Zachary had a great night he fell asleep around 10:30pm and he is still sleeping and it is 9:30AM. The DRS just came in and are so confused on why Zachary bowel is still obstructed and his small bowel is dilated by were the stomach and bowel meet. Nothing is passing not even Zach’s stomach acid, so they have his G-tube vented to a ferral bag so suck everything out of the stomach 24/7 every time they clamp him off he throws up.

The DRS are trying to come up with another plan. The DRS are also thinking that Zachary’s Pancreases is not working properly either. We pray that is not the case.

I will update later when i have more time.

Thank you for all your thoughts and prayers,

Stacey

Get out of my way! I am trying to play my game!

Today has been a better day for Zachary, he is having a lot of ups and downs;  but today is a up day!! Zachary is only having some gas pain today and his feet and legs are starting to hurt him. The DRS think it is because he is so malnourished. His hemoglobin is finally coming up and his creatinine is coming down; very good news! Zachary is still on TPN feds until he is able to pass this bowel obstruction, but every time we try to feed him he just gets obstructed right away. None of these DRS want to open him because of all of the complications that he has had. And I DON’T want anyone touch him.

Watch out!

My mom came up today so I was able to go home and do some laundry. Zachary cried almost the whole time i was gone. On my way back to the hospital my Van staled on 94 right before I got into the tunnel; Yea, I was scared, I think my transmission is going out, lets just add more stress and problems to our complicated life. If there is anyone that wants to take a project on, my Van is in the parking ramp down here at the U of M.

Zachary still has blood in his urine but now the DRS are thinking it is from the  mitroffanof  rubbing the inside of his bladder.  The DRS are keeping a close eye on that.

I miss my family so much and Zachary just wants to go home. Zachary has been in for a month, and every time we think he is doing good, Zachary seems to stump these DRS with another problem. Zachary is such an amazing kid! With all that he has been through he will always give me a smile to tell me that he is not done fighting and that he will be here for a long time.

Thank you for all your thoughts and prayers,

Stacey

Zachary had another rough night with pain and was throwing up Green Bio. The DRS said that he does have another bowel obstruction, so we are back to square one. Plan is to keep him on his TPN and IV fluids’ to once again give his bowel a rest. This is turning into a viscous cycle and none of these DRS want to re-open him to fix the problem.

We just got Zachary’s labs back and his creatinine Kidney function is looking much better! Zachary still has blood in his urine and a lot of protein. The DRS think it is because he is so malnourished and anemic.

The plan is to get Zachary healthy again, it is so hard as a parent to watch your child go through so much, and is throwing up and in pain. It is even more frustrating when these DRS are so confused with all of Zachary’s issues. They call him the mystery child.

Please keep Zachary in your prayers,

Stacey

Quick update-

Zachary’s labs were a little better this morning but by 3pm today he started having less urine with blood in it; not good and on top of that he is having more tummy pain and has been throwing up green Bio all night. So far we have measured 900cc of throw up since 4pm. Zachary is also looking pretty dehydrated from losing the 900cc, we are waiting on his Stat labs that they just drew on him.

The plan is another X-ray and to give him more IV fluids.

Please pray that Zachary’s little body can just get a break and heal

Stacey

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