05 June 2009

Long GI post. I got a little wordy.

We don't have a pediatric GI doctor here. I had heard good things about Chapel Hill and for some reason it stuck in my mind that there is where we should go if I ever needed to get Liam in to see one.

Once Liam's reflux and feeding issues reared their ugly heads and took on a life of their own, I figured it would be as good a time as any to get him in.

Unbeknown to me, you can't just call and get in to a GI doctor in Chapel Hill. You have to get your referral first, of course, but then they send you a letter telling you to call and make an appointment. But it isn't that simple. Oh, you can call, but you can't make the appointment. I know, it doesn't make sense.

See, you can call and tell them you have the paperwork now in order to make the appointment but it does you no good if they don't have any available.

Here's how it went.

I call and say I need to make an appointment. The person on the other end of the line (who makes appointments for everyone at Chapel Hill) tells me that they don't have any available. Huh, what do you mean? She says that all the available visits they had open have now been booked and to try back tomorrow to see if they have any new visits available. Uh, okay.

Next day I call back. I get the same message. This time I got wise and asked when they were booking appointments. She said they were just now starting to fill August (This was back in April). And they needed to know the Dr's schedules before they can book any. Hmm.

I call again the next day. The lady tells me they just filled the new days that they had open and to try again tomorrow.

The next day, I get the message that they don't even have any new days open yet for August.

Seriously, this kept going on and on until I told her to get me the GI department so I could leave them a message. I was tired of trying to make an appointment 4 months away based on luck! She transferred me and I left a lovely message with them telling them how stupid and inefficient their scheduling department was and that people like me don't have all day to keep calling to see if an appointment pops up. I told them to just make me one and call me with a date.

I never heard from them.

Shortly after telling my OT and PT my frustrations with Chapel Hill, my OT did some calling. I am not sure who she called or what she said, but I got paperwork in the mail saying I had an appointment very soon after her calling them. Little did I know that the appointment wasn't with the GI Dr. I assumed it was for GI since that was who I was trying to get Liam in to see. When I finally noticed it was OT, a few days before the appointment, I decided to keep the visit and see what she had to say regarding Liam's oral issues and his feeding issues. And then have my OT work her magic again to get us into GI.

I'm so glad I went because their OT was able to fast forward three months of waiting for a GI appointment and got us in within 2 weeks!

I showed up on Wednesday thinking I was meeting with just a nurse practitioner because the OT said the NP's really do all the leg work and then a Dr will oversee things.

What I got was a lot more than I expected. We saw the nurse practitioner and she was filled in with all of Liam's GI issues. She got as clear a picture of him as she could. She said we could schedule the g-tube and get it done quick with no problems. I didn't say anything. I just nodded my head. We continued to talk and decide to up his prevacid dose just a bit. We also figured we should go ahead and do all of the GI tests that are normally done for kids like Liam who reflux badly and seem to empty slowly. They are going to schedule an upper GI, motility study and a barium swallow. Then we will have to go back again for them to do an endoscopy.

After talking with the NP she recommended we see the dietitian. The dietitian came in and tried to get a good view of Liam's calories and nutrition. She didn't have much more to add to what we are already doing. Then the Dr came in. Which I didn't expect at all. She talked to me at length as well and then they had us go for lab work.

I took one look at the lab tech and KNEW she wasn't going to get the vein. That mommy intuition thing rules!

Except I didn't use it to my advantage and I let her poke him anyway. And nope, she didn't get a vein. She ran that needle all over under his skin and he didn't bleed even a tiny drop. The second tech looked at the crook of his other arm and decided to try his hand. She got it on the first poke. God bless her. They took 5 vials to check all of his nutrition levels, kidney and liver functions. If his diet is too poor, it will show up in his lab work.

We then went back to see the NP one more time and she said she looked forward to working with us. I told her I wanted to wait some more on the g-tube. I wasn't against getting it...but I want to make sure he definitely needs it. I have been very adamant about not getting it for a long time. And I want to be very sure before we proceed.

My heart has softened towards it so much. I know the Lord is helping me let go of my stubbornness about it. It also doesn't help that I am not sleeping. A year of no sleep makes the g-tube sound like a dream.

Either way, what's best is what's best for Liam. And I will do and accept what needs to be done in order for Liam to grow and thrive.

So, I am awaiting notice of his scheduled tests and then we'll go from there.

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23 weekers said...

Wow, what a great appointment. I don't blame you for not wanting the G-tube. I fought it, too. I finally gave in when Carver wasn't getting anywhere and wasn't gaining any weight. The feeds took over the entire day and there was no time to do anything but force him to eat. It was horrible. I must say that once I got the tube, Carver's little brain just seemed to come alive. I'm guessing it was because he wasn't getting proper nutrition before the tube. So, I was glad I did it and I still am. It allowed me to slowly work with oral feeds and I didn't stress if it didn't happen. The tube does not prevent them from eating all they want orally. We still do some of both for both of my kids. Some day, I hope to do all oral. On a positive note, the tube should get your formula paid for by insurance - so that's a positive if you're not already getting it paid for. It's the little things. In addition, the tube may get you nursing help and a MEDICAL card. In Kansas, you would definitely qualify with that and his CP and vision issues. Let me know if I can help.

BusyLizzyMom said...

Glad to hear you saw a GI and it went well. It sounds like a long appointment but at least a lot got done in one visit. Good to hear they didn't jump on the g-tube too quick and that he is gaining depsite everything. You will do what is right for him.
Are you adding oils to his milk (we have tried coconut oil, flax oil and 3-6-9 oils)? It helps with wt. gain, brain function and for constipation. Use the oils only if he is not at risk for aspiration as aspirating fats is quite dangerous.