Kiley doing Gymnastics at the hospital

Zachary had a pretty good night; He is getting pretty irritable lately and will have screaming fits that can last pretty long. Sometime today Zachary will have another service added; Yes, let’s just add another person on, but this time with all 28 of Zach’s meds and the reactions he has been having to the medications, I think this is a good thing for him.  So guess who is being added? They are added a psychologist on, to help calm him down when he is agitated.

Zachary playing video games with our neighbor!

Guess what else we found out to add more complications with Zachary. On Friday wade got a letter in the mail about Zach’s blood. The letter said that Zachary has a rare blood type with very high antibodies, and if he would he a blood transfusion that the blood bank would need up to 14 days to find the right match. How scary is that! And if it’s not a perfect match then he could have a severe reaction and it could be deadly. Well Zach’s hemoglobin is still in the 7′s and there is no blood for him. And on top of all that, trying to find a kidney for him is going to be impossible.

Now about Zachary’s bowel obstruction. Well Zachary did have another BM but his small bowel is still dilated, not good; and Zachary throw up twice last night. The plan is to still wait and see if the swelling will go down on its own . Zachary is not having pain and his tummy is soft, So that is good. If Zachary starts to have more pain than they will have to investigate a little more.

Now about the Kidney. Zachary did pee a lot yesterday after 4 boluses of IV fluid, but last night with just his manitence fluid he started to slow down and his pee is a darker yellow, not sure why. He did have his labs drawn at 8am so the waiting game is on! If his creatinie {Kidney Function} is up then they will have to do a biopsy.

This roller coaster ride is not over yet, but I don’t care to ever ride one like this again! I miss my kids and my husband so much, I only get to see them on the weekends or if wade takes the day off of work, which wade doesn’t have a lot of vacation left and are money is running low. The plan is to get Zachary better and get out of here!!

 Thank you for all the cards and prayers, Zachary gets so excited when he gets mail.

Stacey

Zachary is having a great day!!! And  guess what? We have PEEEEEEEE!! And Zachary had a little poo today!!!! The X-Ray still shows that he has a small bowel obstruction but the contrast is moving very slow, but it is moving!!!

Zachary had a few visitors today, and we went for a walk OUTSIDE!! Yes, Zachary went outside for a walk for the first time in almost 1month.

The DRS are still concerned about the Kidney; even though he is Peeing his Creatinine is 2.09 way to high for him and with his blood pressures being so out of control. The plan is to keep giving Zachary lots of fluids and Lasxis to keep the pee coming. If tomorrow when they draw his labs and his creatinine is still high then they need to investigate  alittle more.

But for now I think we are heading in the right direction.

Thank you for all your prayers,

Stacey

Zachary had a pretty good night, considering having another surgery yesterday. When Zachary woke up from surgery he woke up screaming and out of control! I think I would too! This was his 4th surgery in less than a month! The DRS give him some Verset to calm him down, and sure enough he started to crash again. The DRS think his body is getting too tired and is starting  not tolerate these Meds anymore.

I am also REALLY worried about his Kidney! Last night the DRS give Zachary 2 boluses of IV fluids’ and maitance fluid and he is still not peeing a lot; we got only 50 cc of pee!!! They were also unable to give him TPN last night because if his Kidney has shut down he could go in to cardiac arrest from high potassium. Zachary is so malnutrition and anemic and needs any cal’s he can get; and on top of all this, he has not passed his bowel obstruction. The nurse is giving Zachary IV Laxis right now to see if they can get him to pee. We have been opening him Mitroffanof but it is bone dry!!! I am not sure what the next plan is. I will update later when I know more.

Thank you for your prayers,

Stacey

Little Miss Kiley!! Showing off!!

Yes, Finally Zachary’s Pick Line is in!!!  it took the surgeons a little over an hour because Zachary has a lot of scar tissue in his arms from the previous Pick Lines and  It took 4 weeks and Zachary now weighting only 31lbs!! Zachary’s creatinine “Kidney function” is up to 2.09! Way to high for him. Zachary has not urinated either today, the nurse is calling the DRS right now to come up with a plan.

Kiley and Austin waiting during Zachary's surgery

Zachary has not passed the bowel obstruction and they are planning on doing another X-Ray tonight. We are hoping for the contrast to have moved down into the large bowel. If Zachary starts to have more pain or the contrast has not moved then they will have to reopen him to fix the obstruction.

 Please keep Zachary in your prayers, he is getting really tired and has had enough.  We need to give him the strength to keep fighting, to get out of here.

Stacey

Up Up and Away!!!!

Super ZACH!!!

Read earlier post-

They did another X-ray at 10:30pm and the contrast moved a little bit not a lot, but I will take  any little movement that he will have. The DRS just came in and said that if in 24 hrs he doesn’t pass this bowl obstruction they will have to reopen again. Zachary needs to pass this! His little body cannot handle anymore surgeries and the DRS don’t want to open him again; it is too risky with being immune suppressed and having 3 surgeries in 3 weeks, Zach’s body is so beat up and bruised that we are not sure how much more he can handle. We just weighted Zachary and he is now down to 31lbs, I just want to cry, my little baby is becoming so fragile. When we came in 1 month ago he was 39.5, there is nothing left to him but skin and bones and of course a strong heart.

The plan today is another X-ray of his tummy, and sometime today he will go to the OR for his Pick Line placement.

Thank you for your prayers,

Stacey