There is so much to say about today’s visit. We took our final, final trip to WR. The Pediatric GI clinic is still there, even though I reported it was in Bethesda. Thankfully I had the heads up over the weekend when I got an appointment confirmation phone call from Walter Reed. Dave called on the way up to verify, and we ended up at the right place for the consult with Dr. Min. :)
Teresa, my friend/respite provider/nursing student/medical interpreter/emotional crutch, came along with us to help in just about every way possible. Thanks, Teresa! On the way up to the visit, she shared with us some information she’d pulled from the internet, comparing and contrasting the two different types of feeding tubes (a nasogastric tube and a gastric tube --NG tube and G tube, respectively) Olivia is a candidate for. In a nutshell the NG tube is inserted through the nose and into the stomach the other end attaches to the formula pump. The G tube is a longer-term option that is surgically inserted into the stomach and there is a small fitting on her belly that attaches to the formula pump.
NG tube: It doesn’t require anesthesia and is a good option to determine tolerance for direct (to the stomach) feeding. The procedure to insert it is relatively easy, but it may irritate Olivia’s throat and an x-ray needs to be done to ensure proper placement. It would need to be taped to her face, and she may snag it, or pull it out, but for her I think that would be less likely than another patient.
G tube: Would either be done by the GI team, edoscopically, or by a surgeon, laparoscopically. In some cases, patients may require open surgery if the anatomy is compromised (possible scenario due to the scoliosis). It may require a 24-48 hour hospital stay. There is a potential for wound complications and infection, and everything else that goes along with surgery and general anesthesia.
That’s the basic gist of the information that needs to be weighed. The plan that we came up with is that she will meet with a nutritionist and on the same day have an NG tube inserted. This will more than likely happen sometime in August, after the move to Bethesda. Dr. Min will try to work out a day/time that we can do that on the same visit, as it takes over 2 hrs. to get up there. We expect to hear back from him this week.
Dr. Min is also going to contact a surgeon who will replace the NG tube with a G tube sometime mid to late September. Dr. Min consulted with the Attending physician, who concurred that the typical endoscopy approach isn’t a likely option for Olivia, due to concerns of her anatomy being compromised. We will get on the surgeon’s schedule as soon as possible. That will likely mean a surgical consult, a pre-op appointment, and the surgery.
Meanwhile, Dr. Todd (her actual Orthopedic doctor) will be returning from his trip aboard the USNS Comfort on September 1. We are going to try to get an appointment with him immediately upon his return to fill him in and get his opinion on what has transpired since we last saw him. For me, I think it’s important that he has a say in the short-term care she’ll receive that will affect his long-term care of Olivia. I expect he will agree with the steps we’re taking, but I want to ask before we proceed any further. The coincidence of moving to Bethesda, and needing to have the GI consult(s) have bought us enough time to consult with Dr. Todd before the GI and Scoliosis surgeries. We are grateful for the timeline.
Throughout all of this our goal has been to pack on the pounds that she needs for the scoliosis surgery while having the least impact of her quality of life. Olivia should still be able to eat and drink by mouth, more easily with the G tube than the NG tube. They may have us feed her orally through the day, and do feedings through the tube at night. We will have to wait until the consult with the nutritionist to get a good gauge of how much extra she needs. There is a chance that she may take some steps backward with regards to her swallowing with the NG tube. The main area of concern is that she only recently (w/in the last 2 yrs) has been able to swallow thin liquids without them going into her sinuses. If that happens, she’ll need to go back to her Feeding Therapist.
Essentially we have more information, but still have much to learn and to schedule. It seems like every time we go to an appointment, we have 2 or 3 additional visits to follow that. I think that before the G tube surgery in late September, we’ll likely be back in DC for 5-8 appointments from this point. Wow! Thankfully we have cruise control!
We appreciate your prayers and support. Olivia doesn’t seem to have any anxiety over these visits. I am not sure she really understands what is going on. Maybe in a way it is better for to not have the stress, but I wish I knew what she’s feeling. I’ll keep posting new developments, as they come.
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