A Little Something Extra

Friday, May 2, 2008

Too many cooks

If there's one thing I miss about the NICU, that would be the opportunity to get all of Micah's caregivers in a room at the same time to discuss his care. Here are who we are dealing with these days: pediatrician, cardiologist, gastroenterologist, endocrinologist, general surgeon, cardio-thoracic surgeon, speech therapist, physical therapist, and home health nurse.

Micah's reflux is getting worse. He screams a lot during his feeding sessions. He's refluxing up but not spitting up too much. It seems to go sort of into his sinuses. That must really hurt. I asked the home health nurse on Wednesday about increasing his dosage of omeprazole (Prilosec). The original Rx was written by his pediatrician, who was out on Wednesday. The ped covering said since he was being seen by GI and he had heart surgery coming up, they didn't want to mess with his med. Okay, so let's try cardiology. Nope, they don't want to mess with it because that's not their gig, but it doesn't affect heart surgery if someone else decided to raise his dosage. Okay, let's try GI. Finally, this afternoon the home health nurse received word from the GI nurse that his current dosage is sufficient.

Excuse me... have you tried to feed this child? And how is it possible that the dosage is still correct if he has gained over a pound since the last increase? Long story not short enough, I told a nurse in GI late this afternoon that if no one called me back within 10 minutes to authorize an increase in his dosage or offer another solution, I would have the on-call gastroenterologist paged. That wasn't what she wanted to hear close to close-of-business on Friday (I inferred that she was fairly ticked off). Anyway, it must have worked, because I did receive a call from Micah's GI doctor a few minutes later. After a long conversation, which included him questioning why I didn't try EleCare longer than three days (ummm... maybe the blood in his stomach was something I wasn't comfortable with?), we finally got to the dosage concern. He thought if it weren't for heart surgery, he would consider starting him on reglan. I finally convinced him that Micah's increase in weight should justify an increase in the prilosec so he calculated how much Micah should be receiving based on his weight. What do you know? Rather than 1.6ml's, he should be getting 2.8ml's. That's a pretty big difference, don't you think? And I think the problem is that no one bothered to calculate based on the concentration of medication in the suspension. I think they assumed a higher concentration than is actually in the suspension.

If you are sensing that I'm not a big fan of the medical profession right now, that's actually not true. We had a good trip to Milwaukee today for Micah's pre-op appointment. We really liked the nurse and PA who cared for him today. And the phlebotomist is the same one who did a great job on Tuesday (we waited a long time to get in, but the result was positive). He also had an EKG and a chest x-ray. Micah's least favorite part of the day was the left-side-lying x-ray where they held his hands above his head. For some reason, he dislikes having his hands above his head anyway, so holding them down while lying on a hard table was just not fun. Otherwise, he did very well. We didn't get to meet the surgeon because she was called into an all-day surgery. But she did call us this afternoon and asked if we had any questions prior to meeting her on Monday. She seemed very nice.

The PA told us to expect Micah to be in the hospital for 7-10 days, two of which will likely be in the PICU. But I'm going to pray for a special Mother's Day present, which would be having him home after 6 days!


Michelle said...

You are doing such a great job juggling all the medical info! I'm guessing it feels very overwhelming - but you are doing great!

I'll be thinking of Micah on Monday!

Kris said...

I know what you mean about juggling all the docs! You are almost there. You are on the homestretch. It will get tougher before it gets easier, but then, once Micah's heart is perfect, you will start to see the improvements! It will be so nice when you can eliminate some of the heart meds. I remember when Erin started dropping meds (she was also on reflux meds....in our case it had a lot to do with the mixing of the other meds causing her to vomit and reflux) and how relieved I was. Then, when she was able to eat orally, I wondered what I was going to do with all of my spare time! I was spending hours each day with feeding alone, as I'm sure you are. Then the home health nurses stopped coming and we suddenly felt free again :) Little by little, our lives became normal again. You will get there! BTW, we also loved our cardiac nurses and Michael, our PA at CHOW. You are earning your RN degree whether you wanted to or not :). It is all part of the plan that God has for you, and all for the greater good. Trust in Him and I know all will be fine. I know Micah will do beautifully on Monday. We will continue to check in to see his progress and know what to pray for! Blessings, Kris

Melanie said...

Good thing you are on top of things...but I'm very frustrated for you. You should not have to worrying so much about his care.
I will pray he is home on Mother's Day. Logan was my Mother's Day gift!

Our Joyful Adventure said...

Micah is truly blessed to have a mother who is so proactive with the doctors. You are taking great care of him. :)

Andrea Marcks said...

I can not even comment. I don't know what to say. It amazes me that you have this incredible strength. Not to mention your ability to deal with everything that is going on. God has not only blessed you with gorgeous children, but he has blessed your abilities as a mother. You are a true inspiration and I look up to you. I hope you realize how special you are. Micah and Nathan are so lucky to have you for a mother. I will continue to pray for you and your family - and to thank God for giving you everything that makes you...well, you.

ATLKrafts said...

you are such a great mom, Jennie. It is amazing that you are able to keep it all straight, and I love that you are so insistent until you get the answer... that is awesome!