Rachael took Jimmie back to Dr. S. yesterday morning. Jimmie had barely been taking an ounce with his feeds. It's heartbreaking because he acts like he's starving, but won't eat. And this was after a day of Bethanacol.
My mom walks her Labradoodle-Gus every morning and prays and listens on her walk. So yesterday morning she was praying for Jimmie and this situation and she had an idea, maybe a revelation! She received some TKM knowledge about oxygen energy and how it relates to your eating and GI tract. (Mom feel free to comment and elaborate if you want!) And then she realized that Jimmie's eating going down hill directly correlated (the time frame) to him going off oxygen. So she stopped at my house (I live up the street) and called Rachael who was at that point- on her way to the doctor with Jimmie. Rachael agreed to ask Dr. S. for oxygen.
Dr. S. spent his entire lunch break yesterday with Rachael and Jimmie. He is really wonderful. We are very grateful to him. He pretty much admitted that at this point he's stumped. He feels the drugs should be working. So he's referring Jimmie to a Neonatologist at Children's Mercy. Jimmie's Neo's at Overland Park Regional recently released him from their care. Going to Children's will be better now- anyway. The Neo's there are more focused on pediatric problems and children who are out of the hospital and living at home.
Dr. S. basically gave Rachael leave to call him at home if she ever feels it's reached a critical point and he'll get Jimmie direct admittance to Children's Mercy. We want to avoid the E.R at all costs with Jimmie. The odds that he would be exposed to something in that scenario are too big to risk. That said- Jimmie is eating enough at this point to keep out of the hospital. He's still gaining weight and he's not dehydrated. Clinically he looks great.
Dr. S. is open minded about the oxygen. Jimmie's sats are fine every time they've checked them at the office, but he agreed to put in an order. We are all desperate at this point. He listened as Rachael explained things had steadily gone downhill since they discontinued his nightly oxygen. Coincidence? Maybe- maybe not!
But we hit a bump when Rachael and Justin's insurance company started to refuse reordering oxygen without a sat study proving he needs it. We know Jimmie will pass the sat study so Rachael and Justin were preparing to pay for the oxygen out of pocket. Then at the last minute some dear lady with the medical co. made it happen. So the oxygen was delivered yesterday and Jimmie was on an 1/8th of a liter all night. And lo and behold the last 7 feedings have been going better!!! He's not been screaming hysterically and at a few feedings he's taken 70 and 80mls!
Jimmie has had his ups and downs so we'll wait to declare the oxygen as key, but today has been a good day!!! Thank you Lord! We obviously can't leave Jimmie on oxygen indefinitely without weaning, but we will cross that bridge as it comes. Using an 1/8th of a liter at night or when he's having a bad feed can happen for a long time without ill side effects. And perhaps safer than long term use of Zantac/Prevacid and Bethanecol- which haven't really helped that much anyway.
Oh Lord please let this be an answer!!
Thank you also for your prayers for Rachael. She is trying to gain better perspective. Keep praying for her! Mom was with her all day Thursday. Kathy (Justin's mom) spent the night Thursday night and went to the Dr. with them Friday and then went back to Odessa to receive the oxygen delivery while Rachael hung at my house for the afternoon. Rod and Kathy have been with Rachael and Justin all day today as well- helping them. Tomorrow Justin works his 24 hour shift. Rachael will come in at some point in the morning and I will watch Jimmie while mom does some TKM treatments on Rachael. We are trying to make sure they have help every day for a while. Rachael really needs to spend some time taking care of herself.
Thank you so much for all of your comments, support and prayers! It really lifts us up and encourages us to know you all are praying.
I'll leave you with some cuteness! My Dad is a musician here in Kansas City and one of his friends gave Jimmie this "I'm with the band" onsie. Awesome! (-: