Right after I posted last night I talked to Rachael and Jimmie was refusing to eat his last bottle of the day. She was out in the hall because they were putting the feeding tube back in and she just couldn't watch him suffer again. Justin was with him . . .
It seems like every time I post an upbeat- "yeah Jimmie is doing better" post lately, I talk to Rach right after I publish it- and she's like, "Um- never mind, he's having a bad time now." Although the big picture is that yesterday- overall- was a good day. So we are thankful for that.
This morning he puked his feeding tube up AGAIN. Rach realized that after the tube got clogged yesterday they had a put a different tube in that was smaller and longer. She's thinking that's why all of the sudden it is coming up every time he pukes. So she is going to ask for the bigger shorter tube to be reinserted. That tube didn't come up every single time he had a little pukey.
As far as the food moving out of his stomach; the Doctors are not too concerned, but that is what the Erythromycin is for that they have Jimmie taking. That drug helps move the milk out of his stomach a little faster.
The Doctor yesterday listened to Rachael explain about how the oxygen had really been making a big difference with Jimmie's puking at home and that also at times it seemed to help his eating struggle too. We thought since he was satting great the Doctor would "poo poo" that, but he didn't! He said that was totally possible and that he did feel that Jimmie coming off the oxygen had something to do with all of this. He said Jimmie's body was trying regulate itself without the help of oxygen and that it's entirely possible his reflux escalated and his digestion took a hit. BUT-- he feels that Jimmie needs to aclimate. Meaning that he doesn't really want to keep rescuing him with oxygen. *sigh*
Obviously the oxygen wasn't helping enough to keep him out of the hospital, but still. My response is, "so your okay with dosing Jimmie with drugs to try to "help", but plain old God made oxygen isn't a good option??" I understand long term use of oxygen isn't safe either, but neither is long term use of those drugs! Maybe the oxygen plus the drugs would be helpful??! I was impressed the Doctor listened and acknowledged, but not so much with his reasoning.
We are sincerely hoping these drugs work. We are desperate for something to make enough difference that Jimmie won't need to be tube fed. I can tell you though that once Rach gets back home she won't be throwing the oxygen out. She's hoping Jimmie's Pedi Dr. S. will work with her on that. The other thing to note is that these Doctors taking care of Jimmie are Special Care Pediatric Doctors they are not Neonatologists. Jimmie still has his appointment Sept. 3rd to see the Neo.
Disclaimer: I know I'm not a Doctor and I'm sincerely not trying to be disrespectful. End of disclaimer . . . (-:
I'll post another update tonight to let you all know how the day goes...
Eat Jimmie eat! Go Jimmie go!
Love,
Amber
P.S. Thank you to Chris, Pam E, Pam L and Michelle for doing Jimmie duty while Rach gets out of the hospital or eats in peace or takes a shower. We are grateful for the help. Although who wouldn't want to sit and hold our little miracle!?? He's so awesome! (-:
My now 10-month old son was a micro-preemie (born at 25.6 due to severe pre-eclampsia). Weighing in at 1# 5.2 oz and 12 inches he had quite a struggle, but 86 days later we were able to take him home. He, too, struggled with severe reflux. We tried Zantac, which our Neo said was pretty useless in the severe reflux seen in the preemies but insurance requires it be tried first since it's pennies compared to Prevacid. It took a good 2 weeks of Prevacid to see ANY results, and that was only to help stop the severe arching and refusal to eat. He still spit up a TON (frequent and LARGE amounts), and had the "reflux cough" after eating, had to be help upright for at least an hour after eating and was a very noisy breather due to the milk pooling in the tissues around his epiglottis. After dismissal the ENT continued to see him and adjusted his dose until we were about 8 x the dose we had been on in the NICU before we saw very good results. I remember hating feeding time because it was such a struggle and almost hating my husband because he "got" to go to work while I had to keep trying to feed Ben. We also went home on continuous oxygen and eventually got that weaned. I can't help but think that part of why the doc might be leaning toward medications is because they end up being SOOOOO much easier to administer as well. I'm sure you're well aware of how much of a pain dragging around oxygen bottles and only being able to go so far because the oxygen "leash" won't reach into the kitchen/baby's room/etc. It will eventually get better as he matures and grows and the medication will help as they find the right combination and dosage but it takes time as the prevacid at least is not an immediate fix. That's what everyone told me and I hated them for telling me that because I wanted it better NOW! I hope this didn't come off as ass-vice. I'm praying for all of you as I remember all too well how frustrating it can be. Feel free to email me at teacher_ayg@yahoo.com if I can be of any help.
ReplyDeleteAmy
I am glad that the doctors are listening. It is so hard when you feel like you are talking to a cardboard cutout rather thn an empathetic living breathing person.
ReplyDeleteI know this has been a real struggle for everyone in the family. But Jimmie Jim Jim, he's going to get better. He's going to get bigger and stronger and do amazing things in this world.
I'm keeping those prayers coming.
Well, hopefully Dr. S will continue to let them have some of the small tanks at home. Hopefully switching the feeding tubes will help; I am sure it's not pleasant having to have a tube shoved down your throat constantly! I am glad that Rachael is so observant and involved in Jimmie's care. She is his biggest advocate! I just pray that the doctors will listen to her and really take into consideration what she says to them. Love you guys!
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