A day to take it all in….
The results that we got yesterday from Zachary’s biopsy is not what we wanted to here.. It was very hard and a emotional night. The nurses and staff up here have been wonderful and very supportive.

Zachary had a Awful night and day with lots of throwing up and coughing, his tummy has been getting very BIG.. we shut his J-tube feeds off at 11am because he started to throw up some green BIO and his farrel bag which is a continuous drain of his stomach was full of BIO too.

The DRS finally did an X-ray to see what is going on, thinking he has another bowel obstruction. Well the results are not a bowel obstruction. But the Drs. are very concerned because he still has a lot of barium in his intestine from a swallow study that he had almost three weeks ago…
Not good… That means that now his bowls have REALLY slowed down.. Tomorrow GI is coming in to hopefully come up with a plan.

The DRS also doubled his immunosuppression medications.. His Neroal, Immuran, and his Prednosone. they are worried that his body might go into Acute and Antibody rejection again.. right now Zachary’s body is under a lot of stress and his body will most likely try to attack this Kidney again. If that would happen Zacharys Kidney will not even have a chance..
But being on higher immunosuppression meds will also cause him to have high Blood Pressures again.. Which is not good…he is already maxed out on his BP meds..

Zachary is up 2 pounds from yesterday.. He is VERY swollen and his body has been very achy today..

Tomorrow we meet with some new DRS to come up with a plan for us to hopefully go home in the next couple of weeks depending on what Zachary’s body is going to do.

Thank you for all your thoughts and prayers.. Please pray for Luke and Dalton they are 2 little boys like Zachary who are also fighting rejection just like Zachary.

http://www.caringbridge.org/visit/lukeburton

http://www.caringbridge.org/visit/daltonserich

Stacey

Zachary has had a pretty good day.. His urine still has blood in it but has cleared up a lot. His tummy is still pretty big…. and from all the fluids he is getting he is up more in his weight. The DRS finally switched his formula to half of his old and the new stuff that his tummy is not tolerating. They would like to keep him on the Renal formula but Zachary’s tummy can’t handle it. So now they need to put him back on his Kaxalate which is a med to keep his potassium down.

The DRS came in tonight and told us the biopsy results…. Zachary’s kidney is not a healthy kidney, he has a lot of chronic damage and 1/3 of the kidney doesn’t have blood flow. The Acute and Antibody rejection is not the issue. The plasmapheresis IVIG and high dose Steroids helped stopped that rejection.The problem now is that his chronic had a hard time and was unable to handle the Acute and Antibody so it put a lot of stress on the Kidney.

Sorry about all my rambling… basically we are done fighting for this kidney and now it is up to Zachary’s body and God to tell us what is going to happen next.. So, we take it day by day..

The DRS will not even test any body for at least 3 months for a new one because Zachary’s body needs to calm down.. He has had so many treatments and drugs that his antibodies are going crazy. We pray that this kidney can last until than, but the DRS said he may or may not end up on Dialysis. Zachary’s body will tell us when it is time.

Wade and I are very sad, but Zachary has been a tough kid his whole life and this little set back is not going to hold him back…

Thank you for all your thoughts and prayers,
Stacey

Zachary is a fighter and will always be one..

My Montage 10/12/09

Zachary had a very rough night.. He was coughing and throwing up on and off from 2am-7am His reflux is so bad that he is now having a hard time swallowing.. Zachary also was hallucinating again on and off. Every time he would put his head down he would hear a buzzing noise and jump up.. All night he kept on asking when he was having his surgery because he wanted to be put to sleep.. He is so tired..

The Biopsy went great he went to the OR at 7:45 and was back up in his room at 10:30. The DRS said that they got a good sample and we should know more tomorrow. The bad news is that Zacharys urine is really bloody.. They are keeping a very close eye on that…..and he is on bedrest for 24hrs…

Zachary mitrofanoff is pretty swollen and red.. they did start an IV antibiotic last night, so hopefully he gets no infection.

Thank you Jeni and chase for the Monster Truck game.. We let Zachary open it in recovery when he first woke up.. He was so excited… Thank you..

Thank you for all your thoughts and prayers, Know it is just a waiting game for the results…

Stacey

My Montage 10/12/09

Zachary now has a Nasty Infection in his Mitrofanoff site… It’s Nasty and it smells AWFUL!!! They just started him on a very powerful IV antibiotic. Zachary is also up in his weight from 18.7kg ti 19.8kg in 1 day!! They are also doubling his Lasix again.

Tomorrow Zachary has his Biopsy at 7:45am.. please pray that he gets no fever tonight with his infection going on.

Kiley is also really sick, They are treating her with Tamaflu as if she has H1N1.. She has a high fever and a nasty cough. Right now she needs her mamma, I feel so bad I can’t be with her.. I am torn.. She is staying at Wades parents house and is getting A LOT of LOVING from them.. Thank you ,Judi and Pete.

Zachary is also starting to look like he is 6 months pregnant again.. his tummy is HUGE!! We are hoping it’s just fluids and the Lasix will take care of it.

Thank you for all your prayers,

Stacey

My Montage 10/12/09

UPDATE AGAIN… Biopsy CANCELLED until tomorrow… Stop this ROLLERCOASTER!!!

UPDATE… Zachary is going in for his Kidney biopsy today and not tomorrow… The DRS now feel that we may be able to do another high dose steroids to kick this rejection in it’s buttt!!!

If the chronic is worse then we just let it go…

Earlier post…  Zachary had a awesome night… and I can breath… Yesterday home care came out to draw his labs and his creatinine was 3.0!!! The DRS told us to get our butt up to the hospital fast!! well they redrew him last night and his creatinine was 2.32!! BIG lab error

!!!   I will take the 2.32!! any day.. We are all jumping with JOY…

The plan is to do the Kidney Biopsy tomorrow.. And STOP this rejection!!! I still have HOPE….. The DRS are going to try everything to stop it. But they keep telling me that even if they save it this time, it’s a bad Kidney and we don’t have much time.. But a creatinine of 2.32!! I can handle!! That will give us more time to find a HERO for Zachary…

The Biopsy tomorrow will tell us if any of the treatment that we did helped or did nothing…If it helped and he needs more treatment than we will maybe start back up and try to fight it again or we will have to stop and just let it go on its own.

Zachary is still very tired and is feeling pretty sick..overall he loves his nurse and has been smiling and flirting with them all.

Thank you for all your thoughts and prayers,

Stacey