Lydia had her appointment with the airo-digestive clinic today. Thankfully we know all of the doctors there already so we didn't have to dig through all the family history and such, we were able to dive right in. First the pulmonologist, ENT fellow and speech walked in together. The pulmonologist and I started talk and discussed about the choking and such. She said that she wants to do a scope of Lydia's lungs. We know she is presenting in so many ways like her sister but we also don't want to overlook something either so we need to make sure there are not any structural problems. She said that Lydia sounded overall gunky and not as clear as we would like.
The ENT fellow did an exam of Lydia and said that there is fluid behind her ears. Lydia has had green drainage from her nose since getting the tube in her nose so we talked about that a little too.
Speech and I started to talk and the other two left. We agreed to keep everything the same from an eating standpoint. I expressed to her my frustrations with the questions from GI that keep coming up about g feeds. I also explained how upset I was getting that GI was not calling me back. She and I brainstormed some solutions together. I love how she really looks for what is best for the girls and is willing to help us in any way that she can.
Speech headed out and then the ENT and her fellow walked in. They said they would like to do a scope too while pulmonology is doing their scope. They want to start her on an antibiotic before surgery to try to help the ears drain and with nose drainage just incase there is anything growing in that to help prevent any problems.
The ENT fellow took us into a different room and they swaddled Lydia and dug out the ear wax in her ears. Lydia didn't really mind.
The doctors all mentioned how helpful it would be if we could get the tube out of Lydia's nose and move her to a GJ but none of them are in charge of that.
Here is the plan:
1. Start her an Zyrtec daily to help dry her drainage up and reduce the inflammation
2. Get a chest x-ray to have a baseline so we have something to compare it to when she gets sick or as she gets older
3. Start her on a daily inhailer
4. They gave us rescue meds for when she gets sick so we can start those right away (yeah for planning ahead)
5. Watch her for ear infections, if those start to crop up we will have to look into tubes
6. Lung and throat scopes next week in surgery (that will be on Tuesday)
7. Antibiotic for the next week
8. Saline and bulb suction her nose to try to help with all the gunk that is flowing from it due to the tube in her nose.
It was a very productive appointment! I like this clinic because everyone works together and you come out with a plan of care.
Brent and I met for dinner in Milwaukee because there is zero point of getting on the interstate at 4:30. It was actually kind of funny... as we were leaving Children's we were in the clinic elevator with a nurse we don't know. She asked Jilli where we were going and Jilli said to dinner with dad. The nurse responded to Jilli to enjoy her food and Jilli commented back that she would not be eating. She said it so matter of fact and like it was no big deal at all. I think it caught the nurse off guard, but to Jilli it was no big deal that she was not going to be eating, she was just looking forward to playing ipad which to her is far more interesting then food. I think sometimes it annoys her that everyone else eats, not because she wants to but because to her it is a waste of time, but she does enjoy when we go out to eat because she gets to play iPad.
On our way home GI called. Oh I was so happy to her the doctor's voice. She said she just found out today that I have been trying to get a hold of her. We started off talking about Jilli. She appologized that the surgery made Jilli worse. She said she didn't think that would happen and was just trying to help Jilli and she feels bad for pushing us to do this. She said for now all we can do it keep draining Jilli's stomach, support her lungs as well as we can (we were down to one neb today... yeah!) and just wait for the Botox to wear off. She said we will never be trying this again with Jilli which made my heart do a big sigh of relief. She did bring up that at some point when Jilli is having another surgery anyhow that we need to look into doing a separate J tube. GJ tubes are not meant to be a forever fixx because they how the pylorus open and they have to be changed in IR every three months which means that she is under an x-ray machine every three months and while they use as little radiation as possible it is still radiation. Having a separate G and J would mean not needing to go to IR for tube changes. While we don't need to do thing asap because she does handle the GJ tube well, it is something we need to think about for the future. We agreed tonight that J feeds are what is best for Jillian and messing with things just hurts her. We talked about how Brent and I feel like if J feeds is what helps her to grow and protects her lungs then we are ok with that as a long term plan. She also said she would look at the chest x-ray she had in the ER last week to see if she notices any GI issues on it and to double check that her GJ is in the right place after surgery.
We talked about Lydia and how the choking has decreased and how draining the g is working well for her. We talked about getting Lydia moved over to a GJ tube and about how all of the other doctors talked today about how beneficial that would be. She said that she would talk to IR and see what she could do to get it done sooner rather then later.
This conversation did a lot of good for my heart. She never asked when we were going to try g feeds and agreed that j feeds is what is best for the girls. All the crazy things I am getting from the nurse and GI fellows I do not think is coming from our doctor... I have no clue where it is coming from, but when our doctor and I talk it is totally different then when I talk to anyone else. I was getting really frustrated with the department (and the lack of the nurse getting back to me still needs to be addressed, but the bigger need today was a plan for the girls) but my confidence is renewed after talking to the doctor today. She really cares about my girls and doing whats best for them (and that shows since she called me at 6:10 on a Tuesday night from a blocked number, so most likely her own phone).
Tonight my heart feels calmer. Tomorrow I will call Ronald McDonald House to put our name on the wait list for next week since Lydia is in surgery on Tuesday and has a GI appointment on Wednesday. I like plans and right now I feel like we are going in a good direction for both girls. Thank you for all of the prayers. Pray for our hearts as we get ready to send our baby into the OR for a second time in a month. Pray that IR realizes a GJ tube needs to happen sooner then later, and prayers that her new meds help her.
On the way home Brent and I stopped at pharmacies. It ended up with the antibiotic at one and the rest at another so Brent and I divided kids and each hit a pharmacy. He was sweet and he and Jilli got me nail polish and chocolate too!
Its been a busy day... time for bed :)
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