Tuesday, June 23, 2009
6-23-09
That's right, she's home! First night went pretty smooth, besides a few slip ups (like not plugging any of the machines in over night so they're all dead this morning). She's so much more content and happy! Her vitals are doing really well now and I don't even think her O2 sensor went off at all last night! (Except when she threw up and I was moving her around.) So far so good!
Monday, June 22, 2009
Going Home!
Okay, first off, Harley's J tube surgery went great! We left for St. Joe's Hospital about 10:30am and got back to Los Ninos around 4:30pm. She was only in surgery for about an hour and then off to recovery where Chaplain Michelle (from St. Joe's Hospital: she came around alot when we were in the PICU) baptized her for us. It was short and sweet, just like I wanted.
The J tube has helped with her throwing up, but it's only slowed it down instead of stopping it like we thought. Now she's only throwing up mucous and clear liquid, sometimes stomach acid. She's only threw up a few times where there's any formula in it at all. Also, the first few times she threw up after the surgery there were spots of blood in it. That scared us, but the nurses were right: it was just from the surgery and it stopped. She's now only throwing up 1-3 times a day and she's actually getting more of the formula through her system, which is great! I wish it would have stopped the throwing up completely, but I'm sure Honey Bear appreciates not throwing up so much.
Okay, now for the BIG news: WE'RE GOING HOME TODAY! Or so they tell us. Cameron said he thinks Harley even knows because she's been more awake and happier today! I'm in close phone contact with Cameron, who's at the hospital with her (I have to work) and so far it's still on for today, even though we still haven't received her O2 monitor. Cameron also said they still have to check out apartment out (which we weren't aware they had to do!) which is okay, except her room itself. We moved her crib into the 'dining room' so she can 'hang out' with us, plus it's just EASIER, and we have no where else to put her toys. It's piled in her room, in her closet, etc. We still need to go through her clothes and get rid of alot of them, too. Oh, and they told Cameron we may need to move her crib AGAIN because it's by the kitchen, which has a stove, and she's on oxygen. Uuuugggghhh
Wednesday, June 17, 2009
6-17-09
Quick post today. I just found out last night that Harley's surgery is scheduled for Thursday. We'll leave Los Ninos around 10 or 10:30am and check into St. Joe's Hospital around 11am. Her surgery will be at 1pm. Apparently all they'll do is put the tube in through the hole for the G-tube and connect them. Not a major surgery, not even as major as when she first got the G-tube. After that she'll stay at Los Ninos at least for a few days for monitoring and (maybe just maybe) after that we'll be able to go home! I'm not sure if they'll let us or not (I think they just love Harley and don't want her to leave; she has that impact on people.) but her throwing up was the last concern Los Ninos had, so it's a good possibility!
Tuesday, June 16, 2009
6-15-09
We've now been in the hospital for 3 months. Harley has beat the odds more than once and is still fighting her little heart out as we speak. She's one determined little girl and will fight as long as it takes! Okay, now for the update:
Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.
Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.
We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.
Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).
All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )
Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.
Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.
We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.
Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).
All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )
Monday, June 8, 2009
06-08-09
So we are still at Los Ninos. Her meds are finally under contol (covered by insurance and all) but now they are worried about her throwing up so much (it's anywhere from 1-4 times a day it seems). Now there's talk of putting in the J part of a GJ tube (a tube that will go from her stomach to her intestines, basically so she CAN'T throw up). Doctors orders are in to talk to the surgeon who did her G tube (see if it's been long enough for the G part to heal).
On top of the throwing up, Harley now has a staph infection in her left eye (I didn't know that was possible!). We've been putting eye drops in (3 times a day) and that has seemed to have helped (otherwise her eye gets really crusty; has even crusted shut a few mornings).
On top of the staph infection, she also has an ear infection in her left ear, too. Apparently kids who throw up often are prone to getting ear infections. Our doctor said a study was done where they found stomach acid (or some enzyme from the stomach) in kids' ears who threw up alot (like, if they're sick and throwing up constantly, more than once a day or so). So, now we've started an antibiotic for that.
Harley's appointments to see all her doctors have all been set up and she's started going to them. First one was on Wednesday for the geneticist. Not much happened, they checked her out and had Cameron fill out paperwork for the first in-office visit. Dr. Amatto (geneticist) also had Cameron fill out paperwork for us to get genetic testing done, too. Not really to see IF we are carriers or have Alpers Syndrome (we obviously both are carriers and if we had Alpers we'd most likely have showed symptoms by now) but mostly for informational IF we have future children (it's looking like no at the moment...).
Harley had a swallow study done Friday, too. She was sat up in a therapy chair (like the one we have for her at Los Ninos) and given baruium in different consistencies. First they did the consistency of honey (with chocolate flavoring), which she swallowed, but aspirated (it went in her trachea/lungs). Next they did the consistency of pudding (tasted apparently like marshmellows...) which she swallowed a little bit of, aspirated a little (not as much as the consistency of honey) and kept the rest in her mouth. I thought she was choking! (But we were watching her airways on X-ray and could see she wasn't.) They used a syringe to take out what she wouldn't (not couldn't, WOULDN'T) swallow and when we got back to the hospital I suctioned out the rest. She is such a chipmonk! (Like me, I guess...) She kept most of the stuff in her cheeks! I made sure to brush her teeth really good, too.
Other than that, Harley's doing okay. I think she's ready to go home, though. I think we're all ready. Once we get her home I think she'll improve some more. It'll let us all relax a little bit and just enjoy being a family and spend more time together.
On top of the throwing up, Harley now has a staph infection in her left eye (I didn't know that was possible!). We've been putting eye drops in (3 times a day) and that has seemed to have helped (otherwise her eye gets really crusty; has even crusted shut a few mornings).
On top of the staph infection, she also has an ear infection in her left ear, too. Apparently kids who throw up often are prone to getting ear infections. Our doctor said a study was done where they found stomach acid (or some enzyme from the stomach) in kids' ears who threw up alot (like, if they're sick and throwing up constantly, more than once a day or so). So, now we've started an antibiotic for that.
Harley's appointments to see all her doctors have all been set up and she's started going to them. First one was on Wednesday for the geneticist. Not much happened, they checked her out and had Cameron fill out paperwork for the first in-office visit. Dr. Amatto (geneticist) also had Cameron fill out paperwork for us to get genetic testing done, too. Not really to see IF we are carriers or have Alpers Syndrome (we obviously both are carriers and if we had Alpers we'd most likely have showed symptoms by now) but mostly for informational IF we have future children (it's looking like no at the moment...).
Harley had a swallow study done Friday, too. She was sat up in a therapy chair (like the one we have for her at Los Ninos) and given baruium in different consistencies. First they did the consistency of honey (with chocolate flavoring), which she swallowed, but aspirated (it went in her trachea/lungs). Next they did the consistency of pudding (tasted apparently like marshmellows...) which she swallowed a little bit of, aspirated a little (not as much as the consistency of honey) and kept the rest in her mouth. I thought she was choking! (But we were watching her airways on X-ray and could see she wasn't.) They used a syringe to take out what she wouldn't (not couldn't, WOULDN'T) swallow and when we got back to the hospital I suctioned out the rest. She is such a chipmonk! (Like me, I guess...) She kept most of the stuff in her cheeks! I made sure to brush her teeth really good, too.
Other than that, Harley's doing okay. I think she's ready to go home, though. I think we're all ready. Once we get her home I think she'll improve some more. It'll let us all relax a little bit and just enjoy being a family and spend more time together.
Thursday, May 28, 2009
May 28th
We FINALLY got Harley's equipment yesterday (feeding pump, suction machine to suck yuckies out of her mouth/nose & nebulizer for her breathing treatment) and I got (briefly) trained on them. To be honest, they aren't as difficult to work as I thought. The suction machine and her nebulizer are just air compressors (the nebulizer is EXACTLY like a little air compressor my dad has) and the feeding pump is EASIER than the hospital one, so I'm set! Los Ninos is getting everything ready for us to leave, too. They've set up her follow up appointments (cardiologist, neurologist, etc.) and for 1 more test (swallow study- to see how likely she is to aspirate [food/ drink go in her lungs] while eating). Everything's set... except her meds.
Harley has 12, yes 12 prescriptions. Only 4 are covered by insurance. Most of them are injectables (we need needles to draw them up, but ultimately they go in her G-tube) and insurance doesn't like to pay for those. So, Los Ninos is doing all they can to get them covered and to get us on more programs that can help us out. They've been really great to us at Los Ninos. The only complaint we've had about ANY of the staff there is (and I quote Cameron): "Aww, this nurse makes us wake up in the night (for Harley's meds)." And I can live with them making us be responsible! Anyway, the new 'release date' that we're shooting for is early next week.
We FINALLY got our carpets shampooed (is that how you spell shampooed?), actually Cameron rented a Rug Dr. and did it himself- he didn't know it'd be that much work! We threw out a couch to make room for Harley's crib in the living room and now we're just looking for a tall table to put her meds on when we're getting them all together. In the meantime we'll just use a TV tray. Our house is close to being ready!
Harley has 12, yes 12 prescriptions. Only 4 are covered by insurance. Most of them are injectables (we need needles to draw them up, but ultimately they go in her G-tube) and insurance doesn't like to pay for those. So, Los Ninos is doing all they can to get them covered and to get us on more programs that can help us out. They've been really great to us at Los Ninos. The only complaint we've had about ANY of the staff there is (and I quote Cameron): "Aww, this nurse makes us wake up in the night (for Harley's meds)." And I can live with them making us be responsible! Anyway, the new 'release date' that we're shooting for is early next week.
We FINALLY got our carpets shampooed (is that how you spell shampooed?), actually Cameron rented a Rug Dr. and did it himself- he didn't know it'd be that much work! We threw out a couch to make room for Harley's crib in the living room and now we're just looking for a tall table to put her meds on when we're getting them all together. In the meantime we'll just use a TV tray. Our house is close to being ready!
Monday, May 25, 2009
May 25th
We just got moved to Los Ninos Thursday and they're already trying to discharge us tomorrow! We haven't even gotten our equipment for her yet! I won't let them discharge us until I feel 100% comfortable on all her equipment. I think it's more or less the insurance discharging us than the place itself. Oh well, though, you gotta roll with the puches, right?
Other than that, Harley is doing great! She stopped throwing up, at least for a few days now (we think it was because of her medicine Clinazapan [probably didn't spell that right, but I tried], it was a pill that dissolved under her tongue and once we started disolving it in water and giving it through her G-tube [which was 'okayed' through the doctors] she stopped throwing up, it seems). Also, we FINALLY had her re-evaluated by the speech therapist at Los Ninos and they confirmed that she CAN swallow! We can now give her ice chips (even though she didn't like cold things before this, but maybe she'll give in a little since the only other thing that goes in her mouth is a toothbrush). It's a small step, but an important one showing that she's improving towards being able to eat (or at least drink her formula from a bottle)! How exciting is that!?!?
I know this is going to be extremely hard caring for Harley at home now, but she'll appreciate being in a familiar environment and being able to just relax. We're in the process of setting up our house for her (moving her crib into the family room, getting rid of all the clothes that are too small for her that we started to do, but got lazy and stopped, and also get rid of some toys of her's- we're not mean, she just has AAAAALLLLLLLLLLOOOOOOOTTTTT of them!) so it'll be move convenient for us to take care of her, and so she can hang out with us instead of lock herself up in her room! (Lol!)
But seriously, it'll be nice once we're all home. I know it will be alot of exhausting, never-ending work, but who said being a parent was easy? I'm not a hero like firefighters, police officers, military men & women, doctors, nurses, etc. I don't have an extrodinarily big heart like Mother Theresa. I don't have patience like a saint (if you know me at all I've probably blown up on you- I'm that bad sometimes!). I'm just being 'Mom'. I see my baby girl needs me so I do what I can. I can't perform a miracle to make her brain grow back so she can walk and talk and play like normal again (though we all wish we could), so instead I am her advocate. I look into her eyes, almost straight to her soul. I see if she's mad, I listen if she swallows (when everyone else says she can't), I talk to her and hold her and find out what she wants (as best I can) and I let everyone know. It's the only thing I can really do for her (besides research everything until I stumble upon something helpful and find out the doctors are 1 step ahead of me), so I'm going to do it!
Other than that, Harley is doing great! She stopped throwing up, at least for a few days now (we think it was because of her medicine Clinazapan [probably didn't spell that right, but I tried], it was a pill that dissolved under her tongue and once we started disolving it in water and giving it through her G-tube [which was 'okayed' through the doctors] she stopped throwing up, it seems). Also, we FINALLY had her re-evaluated by the speech therapist at Los Ninos and they confirmed that she CAN swallow! We can now give her ice chips (even though she didn't like cold things before this, but maybe she'll give in a little since the only other thing that goes in her mouth is a toothbrush). It's a small step, but an important one showing that she's improving towards being able to eat (or at least drink her formula from a bottle)! How exciting is that!?!?
I know this is going to be extremely hard caring for Harley at home now, but she'll appreciate being in a familiar environment and being able to just relax. We're in the process of setting up our house for her (moving her crib into the family room, getting rid of all the clothes that are too small for her that we started to do, but got lazy and stopped, and also get rid of some toys of her's- we're not mean, she just has AAAAALLLLLLLLLLOOOOOOOTTTTT of them!) so it'll be move convenient for us to take care of her, and so she can hang out with us instead of lock herself up in her room! (Lol!)
But seriously, it'll be nice once we're all home. I know it will be alot of exhausting, never-ending work, but who said being a parent was easy? I'm not a hero like firefighters, police officers, military men & women, doctors, nurses, etc. I don't have an extrodinarily big heart like Mother Theresa. I don't have patience like a saint (if you know me at all I've probably blown up on you- I'm that bad sometimes!). I'm just being 'Mom'. I see my baby girl needs me so I do what I can. I can't perform a miracle to make her brain grow back so she can walk and talk and play like normal again (though we all wish we could), so instead I am her advocate. I look into her eyes, almost straight to her soul. I see if she's mad, I listen if she swallows (when everyone else says she can't), I talk to her and hold her and find out what she wants (as best I can) and I let everyone know. It's the only thing I can really do for her (besides research everything until I stumble upon something helpful and find out the doctors are 1 step ahead of me), so I'm going to do it!
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