Didn't I tell y'all it would be sometime before lunch when we saw a doctor? Anyway, I think we got a pretty good report from the doctor (ie...doctor and the 8 folks he brought in here with him...back to the teaching hospital routine). Really we talked mostly about Gaines overall and not so much about his cold. I actually had to ask what we were going to do about that. Here's the deal.
Gaines' second x-ray didn't show anything different from his first one which is good. I was hoping that maybe they'd be able to see some improvement in his lungs but they only looked the same...no better but no worse. Of course, I asked this doctor for his assessment on how long Gaines will be on oxygen and he thought sometime between his first and second birthday. Pretty much what the last doctor said. Not exactly what I wanted to hear but whatever. We'll just try and be patient.
The doctor was pretty concerned about his reflux which I was happy about. He says other than nutrition the second best thing to help Gaines' lungs is just not to damage them any more than they already are. We do this by keeping him healthy and by him not aspirating. So, we are taking some new steps to help it. We are keeping his formula the same (found out why...they really want to keep him on preemie formula until 6 months adjusted age) but adding an extra teaspoon of rice cereal to his bottle. We are also staying on the Baclofen but adding Prevacid. Hopefully this will help. We had pretty much given up on this since he's growing well but maybe things will change with these new measures. Oh, also...I got the go ahead on feeding Gaines cereal by spoon as long as its not taking away from his bottles. Beau told the nutritionist that was a good thing since I'd already done it.
In other news we are going to try and wean off the lasix some. He is currently on 1 mL of Lasix a day and we will now move to .75mL and eventually to .5 mL.
Supposedly he's supposed to be getting some steroids for his cold. We don't have them yet but maybe they'll get up here eventually. The really good news is that we are going to watch Gaines today and see how he eats and responds to the steroids and if he does well, he might be able to go home tomorrow. I am mentally prepared to stay until Sunday but tomorrow would be great if he is ready.
Gaines is awake and playing right now. He seems to feel better and Beau and I agree that we think he's improving. He's back down to 1 liter of oxgyen and his SATS are pretty good.
We've had two visitors since we've been here (in addition to Beau's mom, dad and sister meeting us here with dinner, pillows, blankets, snacks...awesome I know). One was an old friend of mine that I had not seen in a pretty good while and the other was a nurse that works here and has been reading our blog. We don't know her but she told me when she saw his name on their board she had to come in and meet us. Small world. We love meeting people who have been keeping up with us.
I think that's about it for now. I think Gaines is getting sleepy and I'm going to try and catch a nap. I know that I didn't get to sleep until after 1:30 last night and it was broken sleep at best. I am always amazed at the way hospitals run at night. They want you to rest but really have no intention of you getting it. Sorry...kind of a grouch about that right now.
Please keep praying...it's working.
Love to all,