Charli had an appointment at BoysTown Research Hospital today to try and get a handle on what is going on with her tummy troubles. We have had a few tests done in the past with no answers so today she had an endoscopy and another procedure which I can't spell :-)
Her pictures came back looking well, we got to see her insides...how many people can say that! That is good news. Dr also took four or five biopsies along the way of the scope to test for various bacteria, infection, and other issues which may be causing her pain.
Before we had these tests the doctor did prepare us to know that some discomfort and pain may be a result of the neuroblastoma. However, we want to rule other things out before we just chalk it up to that. Going there today, it sounds like Dr has another idea of what she may be facing. Something called (are your ready for this Dr. Andrea Ripp) abdominal migraines. I will explain more below!
Chad, Charli and I went down the night before because we didn't want to get up so early and ship Harper off extra early too. This meant we got a little date with Charli!! She had fun, although she was missing Harper in the beginning of the night!!
Charli in her fancy PJ's!
as someone on facebook said...you can just look at this picture and know that God was there with us!! Chad opened up the blinds and this was their view! They were both super excited, and kept everyone nice and calm (well, they two of them anyway...I couldn't have cared less!!). It also made for a great picture!!
everyone at boystown was amazing. Charli even got a special "gas mask" for her monkey so that they could fall asleep together when she was put out for the scope. In addition they also let her pick a special stuffed animal when she woke up. She picked an alligator, so she could have a daddy and baby match! She came back to the room with her monkey and gas mask, alligator named crocky, and a new book! Before we left she got to pick out a new pillowcase too!!
What an amazing moment to capture...
Charli was SO brave. They wanted to give her some medication to calm her down before taking her back so she didn't have any anxiety. She had this one other time while when she had her port removed and the after effects were horrible. We basically refused this and said we thought she would do "okay". Turns out we way underestimated this. She rolled out without an apprehension in her body. The nurses said she talked their ears off before and after!
When she woke up she looked around and noticed she was the oldest one in the recovery room. She also noticed that "the room is sooo big if I knew how I could rollerskate in here!" Then she added that she doesn't know how to rollerskate OR fish!
She came back in good spirits. This is her thumbs up, which you can't really tell because she still is hooked up to her IV's and monitors. About five minutes later she asked "when are they going to take the pictures mom"...she didn't even realize she had left to have the procedures done! She was so confused! She has been put under several times, but this is the first she is able to communicate how she feels.
She is so brave...
Now, on to how they are treating her. Unless the biopsies come back to make him change his mind, it appears that he feels she has what is called an abdominal migraine.
Abdominal migraines are a type of migraine headache. They usually lead to typical migraines as children age. Only about 2"% of kids get this...imagine that! These type of migraines cause the pain to be in the belly (midline) and can later start to be a trigger for a migraine headache. They can cause bad stomach pain, nausea, cramping, vomiting, etc....much of what we have seen with Charli.
This can also cause other symptoms which we have also seen in Charli. One theory regarding abdominal migraines is that it is caused by changes in two specific chemicals in their little bodies. This is a natural occurrence in the body, and could also be a result of the cancer. They feel stress and anxiety can cause the change in these chemicals. (that right there will make you feel like a stellar parent, let me tell ya)
She will get a daily med to see if we can see an improvement. If she has sporadic pain we have something we can give her which is like tylenol for a typical headache, but for her tummy. If we do see an improvement, I am not sure if we keep on the meds or do something different. If we don't see improvement we may have to consider that this is an issue which is a result of the cancer and we will have to "deal". Either way, we will sit it out and wait.
Thanks for the prayers, everyone! Hopefully she will outgrow this and keep on keeping on without any trouble!