Wow!!  This has been a rollercoaster ride that I don’t care to ride again!!

Today Zachary is doing great!!! He woke up at 6am for his daily labs, and than lab came back at 10am to draw him again. Some of his levels are way to high or low, part of the kidney failure.  He is more a wake today and his throwing is really slowing down, Yippee!! Hopefully the Nissen is loosening up.  He is still having the intense pain in his rectum area which they are trying to manage with pain meds. The plan today is to have a G-J tube put back in, that the Drs took out during his surgery; YES we are pissed!!  Zachary is looking so skinny there is nothing to him but skin and bones..He is still irritable and  he keeps asking the same questions over and over again, we need to get him out of here.

Thank you for your prayers and support

for us to go home and be a family again! I am missing Kiley and Austin

Zachary had another rough night with what we think were bladder spasms, not sure but it is intense pain that can last up to 30mins of screaming! Tomorrow Zachary will be having surgery to replace his G-J-tube which they took out during his surgery last Friday, which was not smart on the Drs Part!  Then on Monday he will have a swallow study to see if the Nissen has loosened up, if it has not loosened up he will need another surgery to loosen it.  Then on Tuesday he goes back under for a Hickman and MRI on his brain to look for brain damage from his seizures that he was having last Saturday. The next couple days are going to be pretty busy.

 Thank you for all the cards and gifts, Zachary loves them!!

Stacey

Read earlier posts- 

Zachary is finally doing much better!! He had EPO in his IV this morning and slept all morning and afternoon so tonight he is wide awake playing Mario cart on the Wii.  Zachary threw up 30 times today! He is such a tough kid, he will throw up and then start playing his Wii again, nothing will get in his way of playing his games. Zachary had 2 bowel movements today so we know his bowels are working. He also was running a fever again. I left for 3 hours  for the first time in 8 days, walking out of the hospital was really hard on me, I cried almost all the way home. Wade stayed up at the hospital to watch Zachary; I guess he cried and didn’t want wade to help him with anything. Zachary is a Momma’s boy! The Drs started water into Zachary’s G-tube today at 10cc a hour and so far he is tolerating it, YIPEEEE!  One more step closer to home. Overall Zachary is doing great , he walked 2 times today all hunched over like a little old man; he is so darn cute! The plan is on Tuesday he will go down for a Hickman and a MRI on his brain. The Drs are worried that he might of injured his brain when he was having his seizures on Saturday He seems ok, just a little more dazed and sensitive. But I would be to, after everything that he went through. We pray that there was no damage.

Thank you for all your messages and cards that people sent in the mail, Zachary loves them; they are hanging on his wall

Zachary had his labs drawn, and yes i was right his Hemoglobin is getting lower each day,so he will start EPO through the IV today, and if that doent work then he will have a blood transfussion.  His creatinine (kidney function) is higher today too. Zachary is still throwing up and having some pain, he cried a lot last night and wanted me to snuggle in bed with him.  He got some sleep, but it is really hard when nurses and Drs are in and out half the night. On Monday if Zachary is still thowing up they will put a NG tube down the nose to drain the esophogus so hopefully he will not blow this nissen too. The Drs said it could take up to 3 weeks for the swelling to reduces in the Nissen and recover. On Tuesday they have him schedule to have surgery to put a Hickman in  for his TPN , which we have been useing his IV that is going to blow anyday. They are also doing  a MRI on his brain, They are concerned with the siezures that he had for 2 days straight. Last night i also noticed that the back of his neck on the right side up into his head looks swollen, so that is also a concern. Each day is a new day with lots of ups and downs, we new going into this surgery  to improve his quility of life that Zachary would have to fight hard and fighting hard he is. Zachary has taught us so much and these Drs are amazed how tough he really is. We still dont have a light  at the end  for us to go home for at least 2  more weeks depending on what his little body is going to do.

Thank you for all your prayers,

Stacey

Zachary is wiped out he is still having pain and day 7 of throwing up ,  I think it is all catching up with him. Zachary had some visitors today and was very senitive Don’t take it personal, He is still not feel well. His color is getting more pale white -gray and his eyes are puffy with dark circles. He has not even wanted to play his video games tonight so he is really not feel well. The nurse just came in and did vitals, his blood pressures are perfect 88/54, his heart rate is a little low and he is running a fever again. I am almost postive his Hemoglobin is low, they will draw his labs in the morning. Overall we are taking baby steps the right way.

Thank you for all your prayers and  Get Well cards, Zachary has them taped to the wall for all to see.

Stacey   http://www.youtube.com/watch?v=GpBuEuagZxE&feature=related