology, Pulmonology, work up with the other Doctor’s.

Right now all we can do pray for his antibodies to come down, so we can successfully Transplant.

We are still not sure what we are going to do.. Wade and I have some big decisions to make about Zachary’s care over the next couple of weeks.

They will not guarantee anything..They did say that when and if he has another Kidney Transplant to prepare are selfs for a long roady Road.

Thank you for all your thoughts and prayers.. This is going to be a long road for our Zach-Man !! He has proven these Drs. wrong before.. He is a fighter and he will prove them wrong again !

You can find Zachary on face book

‘Save Zachary Elsenpeter”

http://www.facebook.com/pages/Save-Zachary-Elsenpeter/275300678444?ref=ts

FRIDAY UPDATE….

Zachary is feeling Awesome !! Ever since Zachary started his new Antibiotic Yesterday he is feeling great again…. The Dr called and his primary Dr is not on until next week. No Dr wants to touch him…

The Plan is to keep him on this Antibiotic and pray that he doesn’t get a fever. Last night he did have some puss come out of the Mitrofanoff area which is good. His Mitrofanoff site is red but not hard anymore. We like it when his tummy is soft.

Today he was full of life running and playing just like all little boys should. I brought the kids to Sand Creeks Carnival. Wow ! Zachary ran the whole time. He has been running all day none stop. Thinking about how that abscess was growing for 8 months and causing him to be so sick makes me feel sick ! We are so grateful for his health and all of his energy .

When I look at him now I think…”Wow ! He is on 29 meds, Had a Kidney Transplant, In kidney Failure and has had over 30 surgeries and still full of LIFE !” He is AMAZING !!

Now , we need to get his antibodies down so when the time comes we can find him a Hero !

Thank you for all your thoughts and prayers We are living LIFE !

THURSDAY UPDATE ….

I brought Zachary to the Dr. on Thursday…. Because his Mitrofanoff site was not looking so good. He has another abscess right above the old abscess. Being a Transplant Kid he is Immune Suppressed and his body is more susceptible to infection and it’s harder for him to heal. So they started him on another antibiotic. We are going to keep A very close eye on him for the next 2 days. If he runs a fever of 100.4 we are heading in for IV Antibiotics for 10 days.
Please pray for this antibiotic to heal the infection so he doesn’t have a repeat like last time.

Overall , He is still doing great !! He played outside all afternoon with Austin.
Zachary didn’t think he needed a swim suit. LIVING LIFE !!

Thank you for all your thoughts and prayers.

After a very long day, down at Mayo Hospital we finally got home at 9pm.

We had a very long talk with the Peds Transplant Kidney Doctor. After going over all of his Medical and everything that Zachary has been through the Dr was unable to talk about what to do next, or if they will even take him on.

Zachary is very complicated and they feel that they want to do a full work up on him next Friday with there Lab machines, ultrasounds and x-rays. After they do there work-up then we will sit down with there Transplant team and see if they will even take him on. They have never delt with a child his age with his high Antibodies.

I am a little worry because he would not even discuss what treatments they have or if they will even take him on. He said lets do a work up and see what we find.

I did like on how he was very worried about his kidney function, how HIGH his blood pressures are and he did NOT like that he gets reoccurring Aspirating Pneumonia. He did say that some changes would have to happen. I like changes …I just want Zachary to feel better and live life like a little boy should.

I am very anxious for next Friday…. I just pray that they can come up with a plan and hopefully take him on.

They also drew Wade’s labs to see how close of a cross match he was to Zachary  for his 1st transplant. They want to see if Wade was maybe not the best possible match for Zachary’s for his  1st Transplant. Interesting….We are all trying to figure out why Zachary rejected, and we all want answers.

After a long day …We stopped and ate Hot Dogs at a little Hot Dog shop…Very Good food

Thank you for all your thoughts and prayers