We need answers! Zachary had another rough night with no sleep! And now he lost another IV!  The DRS came in and are now mad that they cancelled the Pick Line today, me too!

I was going to explain a little about Zachary’s Nissen ; What is going on is that, The Nissen  is very swollen and irritated nothing can pass, so all the spit and saliva that you make in your mouth that you are suppose to swallow  sits on top of the esophagus and every 2-5mins he will need to throw it up. Not FUN, last night he was crying half the night wanting it to stop!  The DRS still say they won’t loosen it for at least another 4 weeks!! That is way too long with him throwing up 60-100 times a day!!!

The Plan today is to talk to the DRS in releasing Zachary tomorrow to see if he will do better at home in his own environment. Zachary is exhausted beyond exhaustion; he needs to sleep. Physical therapy came today and all he did was cry and his poor legs are so weak, every time he would stand they would shake. Then speech came in and his eye would just roll back into his head. I finally had everybody leave so he could nap and then lab came back! Give this kid a break! He is so exhausted. Zachary is finally asleep, I put a sign on the door that says “DO NOT DISTURB!! We will see if that works.

I hope they will just let me take him home and get a home health nurse to come out daily to check on him and draw labs. There is nothing more they can do for him in here.  We have been in for 21 days in less than a month, way too long.  The DRS and nurses all call Zachary the mystery child, how comforting is that.

Thank you all for your thought and prayers, if we go home tomorrow I will still update daily on Zachary’s progress.

Stacey

My angel sleeping

Zachary wants to go home! He has had enough, this throwing up is out of control and he is tired. The DRS came in and can’t believe that he is still throwing up on day 13 post-surgery. The DRS all say that they have never seen a child throw up has much as has in one day in their life time. I am scared that he will never get better, but the Drs just keep telling us that it will just take time for the Nissen to loosen.

Zachary had Physical therapy today to work on him getting his strength back; he still looks like a little old hunch back man.  He is getting stronger each day and is able to walk by himself.

Zachary’s Hemoglobin is still really low so the DRS checked an iron level, and sure enough Zachary is Iron Deficient that is why they are unable to get his Hemoglobin up. They gave him Iron through the IV today and are planning on repeating it again tomorrow. They are trying hard to avoid a blood transfusion because we are already having problems with high antibodies; that make it harder to find a new Kidney to match him.

Overall Zachary is looking great; I told the DRS that I am ready to go home! I am able to care for him better at home then in here. Plus everybody up here has the Retrovirus!!   We all ready know that the Kidney is damaged and he will need a new one; but why wait for him to get sick up here when can be home and relaxing on the couch watching movies. The only thing that scares me about taking him home is how much he is throwing up and his low Hemoglobin, which maybe it will get better if we leave this place. Sorry I need to vent sometimes and I ‘am very tired and just want to go home, I already told the DRS  that I want to leave by Sunday, not sure what they are thinking about that.

We pray for this vomiting to stop or aleast slow down.

Thank you for all your prayers and support,

Stacey

Zachary is having a better day! Yesterday Zachary threw up 92 times!!! Yes it makes me sick to my stomach! My mom came up yesterday because she didnt believe me, After 30mins of sitting by Zachary with a puck bucket by his head, she was pretty shocked He is throwing up every 2-5 mins of not stop throwing up. The DRS are so confused; now they are thinking it could be related to his bladder infection. They just started treating him to day, they were waiting on a cultures to see what kind of Bactria he was growing. Zach is growing 2 nasty Bactria’s. The DRS are also thinking that could be why his labs are so off..

The DRS cancelled his Biopsy and pick line tomorrow. They want to see if his creatinine levels will go down being on the antibiotics. It would be to risky for him to have another surgery with a fever and a infection . The DRS are also pretty positive that he is not in Acute Rejection and it is the Chronic Kidney failure getting worse. It is so frustrating because these DRS keep going back and forth with Acute rejection or Chronic I don;t think they know. The Drs  also want to hold off on the pick line because we are almost at his goal for feeds.

Zachary is getting 52cc an hour for his J-tube feeds;  his goal is 55cc an hour for continues feeds. It has taking a long time but we are almost there.

Our goal to go home is;

1)55cc an hour for continues feeds

2) To minimize the throwing up to maybe 20 times a day and not 92!! Which these poor nurse have never seen.

3) For his Creatinine come down and his Hemoglobin to go up

4) For his bladder infection to clear up

We are almost there,

Thank you for all you prayers,

Stacey

Zachary does have a bladder infection, a pretty bad one. Zachary has been pocked 3 different times today and his kidney function is not getting any better.  This afternoon they also did a kidney ultrasound that showed fluid around the kidney. .The Drs are starting to get concerned.

On Friday he will be having another surgery to put a pick line in his arm for  lab draws and TPN for his nutrition, they are also going to do a kidney biopsy. Now the DRS are getting worried! His Hemoglobin is pretty low for a Transplant child, it sounds like they will have to do a blood transfusion if they can’t get it up with his EPO IV.

I will up date later,

Stacey