Zachary sitting in his chair so the spiders won't get him

Zachary is still hallucinating and he thinks black spiders are crawling all over him. Last night I had to hold him really tight and sing to him until he finally fell asleep; he slept good until 4am and then woke up screaming and jump out of bed. Zachary has been sitting in a little folding chair since 4am and now it is 11:30 he won’t lay in his bed because of the spiders and he won’t even touch the floor. It is so hard to see him like this and I pray it doesn’t last much longer. It is getting better little by little.

The DRS are also going to start him on Pedialite at 5 cc an hour to see if he can tolerate it; it doesn’t sound like a lot but Zachary has had a hard time tolerating anything in his gut. His gut and bowel just quit working and it will take time….. and will hopefully start to work again.

Zachary is still having trouble with his Mitroffanof,  he is so scared every time we try to Cathing him;  so the DRS decided to hook it up to a bag and continuous drine it.

And now with his Kidney; Zach had his labs drawn and his Creatinine ‘Kidney function’ is up again, and his liver levels are high. The TPN that Zachary is getting for his nutrition has a lot of side effect and some are Liver  and Kidney failure. But this is the only way that Zachary can get his nutrition so live and grow until his stomach and bowel start to work again. 

Thank you for all your thoughts and prayers,

Stacey

Last night was not a very good night for Zachary; As a parent I cried watching my child suffer from hallucinations for the second time in a month. From 2am till 10am this morning Zachary was scream; thinking that black spiders were crawling all over his body and in his bed. He was terrified screaming kicking and was uncontrollable for hours. They tried to sedate him and he only got worse. Last night was one of the hardest nights for me because I have never seen Zach this scared in my life; I have never seen anyone this scared before ever! not even on TV. It is now 2pm and on and off he will say what’s that; something’s in my bed. The DRS think he was having another Medication reaction to one of his Meds.

The psychologist said that it is very rare for a child to Hallucinate like Zachary has been doing.  I just want my little boy back; the one I had before we came in a month ago.

The Care Conference didn’t go as planned; The Drs all feel that there is nothing we can do, but wait to see what Zachary’s stomach and Bowels are going to do. So The plan is the same, Just wait and try to start his feeds again and if this time it doesn’t work they will have to think about doing another bowel surgery to clean the scar tissue and adheasions again. Which we will wait a few more months before I will let anyone open him again.

 Pleas pray for Zachary to get better and for our family there has been a lot of tension between all of us and poor Kiley is having a really hard time with us not all being together.

Thank you for your prayers,

Stacey

Zachary has had a pretty good dayJ The DRS took out the tube for the Mitroffanof which was a little scary for him. Then 2 hours later we tried to Cath him through the site and it decided to close on us! So they had to call the surgeons back and figure out a plan. Well another 2 hours later they were back with some lidocane  so they could push the tube through the hole and stitch it back in.  Nothing goes easy for Zachary.  When the DRS finally got the tube back in they decided that it was just getting caught on a little lip (Extra piece of skin) Thank God; I thought he was going to need another surgery! Now the plan is to Cath him every 2 hours through the belly botton; Which Zachary does not like! We need 4 people to hold him down.

The plan is to keep Zachary on TPN until these DRS can figure out why his stomach and bowels are not working. Tomorrow we have a Care Conference with all the DRS that are working with Zachary. I think I would be scared if I were them; knowing how mad we are… and how this has turned into a night mare!! we need answers!

Thank you for all your thoughts and prayers,

Stacey

Zachary had a pretty good night, lately Zachary’s feet are always cold; so half the night the poor nurses were filling the blanket warmer left and right. I think because he has lost so much weight and now he is playing catch up.

Zachary is still on TPN and the DRS are hoping to maybe  to start his J-feed with Pedialite at 5 cc an hour, I’m not going to hold my breath because every time we try to start his feds He either gets another bowel obstruction or something else these DRS just cant explain. If Zachary is not able to tolerate them this time they will keep him on TPN for a while. I don’t like the long term effects of TPN; it has it own set of problems and one is liver failure.

The DRS are also trying make discussions about what they should do with Zachary’s Pancreatitis. It is so crazy because his labs and the way his stomach and bowels quit working says that he has it, but usually someone with Pancreatitis are in a lot more pain and in ICU sedated. Well Zachary is one tough Kid! The DRS are rechecking his levels again today and are consulting with other DRS. If his Pancreatitis levels keep going up then they will have to maybe do another surgery to put a stent to open it up; not sure every day it is something new.

Zachary is such a little trooper! With all that he has been through ,

Zachary and his Favorite nurses

he will always give me a smile!!

It’s hard when people don’t understand how fragile these children are, so they are surrounded by other kids and adults with fevers (avoid kidney kids if you have a fever) and runny noses and coughs and siblings who have been exposed on a constant basis. Because they look fine, because they play like your child…they are treated as such. However, for these kidney babes, it’s like putting them in the boxing ring with their hands tied behind their backs. With immune suppression, they suppress their body’s natural reaction to fight off foreign germs. The problem is they don’t know what they are suppressing. All of these  kidney kids are all miracles in my eyes!!! Jill  another Kidney Momma of Gavin wrote this, and this is Reality for all of our Kidney kids.

Thank you for all your thoughts and prayers,

Stacey

Check out my cool shirt!!

Zachary has been having more tummy pain today; The DRS came in around noon today and they did say that Zachary has Pancreatitis and a small bowel obstruction, not good.  So the stomach and bowels are not working at all and the plan is to keep him on TPN and watch him very close. That Drs said that it could take another 5 weeks! or even longer it depends on what Zachary’s body is going to do next. 

Please pray that Zachary can be pain free and that his little body to heal.

Stacey