surgery

They couldn't get the longer tube placed in his j tube spot today. It was blocked somewhere and so he is having surgery tomorrow sometime. They might have to remove some intestines, won't know for sure until he goes in and sees what it is or how bad it is. Just pray for Zach. This will be the 3 rd time under anesthesis in 3 days. :(

Updates part 2

So Zach's infection is looking a lot better, no more positive blood cultures since friday. No more fevers since late saturday night. That is so good, for once his infection cleared without having to pull his line. On another note, sunday when he nurse gave him his meds, they immediately came back out around his j tube stoma. Which has never happened before, it has been leaking excessivley since tuesday of last week but I had never seen it do this. So they scheduled him for a ct scan on monday morning to check his abdomen.
Monday morning came and they decided that a ct was not the best option, but another test called a double contrast study would work better. So he went down to have that done at 1pm. They injected barium contrast then air into his j tube and watched it move...or lack there of. I knew something was up when the dr left to go get another dr, the barium was just not moving down his intestines like it was supposed to. So they took xrays at 2, 2:30, 3 and then 4:30. I had to go to Zach's benefit last night so my mom (nana) talked to the dr's when they came by. They said they see a possible partial obstruction on the xrays. Apparently even after that long, barium was still in his stomach (which shouldn't have been there to begin with) and in his small intestines and it should have passed all into his large intestines at the point. So they were going to talk to his surgeon.
This morning they came by and had talked to surgery and decided it would be best to place a small scope into his j tube site and see if they could see the obstruction first before performing a big surgery. So he had that done this morning at 11.
This test showed that his roux en y was possibly the issue. The GI docs think that it is too anterior and the balloon of this button is blocking his intestines forcing formula back into his stomach and pooling around the tube. He also couldn't get the scope into the stomach portion of the roux en y so that might also be a problem . The plan is to place a longer j tube in tomorrow in intervential radiology under sedation. This tube will bypass the roux en y and hopefully make a difference. If not, if he still has pain, or vomiting or leaking then the surgeon will go in and look.
He has also expecting a visit from immunology to check on his dropping wbc. They have been trending downwards this week, it is at 5. He is also showing a big dip in his hemoglobin, it is now at 8.9. And this morning his blood sugar was 41 which is really low so that is all new. It came back up but it is very strange and new issue So we will see what else this week holds. He will be here through at least monday due to the iv antibiotics.

Updates

Friday morning Zach woke up with a 103 fever, so off to the dr we went. Unfortunately there was no easy explanation for what was causing the fever, so that means blood cultures. I got to the ER at Brenner's with him around 10, he was supposed to be a direct admit but the ER gets blood cultures faster so we went there. After about 5 hours they finally moved us up to a room.
Within 8 hours the cultures came back positive, and hours later had even more bacteria growing. Right now, he has 3 different types of bacteria growing in his blood. So that is not good at all. He is on 2 really strong antibiotics and we hoping they take care of it.
This morning his fever spiked to 105 which is scary, so they tried to get an iv started to give extra fluids and his lipids so they wouldn't have to stop his TPN to run his vancomycin but his veins wouldn't thread. So not sure what they are going to do about that.
They have him on vitals every hour and hooked up to the heart and oxygen monitors. They are also checking his blood sugar and just keeping a close eye on him for now. If he worsens he gets transferred down to PICU.  Please just keep praying!!

Monday

Zach went to his GI appt today with Dr. Hill. No news about anything, there were no specific findings on the autonomic testing and no word yet on Johns Hopkins. He also put him on a new medicine, propranolol, I haven't filled it yet. I always like to do my own research first and I am glad I did. This med is usually used for blood pressure issues and circulatory problems. Yes, it can help with migraines as well which they are hoping it would help his daily vomiting  and pain. But it says don't use if you have raynauds syndrome...he has and it says a serious side effect would be very cold and blue fingers and toes...he already has so I definitely do not want to make it worse. Plus, it is a med that you cannot stop abruptly so if he did have a reaction, we would be in trouble.
So I am going to call his Ped in the morning and check with him on what I should do.

On another note, I hope everyone saw Zach's article in the Greensboro News and Record on Sunday. He was front page of the Guilford Record section. It is a very nice article and tells about our upcoming benefits for Zach.

Huge Indoor Yard Sale
Friday 4pm to 8pm and Saturday 7am to 1pm
@ Bonnie Kay Seafood
222 Spur Road  Greensboro, 27406
and
Spaghetti Dinner and Silent Auction
Monday 6pm until
@ Bonnie Kay Seafood
$7/person includes salad, spaghetti, roll and drink

Please come out and support our Baby Zach!!

Backwards again :(

We started our sunday morning out with Zach throwing up all over the kitchen, so that was not good. Unfortunatly, it didn't end there....he has thrown up every morning since Sunday and yesterday when his nurse came to check him and change his central line dressing, she weighed him and he lost 1 lb and 1 oz. Not good at all.
I don't really think it is all do the vomiting though, because he is not throwing up a lot of formula...just stomach stuff. I just don't think his body is absorbing enough of the formula to add the calories. So I talked with the GI doctor's nurse today and they are going to increase his TPN...not sure if that means more hours or higher amount. We get our TPN delivery tomorrow so I assume I will find out then.
He goes back for his follow up appt with Dr Hill, his GI on Monday so hopefully they will have some test results from the autonomic testing and some news on Kennedy Krieger/Johns Hopkins.

Taking it easy

Zach came home from the hospital on Monday. He is on half TPN and half J tube feeds,  it works out to being 24 hours of J tube feeds and 12 hours of TPN. So far, it seems to be working, he has already gained back a couple of pounds.

He went in Wednesday for some autonomic testing. We were greeted by Dr Fortunato (love him, he is so sweet) and another Dr, I think he was a nerve or neurogical dr...not quite sure. They hooked Zach up to a blood pressure cuff, this big pulse ox machine and chest monitors. He had to sit still for about 10 minutes while they monitored everything. Dr Fortunato was so good with Zach, he really didn't have to be in there with us but he sat and talked to Zach the whole time. They also drew about 55mls of blood to check some neurological markers.

This test is supposed to show if his nervous system has some issues with keeping everything on track. He said it might show something, it might not but they just wanted to try it. They might start him back on some different medicines for nerve problems.

Dr Fortunato is also supposed to talk to the Dr's at Johns Hopkins first of next week so hopefully they can get something worked out with Zach going up there.

On another note, Zach started running a low grade fever Wednesday. Yesterday it went up to 100 degrees so I took him into his Ped's office. He said his throat was kinda red, so he could have a little virus or it could be that his bone marrow is going crazy trying to make new blood cells from all the blood they took and that can cause a fever. Last night and today it is still hovering around 100.4-101 so we are just riding it out for now. He isn't acting sick but if it goes up higher, he will have to have some blood cultures drawn to check for infection. Since he has such a history of blood infections with his central lines, we have to monitor him closely and really at this point....any fever scares me. We have to keep this line in, he needs it to survive.

So we are going to stay at home, away from kids and all the sick people that go out.