Too Much

When do we decide that all of this vomiting is just too much? How do we know when it is more than "inconvenient"(the word one of our surgeons used to describe it to me)? When do we say its time to put a stop to it and look for the cause of this symptom? When do we find someone out there who will take a serious look and try to get it to stop? This morning. That's what Dave and I have just decided.

Ash woke up vomiting again. Something is going on! If it is decided that all is well and this is our normal then I'm ok with that. I'm praying for that. I just have to know that all is well and that a serious cause is not being over looked.

We know that it is a symptom of rejection, but she has no other symptoms of rejection. I keep trying to reassure myself that there is no way she could slip into rejection because she is on 3times the amount of Prograf she has ever been on and on Cellcept and on Prednisone. All to protect her organs from rejecting. She has never been under this much coverage. Ever!

The headaches are a symptom or side effect of 2 of the 3 meds listed above. We know she is having them because of her behaviour. She doesn't talk but she communicates with us very, very well. She hits her head continuously. She pulls her hair on both sides at the same time. The look on her face is a sure sign that her head is hurting. What can be done about them? Nothing. She has to take the meds for organ protection. Can we add another med to cover headaches? Not for a 2 year old and even if we did what side effects would she then suffer from it? Ashley does receive regular adjustments and always has. Dave does amazing work with children in our office and gets great results, but without removing the cause of the headaches which in Ashley's case is a medication that is required for her to maintain life the headaches keep coming back over and over again. Its daily now. I think it used to be every once in a while, but even her therapists can see the change in her.

This morning we are going to shoot a picture of Ash's abdomen in hopes that we will find a coiled up J-tube(part of her feeding tube) and be able to remove it and have the vomiting stop, but if that is not the case then we may be headed over to Shrieveport to join our sweet friend in the hospital until we can get the vomiting to at least slow down. I don't know what else to do for her. As always we hope and pray and even hold our breath in hopes of having this issue resolved or managed without a return to Omaha.

Please pray for Ash today. No matter where we end up she will require lab work and a possible IV for dehydration. Her veinous system is shot and it is very, very painful and difficult to get blood from her. Starting an IV is going to be a nightmare. My heart is breaking at the thought of a possible admission. So heres hoping its just a silly feeding tube issue that Dave and I can remedy this morning and she can stay here at home where she is the happiest.

Good days can turn on a dime and stability doesn't last forever. That's one lesson I have learned really, really well. If we end up at the hospital I will for sure let everyone know. At this time she is not dehydrated, but we have to monitor her closely. Thanks for praying for our pickle today.