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.

another update :(

Zach is still in the hospital, hopefully he will be going on Monday. His dr wants to do some autonomic nervous system testing on Wednesday that he will have to come back for but it should be outpatient. They may give them some more clues and may lead to some more meds for him to try. We are still waiting on the word from John Hopkins as to when we go up there.
He is doing good on half TPN and half J tube feeds, he is already gaining some weight back. He is still having lots of pain and nausea but they are not trying to fix that right now. This visit was to just get the line back in for nutrition. He is on TPN over 12 hours at night and on his J tube feeds over 24 hours.

Update

Zach's nurse came Wednesday morning for his weekly weigh in and check up visit. He weighed in at 24.2 lbs which is a little over a pound loss since last thursday when she weighed him. So she called and reported his weight to his Ped dr. and I called and left a message that we needed to talk. Over the past week, Zach had just gotten so blah...he just laid around all day, had no energy, was sick on his stomach, extremely pale and cold. So his Ped and I talked and he decided to let his GI doc know the current weight and they could discuss it. His GI doc decided it was time to admit him and have another central line placed for extra calories.
We were admitted around 5:30 pm Wednesday night at Brenner's. The plan was to place a line today on thursday. He had surgery today around 12 noon and it was fast, only took about an hour to get the new line in. Luckily, it went into one of the old spots and they didn't have to place it in his neck.
He is going to have half of his calories through TPN and half through his J tube feeds. The GI doctor is also working on getting him into Kennedy Krieger, which is a division of Johns Hopkins Hospital in Baltimore. We just have to wait til they get his appt scheduled. At least the TPN will keep his weight under control while we wait on his appt.
He should be able to go home hopefully by monday. We have lots to get ready before his benefit at the end of the month. We are hoping to raise enough money to last us while we have to stay in Baltimore.
Please keep praying for Zach, and please pray for Brent, a 5 yr old at UNC childrens that is very sick right now. He has mito and an acute HLH attack and needs lots of prayers right now so he can get better.

Hurry up and wait.

We had a follow up yesterday with Dr Hill, which is Zach's primary GI dr. It has been a while since he has seen him, we have been seeing the other dr's on call and such. First off, he knew very little about all the changes that have taken place with his meds and symptoms. So, that was the start...getting all the meds straight in the computer, yes it has been confusing, he has been on several different meds over the past month with little success so I understand. Second, he plainly told us he was stumped as well. Zach's symptoms/body doesn't follow any textbook and it is very confusing. All the tests that he has and blood work ups that he has are all normal so nothing makes since. Yet, his symptoms are real and they have seen them which again is confusing. He said that going to UNC childrens will probably not be the best choice, he doesn't think they can help us at this point. He thinks we need a more extensive hospital. He is thinking about sending him to either Cincinnati Childrens Hospital (yes, we have been there before but it was for a specific EE program and not as a general GI patient so we didn't see all the dr's) or sending us to NIH because they take on a lot of bizarre cases. He is also going to talk to his team this week about taking apart his roux en y surgery. The problem with that is how to feed him when his J tube is gone. His stomach cannot tolerate very  much....actually not more than an ounce at a time and sometimes not even that much so we can't use his stomach for nutrition.
The reasoning behind taking apart his surgery is that sometimes, yes rarely, you can have a complication with surgery that actually makes you worse (all he bile backup and worsened pain) so if that is the case we have to find a surgeon that would do it. His surgeon doesn't think that is the problem but who would admit that anyway. Not that it is his fault if that is the problem, there is no way to predict how your body is going to act to something like that. But again, how do we provide nutrition if it is gone?
And he also took another thyroid panel and immune test and if those come back weird then he will try to move up his immunologist appt. (right now it is scheduled for sept 23) He should let us know within the next couple of days what the plan is. We have to find out fast because he has already lost 4 lbs since the end of June.