Thursday, May 15, 2008

the week in review

i'll have another post tomorrow, after post-op clinic (in london), so i thought i'd post tonight, too, and get you caught up on the rest of our week at home.

we got home late monday evening, tired but elated to be home. it was wonderful! i got to sleep in my own bed for the first time in a week. and as nice as the beds are at the Delta, my bed is better. :)

tuesday was exhausting. it's been so long since an admission, let alone a surgery, that i guess i'd forgotten just how tiring admissions actually are, and that it takes me a couple "daze" to recover. so, yeah, i got nothing accomplished on tuesday. but i had a visit from a good friend, asher's "aunt tiena" (who attended his birth way back when!), so that was lovely. hospital admissions are pretty dehumanizing; you're torn away from everything that's yours, and stuck in a building where the windows don't open, but you don't want to leave, especially once you're in parent care. and CCCU. and step-down. ok, really, you don't want to leave. you're alone and tired and the bed sucks, but you stay because there's no where else you'd rather be. anyway, a visit from a friend. that's what i accomplished. and i bought some music and a book online. that was my day. oh, and racing around to get his prescriptions filled. wow! what a rambling paragraph. i'll try to do better.

yesterday (that would be wednesday), we had a somewhat busier day. we got some grocery shopping done, which was good, because we had almost no food in the house. not even bread or milk. we also had a quick trip to the paediatrician in the afternoon. that wasn't so fun. here's the details:

well, we have to have a post-op assessment with the paeds doc anyway, but yesterday, we noticed that the bottom 1/2-inch of asher's incision was opening up. not good. so she had a look at it, and said that if it got oozy i'd have to take him to emerg (it's getting there, but we go to london tomorrow, so i am not making 2 trips in 12 hours, thank-you very much!) so i'll get liz to take a look at it while we're there. the other issue i discussed with her is that asher's back to refluxing quite a bit. i told her that i really don't want to go the fundoplication route now, since asher has recently figured out how to swallow. but she said that she has talked with dr h (gastro doc), and he said there are options before the fundo, like maybe putting in a G-tube (in addition to the GJ), but the G would just act as a drain, removing the extra stomach juices as they develop, so that there's really nothing he can reflux. we'll be seeing him soon, i think. other than all that, she was very happy with how he looks, he's happy and pink and warm. and she was happy with his lung sounds, or rather, the lack thereof! he sounds much clearer now that all that blood isn't backing up into his right lung (thank-you, dr caldarone!)

we also had respite last night. and i had a break-down last night. yup, another one. we came home, and i had to give him his Enox injection. as soon as he sees the needle, he starts to cry, because he knows. that's really upsetting. and after i'd done it, as i was talking with the nurse, i just burst into tears. i'm so tired, so overwhelmed, so afraid and anxious, so drained, so beyond myself anymore. a lot of times i feel like the only thing i can do is cry. so, we talked, and i asked for more respite. (that's right, folks, i asked for help! i was more shocked than you, believe me! but i did it. you proud? lol) i just can't keep going like this. well, we came up with a plan, and we're getting it started as much as possible tomorrow. beyond that, it'll all start in full-force next week. a couple meetings need to happen, and some co-ordination through CCAC, but we're getting more help. i talked with our case manager today, and she's working on it now, and she's going to come over on tuesday and discuss things like Enhanced Respite, which is funding to help us with some more respite and help, and we're going to be getting a social worker, and i think there's a couple other things, too. i don't know. it all happened so fast this afternoon, i don't think i wrote everything down. but there you go. we're getting some more help.

meanwhile, asher continues to do recover nicely. he's having some trouble sleeping at night, though. this is probably because he moves a lot in his sleep, and his ribs and muscles don't like that. but he's really enjoying sitting in his stroller. i think he knows it's the easiest seat to get him out of right now, so it's his little way of helping right now. he's a wise one, that boy of mine. :)

ok, i think that's about it. i'm tired, asher's sore, the rest of us are coping as best we can, and we're getting some help. that's about all i got for tonight. i'll post again tomorrow after clinic and let you know how that went. talk to you later! :) h


Annie said...

So glad your getting more help my friend. Even more happy that you asked for it!!!! And sending some big {{{HUGS}}} your way!

amanda said...

thanks for the update. i've been thinking a lot about you guys this week. i'm glad to hear that you're getting the help. oscar and i were talking one night and thinking that he's a nurse, he has pediatric experience, maybe if you guys are comfortable with it, he could watch asher sometimes to give you some extra breaks. he's off during the week a lot so we could do it whenever. i could do something with blithe and bram and our kids. and then maybe we could even all hang out after (or before)! let us know if you think that could work.


Baby Seaton and family said...

Glad your getting some help! I hear you with breaking down. I am lucky to have a dietician and home nurse that like to visit together and in the throws of Yale's feeding issues, I burst into tears and vented for about 2 hours!
I hope you really feel some relief, and if you want, I'm always available for a visit! Somethings new and different... *shrug* the offer is out there...