We are HOME!!!! Zachary is doing pretty good.. his blood pressure are still very high 127/95, which there is not to much more we can do. They have to keep his Anti-rejection meds high so we can gave this kidney more time. But having him on such high doses causes the Blood pressures to go high. The plan is to wait and see what his body is going to do.

Zachary is also still up on his weight.. When we got home he was so excited and was running around chasing Austin. When he finally settled down his legs and ankles were very swollen.. His body is still having a hard time getting the fluid off. He is on Lasix x2 a day. Hopefully tomorrow he will understand that he needs to take it a little easy, Maybe we will have a movie day tomorrow.

The DRS are still going to keep a close eye on Zachary.. We have to call in his weight, blood pressures and urine out put every day until Monday. Than the home care nurse will come out on Monday and draw his labs, depending on his labs, than they will decide what will happen. The plan is to keep him home as much as we can. But if his labs are unstable then they will admit him again.
If we get to stay home.. He will have his labs drawn Monday-Wednesday-Friday. The DRS feel that this won’t last long and we will be packing our bags again.. I am praying that we get at least a week at home.

Kiley and Austin are having a blast with all of us home as a Family…. I missed them so much….

Thank you for all your thoughts and prayers,
stacey

Wow! I can’t believe that October is over and November is in Just 2 days!! We came in September 30. And pretty much missed October. It has gone by very fast, The Nurses up here are Awesome.. They are becoming family to us. This year Zachary has spent more time here then at home between DR visits and Lots of Hospital stays.

Zachary had a AWESOME day… He is feeling great!! He was on TV today for Thursday BINGO.. And all day that is all he has been talking about. They Video taped it so I will try to post it tomorrow.

Zachary’s Blood pressures are still very high… They added another medication last night, so now we are up to 35 medications a day!! They did lower his Neroal CSA to .60 from .65 hoping that his BP’S would come down. Well, they didn’t and now his creatinine Kidney function is going up. It is so hard to manage all these meds, and to

find the right doses to Keep this Kidney going.

Zachary also started to have trimmers today. His little hands and legs will start to shake. The DRS have no clue why but are still running some test. I think Med interaction.. With him being on 35 meds, I would shake.

Tomorrow they are having a Halloween party up here at the hospital. Zachary is very excited and is going to be Black SpiderMan.

Thank you for all your thoughts and Prayers,
Stacey

Zachary is having VERY HIGH blood pressure again.. 130/100!! NOT good.. The DRS new this would happen. This Kidney is really struggling.
It is very hard to balance all 34 of his Medications to regulate his body. They upped all his Immuno suppressions to suppress his body so it will not fight off the Kidney again. Well, doing that will cause his blood pressure to jump” Not good” and his creatinine kidney function levels go down “Which is AWESOME”. They also cut his Lasix in half, so know he is filling up with fluid again. Last night I had to cut his ID band off because he was so swollen.

We just go day to day not knowing what is going to happen tomorrow, I thought we might get to go home for the weekend for halloween for a few days. But now that doesn’t look like that is going to happen.

Zachary’ reflux is so severe that he is throwing up and dry hiving all the time. He is also having a hard to time swallowing. No one will touch him.. He needs another Nissenfundleplaction. When Ever GI come by this just say that he is to complicated and it is to risky to redo his Nissen when he is going to need a new Kidney soon.
I understand, but he is miserable. I sit here and watch him throw up and dry heiv half the day and at night.

Overall I think we are heading down the right direction. We just have some bumps in the road that we need to smooth over.

Thank you for all your thoughts and prayers,
Kiley is also still sick and is missing school again.

Please also pray for Luke and Dalton they are also fighting rejection

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

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

Stacey

Zachary had a very rough night.. His tummy got very big again and he was throwing up for about an hour straight. They brought him down for an Xray at almost 11pm last night and saw that he had an illieus. Which means his bowels are not moving and he had a blockage of air in his bowels. This morning he seems to be doing better but still feels nausea.

The good news!! Zachary’s creatinine” kidney function”

level is still 1.8!!!!!!!!!!!!! YIPPEEEEEE!!! The DRS keep telling me not to get to happy because Zachary does not have a good Kidney and he is going to have a lot of ups and downs. Remember Zachary is on 34 meds to help his Kidney function like this.
Well, I still Believe in MIRACLES!! And with all of us flooding the Heavens God is answering our Prayers.

Don’t forget to pray for Kiley too. She has been sick since last Monday with H1N1 and is going on missing her 2nd week of school.

Thank you for all your thoughts and prayers,
Stacey

Today I have talked to a couple of people that don’t under stands what exactly is going on with Zachary..

When Zachary was 11 months old he had a kidney Transplant that His Daddy my Husband donated. Almost 2 yrs later Zachary started to have a rise in his creatinine Kidney Function and his blood pressures started to go up. They did a biopsy and confirmed that he was in chronic Kidney failure. They upped his blood pressure meds and have just been keeping an eye on it. Well, September 30 of this year I brought Zachary in to the hospital because he had a creatinine of 1.4. Normal is 0.3-0.7 for his age. Zachary’s base line is 0.8. The DRS did a biopsy and it showed that Zachary was in Acute, Chronic and Antibody rejection. Zachary had 7 rounds of Plasmapheresis and IVIG. He also did high dose 110mg a day of steroids for 5 days. Zachary is still in Acute and Chronic rejection. They have doubled his Prednosone, immuran and his Neroal. In hopes to suppress his immune system enough to give this Kidney enough time for his body to settle down. Zachary’s Kidney is not a good Kidney he has significant scaring and his blood vessels in the Kidney are restricted and not getting good blood flow and 30% of the kidney is getting none. We just can’t Transplant him and give a new kidney.
#1 His body is not healthy enough
#2 His Kidney still is functioning enough to keep him going. “even though we know its not a good kidney”
#3 We will try everything to keep this Kidney as long as we can. We go day by day not knowing what tomorrow is going to bring.
#4 Zachary could lose this Kidney tomorrow , next week, or maybe a month. We don’t know.

All we know is that Zachary doesn’t have a great Kidney and all we can do is wait and see what is body is going to do.

We pray that it will last for EVER. Chances are mostly not. But we can have hope and pray.

Zachary is also on 34 medications every day just to keep this kidney working. He is also on VERY High Immunosuppression Meds, which is not good long term. They worry about PTLD Which is post transplant cancer. And they worry about the nasty side effects.

So my point is, Zachary’s Kidney is working enough to keep him going for now. BUT it is a very damaged Kidney.
And Zachary’s body will tells us when it is time to let it go and take the next step to Transplant.

Zachary is having a great day!! We went on a couple of walks and have been playing the Wii. They stopped his Go-litely and started his feeds to 20cc and hrs. The DRS felt that TPN would not be safe for him right now.
Zachary’s tummy is still pretty big and he is still very swollen. He was very nausea this morning but tonight he seems to be better and has more energy. Tomorrow is another day and we will take it one step at a time.

If you would like to know about his whole history.. go to the top of the page and click on Zach.

Thank you for all your thoughts and prayers,
Stacey