Thursday, August 04, 2011

GI Update: If it ain't broke don't fix it

Our third appointment in July was with the GI Doc. This was not a follow up like the rest of our appointments. This was the first time we had met Dr. P. When we were at the CP Clinic last December the dietitian recommended that we see a GI doc. She said it would be a good idea to have a doc that was familiar with Emily that would keep an eye on her g-tube for any questions or issues. My first thought was: "Great, one more appointment!". We have recently started working with another dietitian and she mentioned it to me as well. She said that the doctor would probably want to see Emily every 6 months or once a year since things are going well. So, I gave in and scheduled the appointment.

One side note: Emily used to see a GI doc when she was a baby and we were trying to work through all of her feeding issues. It got to the point where the appointments were a nightmare. Mike would wait for hours and then find out the doctor had to cancel. Then it was impossible to reschedule. So we just stopped seeing her. Once we worked through her feeding issues (with our nutritionist from First Steps) we just didn't see the need for the appointment with the GI doc.

Of course, the first step of the appointment with Dr. P was to weigh Emily. Emily now weighs about 38 pounds, 6 ounces. I think that puts her at about the 80th percentile for weight (my back can certainly testify to that!). Her weight for length is roughly around the 25th percentile so she is doing well. The girl is healthy, there is no doubt about that!

In short, I loved Dr. P! He had a great attitude. He said he was perfectly happy to sit in the background and jump in only if I needed him. He said Emily is doing fantastic and he had nothing that he would change or add at this time. He was thrilled with her growth and that her g-tube site looked great as well. He was very easy going and really just wanted to be a resource for us. I wanted to ask him if we could come to him for all of our appointments. haha!

The one thing that I needed to discuss with Dr. P was a swallow study for Emily. The therapists at school and Children's have been asking me about sending her for a swallow study since Emily started. (The last time she had a study done was in the NICU.) There is one speech therapist at Children's that has been adamant that she get one. She is worried that Emily may have a delayed cough when she eats. That she is holding food in her mouth and it could go into her airway instead of her esophagus. I have been resistant because I don't think she needs one. I have not seen any signs from Emily that cause me to be concerned. So why send her for a test that is not necessary?

Well, the day after I found out Dr. V wanted to refer us to an orthopedic surgeon, the speech therapist presented me with a referral for a swallow study. I did not have the energy to argue with her, so I just told her I would discuss it with Dr. P when we met him the following week. Well, Dr. P asked me all the usual questions: Has she ever aspirated? No Is she sick a lot? No Has she had pneumonia? No I was very honest with him. I told him that the only reason I would consider getting a swallow study for Emily is because I am so tired of having the same conversation over and over again. So if this would get people off my back, I would be willing to do it. He was very understanding.

One other thing that we talked about was Emily's oral feeds. He asked if I wanted to increase those. Right now, she is only eating about 1/2 jar of baby food twice a day (on a good day). I said I wasn't sure if she could handle more. He works with the Feeding Team at the hospital and said that the swallow study could be the first step to figuring that out. If all goes well with the study, then we can work with the feeding team to improve Emily's eating technique and increase the amount she eats by mouth. He was perfectly happy to leave the decision to me. He said we don't have to change anything, but if eating more is a goal that we want to work towards, he can guide us with that. It was so nice for a doctor to discuss options rather than cramming their opinion down my throat!

Emily will have the swallow study next week. I am a bit nervous about it because Emily has not really been interested in eating lately. Add a strange place and a bunch of people staring at her and I am not sure how successful this test will be. Guess we will just wait and see!

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