Monday, March 30, 2009

Photographic evidence

Proof that for the first time in who knows how long, Alan ingested calories. In his mouth.

Do you see a resemblance?? No it wasn't an actual cheetoh, it was a gerber finger food cheesy flavored whole grain puff. But he put it in his mouth and chewed and swallowed. Later after I thought I cleaned up all the food mess that had been made when I excitedly pulled out little bits of everything I thought he might like, he got a bolus feed. well right toward the end when his tummy was extremely full, he was unsupervised and must have found a cheese puff that I failed to clean up and had already consumed almost the whole thing before I got to him. With the full tummy of formula and all he inevitable hacked up some milk.. but it wasn't all the feed by any means so I was fine with it. Just psyched that he had taken some initiative to eat something again he thought was yummy.

I definitely think this is reinforcement that I agree more with the Graz model of feeding therapy Basically immersing the child in age appropriate feeding opportunities that encourage autonomy and independence vs. the more structured scheduled means of encouraging oral intake.
I think we may have to have a picnic later today!!
If I were rich and Alan were stable, I'd so take him on an Austria vacation to learn to eat.

Well.. backtracking a little. Alan has done well recovering from surgery. He's pretty much back to his old tricks.
After a day or two of freedom, Alan was still a little pale without any O's on, so we made him put the cannula back on on 1/8. Its amazing how much a difference a very small about of O2 can make. Let me tell you, he was thrilled about getting another cannula on.. :(

Thursday, March 26, 2009

Finally hospital pix

Last thursday afternoon, Alan went to the hospital to get his G-tube! His surgery time was 3:15pm so he had a long morning to hang out and get ready. He stayed NPO all day which meant one last Pediasure ng feed at 6 am.

Last bath. Alan decided to take one last good soak before going in for surgery. Afterwards needs to wait at least a week to submerge the surgery site.

Then we went to the hospital to get ready and wait for his turn. Alan wore his awesome "I Heart organ transplant" T-shirt.

Tried on the hospital gown and practiced the crawling.He was a wild crazy trouble maker and figured out how to throw his binky and slippers and toys off the crib onto a ledge of the bed.The he went back to the OR. Mom and Dad got to go along. Alan laid down and got masked up and went to sleep. It took about an hour total. The procedure involves laproscopically pulling the stomach to the edge of the belly and putting the button in. He did well. Right after he had a little respiratory trouble but it got better with some morphine. His tummy was probably just hurting to much to get good breaths in. Mom and Dad got to see Alan in the PACU. He was still very sleepy.

Then, Alan got to go to the CPCU. Yay, room 921. It was awesome. He got to see a bunch of old friends and get taken care of by mommy's coworkers who did an awesome job.

He spent two nights. His tummy was still very ouchie at first but he got medicine to help. The next day he started feeding on pedialyte then moved up to his new formula Nutren Jr. He started on slow continuous then worked his way up and finally tried some bolus feeds that he kept down great. Saturday night Alan finally went home. His site has leaked a little which hurts but we clean it and put Maalox around the button to protect his skin. The G-tube is awesome. Its very easy to use and its great to get the NG out of the way.

Then.. mommy got super sick, which is why I've been a slacker getting these photos uploaded. I had a sinus and ear infection and probably some kind of underlying virus. It started Sunday and I'm just now getting over it.

But Mr. Alan's doing super. He's even getting back to some rolling and trying to crawl.

Sending our love to Baby Stellan

Monday, March 23, 2009

Thinkin of Stellan

Please keep little baby Stellan in your thoughts. He's a very sweet little man. During his mommy's pregnancy he was in Supraventricular Tachycardia (SVT) that put her in the hospital. Managed with drugs, he beat the odds and was able to be saved and born a happy healthy baby last October. Last night, for the first time since birth, he went into SVT rhythm again and has been going close to 300 with his heart right. He's in the PICU trying to get back into a normal rhythm. He's been blowing through his IV's and hopefully will get a central line in soon so he'll be done with the poking.

Read more at MckMama's blog and check out some photos of this beautiful boy.

Hoping now for him to get out of this SVT spell and stay out and to come up with a plan of care for managing this in the future.

Friday, March 20, 2009

he's having a good night

Pictures will have to follow when I get home to my camera cable. The procedure went well yesterday afternoon. It took about an hour. Right after surgery he was having a little breathing difficulty that resolved itself once he got some morphine.
He came up to the CPCU last night. It was a pretty good night, he just woke up hurting once. This morning Alan woke up bright and early to his 730 am cyclosporin lab draw. It turns out that his cyclosporin level was super high so we'll have to do some dose adjusting to get it back down.
And he was really puffy. Probably OD-ed a bit on the fluids. He got a dose of Lasix this afternoon and managed to pee most of it out. He's been weaned from 2 L to 1/2 L and can hopefully wean the rest of the way off the O's tonight now that he's dried up. Started using the G-tube today with some pedialyte and now he's up to 20 mL/ hr of formula, so halfway to his goal feed of 40 which he'll hit at 3am if all goes well.
Alan was pretty irritable today but its definitely improved. He got a sponge bath and put on some cute pj's and has been getting some Tylenol/ codine. I think we're getting close to the smile coming back. He's been up to his usual trouble watching movies and throwing things off the bed like binky and socks and toys.
Better knock on something but we're hoping to get out of here tomorrow morning. Its been a little weird being a patient on the unit where I work but its been good having everyone that knows him and loves him take care of him. We went to a G-tube care class - pretty straightforward stuff. This really looks like its gonna be so much easier. I wish we'd gotten it done sooner!

Thursday, March 19, 2009

Today's the day!

We're headed out in an hour to the hospital. Alan's getting his G-tube.