Evening update

The rest of the day passed with nothing exciting happening which is a VERY good thing. It was a busy day. Lots and lots of people came by to talk to us.

A little clarification about why they want to do a spinal tap on him....that is to check and see if the gram negative bacteria has spread from his bloodstream to his brain and causing meningitis. If it has not, then 14 days of antibiotics. If it has spread OR if they are unable to do the tap within a certain timeframe, then 21 days of antibiotics.

Also found out that he does NOT have to wait for the course of antibiotics to finish before being able to begin feedings. He can begin feedings while on the antibiotic. Several factors play a role in being able to take feeds...different levels of different things they do bloodwork on (too many to list), the status of his bowels (seen via xray) and his coming off the ventilator. They keep emphasizing how glad they are I am pumping for him. So in such a helpless situation, at least I can do SOMETHING that matters and will be very important for him in the future.

They increased his morphine today due to his poor little tender stomach. He has seemed much more comfortable today when they have had to handle him. Which was a lot. The IV that was in his head came out this morning (it had blown and was no good). But they had to put another IV in his foot later on (took 2 sticks), because he needed another blood transfusion. That one blew before he was finished with the transfusion. Two sticks later, and he once again had an IV in his head and the transfusion continued. However, when the first transfusion began, there was a problem with the connection in his IV and the donor blood (not his thankfully) began just dripping out onto his bedding. So that meant a bedding change which meant picking him up, which normally means he is SCREAMING in pain (although no noise comes out because of the vent. Pitiful). Today, he just squirmed a little, like he didn't like it, but wasn't in terrible pain for it. As his stomach gets better, they will have to wean him off the morphine. 5 days old and already a drug addict. ;o)

He moved more today also. He actually straightened his legs out straight and left them there. He hasn't done that since his stomach puffed up, indicating his being in pain. So that was another good sign that he is more comfortable. Not necessarily that his bowels are improving, but he at least isn't feeling the discomfort as much.

The moved the "Jet" ventilator out of his room, which seems to indicate they are not expecting him to need it. That was the fast ventilator which delivered 450 small breaths a minute. He has held his own really well on the normal vent, and oftentimes is breathing above it. They have it set to 20 breaths a minute and usually it's showing 40-60 breaths a minute. So he definitely doesn't need it to breath, its just helping him not have to work so hard while his diaphragm is compressed from the swollen bowel.

They don't hear any bowel sounds in his abdomen right now and he isn't having any bowel movements either. We were really concerned about this at first because we were afraid that meant some bowel was dead. But turns out, they don't really expect to hear any sounds or see any poop right now. No poop because he's not eating. Just receiving IV nutrition (which they changed from just glucose to an actual nutrient mixture and lipids tonight). Also, they have a tube that goes down to his stomach and has constant suction on it, so anything that builds up in his stomach gets sucked out (it's gross). Also, he's on morphine, which tends to slow bowel processes anyway. So all in all, at this time, no bowel sounds are expected and "ok".

He opened his eyes quiet a bit this evening (as you could see from my picture only post). That made my day. I really didn't expect to see his eyes with the higher dosage of morphine. But he had an awake period where he kept his eyes open almost the entire time. You could tell he is drugged but he looked at me and looked around his little bed some.

I think that is all the news I had for tonight. All in all it was a much better day. He's still real sick, and the improvements have truly been small in the grand scheme of things, but today, everytime we saw a doctor, they weren't coming to see us. In fact, we rarely spoke to any doctors at all today. Only the surgery residents actually came by, and they had same info as before, that there are no indicators for surgery at this time. He may need it after the infection is gone, as there could be some lingering issues, or he could have tummy troubles in the future. His 6pm xray showed the pneumatosis (air or gas in an abnormal location in the body, in his case his bowel) was unchanged from his previous xray, but that one was much improved from the one's he had yesterday. He is still an 8 out of 10 (ten being most severe...lets do surgery now) in pneumatosis level though so we are cautiously optimistic about it, as we are with everything else.

Once again, THANK YOU to everyone for all the prayers and offers of help/information/etc. I cry pretty much everytime I read my email now from the emails and blog comments. We have AMAZING friends and family. That much we know for sure. And yesterday, when things were at their bleakest, and we were really terrified that we were going to lose little Riley, we could truly see the power of prayer. As bit by bit, news changed for the better. There is no magic "all better" that is going to happen. It will be slow and labored. But improved news came our way little by little and it was just amazing. Words will never EVER express the gratitude for all your time and prayers, but I hope you will keep praying that he keeps improving little by little and then one day they are going to say he can go home.


Also, please keep big brother Travis in your prayers as well. He is doing alright right now, but this will by far be the longest he has ever been away from us. He had cub scouts tonight and had a great time. He seemed pleased to hear that we taped a picture of him in Riley's crib to look at, and talked to Riley all day about him. But he also asked to come see us and he wants to see the baby. Hopefully, things will continue to improve and he can come up here this weekend. But I am so afraid that he will breakdown before then and that will just tear my heart out. If things continue to improve steadily, Jay will likely go home this weekend (which of course he feels so torn about) and leave me up here. That's going to be hard on him as I of course am not exactly in my best fighting form at this time and the events of the past few days probably set my recovery from surgery back quite a bit. But one of us really needs to be home with/for Travis and we can't bear to leave Riley with no one up here. Two of the 3 other babies in his room have had NO visitors since we have been here. And there are so many like that. It's heartbreaking.

As always, more tomorrow.

--Lindsey