We are rejoicing!!! It has been proven to us over and over that the oxygen is the key. Jimmie will start fussing and struggling during his feed and Rachael will put the oxygen on him and soon after he settles down and eats! Last evening she had him on 1/8 liter and he was struggling. She turned it up to 1/4 of a liter and he settled in and ate. Over the weekend he has gone from averaging 13 terribly hard ounces in a 24 hour period to 16 or 17 much easier ounces down in that time. He should be taking around 18 ounces so this is a huge improvement.
Rachael is keeping him on oxygen at night and during his feeds in the day. She leaves him on after he's done eating for a bit as well. Dr. S. is amazed and perhaps a bit bewildered. He is has referred Jimmie to Children's Mercy. Children's has been in contact with Dr. S. They can't get Jimmie in until Sept. 3rd so in the meantime they are VERY supportive of Rachael's use of the oxygen.
As Rachael processes all of this, she has thought back to her last appointment with the Neonatologist follow up clinic at Overland Park Regional. At that appointment Jimmie had recently started struggling, wasn't breastfeeding anymore and had not gained weight sufficiently at all. Rachael mentioned that the only thing that had changed was they had taken him off oxygen. They just immediately waved that off and said, "no- can't be that.". Then they pretty much just said- "good luck" and released Jimmie from their care! Jimmie's Pediatrician- Dr. S. was shocked they had already released him and a bit uncomfortable about it. Rachael feels a bit frustrated about this too. She feels that the follow up clinic there should just refer people on to Children's for continued care instead of just releasing them with a "good luck". Rachael also said repeatedly to me during that time that she couldn't believe they put Jimmie on the sat monitor for 5 minutes and declared him free of oxygen. She felt it should be a much bigger process than that. It seems she was right in her feelings about that! The NICU at Overland Park Regional is wonderful and Rachael respects and appreciates the Neo's there she just thinks their "follow up clinic" could be more thorough.
Anyway- God is the best physician and He has taken care of Jimmie. It was definitely His word that prompted mom to tell Rach to insist on oxygen. And Children's sounds like they will help Rachael take very good care of Jimmie and help address her concerns.
The interesting thing though is- Rachael is pretty sure Jimmie would pass any sat test. She's positive he is not desatting while he is eating. So a lot of Doctors might continue to say he doesn't need it. When you compartmentalize everything like Western Medicine tends to do you can often miss the big picture. Everything effects everything. It is so obvious to us now that in some way- taking Jimmie off the oxygen has caused a slow decline in his eating and weight gain. And has also contributed to his refluxing, aspirating and puking. Things were so steadily declining that Dr. S. and Rachael discussed the process of hospitalizing Jimmie. Hoping of course it wouldn't come to that.
So what now? Well as I said Children's is very supportive of Jimmie being on oxygen. And long term use in the way Rachael plans to use it is safer than any drug. We are very hopeful that as Jimmie grows and as mom continues to work (TKM Energy Work) on Jimmie that he'll outgrow his oxygen needs. Eventually he'll be able to thrive without it. For now though- it's our Holy Air!
Thank you for your prayers! Keep them coming.
"I bless the Lord who gives me counsel; in the night also my heart instructs me; because He is at my right hand, I shall not be moved. Therefore my heart is glad, and my soul rejoices; my body also dwells secure..." PS. 16:7-9