Thursday, March 31, 2011

Little man, big problems

On Wednesday, Zach went to his regualr GI doctor at Brenner's. He had a couple of issues going on, for one...he is having diarrhea again and for two...he has to be hooked up to his venting bag on his g-tube when he is doing 18 hrs of feeds through his j tube. He is draining a lot out of his g tube into his bag so that is worrisome. When we were in the waiting room, I noticed he was draining his formula into his bag which is not good.
We met with his doctor and he sent him for xrays...he was thinking some type of obstruction causing the excessive draining but all the xrays were clear. He discussed doing some more motility testing to see what is going on with his GI tract. Something is not functioning correctly and he is going to try to find out. He is thinking some type of reverse motility, meaning instead of going down and through his intestines like normal, stuff is going up and back into his stomach.
Our plan is to drop his feeds back down to 10 hrs a day for a few days to let his symptoms subside and then slowly day by day we go up an hour in feed time until we reach the point that the symptoms come back. He also said if we can't figure this out, or we can't fix it, we will have to go to a central line or TPN for nutrition to "fatten him up"
He is dropping from 1200 calories a day, what he needs to 500 calories a he is going to lose a lot of weight during this process. We just don't know why his body is rejecting all the nutrition that we are trying to give it, Hopefully the new testing can come up with some answers.

Friday, March 25, 2011

Our week is over

Our week of appts wrapped up on Thursday morning after meeting with the GI doctor and dietician. This visit was mainly focusing on his weight gain and calorie intake. The plan is for us to focus on him gaining weight over the next 4 weeks or so..every week after his nurse comes to weigh him I have to call and report his weight to the GI doc there. After he reaches his minimum weight of around 24-25 lbs then they will schedule his next appt about 3 months later. He will be going back and forth every 3 months or so from now on.

We have to meet with his Pediatrician this week to discuss his plan and get referrels to speech and behavioral medicine for Zach. They want him to be seeing both locally. When we go back for our next visit, he will have an endoscopy where they will take biopsies to see if his EE is in remission...if so we can start food trials via the allergist who we will also see...these will either be done inpatient or outpatient depending on how they go. During his scope they will also check for the celiac gene to see if that is a possiblilty and they will recheck all of his dissacharides..i.e. for the sucrose-isomaltase deficiency. He will also meet with their motility specialists to check for all his gastric motility issues to see how bad they are and find out what exactly is going on.

The only downside to Zach getting more formula right now is that he is vomiting more, we have to hook up his G tube to a farrel bag (venting bag) to release his stomach fluids and if we don't...he vomits. Poor baby :( Hopefully he will adjust soon.
Overall this week we had at CCED was very helpful, informative and crazy! Next visit will bring more tests and answers and maybe some foods. Until then we will work on getting him the calories he needs to grow!!

Wednesday, March 23, 2011

Day 2 and 3 of appts

Day 2

Yesterday was busy as well, even though we were inpatient still we had several doctors checking on him. We met with speech and ot therapy and behavioral medicine. They both had lots of suggestions and ideas for us and Zach. Speech and OT are mainly trying to get him to take his bottles at meal time and not using them for a pacifier. So we have to limit him from walking around with a bottle all day and give it only to him at meals so he wants it more. Also they want me to make sure he is still touching and feeling all sorts of textures and materials so he doesn't lose the sensations since he can't experience them by eating. They also gave me some ideas at the dinner table to occupy him and give him the social experience he needs. Behavioral medicine (i.e. pychiatrist) was very helpful. She was very nice and told us at this age we are mainly trying to prevent behaviors from happening by making sure he can't get in the situation to have them. That means, for one I have to get a new trash can with a locking lid or put in a place he can't get too. Yes, he gets in the trash can and tries to eat food out of it...resulting in a horrible fit when we take it away. And during meal times, after his 5 minutes of social experience at the table, we are to take turns taking him and doing something else while the other one eats dinner. Also for nightime, a big concern was not being able to hook him up since he wakes up so much and won't stay in his bed. So the suggestion is to move his bed into our room, that way if he wakes up he will be close to me and he doesn't have to get out of bed. This will help with his feeding a lot.
He did gain weight yesterday too, he was about 5 oz more than Monday so yay!!

Day 3

Today was more laid back. The doctors made their rounds about 11 am this morning and went over everything that we had learned and the results from some of the bloodwork. So far the bloodwork looks good, one liver enzyme was slightly elevated...not a big concern and his IGE was elevated and well...duh, he had allergies so we are still waiting on the rest to come in. They have set his daily intake to 1200 calories a day or 40 oz of elecare. That means 18 hours of continuous feeds at 55 ml an hour and then he needs to drink 10 oz by mouth/bottle a day. That will accomplish the goal of 1200 calories a day. He gets a 6 hour window without the pump which is good and we can set the hours anyway we want but he was on the schedule of 3 pm to 9 am of pump then off from 9 am to 3pm then back on. That worked good so far.
The only issue we have noticed is he is having diarrhea again, 4 so far today...has been 1 formed stool a day for the past 8 months or so. They said that is from the elecare (formula) having some sugar in it and therefore he needs to be on sucraid for his sucrose-isomaltase deficiency. Unfortunatly, the sucraid is about $5000 a month, read it right. And you can only get it from one place so not easily accessible. They are working on it and trying to get insurance to approve it for him.
We got released from the hospital around 12:30 pm with a follow up GI clinic in the morning at 8 am. Dr Franciosi will go over all the plans for Zach and let us know when to come back. He is supposed to get an endoscopy in aobut 4 weeks but we can do that Brenners in Winston and just send the biopsies here to Cincy. And we will meet with the allergist again at the next visit to discuss what to do about foods.

This afternoon we went to the Newport/Cincinnati aquarium and had fun. It was nice after the last couple of days. Zach much needed to get out and run and he enjoyed looking at all the fish.
This week has been very informative and interesting so far so we can't wait to see what tomorrow holds.

Monday, March 21, 2011

Day 1 of Dr Appts

So, today was eventful to say the least. This morning was our first GI clinic visit at 8 am. We met Dr Franciosi, who is great, and he talked to us about Zach...he already had his records so he knew a little. We told him all of his history, from birth til now..all the struggles with feeding, foods and our concerns. I am pretty sure he was a little overwhelmed a how bad Zach's case is so he called Dr Putnam who is the other GI doctor. When he got back from talking to the other doctor, he explained to us that the major concern was his calorie intake. He isn't getting enough calories to grow and gain weight like normal kids and for him he had lots to make up so his calorie intake is very important. He wants some major goals accomplished at this visit. He was supposed to do an endoscopy on Zach later in the afternoon but canceled that..for one, he just had major surgery aobut 4 weeks ago and two, he doesn't feel that is the most important issue right now.  So instead he decided to admit Zach into the hospital to do a feeding study and meet with other doctors.
His major goals for this visit are...
-increase calorie intake
-start sucraid for the CSID
-try to unravel his extensive medical history
-figure out if there is some underlying cause for all his problems

We were admited around 11:30 am and brought to room A615...which this is by far the biggest hospital we have been in and it is very confusing. They got of his vitals and weight, which is 22.7, down from last week so a little sad. Then we had a slew of doctors coming in and out. We met with another GI doctor, speech and ocupational therapy, allergy, and a dietician. He also got lots of blood drawn to check for various underlying conditions from mitochondrial to celiac. The allergy doctor, Dr Von Thiel is so awesome...he was so sympathetic and agreed his biggest goal is to gain weight before we start foods. He believes Zach has primary EE which cannot be controlled with medicine only dietary. He also is ordering a whole workup of blood, checking his immune system from HIV to parasites..trying to see if something else shows up. He said he could have a slew of various conditions that could be making his system go crazy. He also told us Zach might not be able to eat for several years, but that would be worst thing and hopefully not the case.

He meets with speech and occupational therapy again tomorrow so maybe they can bring some insight to help with feeding. They want him to keep using the botte to drink out of if they can get him to drink more out of it. He uses it mostly as a pacifier now so that is a challenge. We also should be meeting with behavioral medicine sometime this week too, to help with the emotional and pychological issues Zach is beginning to have.

We like all the doctors so far and we have already learned a lot. Today was interesting and crazy with all of the change of plans and doctor visits. I miss my hotel room tonight, I am staying with Zach at the hospital. Hopefully tomorrow will bring some answers and a plan.

Sunday, March 20, 2011

We are here at last!

So we got to the airport this morning around 7:45...flight wasn't til 11 but I thought it would take longer with security so I wanted to be early. It was awesome, we got through security and to our gate in about 20 minutes. Although, since I walked with Zach through the xray machine and he had on his beeped so we each had to have a pat down. :( Not the funnest part but I am all for making my plane ride safe!

Zach loved watching all the planes (or as he calls them, hellie copters) on the runway and he loved, loved the moving sidewalk! We waited a couple of hours til they started boarding our plane...which was a very small jet, it only held about 50 people and I do not reccommend it as your first plane ride, but oh well. We got to board first...I had to strap in his carseat and get him all hooked up to drain his stomach through his g-tube while he was getting his formula through his j-tube.

The flight was uneventful, mild turbulance but since the plane was so small, you could feel everything...the slowing down, the turns, every air pocket and wind was not my cup of tea. But it was short, we landed at around 12:20. We unloaded, and then had to walk to the other side of CVG airport to get our bags and rental car. We got to our hotel around 2 or is really nice. We are staying at Homewood Suites, we have a full kitchen and 2 bedrooms. And were the hotel is located, there is a walmart and several restuarants within a 1/4 mile or so.

We rode around for a little while this afternoon, I wanted to get a feel for where the hospital is. It is only about 12 miles from the hotel but with traffic it will probably take a good half hour to get there. The city so far is interesting. There are some beautiful buildings and bridges and the riverfront and then you see some rundown areas as well. I want to go exploring and take some pictures later in the week..when we get some free time. Tomorrow will be busy....we have a GI clinic appt at 8 and then he has an endoscopy at 1, but we have to be at the surgery center by 11. He can't have any more formula after 5 in the morning so he will not be happy.

We are looking forward to what tomorrow and the rest of the week brings..good or bad, it is why we are here. We will not know what will help til we find out.

Thursday, March 17, 2011

Why are we going

Just thought since the week is almost here, I would update everyone on why Zach is going to Cincinnati Childrens Hospital.
So here is his life in a nutshell. All throughout his infancy he cried and screamed. He would wake up to nurse every 2 hours at night, never took naps during the day and always acted like he was hungry yet painful when he breastfed. So around 6 months we switched to formula and went through several different kinds trying to find one that worked. Around 9 months the doctor realized his growth was being affected and he wasn't growing like he was supposed to. At 11 months we switched to milk since we were having no luck with formula. At a little less than a year he started having diarrhea, and by diarrhea I mean 8-12 pure liquid diapers a day. His bottom was raw and burnt, and he was sleeping all the time. At his 12 month appointment he fell off the growth charts so we started doing tests.
In April, around 14months he was diagnosed with Eosiniphillic Esophagitis at Duke Childrens Hospital. He went on a 6 week course of swallowed steroids and started allergy testing and removing positive allergens. He was still doing poorly so we saw a Dr at Brenner Childrens Hospital and proceeded with more tests. In June he had another biopsy procedure done and it showed he was deficient in some specific enzymes needed in digestion of sugars. In July he spent a week in the hospital for not eating and came home with a NG feeding tube and told no foods til further allergy testing.
He had allergy testing done in August and it revealed more allergens. We did try to do several food trials which all ended badly so he was put on no foods period. In September he ended up getting a G tube for feedigs since this is going to be long term . After several months of still not gaining weight and not getting anywhere we decided to try to get into Cincinnati. They have a special program for kids with Eosiniphillic disorders. In December we started seeing an allergist at Duke which was very helpful. So in the past couple of months he had testing for gastric emptying and he was diagnosed with gastroparesis and a J tube was placed in February for feedings.
So here we are, he is 2 years old and not allowed to eat any foods. He gets fed through his J tube about 12 hours a day..should be more but right now that is all we can do. His list of allergic foods has grown a lot....peanut, milk, egg, soy, wheat, carrot, tree nuts, white potatoes, turkey, beef, strawberries, cottonseed, cucumber, casien, grape, venison, corn and chicken. Wow!
At least in the 2 weeks he has weighed in at the same weight!!! That is such good news for him. So this is why we are going, this is his chance for eating food one day. They are the specialists and even though he has several issues going on...EE, Sucrose-Isomaltase deficiency, Gastroparesis, and Tracheomalacia, hopefully this hospital can help him.

Thursday, March 10, 2011

So many emotions

So things have been crazy around here...Zach's appt got moved up to the week of March 21st. When they called, I only had 3 weeks to get ready. We had our original appt on April 4 so it is going to be 2 weeks early. We have gotten most things ready..I got the doctors note (since Zach has a feeding pump which he wears, lots of formula, bags, supplies and epi pens) we need a note to get through security. I also got a 10 page email from Cincy with his itinerary, allery information, pre op physical and some other things that needed to be looked at. I got our flight plans changed, now we are leaving on Sunday March 20 at 11:00 am from RDU.

Well then today, a got a call from Cincy again saying they had to reschedule his appt til April 18....5 weeks away!! Needless to say I was very upset about this. Zach has gotten very tempermental when it comes to meal times, he bangs his head on the table and crys. I also catch him getting into the pantry and chewing on boxes and bags. So, I called his Pediatrician and told him the news and my concern with Zach. There are a lot of other factors as well. About 15 minutes later the manager of the Eosiniphillic program called and told us our week was still on, he was just going to get another doctor to do the missing part. He is supposed to call me back and let me know the new itinerary.

I am so relieved. We have been looking so forward to this trip for months..actually since November. I am very thankful for his Pediatrician for what he did by calling them. Please pray that this trip will help to bring knowledge and advancement in Zach's medical condition. This next week will probably be very busy with packing and getting ready but I will try to update as much as possible while we are there.

Saturday, March 05, 2011

Change of plans

So our Cincy plans have changed, the intake nurse called the other day and changed our week to March 21-25. That is two weeks earlier than it was supposed to be...we are excited and scared all at the same time.