Well I lied Zachary threw up 67 times yesterday! Did I say 67! Yes, How ridicules is that. I counted from 8am to 11:30pm; The DRS just came and are now a little concerned. What the plan of action is, I’M not sure. Yesterday that service tried to discharge us. I don’t think so; I might be amazing’ but I don’t feel comfortable taking him home throwing up 67 times!! 

Last night they also brought the D word up, ‘Dialysis’ not liking that! The Kidney Drs said that when Zachary had high blood pressure the Kidney LOVED it. It doesn’t make since’ When you have high blood pressure your heart is pumping a lot more blood to your organs. Zachary’s Kidney is not healthy and was liking that extra blood flow, but now that his blood pressures are under control his Kidney is saying I need more blood flow.  Having High blood pressure is hard on your body and your other organs, but if you have a bad Kidney it NEEDS high blood pressure to survive.  They are drawing Zachary’s labs today; hopefully they get a little better.

Zachary’s arm looks much better today. It is still swollen and he has a 1 inch red mark but nothing to severe. I got a little scared knowing what could of happened. Thank God I caught it when I did.

I am planning on leaving today; I have a few things that I need to get done at home. My Mother, Gina is coming up to sit with Zachary. In five years we have never left Zachary alone and usually I never leave,  but I need to figure out some bill situations.

Zachary loves every card and gifts that he has received! Thank you, it makes his day when the nurses come in with a card or a package.

Thank you for your support and prayers,

Stacey

I am getter a little better

Not much has changed, Zachary is still throwing up every 10-15mins and his throat is getting pretty sore. But now Dr Hess said it could take 6 weeks for the swelling to go down! I can’t take 6 more weeks of watching him throw up. He also said that he is discharging Zachary from his services but will call us every day to check on him; Yes I would love to go home but not with a child that throws up every 10 mins! Then the Kidney DRS walk in and said “NO NO you are not leaving his Kidney Function is not doing good and we are talking about doing a Biopsy to see why”. Well, they can’t do a Biopsy on the Kidney because of the risk of a blood clot in the bladder causing problems with the Mitrofanoff and the Supra Pubic catheter. If they do a Biopsy and he was in Acute Rejection they could not treat him because he just had a  big major surgery and his body would not be able to heal or handle high dose steroids . The plan is to up his Iv fluids add a couple more medications and re draw him in the morning. I can’t see anything changing, his labs have been getting worse each day and it took 4 blood pressure meds to control his blood pressure.   

Oh, and I forgot his IV that he was getting his TPN in infiltrated today, not good to have TPN in the veins.  Zachary’s arm became pretty swollen. After 3 hours with DRS in and out of his room measuring his arm every 10mins, taking pictures and packing his arm in ice. I was getting a little worried, so I called DR Stephanie ‘AKA’ Another kidney kid’s mom. Stephanie did some research and basically what happens is sometimes the TPN when it infiltrates in to the view it can cause 3^rd and 4^th degree burns, how scary is that. Zachary has a 1inch red mark on his arm that the Drs are keeping a close eye on and he is icing it 30mins on 30mins off.

Overall Zachary is making progress, little baby steps but we are hopefully seeing a light at the end. Tomorrow he will start physical therapy. When Zachary walks he looks like a little old man. He is unable to stand up straight from being hunched over for 13 days.

In the last month Zachary has been in the Hospital for 18 days! That is 18 days to long for all of us. We pray by sometime next week we can be home as a family again.

update- we counted 56 times today that Zachary has thrown up!!! 

Thank you for all the Cards, Presents and  many needed prayers,

'This is Zachary's swollen arm after some of the swelling went down

Zachary had his best night so far!  I am so mad that these DRS waited to do the surgery until yesterday, Zachary has been miserable with the pain he was having in his lower unit, I knew that Zachary was not crazy and something was wrong.

Zachary also tolerated his J-tube feeds last night at 20cc an hour! Yipeeee!! Our goal is for him to tolerate 1,400 cal’s a day and then we can stop the TPN. I do not like the TPN, Zachary’s labs are awful and his Kidney function is taking a beating.

Zachary is still running a low grade fever going on day 12; he has been getting heavy duty antibiotic through his IV so the Drs are just keeping a close eye on that. Zachary is still throwing up about 20 times a day and he also has a fungal infection in his esophagus so his throat really sore.

The DRS feel that we need to stay until Zachary’s Nissen loosens up, which if it doesn’t by next Wednesday then he will need another surgery to loosen it.  He is still NPO ‘nothing by mouth’ because of the risk of aspirating into his lungs, it so hard because Zachary is so thirsty from his throat so sore.

We are heading down the right direction and Zachary is looking great!

Thank you for all the prayers, presents, cards and the needed support that we need going through these difficult times,

Stacey

My Daddy is my HERO!!!

Zachary has had a VERY busy day!  7:30 LAB draw, 9:30 swallow study, and yes Zachary is still obstructed and then off to the OR for another surgery. When we got to pre-op for surgery NONE of the nurses or DRS knew what he was having done, how confusing is that; so after talking to several DRS and nurses we came up with a plan.

 At 12:30 after talking to many confusing people they took Zachary back to the surgery room. He had three different DRS working on him.

DR. Snyder was wonderful! He was trying so hard to kick these DRS in there butt, and told them that they need to communicate better! Zachary has a lot of different health needs and these Drs need to step up to the plate and take charge.

DR Snyder’s put a new G-J tube back into Zachary’s tummy; which was “accidently” removed when he had his surgery on Feb 27,  

Dr Urologist” Don’t know how to spell his name” Did a die study to look at his Mittrofanoff to see why Zachary is having so much pain. Well his Mittrofanoff migrated to his urethra which is very painful!  So that had to be fixed.

Dr Hess heard that Zachary was under and ran to the OR, but 1^st we had to sign a consent! Yes he forgot to have us sign one when he removed his G-J tube without our permission. So Zachary had to have another surgery for that.  Dr Hess scoped his esophagus to see why he is throwing up so much. Remember when he had his swallow study earlier he was still obstructed; Dr Hess said that his esophagus was still pretty red and swollen. The game plan is to keep him in the hospital until the swelling goes down. Yes I think we are going to be here awhile.

Zachary is doing great! He his having some pain and the throwing up is still about the same. When he woke up in recovery the first thing he said was, “I was dreaming about a TV in hear” Around 4:30 Zachary got back up to his room and was playing the Wii!  Way to go Zachary!!! He has been through so much and is always smiling, he is my HERO!!

Thank you for all of your cards, presents and many needed prayers,

I forgot to mention that Zachary has a fungal infection in his esophagus and his throat so they started him on a anti-fungal medicine through his IV.

 Stacey,

Zachary is having a great day! Each day he is getting stronger and healthier. We still have a few more loops to jump through, but he is making progress!

Zachary went down to the OR room at 3pm after the DRS Looked at his tummy and heard his history they decided that it would be too risky and would take longer than they expected, so back up to his room again.  Zachary just had a big surgery 1 week ago and his little body is healing. He needs a J-G tube put back in for adequate nutrition, he has already lost a lot of weight and he is all skin and bones.

They put him back on the OR schedule for tomorrow at 9am to give the surgeons more time in case something would go wrong.   ‘’Well we think 9am,  times are always changing.”

Zachary is not throwing up as much and his pain is almost under control, he is not having the intense pain for a long period of time like he was.

Zachary went outside for the first time in over a week. He still needs someone to hold his hand so he doesn’t fall and He looks like a little old man with a hunch back; he is so darn cute!!.

Overall we are heading down the right road!!

Thank you for your prayers,

Stacey