She was in a great mood and excited that it was a "doctor day!" We brought along her activity backpack because I had no idea how long we might end up waiting. After a very short wait we spent coloring, we were called back by the medical assistant to see get her height and weight. Unfortunately, that was the trigger for the day. Jordan was terrified of the scale they used because it was designed for wheelchairs and she was not comfortable with the wide base. After working for about 5 minutes to get her to stand still without grabbing me, we finally got a weight...28lbs 12 oz. Next, we moved to get her height. Again, it was quite a challenge and the first reading was almost an inch under what I knew she had been measured at Mary Free Bed the week before so I told her that I was pretty sure she was 38 inches. We attempted it again and she measured just slightly over 38in...perfect!!
By this time, Jordan was completely "off." Basically, she was no longer able to communicate, but grunted and screamed; she was no longer able to walk, but needed to be carried; she was no longer her happy and cheerful self, but the child I have seen emerge from my own more and more as time progresses. This let me know that the next hour would be a long one.
After going to the room and going over things with the medical assistant, she told me the doc would be in soon. Jordan and I were in the room finding activities to keep her occupied. I attempted to read a book, but she just kept grunting and hitting the book and trying to push it out of my hands. I tried to have her chew her chewy tube to help calm herself, but she just threw it on the floor. I tried to talk with her about the room and the colors and shapes of things, but that only lasted about 30 seconds before she became upset again. She eventually, just jumped around anxiously by the door waiting for the doc to come in.
When he did come in, she ran to me and grabbed me by my legs. I picked her up to comfort her but she just grabbed tighter and tried to hide from the doctor. I was finally able to put her on the table while I explained to him why we were concerned and what we were looking to accomplish by being there. During this time, she was moaning and grunting and trying to grab me. I kept her on the table while he examined her and showed the intern her g-tube and explained it to her. Since one of our concerns was the severe staining on her teeth and it's possible connections to her reflux, we finally got her to open her mouth so he could see the stains.
After his examination he began explaining to me the various tests he wanted to run to try to figure out what is going on with Jordan. Since the only Upper GI was done when Jordan was hospitalized at less than a week old and still unable to eat very well, we never felt that it was an accurate test of what is really going on in terms of her reflux. He ordered her to have another one done so we can see how much and how bad the reflux is. He is also going to change her reflux meds from Prevacid to Prilosec to see if it makes a difference.
Next, he explained the other 2 tests that he wanted Jordan to have done and how they are performed. The first is an EGD. This will help us see what Jordan's esophagus and stomach looks like and take some biopsies. He wants to check and see if there could be some possible food allergies that are causing a reaction in her esophagus. He will also evaluate her Nissen Fundopolication and check for a possible hiatal hernia. He will also be placing a PH Probe Study for a 24 hour period. This will require us to stay inpatient at the hospital until it is removed. They gave us the option to do it outpatient, but I am not comfortable taking Jordan home with a tube coming out of her nose that must stay there since she has been so challenging lately.
After the doctor left, the nurse came in to schedule the procedure and go over all of the paperwork with me. At this point, Jordan was coloring and seemed to be okay. Although, that quickly changed. She became agitated and completely shut down again. The only difference was that this time she became extremely violent. She was hitting me over and over. I was trying to restrain her and she started to bite her arm. This caused her to eventually cry out in pain and then start hitting me again. This went on for about 20 minutes while the nurse attempted to explain everything to me and I went through my calendar and we found a date/time that worked for us, the doc and the anesthesia people.
It was so hard to sit there and watch my little princess become such a monster. It is so scary to see someone you love so much become someone you don't know how to help. More and more I keep seeing these episodes with Jordan. Multiple times a day there are complete meltdowns and temper tantrums. Several times a week there are hitting and self-biting attacks. Almost every therapy/doctor appointment is causing her to shut down and become unable to function. I am not sure if we are pushing her too hard with too many appointments or if as she gets older certain parts of her are changing and she is having a hard time coping with things. I am not sure if it is anxiety, anger, or just developmental, but I love her so much and it hurts me to watch her go through it.
We have discussed having her evaluated by a psychologist because her private speech path is very concerned about her. For several months, Juli has only been able to work with Jordan by taking her away from me kicking and screaming. There have been many episodes of her actually hitting Juli while trying to help calm her. Jordan normally calms after a few minutes and they have a great session, but there have been occasional times that she has taken up to 20 minutes to recover. We have also had some shut-downs when going to feeding therapy with Ellen. We normally proceed with feeding and she eventually comes out of it while eating. These things are all parts of Jordan's puzzle.
So now we wait for the Upper GI to be scheduled for a few weeks out and then her inpatient tests will be done near the end of August. We return to see the GI in the beginning of September and should have some answers by then on what we need to consider to help alleviate the pain she feels in her throat and know a little more what is going on inside her.
Please be praying for Jordan and our entire family as we transition into summer and a new schedule. Jordan seems to really need "home days" right now and we are trying to keep things easy. I am hoping that without school 3, 1/2 days per week, she will be better. We are planning to continue 2 speech sessions and 1 feeding session a week unless we feel that Jordan is just overwhelmed with it all. We may try to take a break if it seems too much.
