Wednesday, June 23, 2010

home home home

we were finally able to go home on monday. the docs released us early in the morning, but we had to wait until 7pm to leave b/c home health care had to be set up. it was such torture knowing we were medically okay and ready to go, and all we were waiting for was a pump to be delivered. a little part of me was wondering why the hospital waited until the day we were being released to set this up. they knew we were going to need a pump, why not get things going before release. i was especially cranky when i found out that the social worker hadn't even ordered anything until 5pm, and that's when she learned about the 8 hour turn around...yikes. luckily my insurance company acted faster than they thought, and we got the pump at 6:30. it's a kangaroo joey, and so far i like it. it's small and pretty easy to use. kaiya has been such a trouper. she's more awake, more alert, just more "there" than she has been in a LONG time. she thinks everything is hilarious, and just sits around with a sly little smile on her face. she's actually making me regret not getting the g-tube sooner. has she been a little out of it b/c she was always a bit undernourished or dehydrated? she was gaining weight...but maybe she just wasn't getting the right kind of nutrients? i don't know, and will probably drive myself crazy thinking about it. we are using the tube for supplemental feeds. she isn't taking too much by mouth just yet, but she's working her way back up. i actually did my first gravity feed today while she was sleeping. how convenient is that? she gets to rest, and i can still give her the calories she needs.

Sunday, June 20, 2010

so far so good???

feeds were started last night at 6:30 pm. we started with pedialyte and once we realized she was tolerating that moved to pediasure at 12:30 am. she has been on continuous feeds of 45 cc's per hour since then and so far so good. she seemed to be in pain last night at around 2 am, but i think that it's her iv bugging her not her belly so much. she had been laying on the side where the iv is and she started crying when she turned over. it looks kind of red and puffy to me, but supposedly it's still flushing so it's good. i just want it out b/c iv's in the neck scare me! we gave her tylenol and she went back to sleep pretty quickly. a surgical resident visited us this morning and said that everything looks good. she didn't change the dressing, which i thought was odd...but she said that someone (a nurse i'm assuming?) would do that later. she said that as far as she is concerned, once we get to goal feeds we can go home. the g-tube is for supplemental use only so does that mean we're there? her pediatrician isn't going to let us go till tomorrow anyway so i guess i'll just have to give up on my dreams of sleeping in my own bed till later. kaiya seems to like the bed here though. it might be time for mama to give in and get her a new bed. one that she actually fits in =) my next job is to start figuring out where the heck i get all the supplies for this new adventure we're on. i don't know if the hospital gives us a pump or if i should be making calls to my insurance company about what to use...or if i even need one? some people use gravity right? i need one of these nurses or docs to come in and let me know what the heck to do!

Saturday, June 19, 2010

the morning after

the kiddo had kind of a rough night. her heart rate was high and her oxygen saturation was low. she was put on oxygen and her sats still didn't get above 94 until this morning. the resident thought that her heart rate might be high because she hadn't had anything to eat or drink so she might be getting a bit dehydrated even though she has iv fluids. she bumped up her fluid rate and that brought her heart rate down a little. she stayed around 130-135 all night long. she is now sitting around 110. her usual is high 60s low 70s so this is still high for her. she started to cough at one point in the night and her heart rate went from 140 to 60 really fast. she lost all the color in her face. the nurse and i tried repositioning her and her heart rate came up a bit. she then started crying and her heart rate shot up to 185-190. so she was given morphine. she has some gunk in her throat that she can't quite cough up and of course she's being a stinker about getting it suctioned out. i don't know if that is what is affecting her oxygen sats or not. they put her on room air at around 8 am and she's still not getting much above 96. they did a blood draw this morning b/c she looks pretty pale. i haven't heard the results of that yet. a surgical resident came in and checked her out. he said that they would start feeds tonight. and as long as she tolerated them she could go home tomorrow. her pediatrician walked in 5 minutes later (with a surgical med student) and checked her over. he said that they would start feeds very slowly tonight and see how she responded. he doesn't see her going home any time before monday. do these people talk to each other?!? he listened to her belly and he didn't hear any bowel sounds. the nurse said the same thing earlier. kind of worrying...maybe they aren't hearing anything b/c she hasn't had anything?

i just feel so bad for her. when she wakes up she looks at me like "mama what the heck is going on here?!?!?!?" her eyes are all big and shocked. then she drifts back off to sleep. i hope she starts to perk up later. it's hard to know that she might be in pain and not be able to tell us =(

Friday, June 18, 2010

and then....

well, the g-tube procedure has finally been done. the scheduling got screwed up so we didn't do it wednesday. we were told we were going in thursday morning and that didn't happen. we finally were taken down thursday at around 4. they absolutely tortured kaiya trying to get an iv. three people were poking her at one time. it was awful. it always aggravates me when doctors that probably do 1 or 2 iv sticks a year grab my kid's arm and think that they are going to be the one that is going to work a miracle. she's an almost impossible stick - leave it to the professional pokers please! so the anesthesiologist finally called everyone off and said that he was going to use her jugular. i looked at him like he was insane, but i realized that it was the only place left - so i agreed with him. he got it right away and put some medicine in to calm her down. (why she wasn't given a bit of sedative beforehand i don't know...) so i was ushered out to the waiting room. 15 minutes later here comes the gi doc. he wasn't able to do the procedure...what?!?!? apparently miss kaiya's stomach is not in the typical position. it's up high in her ribcage. so we had to be referred to a surgeon to get the g-tube placed. instead of having the tube placed the easy way, kaiya was going to need an incision. i really really really wanted them to remove the iv in her jugular. i made quite a stink about it - and was denied. instead they pacified me by getting a "sitter" for our room. a girl sat next to kaiya's bed the whole night and made sure she didn't try to tear out the iv. the spot it is in occludes if she turns her head the wrong way so the girl also had to reposition her every time the alarm went off indicating an occlusion. ugh. so much fun trying to sleep with a stranger watching you.

we were told we would be going down for surgery in the morning. then we were told we would be going down at 2. they finally picked us up at 4. of course kaiya hasn't been able to eat anything for 2 days now because you can't eat when you're going to have surgery...mama was not a happy lady to say the least. they knew too b/c we were getting checked on by everyone all day long. so we were taken to the holding area and the anesthesiologist came out to talk to us. she was very concerned that kaiya still had a little cough. she almost cancelled the procedure b/c of it. but, in the end she decided to go for it. kaiya was taken back at around 5. the doctor was out talking to us by 5:30. he said the procedure went as planned and she did well. for some reason i was not taken back to recovery until 6. she gave me a few drunken smiles and went back to sleep. we left recovery at about 6:20 and she was snug as a bug back in her bed in her room by 6:30. at about 8 pm her oxygen saturation started dipping. she was hanging out in the 85 range and looked like breathing was difficult. we suctioned her and put her on some oxygen. she still isn't back at 100 like she was - she's sitting at around 92 or 93. but she has had anesthesia, pain medication, and seizure medication. plus she sounds like she has a lot of secretions going on. i'm a little concerned about her heart rate as well. she usually hangs out in the 60's at rest and if she is excited it goes into the high 70s or low 80s. right now it's up at 150. pretty high for this lil munchkin. the doc is supposed to come in and check her out again. we'll see what's up with this girl.

Wednesday, June 16, 2010

a lot has been going on since i last updated! kaiya was released from the hospital may 19th without any real idea of why she was refusing to eat. she went home hungrier than ever and was eating everything in sight for awhile. she left the hospital at 32 lbs and at her doctor appt 6 days later was already up to 36 lbs. we thought she was on her way back to her normal self. then on the last day of school she woke up with a cough (june 4th). she seemed sleepier, but it made sense with an oncoming cold. i let her rest, and the cough got worse. she sounded really congested and miserable, she wasn't eating, but she was drinking still. mommy started to feel the cold as well so i figured we were both just coming down with something. my throat felt like i swallowed glass so i could understand why she wasn't eating if she was feeling the same way. the week went on and her congestion seemed to be going away, she coughed less, but she wasn't improving with eating - she was actually eating less. so mommy finally conceded and made an appointment with the pediatrician for friday. we went in and she said kaiya's lungs sounded clear, there weren't any signs of infection in her ears or throat. she sent us for a blood test to check akaiya's seizure med levels since she was so sleepy. well, the blood test showed a really low platelet count. it was decided that she needed to be admitted to the hospital. i figured we were going to be admitted b/c kaiya had barely drank anything and had not eaten for a couple days, the whole platelet thing threw me off though. so we get to our room and i let them know that kaiya is a really hard stick so they needed to send in the professionals...10 sticks and 5 specialty teams later it was decided that an ng tube should be placed to hydrate her and they would look for an iv spot the next day if it was necessary. well, kaiya's mom is a klutz and ended up pulling out the ng tube the next morning b/c the tape got stuck to my arm...ugh. so they decided to try for an iv again. boo. we had a really great nurse come in and she was able to get a vein on the first try. unfortunately it was in kaiya's wrist. very painful spot. so we seemed to be in a bit of limbo b/c akaiya still wasn't eating, she was very sleepy, and no one could figure out why. kaiya then started having episodes where she seemed to be in a lot of pain. this kid is not usually a crier and she would flinch and start screaming. the docs were brought in to try and figure it out - and because they don't really know her they figured the crying was typical for a kid that was in the hospital. how is it typical for a kid to be laughing one minute and screaming the next? the thing they were most focused on was that she wasn't taking in enough nutrition to support herself and so it was decided that she needed a g-tube. the doc told them to reinsert the ng tube to make sure she could tolerate feeds and the surgery date was set. i was ok with her getting the g-tube. i actually had an appointment with this gi and that was one of the things i wanted to talk to him about. i was upset tho b/c i felt like there had to be a reason why she wasn't willing to eat. and there definitely had to be a reason for the pain. so finally her pediatrician came in and i told him my concerns and suggested that it might have something to do with her bladder? she didn't have any signs of infection, but maybe a kidney stone or something? she had had some distension in her lower abdomen that suggested maybe her bladder was holding on to the urine too long and maybe that was causing pain. so a renal ultrasound was done and everything looked great. then another doc came in and felt her bladder and suggested that if she continued to show signs of pain that there was a medicine she could take that would help loosen her bladder and urinate. well wouldn't you know that after all that the kid showed no signs of pain anymore? she has been back to her giggly wiggly self (a kid i haven't seen since before she started the phenobarbital honestly). i don't know what it was, or if it's really gone, but she seems to be feeling MUCH better. the nurses are all amazed at the change in her. she is smiling at them when they come in, she looks and responds when you talk to her. she's happy as a lark. she's bouncing around the bed. she's back to my old akaiya.

g-tube surgery is still set for this afternoon. i know that it is in kaiya's best interest to have the g-tube. she really doesn't ever drink enough, which may be why she has issues with constipation. and when she gets sick she loses weight so fast b/c she refuses to eat. so with this i'll be able to keep on top of all those issues. and she'll still be able to eat orally. i still don't know how i feel about the surgery though. i know she'll still be able to eat orally, but for some reason i feel like it's taking away her last "normal" function. plus it's another open port that just seems like an invitation for infection...oh well, just another twist on the trisomy highway.