Sunday, October 31, 2010

The end of October

The last few weeks have been very crazy around here. Zach has been vomiting a lot more, he dropped back to 22 lbs and has been in more pain. He went to the GI about 2 weeks ago and they pulled his food again, formula only and on a 24 continuous feed through his pump. He is not allowed to drink any by mouth, except for a bottle at nap and bedtime for comfort. He also has had some more symptoms start, he has starting getting unsteady on his feet, he falls a lot more and has muscle cramps in his legs. And even on formula only again, he still is vomiting. Wednesday he vomited all day and almost had to be put back in the hospital. He is doing better now but still vomits at night.
He went back to the GI on Friday and he is concerned about all the vomiting and it just seems like every week he gets a new symptom instead of getting better. So, he is scheduling a barium study through his g-tube to check for anatomical issues and malrotation. He is also going to see a neurologist to rule out any other "bigger" issues. So hopefully this week will involve some tests and appts to get us somewhere.
On the other note, Today is Halloween and the kids had a blast trick or treating....Zachary was a monster and his big brother, Luke was a robot. Instead of candy they got bags of toys so they still got to enjoy the fun of trick or treating just without candy.

Tuesday, October 19, 2010

Dear Lord

If you know me, you know that I am not a public religious person. I do believe in God and Jesus but I do so in my own way and have in the past chosen not to participate in churches or other religious functions. I believe that I have been tested on my faith several times in my life and sometimes it is hard for me to trust in a God who has not answered my prayers or prevent my hurt feelings. Since my son has been sick, I am more than ever tested on my faith and have been looking for more reassurance. I feel at this point, I need all the help I can get to make my little boy better. So, even as a person who believes but needs to see, I am asking for prayers...I am praying more than ever now, and I pray that I am not let down agian.

I am praying now, to a God who has in the past let me down.....Dear Lord, I pray that you heal my son, I pray that you make him well, I pray that he will be able to eat food, normal food...not food through a tube in his stomach. I pray that you take away the pain that he has, all the stomach cramps, the vomiting, the diarrhea. I pray that he can be normal, that he can go to school and enjoy life. I cannot imagine my life without my sweet baby Zach and yes, he was a miracle that I had not asked for and was not expecting but now I am so overwhelmed in the joy of such a happy free spirited boy. I pray that give him a long life and let him be happy and healthy. In your son's name I pray. Amen.

Our GI appt today

We saw Dr Glock today, not our normal GI doctor but he has seen Zach before when he was hospitalized so we know him. He instructed us that he thinks that Zach' s stomach needs to heal yet again, and we shouldn't push anymore foods. He also took bloodwork today to check his CBC and electrolytes. His plan for the next month is:
1. Pull all food (chicken was his only food)
2. Strictly formula only again
3. Continuous daily feed of 40 ml/hour on his pump
4. 99% of feeds should be through his tube, so no sippy cups of water and bottles are for comfort not nutrition, so don't push them on him
5. At recheck appt....possibly gastric motility testing, barium studies, and changing his G tube to a GJ tube

So overall it was pretty overwhelming. We are just taking steps backwards and not making any progress to getting him to eat food. I feel like he is not getting better and nobody can tell me when or how he is going to get better. His pediatrician told me today he is a double enigma.
We go back on December 3rd so until then we are yet again just waiting..............

Saturday, October 16, 2010

Oh, I need sleep

Poor baby has been up crying and vomiting for the past four nights. He is now on Zofran and a medicine for stomach cramping and we are waiting on that to work. He also had to go to a lower rate on his pump, so he is now getting 1 ounce/hour instead of 2 ounces/hour so he has to be hooked up twice as long which is 20 hours. He is taking that better than expected, he is wearing a mini backpack with his pump and bag in it and it is not slowing him down any. Last night, on the zofran he didn't vomit which is good but he still woke up many, many times crying and shaking.
Unfortunantly, we are not sure why his tummy is hurting. We are guessing it is from the venison food trial 2 weeks ago and it just messed his tummy us really bad. Hopefully, he will start to feel better really soon.

Wednesday, October 13, 2010

My baby

Today was Zach's weigh in for the week...last week he lost a half a pound, and this week he lost another 4 oz so that is almost a pound in 2 weeks. I am so frustrated with all of this, my baby can't keep weight on, he can't eat food, he can't be a normal 19 month old baby. It feels like we are just fighting a neverending battle and we keep losing. We are supposed to keep doing food trials but every food we try he gets diarrhea for a week and loses the little bit of weight we just got him to gain.
It is so difficult fighting this because on the outside he looks and acts normal. He is happy playing and running but his problems are on the inside and sometimes it's hard to explain that he is really sick when he doesn't look sick. But believe me, when you have to change dirty diapers with diarrhea all day and hold down your baby when you clean him because his bottom is so raw  and stay up all night listening to him screaming because his stomach hurts you realize he is sick and food is making him sick.
I try to imagine a life with no food, our daily life is so revolved around food. I try to imagine his birthday's and holidays and sending him to school and it breaks my heart that he can't have normalcy in any of those events. With Halloween coming up, we have been trying to plan how we can let both boys dress up and go trick or treating but have to convince Zach that he is cannot eat anything he gets.
I try not to complain about my sons' illness because it is not worse, I could not imagine having to go through a child with cancer or worse but lately it just feels like my son is not getting better and nobody understands how hard his life is or what it would be like to live in his shoes.

Tuesday, October 12, 2010

The past week

This past weekend, we went to Topsail Island. It is so pretty and calm there, so far away from the reality of the crazy life here. The kids had a blast, they loved playing in the sand and watching the waves. Unfornately, we all ended up sick with colds but everyone is getting better. I loved our time away with our boys, it's rare to get family time these days.

Zach had his 2 week recheck with his surgeon today at Brenners'. His tube looks great and he is doing so well with it. He doesn't even act like it is there anymore and now since it's been 2 weeks he can finally have a bath again. He doesn't have to go back for 4 months, that's when he teaches me how to change his tube..kinda scary, but I will do anything for him.

Also, on the food trials...we tried egg and he failed, then we tried chicken and so far the chicken has been going good...we call it a pass and then we tried venison and he failed, then we tried asparagus and he will not eat it at all so that sucks since our food choices are so limited to begin with. Right now we are at a stand still, he was eating plain natural popcorn for months now but for the last week he has been really sick and not digesting it so he is off that now too.