2-18-2009 Zachary Update

Only good news today to give. After several rather rough days there's some light. I did have to push the issue and get the Case Worker, his Pediatrician and a few others involved but in the end it was worth fighting for.

So first off, he had his upper GI done today. This is something he needed to confirm the GERD (reflux) and make sure he wasn't aspirating. Aspirating during feeds can cause pneumonia which can be fatal to preemies. Thankfully, no aspiration during the test however, he's having some significant reflux. He was already on the Zantac and that was helping some but she's now putting him on Prevacid it's just harder to get because you have to go to a compound pharmacy for it.

So he's been doing really well with the breastfeeding no bradys no destats and the only times he did those things were while bottle feeding. So I had told the doctor yesterday that I needed a firm reason why he was still here and if she felt he needed to stay longer than a few days to get the transfer process started to get him moved back to the hospital he was born at which is about 15 mins away from the house. So at least if the Pediatrician and Neonatologist felt it was medically necessary for him to stay hospitalised then he'd be closer to home. Parking is free and I could go home to eat meals instead of eating out every day. The financial toll daily here is really starting to negatively affect my bank account. I spent $10+ on parking a day + 1/5th a tank of gas there and back + $23+ on meals at the hospital. Needless to say him being here hemorrhages money.

So the doctor was waiting on his test results before calling me. She was clearly avoiding calling me before and Zach's Pediatrician had to call her several times before getting in touch with her. I re-iterated about the transfer knowing she hadn't called the case worker. (I'd called the Case Worker that morning to see what needed to be done for the transfer since I knew the doctor was stalling). She wanted to try to use the Simply Thick again and I was honest and plain and told her that after the last Tues - Sat without a poop that I'd rather not since he'll be breastfed at home and it's only an issue with bottle feeding. The Simply Thick bound him up so badly he literally didn't poop for 5 days and was in terrible pain every time he passed gas etc. I told her that "not to be rude" but she's not there all night with him as he's crying and whimpering in pain when he's trying to poop/pass the gas. When he can't burp because the thickener keeps the burps from coming out. He's already got pooing issues and burping issues without a thick substance. So yes, it works wonderfully on keeping them from spitting up but HE DOESN'T currently spit up. It can help some with the reflux but if you fill him up he'll still reflux no matter what you give him. The Simply Thick is also used to help them suck swallow rhythm better but he does fine breastfeeding, once again only a bottle issue which he does fine with his suck/swallow there too (nothing out of the ordinary for full-term baby).

So after repeating myself about 3 times stating why are we working on an issue that's only a problem in the hospital. Why would we try to give him something that even has a possibility of causing him discomfort and pain? I think she finally understood what I was getting at. I told her I completely understand why they want to try it again but I think for him the downsides outweigh the benefit. Plus, at home he'll be breastfed 90% of the day so it really won't be an issue. I asked her if it was really medically necessary to keep him here when we're working on a problem that won't be a problem at home? He won't be going to a day care for a long time and that's about the only time he'll be bottle fed. She wanted me to assure her that I was only going to breastfeed him at home ... after I'd said that was the plan I don't know how many times. He does very well breastfeeding at the hospital the 12-18 hours I'm there. The only time I have to bottle feed him is if I pumped off and he's hungry and my milk hasn't refilled.

After we got the go-ahead from the doctor the Case Worker started on the prescriptions and the multitude of doctors he needs to see when he's out. Mostly for follow-ups. A Cardiologist (to make sure the PDA is closed), an Audiologist for a hearing test (although he passed the first one beautifully they like to do a follow-up to make sure due to him being a VLBWP - very low birth weight preemie), the Pediatrician 5 days after he's home, a Urologist to get his circumcision done and the eye doctor in a year to follow-up and make sure his eyes are still doing well.

Thankfully, he'll have a monitor sent home with him and as soon as we get the training on that we can do the care by parent 24 hour where he's only on the take home monitor and we do all of his care. I generally do all of his care anyway when I'm here so it's no biggie.The people that do the training for that will be here tomorrow at 1pm. I probably won't stay tonight as long as I usually do so I can be well rested for Thurs-Fri.

He just got his RSV vaccine (that's a nasty virus that often causes pneumonia etc in preemies and those with compromised immune systems). He'll get his second shot of that in March. He didn't like that at all ROFL. I just got taught how to give his meds talk about precise.. 1.13 ml of Prevacid lol. One thing I know about that is it's weight adjusted so important to make sure he's getting that adjusted as he gets bigger.

Overall, he's kinda tired today after his upper GI but doing well and sleeping good. He needs a good sleep :). Last night he was up to 7lbs 8.1 ounces hopefully he continues to gain. Small gains but gains all the same. I'm hopeful his discharge from here will continue to go well and we'll be home by midday Friday.

Sarah