Tuesday, September 16, 2008

Big Picture Little Picture

Jaime and I got to go home early last night as the little man fell asleep around 7:30 and we figured (correctly) that he was probably down for the night. We made the mistake of watching some TV and while we got home around 9:30 somehow we didn't' get into bed until 11.

Stupid. I was already feeling tired today and it didn't help that when I arrived I heard that Simon's Broviac line wasn't working for blood draws and they had to poke him just before I arrived. I couldn't believe we were back to the poking times. I couldn't even bear to ask how it went knowing full well that it was terrible.
The rest of the morning was rough going too with Simon being more fussy and me trying to talk to doctor after doctor about tweaking his care. It was just a little more exhausting than usual. What was great was that our day nurse got the broviac drawing blood again and Simon didn't vomit at all today. He also put on 20 grams from the day before which was great.
Simon is still on a nursing strike which breaks my heart and contributes to the feeling of helplessness. He loves his pacifier though. Little Shit. Who knew I'd be insanely jealous of a pacifier?
I don't mean that but it's so hard not to be able to nurse him or even just offer him comfort in that way. It's not unusual for a five month old baby to go on a "nursing strike" it's just that much harder under these circumstances and I don't have any control over it since he HAS to get nourishment and can't wait to get hungry like a healthy baby would at home.
Tomorrow though the team wants to see how we can get him back on the boob both for nourishment as well as to try and challenge him a little given how well he seems to be doing.
He's going to get a 10 hour continuous feed during sleeping time and then just get two bolus feeds at 10am and 5pm during the day. That means that he has 7 hours to get hungry and work it out himself (with the boob right there for the taking).

We'll see.
The other great bit of the day was some amazing memory work on my part (not easy given my history). Dr Patel came by late in the evening and I asked him if he'd seen the Echo from earlier in the day since Dr Hunkypants hadn't been by to give us a report (after telling us that he was going to look at it and then come back and talk to us about it- what like he's busy or something?).
Dr Patel called Dr Rosenfeld right there on his cell phone (they're buddies- I caught them having lunch together the other day, sharing a chicken Quesadilla and fries- too cute) and got a quick report.
I also let him know that they were planning on poking Simon again later tonight for Coags, a test that for some reason didn't get done this morning when they poked him because of his Broviac not working. I reminded him that his broviac was working again and that we had started Cumiden again in the last 48 hours. He looked somewhat surprised and said "then why do we need to poke him tonight?" Right then and there he canceled that order and canceled the one for the Cumiden tonight so that we could get a better read for tomorrow. I'm sure I'm messing some of the medical details up but the jist is that I was really glad to have been there and asking the right questions to help Shimmy have to deal with one less procedure.
Almost made up for the lack of nursing.
As for the Echo, no real changes, no further deterioration, and maybe even a hairline bit of improvement. I'll take it.
Tomorrow I must get out and take a break. It's hard. It doesn't feel good while I'm doing it. It doesn't even feel good after I've done it. Why do it then? Beats me but people I love and trust keep telling me to do it.
One last thing: If you're leaving a comment and we've never met, we'd love to know how you came to us. We like to talk to Shimmy about how wide the web is.

Many many thanks.


Here's Simon eating more Rice Cereal. Mmmm Mmmm Good

Umm maybe not so good

Eileen giving our Nurse Carol a private Pilates Lesson (that's coming right off our hospital bill)


Anonymous said...

I too hate leaving my little one. Who cares that he is now three?! There are so many ways to take time to yourself without physically leaving your baby. If you don't want to go out, and you don't have fun doing it, then don't. You will know for yourself when it is the right time.

Some ideas for time to yourself while staying by his side (these are just some things I did):
paint your or his nails
read out loud--he's five months old! what does he care if you're reading the biography of sojourner truth?! (I spelled out the scary words)
let him see you just sit and be calm in the midst of the storm
mommy and baby yoga
sleep together!

I know that everyone means well, but I just thought I'd weigh in as another mommy who resisted going out.

Sending love from the fun town of Sacramento!

Claire (Jaime's friend from PPGG)

Fresh Ground Knits said...

oh, big hugs to you Laura (and Jaime too, but I'm giving you an extra one today). That must be so hard with the nursing strike! Keep on trying though, he remember mommy's milk is the best :)
The pediatricians in my office were just talking yesterday about how hard it is to keep track of everything, so good for you for remembering all that!
Amy D

Maia said...

Look at Eileen's guns! Can't wait to see you all....counting the days. xo m

Fred said...

its both funny and sad that i've been hitting simon's blog all day every day since he's been in...but just now realizing that its an actual "blog"!...with comments and everything. i think simon's more together than i am.

simon is looking really good these days...amazing in fact. i wonder if he knows just HOW MANY people are on his team? well...he will later, when he's older, and when he even cares what his mom's say :) i'm guessing he'll figure it out when he's about twenty! in the mean time...its enough that he's got the biggest cheering squad on the planet...and we love him soooooooooooo much!

Carrie S said...

Your story, Simon's story, has captured my heart. I relate in many ways to the themes of the posts...I am a nurse, I am a lesbian, I am a step mom...so your struggles and challenges and joys I share and appreciate.

I came to your website through my cool cousin Alicia. I have already shared Simon's story with my partner, and 2 fellow nurses...so thus the web and chain of those thinking wonderful thoughts for Simon grows exponentially.

Live in the moments. Smile. Laugh. Cry. Whatever your heart needs. There are so many more stories to be written and shared about your family and Simon.. this is just the beginning.

Sending thoughts of health and happiness from Troy, NY
Carrie S