Monday, June 27, 2011

He is still fighting

At this point I am beginning to wonder if we should just call Brenner Children's Hospital home. We have spent more time inpatient here than at our own home in the past 3 months. Zach is still here this stay, he was admitted on June 16, and here it is nearing July and we still have no answers. The doctors are working very hard to figure him out but he is very complicated.

This week he has had several tests done to try to eliminate some issues. He had an EEG done to check for seizures, they glued little probes all over his head and then wrapped his head up and hooked him to a big computer. He also had a camcorder on him all night and if he woke up crying or vomiting, I had to push a button to mark the time it happened. He still lookd pretty cute in his new style.
It turned out that he had no seizure activity, which is good.

He then had an upper endoscopy, colonoscopy with biopsies and had the antroduedenal manometry catheters placed for motility testing. He had to be hooked up to another machine for 24 hours to measure the contractions of his stomach, duedenum and small intestines. They gave different medicines to him to stimulate contractions and the test turned out to provide that his motility is working good . That is good news but still leaves us in the dark about what is going on with him.

Over the weekend, the dr's wanted to try to try some pedialyte running into his J tube. He did ok with it running at first, they only got up to 10 ml/hr but after a while he started to get really uncomfortable so they stopped. A couple of hours later he started vomiting and continued to vomit all night. He also spiked a 104 fever and got the chills. The on call residents had to give him extra fluids due to dehydration and hook him up to heart monitors since his heart rate was really high.

He continued to run a fever on and off yesterday so the surgeon decided to remove his central line. He already had an infection on the skin around the opening that wasn't clearing up and now with the high fevers and positive blood cultures for a blood infection the best option is to take out the line so the infection will clear before it spreads to organs. The transport team came and placed an iv in his arm last night to sustain him until he can have another central line placed. Then the surgery resident came and pulled out the line. And yes, I mean they just pull it out. So that wasn't pleasant at all for Zach. My poor boy :(

Today, he is still very fussy and still has a fever on and off. They came by and did an echo of his results yet, and they pulled blood for another blood culture. Without the central line, pulling blood is a lot harder. Zach is hard to get blood from, and he is swollen from all the fluids so it was no fun.
The GI doctor also came by with our game plan for this week. He wants to take advantage of our time here and time without the central line to hopefully make progress with J tube feeds. Once his fever breaks and stays gone we will try some J tube feeds and it might well, or it might not...we won't know till we try again. The Dr is thinking since the motility is good, it could be a problem with his nerves or another system affecting his digestive tract.

At this point it is crucial that we do make some progress with nutrition, if the J tube feeds do not work we have to revisit what his long term nutrition needs will be. Being on TPN is not good and it will eventually destroy your liver so that is not a good option but right now he cannot survive without it. We will see what the rest of this week holds and probably next week he will undergo another surgery will be number 9, to have another central line placed.

Tuesday, June 21, 2011

Hospital Boy

 This hospital stay is turning into an adventure of tests. Luckily, he is taking it all in stride and being very good. We are just hoping one of these tests has some anwers.

Friday, June 17, 2011

Hospital again :(

Zach is back in the hospital this week. He got admitted on Thursday afternoon for pain management. He is having a lot of pain, especially at night..which is very strange but his regular meds are not working so they admitted him. He is on neurotin, which is a nerve medicine to try to control some pain and then he gets morphine as needed. They tried a trial of atavin today which is like valium but he must be allergic to that. He got sick and had a major attitude change so they took that away. They are going to try to do some tests on Monday or early next week and maybe they will help find some answers.

His GI doctor came by today and pretty much said he has no idea why he is having these symptoms, why his body is not working and no idea what to do about them. They are still trying to get more motility testing scheduled and some more barium studies. They also want to do colonoscopy with biopsies and talk to his allergist/immunologist about his IGE levels being so high. He mentioned he might want to check for hyper IGE syndrome. We will just have to wait til Monday for anything to be done, test wise. Til then we just manage his pain.

Sunday, June 12, 2011


Zach has been having a lot more pain lately, we are not sure why he is having pain. Could be cramps or burning from the bile backup. He is on tylenol with codiene and the Dr's just put him on some medicine for stomach cramps. He has been on it since Friday, and I think it helps a little but he is still in some pain. And he is also having this side effect from the meds..painful urination, he is really this unlucky :(

Thursday, June 09, 2011

Motility, what motility??????

We went to the hospital at 6 am on Tuesday for motility testing. Motility is the way your stomach and intestines contract to move food/fluid through. We have been wondering about his for a while. They did an upper endoscopy and placed the catheter into his G-tube hole for what is called antroduodenal manometry. After surgery he was transferred to the floor where the nurses hooked him up to a computer and a special machine that put water into the catheter and slowly into his stomach and intestines to measure the contractions. Due to his anatomy and recent surgeries, the Dr could only get the catheter to go a little ways and only 4 out of the 8 probes were in his intestines. So they sent him down to radiology to make sure he didn't have any blockages, he didn't so they decided to manouver the catheter farther into his intestines with guidence from the xray. This was not pleasant to say the least, poor baby he was in so much pain. They finally got the catheter in and him back in his room and hooked up. He was on the machine for about 2 hours and then gave some medicine to stimulate contractions in the stomach, then about an hour later they gave medicine to stimulate contractions in the intestines.
The rest of the night was horrible, he woke up screaming in pain about 7 times..pretty much every hour and then about 6 am he started throwing up and threw up about 9-10 times before 7 am. The Dr came in about 7:30 and decided to cut off the test, Zach was still in a lot of pain and needed a break. Luckily they did get some readings from the machine, unfortunately not anything good. Apparently, his stomach has contractions but in no order and his intestines have retrograde contractions, which mean they go up instead of down.
The doctors discussed him and decided he needs a few more tests, right now they do not know what to make out of his results so he is having another manometry test done on the 21st where they will place a smaller catheter through his J-tube hole and deeper into his small intestines to measure farther down. He also needs another barium contrast study done and possibly a colonscopy with biopsies to check for eosiniphils in his lower intestines.
So unfortunately that means more hospital stays and no treatment for now until they can figure out this mess.

Sunday, June 05, 2011


Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me, this is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me, this is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this

Sometimes, in these past crazy weeks of hospital stays, dr visits, and infections it is hard to believe and keep faith. For once, I just want a positive week for Zach without something happening or going wrong. I know God gave me Zach because he knew he was going to be special and he knew I needed him as much as he needs me. As many issues and struggles that Zach has and deals with everyday he is still HAPPY. Thank you for that, it would be very hard if he wasn't happy.
He tries to be normal, we try to make everything he does normal for a two year old. Last week when his site infection was still not getting better and we had to make three more trips to his doctor for more antibiotics, my husband had to remind me that yes, there are some things he cannot do. Even though we try our best to keep him normal, he is different, he is special and he has special needs.

Hopefully the next couple of weeks will bring some better news, better times and an end to this infection. For now, we will just singing this song.