Brown and Pink Polka Dots : GI motility clinic

I write this post as tears well in my eyes. I am utterly overwhelmed right now. I normally just do all of this. I juggle the many pieces of our lives and do it because that is what needs to be done. I don't fall apart often. We are blessed with so many things and I try to focus on all of our blessings but every once and a while I get overwhelmed and have a good cry and that is where I am at tonight.

It does not help that I came down with bronchitis Saturday on top of it, but that is a result of last week's stress.

Today we visited with the GI motility doctor at Children's. I really value the doctor we met with today because I feel like she is one of the best listeners on our team. Not to say that our other doctors are not amazing, but there is just something different about her. Normally I really struggle before big appointments with worry that the doctor is not going to hear what I am saying, but I felt really at peace about that because of how well she has listened in the past.

We saw this doctor first when she was a fellow at Children's in the motility clinic. She also helped to do multiple gastric motility tests on Jillian so we have spent a fair amount of time together. Up until now she has always worked under a doctor who I did not love nearly as much as I like her, however she is now on her own!

I value how she walked in, sat down in the chair across from me and just talked. She asked questions, I asked questions, she knew Jillian's history, and she wanted to know more then just the GI stuff. I value when a doctor asks about what is going on in all areas because Jillian's body all works together, her GI system is not separate from her lungs or her limbs. It all works (and fails) together.

We were sent to the motility clinic to talk about a fundo again. Do a search of this blog and you will learn quickly about how I feel about a fundo and Jillian. I still do not think it is what we HAVE to do right now. It is a big surgery with a lot of risk for a little girl who we really don't understand in many ways how her body works and why things happen the way they do. I knew my opinion coming into this appointment but was hopeful that the doctor would have some other ideas to bring to the table about how we can best help Jillian.

One of our first changes was determined early on. Jilli has finally gained a little weight and her one medication that is calculated based on weight has not been upped in a long time and I could tell by how her body was reacting that it was time for a bump in does. Jilli will love this because it is her favorite mouth med so I am sure she will not mind getting a little more of it. I am hoping this calms her reflux a little more since we have been seeing more random spit up again lately (like last week when she grabbed my hand and puked into my palm...)
We are also changing her gastric motility med. This was my main goal of the appointment. What she had was working... kind of. See she has been cycling two different meds in two week alternating periods for over a year. The problem is that the one med has some less then desirable side effects (like less sleep and more crabby). The other med has some scheduling pains (must be given every 8hr) but it works well for her and other then needing to be given 3 times a day it does not have draw backs. The dr decided that based on her symptoms the every 8hr med was the best choice and to just have her on that med continually. We are also going to up the does of that med as well. Once I figure out what pharmacy that script got sent to I think this will be a good switch for her.

We discussed the fundo. The dr said that while yes Jillian is a candidate for the surgery (documented reflux and aspiration pneumonia from reflux) she also has multiple things that point to not doing a fundo (gastric emptying problems, muscle issues, top down aspiration). At this point I still don't feel like we have enough answers to go ahead with this surgery. We talked about repeating her gastric emptying study because we are still a little perplexed by the last one, however we are waiting until the dr can meet with other GI motility doctors to see if it is really worth our time. With putting something in Jillian's stomach there is always a risk of it going up and into her lungs. It is also a long test where Jillian needs to lay still for several hours unsedated.We also talked about how if they did a fundo that she might need a surgery to open the bottom of her stomach more to try to prevent the gastric emptying problems but now we are just talking about 2 large surgeries. They gave us the option to schedule a surgery consult if we would like to talk about it with surgery but at this point we are not going to.

We talked about other options. The medications bethanechol and reglan were both talked about. We might look into those further at some point. We talked about gastric pace makers and other down the line options but she is still little and has a lot of unknowns.

So for now the plan is to do the med changes and keep doing what we are doing. The doctor is going to talk with the other doctors in the department and see if they can collectively come up with any better ideas. Right now for me the medication change is enough. She is stable. She is growing, very slowly, but growing (still around 5th percentile for height and weight).

The nurse and I talked about how IR told us we were going to have to change tube brands. The nurse knew nothing about it (this is a nurse who is very involved in the department) and she gave us some suggestions. We will see. I am still not happy about having to change tube brands but I am trying not to be a grump about it.

I am sure you are wondering at this point why I started this post with tears in my eyes (I am doing a little better now, I ate a connoli). There are multiple reasons:
-even though today's appointment went well, it is still emotionally hard. Jillian has no great answers, with her it is looking for the one that sucks the least. I am grateful for a doctor though that is willing to look for the Jillian answer to a problem and not just expect Jillian to react like everyone else. That means a ton to me.
-I realized we had also talked about adding CoQ10 to Jillian's mix but by the end of the appointment we forgot about it so it did not get ordered so I will have to contact the doctor's office to figure that out. I don't like having to bother them, they have so many other things that they have to do.
-I need to track down where Jillian's meds are being filled at. Walgreen's has no record online of receiving them and the other pharmacy we use is closed for the day and located in Milwaukee so if they were sent there one of us will need to go there to get them. Its fine, just one more things to figure out tomorrow
-I am still waiting for pulmonology to call me back. I have hinted a little in other blog posts about what is going on there. There is some concern that she is not keeping her o2 levels where she needs to while playing. Remember Jillian is not crazy active like most two year olds. We left work at 12:30 today and she sat in her stroller or carseat from then until we got home around 5pm. She did not complain about this, she just sat. Out of that time she slept for about 40min. in the car. During PT on Monday she rested, kicked a light ball 2ft and walked quickly (Jillian does not know how to run) for about 40ft and her o2 dropped more then her therapist thought it should. We also spot checked her during the weekend with our pulse ox so we went into therapy Monday with an idea of how she was doing (checking pulse ox during therapy was planned for Monday based on past concerns) and it showed a sizable drop when she was active (playing, walking quickly, ect). Her PT asked me to contact pulmonology. I sent a message and the nurse called me back. She said that Jillian's doctor was out but she did not feel this could wait til her doctor gets back next week so she was forwarding this on to a fellow and they would be contacting me... this was Monday. I know these people have a ton to do and Jillian is probably not on the top of the list but I am one concerned momma who is sitting here waiting for a call. Her numbers should not be dropping and it could explain why she can expel energy for short bursts of time but then is absolutely drained after that. Her therapist is concerned about pushing her too much in therapy with o2 levels that are fluctuating. I am normally good about waiting (we have been waiting for genetics for a while) but I feel like this is kind of a big deal and I want to know the plan.
- Speaking of genetics, we found out last week that there are currently two issues with the stuff we were doing the genetics. First a lab is messing around with release of records and is being a pain. That should be fixed quickly, but a pain none the less. On top of that we found out that stuff did not get submitted to insurance when we thought it was going to because they are short staffed in the department right now so we are not even past the getting insurance approval step right now which stinks because the test takes 3 months to run and we were hoping that since we visited with them in February that we would be getting closer to an answer however we are still at step one. I am sure God has a great reason for the timing and I keep reminding myself of that, but honestly I just want to know.
-We found out last week that Brent needs some sinus surgery done asap and we find out tomorrow when that will be.
-There is some other rather big stuff going on right now too that I don't feel it is appropriate to blog about at this time, but are weighing heavily on my heart and mind. These are things that I have no control over yet have a large impact on our lives.

Thanks for reading this. Thanks for praying. We all have stuff. Everyone has stress in their lives and no one's "stuff" is larger then anyone else, it is just different. Thank you for thinking about us and our stuff. It really means a lot to me.