Dr. H. remains cautiously optimistic, even after seeing Jimmie today and speaking with Rachael, that weaning will be successful. Jimmie is indeed sick, but Dr. H. hooked him up to a sat monitor and Jimmie was satting 97! This is great. He is continuing to have a very runny nose and a cough though so Dr. H. does not really want to continue to stress him further by aggressively weaning until he gets over his cold. As of this morning Jimmie has lost 4 ounces. Dr. H. wasn't distressed over this. He expects some weight loss.
Rachael did not pull Jimmie's tube this morning, but Jimmie did- little stinker. All of the snot running out of his nose is loosening the tape that the tube sticks too. )-: So they waited and put it back in later this afternoon. Without really trying too hard, as of 6pm- Jimmie had taken 50 mls or so by mouth. He is receiving tube feeds and will as long as he has these cold symptoms.
Rachael spoke with an OT (on the phone) from St. Lukes that Dr. H. recommends. He said she works wonders with kids who have eating issues. She called to interview Rachael to see if she thought she could help them. They are in the process of double checking some insurance things and then hopefully Jimmie will see this new OT next week. She rarely sees people outside of her normal job so she would be taking Jimmie on because Dr. H. called her personally and asked if she would.
Dr. H. really wants Rachael to fortify her breastmilk with a formula called Enfamil Enfacare which is for low birth weight preemies. His reasons are: 1. For extra calcium for Jimmie's bones. 2. Because Jimmie won't have to take as much volume to grow on.
Rachael likes that reasoning, but does not like all of the ingredients in that formula. Neither does Jimmie's Naturopath Dr. C. So Rachael has an appointment with Dr. C. on Monday and she will bring in the Enfamil so that Dr. C. can try and put together a recipe of something comparable and preferable. If you remember Jimmie has a really hard time tolerating any type of formula. This Enfamil and many others give him a lot of mucous and an upset stomach.
To be honest- I have to take notes when I talk on the phone to Rachael about these updates. Jimmie has 3 or 4 OT's, 1 Nutritionist, 1 Naturopath, 1 Pediatrician, 1 Neonate 1 Developmental Pediatrician and 1 Gastroenterologist. ( Did I get them all?) Rachael is easily on the phone 2 or 3 times a day with any one of those specialists. I honestly do not know how she does it. She'll say, "I called Dr. so and so" and I'll say, "who's that again?" Rachael is a supermom. She is SO proactive about Jimmie's care and development it's truly inspirational. Am I surprised about this? No. I lived with her for 23 years. But though I'm not surprised I'm still in awe.
Rachael mentioned how far Jimmie still has to go tonight. She still would not be surprised at all if this whole thing ends in a g-tube. But she won't call it quits without good reason. It is so wonderful that we have Dr. H. because he will have an opinion about when to wave the white flag with this as well. Jimmie ended up taking about 125mls yesterday. This is good, but just to give you an idea of how far he has to go, Jimmie gets about *800* mls in his tube over a 24 hour period. He may do fine on a little less than that, but he need to take in about 8 TIMES what he has achieved so far. 125mls is nothing to sneeze at for Jimmie who was taking next to nothing before we started this, but still that 800mls looks rather daunting considering how hard he worked yesterday for the 125.
I told Rachael that I was going to hang on to Dr. H.'s "cautiously optimistic" statement and keep praying like crazy for Jimmie to do this! She is grateful for all of the prayers and positive thinking. I know all of you will join me in that. Repeat after me! "Go Jimmie Go! Go Jimmie Go! Go Jimmie Go!" I don't know how many times I said that when he was in the NICU. (-:
Pray especially that Jimmie gets over his cold quickly and easily so that weaning can continue again in earnest.
Thank you so much for your support. You all will never know how much it means to us!