just got home

it's been a long day. a looooong day. I just got home from the hospital (literally like 5 minutes ago). But before I catch you up with Riley..I have to say...Travis got his first report card of First grade and he did SUPER! I'm so proud of him. He also had a pretty fun weekend with a trip to the county fair on Saturday and going to see Madagascar 2 yesterday.

So Riley...he is still ok. but it was a long, frustrating weekend. The poor guy had issues with spitting up and wretching all weekend long, up till about early evening yesterday. After some questioning and observing, it was decided that he needed Zantac added back in his TPN mixture. It had been stopped the same day he began to make faces while eating. The poor guy was refluxing and not once did he cry or even really whimper about the acid burning his throat. :o( And we know it was acidic because they tested what came up with Ph paper. Of course adding zantac back in his TPN is an easy thing to do,but it can affect intestinal Ph we were told Friday night, so that is a concern for us. But the docs feel the benefit (ability to eat some milk which in turn keeps liver active) outweighs the risk at this point. So he quit being sick last night and noontime today, was able to have some pedialyte and will progress back to milk tomorrow.

Saturday, they did an abdominal xray (he still has them as follow ups occasionally) and there was a questionable area in his abdomen. Of course we are hyper-sensitive to any changes of this nature, so that was worrisome. But the doctors consulted amongst themselves and listened to the radiologists dictation of the xray, and they really feel the area is not of concern as of right now. Of course it still bothers us, but we trust them. They repeated the xray again tonight, so I will know what it showed tomorrow, but they had me remove his ostomy bag first, just to make sure that it's not interfering with the xray in any way.

Speaking of his ostomy bag...they have been doing much better lately. Hoping it stays that way, as his skin has healed from the irritation it sustained last week when those stupid bags just kept leaking. The leakage didn't actually irritate his skin, it was pulling the bag off so soon that did. But now, it's nice and normal again.

The doctor checked him out today and said he's doing good developmentally, and she has ordered play therapy for him, to ensure it stays that way. I'm really happy about this, as his development and stimulation is a big concern of mine, even more that I am not in there with him all day. So he'll be getting some extra stimulation which I am sure he will enjoy. His night nurse the other night put him in bouncy seat as close to the door of his room as she could get him as he was awake (sometime in the middle of the night) and was lonely and she was having to tend to another baby across the hall. So this way, he could see her in the room across the hall and not be in his bed.

they tried again today to get a PICC line in....two attempts and no luck. They are trying one last time tomorrow. If they can't get it this time (and I am really not expecting it to work...no lack of faith in their abilities, he just doesn' thave good veins), he will be getting a Broviac surgically inserted in his chest on Friday. :o( This is surgery. they will intubate him and sedate him. I hate it. But, its bound to happen. Plus, he is going to have a TUBE coming out of his CHEST that is "permanent". Just not happy about it. But..he HAS to have a stable central line for his nutrition right now.

This morning, the day was really looking like it was going to be a horrible day. And overall, it wasn't great. First, I left the house late...then I got caught in traffic (thank you tug boat going under the bridge...argh), then I went out in courtyard to head to NICU at work and there was helicopter landing and that makes my stomach churn, then I saw the nurse he had today and she was one we had a disagreement with about feeding when he was in nicu here the first time, THEN...when she was telling me the results of his morning bloodwork I found out his platelets have dropped, in half from only 3 days ago. This was MOST concerning. I DREAM about platelet numbers....and I talk in my sleep about ostomy bags. Platelets dropping is NOT what I want to hear!!! Hoping they don't go lower today/tonight. Will have another check in the morning. THey tried and failed to get a new PICC line in...the things just kept adding up. BUT there was ONE good piece of news today...both his nurse AND doctor heard "active" bowel sounds in 3 quadrants of his belly. I dont' think anyone has EVER heard active bowel sounds on him since Oct 4th.

so tonight, I was supposed to take Travis to cub scouts and Jay was going to keep Riley company. But, the xray needed to be done with the ostomy bag off and apparently I am the new ostomy queen. So Jay took trav to cub scouts and I stayed there. I got pee'd on, "pooped" on, and he wouldn't eat his pedialyte for me. By the time 11pm rolled around and I was leaving, I was tired and sore and had a poop stain on sweater and hadn't eaten dinner. but when I got ready to leave tonight, I leaned down after tucking him in, kissed his head and told him I loved him and when I stood up, he had his eyes wide open and smiled a crooked little half smile at me. None of the stress and worry and exhaustion of the day mattered then.