I'm happy to announce that Lily is finally feeling better. It took over two weeks to get this way, but I can now say she is 100% better.
Today was such a great day because she was in a good mood and did well for her speech therapist, and Soleil was in a good mood, too, because she's feeling better as well.
Lily actually surprised me during her speech therapy. I have these mesh feeding bags. Basically, you lock food in them so babies can suck the juice out of the food that's in it without choking. I've been using one with Lily--putting apples, oranges, even popcorn in it. She's accepted all, but a little reluctantly at first, and then would only take a small portion of it in her mouth. I still think she got the flavor, though.
Today, however, I put strawberries from our CSA in the bag. Lily was still a little reluctant, at first, but once she got the taste in her mouth, she opened her mouth wide and chomped down on a much bigger portion of the bag! She sucked on it and swallowed, and only a few times did a little juice drip out of her mouth. The ST and her assistant had to pry Lily's mouth open to get the bag out! The ST called it wonderful progress. Way to go Lily!
Tuesday, February 21, 2012
Thursday, February 16, 2012
She Just Can't Seem to Shake It
Last night, I posted a picture on Facebook of a smiling Lily. I said how she was smiling and cooing and all over the place. This morning, we woke up to a runny nose, rattly breathing, and an unhappy Lily. We've been dealing with some type of sickness in her for over two weeks now. Twice, we thought it was better. That lasted for a day, then the sickness came again. As did the vomiting and the unhappiness and all the fun stuff that goes along with a cold.
Soleil is still cruising around with a runny nose and a cough and is very cuddly. It's sweet, but when you have another child who needs to be cuddled, much doesn't get done around here. Thankfully, Dave does not love me for my ability to clean house. He does love me for the mother than I am, and right now, that and nurse are about all I'm able to do.
Valentine's Day was very low key. We were going to go see a guy named Jay Clifford play downtown, but with the kids sick, we just couldn't do that to Autumn, so we stayed home and had homemade extreme fries instead. (Think french fries covered in chili, (no-heat) jalepenos, ranch dressing, onions, and cheese! A potential heartburn nightmare, but oh so delicious!) Dave got me blueberry bushes to plant in our backyard even after I asked him not to give me anything since I'd not been to the store to get him anything because of the girls being sick. (I know I could have made him something, but I was literally taking care of sick children all day long. Oh, but don't you worry, I have something really nice planned for our anniversary!)
I'm so ready for these colds to be gone. Last night we got to see Lily like she usually is, and it was so energizing. I was greatly in need of my happy Lily fix. I just hate seeing her this way and knowing that she's miserable. It's troubling, too, because I always worry what it's doing to her body--the increased apnea when she's sleeping, the heavy breathing and coughing, the high heartrate. These are things I don't take lightly, things that I take for granted in a healthy child's cold. I'm hoping that spring will be a little kinder to Lily. And I'm hoping that soon I'll be able to post a happy face that stays around for more than a day.
Soleil is still cruising around with a runny nose and a cough and is very cuddly. It's sweet, but when you have another child who needs to be cuddled, much doesn't get done around here. Thankfully, Dave does not love me for my ability to clean house. He does love me for the mother than I am, and right now, that and nurse are about all I'm able to do.
Valentine's Day was very low key. We were going to go see a guy named Jay Clifford play downtown, but with the kids sick, we just couldn't do that to Autumn, so we stayed home and had homemade extreme fries instead. (Think french fries covered in chili, (no-heat) jalepenos, ranch dressing, onions, and cheese! A potential heartburn nightmare, but oh so delicious!) Dave got me blueberry bushes to plant in our backyard even after I asked him not to give me anything since I'd not been to the store to get him anything because of the girls being sick. (I know I could have made him something, but I was literally taking care of sick children all day long. Oh, but don't you worry, I have something really nice planned for our anniversary!)
I'm so ready for these colds to be gone. Last night we got to see Lily like she usually is, and it was so energizing. I was greatly in need of my happy Lily fix. I just hate seeing her this way and knowing that she's miserable. It's troubling, too, because I always worry what it's doing to her body--the increased apnea when she's sleeping, the heavy breathing and coughing, the high heartrate. These are things I don't take lightly, things that I take for granted in a healthy child's cold. I'm hoping that spring will be a little kinder to Lily. And I'm hoping that soon I'll be able to post a happy face that stays around for more than a day.
Tuesday, February 7, 2012
Our Little Trooper
I think I can finally exhale. The past few days have been quite scary for us, but today, Lily has been her smiley, playful little self. What a trooper!
When Dave took her to the emergency room, it was actually the second time in three days that she had been. Both times, her breathing didn't sound good, her SATs were low, and she was hardly moving. Plus, her eyes just looked. . .sick. No, more like the I'm too tired to fight this battle sick. I was scared and, literally, holding my breath.
But every time we had gone to the doctor or the ER, Lily's lungs sounded clear. She even had a clear chest x-ray. They would suction her out with their machine, and her SATs would go up. After the first ER visit, we got Lily's pulmonologist to prescribe a steroid for her, and the next day, we got her pediatrician to prescribe an antibiotic. Today, although still a little snotty, she's feeling so much better. Either the meds worked or the virus ran its course.
We also got, today, a suctioning machine. Hopefully, that will reduce ER visits when a bit of deep suctioning is all that's needed. I'm telling you, we were pulse-ox watchers! It was THAT bad!
Gabriel is now sick, and I'm hoping that whatever he has is what Lily had and not a different cold that we're going to have to fight all over again. It's quite exhausting!
In other news. . .who has two thumbs and has another baby on the way? This guy (see below. . .by the way, he's my husband). :) Crazy, huh?!
When Dave took her to the emergency room, it was actually the second time in three days that she had been. Both times, her breathing didn't sound good, her SATs were low, and she was hardly moving. Plus, her eyes just looked. . .sick. No, more like the I'm too tired to fight this battle sick. I was scared and, literally, holding my breath.
But every time we had gone to the doctor or the ER, Lily's lungs sounded clear. She even had a clear chest x-ray. They would suction her out with their machine, and her SATs would go up. After the first ER visit, we got Lily's pulmonologist to prescribe a steroid for her, and the next day, we got her pediatrician to prescribe an antibiotic. Today, although still a little snotty, she's feeling so much better. Either the meds worked or the virus ran its course.
We also got, today, a suctioning machine. Hopefully, that will reduce ER visits when a bit of deep suctioning is all that's needed. I'm telling you, we were pulse-ox watchers! It was THAT bad!
Gabriel is now sick, and I'm hoping that whatever he has is what Lily had and not a different cold that we're going to have to fight all over again. It's quite exhausting!
In other news. . .who has two thumbs and has another baby on the way? This guy (see below. . .by the way, he's my husband). :) Crazy, huh?!
Sunday, February 5, 2012
Another ER Visit
Dave is on his way to the ER with Lily. Sats in the 70s/80s range. Heart rate has been higher than normal. She's had a cold, but a chest x-ray on Friday revealed nothing. She can't sleep for constant apnea and just looks sick in her eyes and in her coloring. Poor thing. Please pray that all goes well and that this is just a bad bug that takes a few days to get rid of.
Wednesday, February 1, 2012
Silent Conversation
A long (long) time ago, my best friend, Yvonne, and I were driving down the road, not saying anything to each other. She looked over at me and said, "You know you're with your best friend when you can drive down the road, not saying anything, and feel completely comfortable in the silence." She was so right. In that silence, in that comfort, so much was said between us--these two best friends--that we didn't need words.
The same can be said between me and Lily. Don't get me wrong, she's a very vocal little girl! But there are times when we're just sitting together, in the silence, and I leave that moment feeling as if an entire conversation had just occurred. Of course, I couldn't tell you anything that we talked about, but the moment itself is so refreshing and fulfilling. Like a conversation with God.
Lily has that power. The power to communicate without saying a word, without making a sound. Her eyes express so much, but it's not just in her eyes. It's in her being. It's part of her gift.
It kills me to know that there are people out there who don't think our Trisomy 18 kids have much to offer. I can't say I have refreshing, fulfilling conversations every time I have a conversation with a 'normal' person. As a matter of fact, there are many conversations I leave unsatisfied. So in that respect, Lily, with all of her disabilities, offers more.
***My little girl is sick. She finally got her medication on Friday, but now we're dealing with a strong cough that's causing her to vomit. And a fever. She's sleeping right now, but she's having a lot of apnea spells. Her poor little sinuses get so clogged! Please pray for a quick recovery.***
The same can be said between me and Lily. Don't get me wrong, she's a very vocal little girl! But there are times when we're just sitting together, in the silence, and I leave that moment feeling as if an entire conversation had just occurred. Of course, I couldn't tell you anything that we talked about, but the moment itself is so refreshing and fulfilling. Like a conversation with God.
Lily has that power. The power to communicate without saying a word, without making a sound. Her eyes express so much, but it's not just in her eyes. It's in her being. It's part of her gift.
It kills me to know that there are people out there who don't think our Trisomy 18 kids have much to offer. I can't say I have refreshing, fulfilling conversations every time I have a conversation with a 'normal' person. As a matter of fact, there are many conversations I leave unsatisfied. So in that respect, Lily, with all of her disabilities, offers more.
***My little girl is sick. She finally got her medication on Friday, but now we're dealing with a strong cough that's causing her to vomit. And a fever. She's sleeping right now, but she's having a lot of apnea spells. Her poor little sinuses get so clogged! Please pray for a quick recovery.***
Wednesday, January 25, 2012
The Sounds of Reflux
I know that sound. It comes, now, with every breath. It sounds like congestion, but there's no runny nose. There's no cough. It's as if something is hanging in the back of Lily's nasal passages, but no matter how much we suction or spray, we get nothing.
I know that sneeze. It is a wet, sloppy sneeze. A warning. It usually comes either while we're feeding Lily or soon after, and it means there probably will be vomiting. It is the sneeze that, when I hear it at night, I either jump out of bed and run to hers or I hold my breath and wait to see if there's any other sound that might indicate this little girl needs her mommy.
I know that cry. It is one of pain from the burning of the gastric acids oozing up her esophagus or the trauma from vomiting. Here lately, there's also been a tinge of frustration added to it, one that says, "Why does this have to happen to me, Mommy?"
And I know that silence. It comes between breaths when she sleeps, more frequently now that the reflux is back. It is always followed by three or four strong, fast breaths, those that always want to catch up from the few that were missed. It is called apnea, and it is aggravated by the reflux. It can also cause pulmonary hypertension. Not something to be taken lightly.
I know these sounds, even though I haven't heard them for over a month and a half. They echo and haunt our house, rather unnecessarily, and they burn through my soul. All of these sounds could be avoided with medicine. But our insurance company has created this process that people must go through before they will approve such medicine. To me, it's an unnecessary process because the generic (that they were willing to pay for) isn't being made anymore. It just makes sense to me that if the generic isn't being made, an option should be the brand name, especially if the doctor has requested it. Instead, Lily has been waiting over a week and a half for the brand name to be approved. And that's why all of these sounds are back.
***Lily has vomited for the past two days. This morning, it was out of both of her nostrils and running down her mouth, and she was crying and had this pained look on her face. It took every ounce of strength that I had not to take a picture of her, but after listening to her cry and watching her jerk back, I told her that if it happens again, I'm taking a picture and posting it everywhere I can think of. I'm sending it to the newspaper and the insurance company along with whatever type of letter it takes to get someone's attention. I wanted to call and scream at whoever answered the phone, "Do you hear what your process is doing to my child!?!" I'm so. very. angry. over this. To the point where I think I need prayers for peace of mind. It's just very hard when this happens to your own child.***
I know that sneeze. It is a wet, sloppy sneeze. A warning. It usually comes either while we're feeding Lily or soon after, and it means there probably will be vomiting. It is the sneeze that, when I hear it at night, I either jump out of bed and run to hers or I hold my breath and wait to see if there's any other sound that might indicate this little girl needs her mommy.
I know that cry. It is one of pain from the burning of the gastric acids oozing up her esophagus or the trauma from vomiting. Here lately, there's also been a tinge of frustration added to it, one that says, "Why does this have to happen to me, Mommy?"
And I know that silence. It comes between breaths when she sleeps, more frequently now that the reflux is back. It is always followed by three or four strong, fast breaths, those that always want to catch up from the few that were missed. It is called apnea, and it is aggravated by the reflux. It can also cause pulmonary hypertension. Not something to be taken lightly.
I know these sounds, even though I haven't heard them for over a month and a half. They echo and haunt our house, rather unnecessarily, and they burn through my soul. All of these sounds could be avoided with medicine. But our insurance company has created this process that people must go through before they will approve such medicine. To me, it's an unnecessary process because the generic (that they were willing to pay for) isn't being made anymore. It just makes sense to me that if the generic isn't being made, an option should be the brand name, especially if the doctor has requested it. Instead, Lily has been waiting over a week and a half for the brand name to be approved. And that's why all of these sounds are back.
***Lily has vomited for the past two days. This morning, it was out of both of her nostrils and running down her mouth, and she was crying and had this pained look on her face. It took every ounce of strength that I had not to take a picture of her, but after listening to her cry and watching her jerk back, I told her that if it happens again, I'm taking a picture and posting it everywhere I can think of. I'm sending it to the newspaper and the insurance company along with whatever type of letter it takes to get someone's attention. I wanted to call and scream at whoever answered the phone, "Do you hear what your process is doing to my child!?!" I'm so. very. angry. over this. To the point where I think I need prayers for peace of mind. It's just very hard when this happens to your own child.***
Sunday, January 22, 2012
Lily's Medication
I was asked the other day what medication Lily was on. I thought, instead of emailing the person directly, that I would post the list of her medication and some trouble that we've had with it along the way.
Miralax: Dave gives Lily this in the morning while he's getting ready to go to work. She gets 1 teaspoon mixed in 4 ounces of water. This helps with Lily's constipation.
Erythromicin: (Not sure I spelled this one correctly.) Lily gets 1 ml of this before she has her formula. Every time. We had a time with this one at the pharmacy. The generic version was on backorder at the pharmacy we go to, so I had to go downtown to the hospital pharmacy to pick up this one. Not very convenient, unless Lily had an appointment there. But now the pharmacy down the road has it, so we can get it from there. The weird thing is that the medicine we got from the pharmacy was white and didn't have to be refrigerated, nor did it expire. The medicine from the closer pharmacy is pink, has to be refrigerate, and only lasts for ten days. I think I'd rather get the medicine from the hospital pharmacy, even though time/distance-wise it's a little more inconvenient. Lily takes this because her stomach empties slowly, which can cause vomiting and reflux.
Zantac: Lily gets 2 teaspoons of this at her first feeding and her last feeding. This helps with reflux. When she first started this, she was on it for only two weeks. After we stopped all of her medicine and realized she needed to back on it all, we came back to the Zantac (generic version of it) and have stayed on it this time. Whereas last time Lily's vomiting was sporadic, this time, it's been quite under control. Lily takes this medicine for reflux.
Prevacid: UGH!!! This medicine has been the biggest headache for us! At first, Lily was on the generic solutab version of this. I'd put it in a medicine dropper, pull up water, and then put it in her g-tube. Easy enough, although one time it did clog her tube, and I had to do a tube switch here at home by myself. (Not something I'm a big fan of doing, but at least I can do it.) Now, however, the generic version does not exist. INSURANCE--one of the biggest, greediest, I'll-pretend-I'm-helping-you-while-I-really-rip-you-off entities out there--(sorry, can you tell I've been a round or two with them?)--won't approve the brand name because it just so happens to cost $200 for a thirty day supply (I was also told it costs $600, but I didn't want eyeballs to pop out.) So while I'm waiting. . .and waiting. . .on a prior authorization (which is the BIGGEST joke because why can't the insurance company see that the doctor prescribed it in the first place for a REASON!!) (Oh, we've had the same run-in with Xopenex--which isn't supposed to increase heartrate, but is more expensive, and Albuterol, which causes high heartrate (Lily's heartrate generally runs high, she doesn't need a medicine that makes it worse.) But I digress, the prior authorization hasn't been approved, so we're giving Lily over-the-counter capsules that we have to break open and give via water. Problem is, the little tiny balls get stuck in the medicine dropper and in her extension tube, so she's not completely able to get this medicine. It just bothers me because she's been doing so well, and I'm so afraid she's going to revert back to the vomiting. Lily gets this medicine once a day.
Nasonex: I'll admit that I'm bad with this medicine. I don't always give it to Lily because I just can't stand to think that she's on so much medicine. This is more for her allergies, which haven't seemed to be acting up, so I've not felt the need to give it to her. A nurse did tell me that a good way to handle it is to give it on three months, off three months: March - May and Sept. - Nov. (I think those are the months she said. Anyway, the allergy-season months.)
Poly-Vi-Sol with Iron: Not a medicine, but a vitamin. Lily's hemoglobin came back low at one of her appointments, so she was put on that. One ml once a day.
There you have it. Those are Lily's medicines. We wish she didn't have to be on so many, but if it makes her systems work, they're better for her. I know that, compared to other children with her condition, it's not a whole lot, and for that I'm thankful, but like I said, I wish she didn't have to be on any. Sorry about my bitterness with insurance. I'm grateful that we have it, no doubt, but they are out there to make a profit, and when money gets in the way of making decisions about people's health, I just have trouble accepting that. Big trouble!
Lily's on the floor going c.r.a.z.y. right now. She's so happy and rolling back and forth and beating her arms like she's playing the drums. I think she needs a little stimulation before bedtime. :)
Miralax: Dave gives Lily this in the morning while he's getting ready to go to work. She gets 1 teaspoon mixed in 4 ounces of water. This helps with Lily's constipation.
Erythromicin: (Not sure I spelled this one correctly.) Lily gets 1 ml of this before she has her formula. Every time. We had a time with this one at the pharmacy. The generic version was on backorder at the pharmacy we go to, so I had to go downtown to the hospital pharmacy to pick up this one. Not very convenient, unless Lily had an appointment there. But now the pharmacy down the road has it, so we can get it from there. The weird thing is that the medicine we got from the pharmacy was white and didn't have to be refrigerated, nor did it expire. The medicine from the closer pharmacy is pink, has to be refrigerate, and only lasts for ten days. I think I'd rather get the medicine from the hospital pharmacy, even though time/distance-wise it's a little more inconvenient. Lily takes this because her stomach empties slowly, which can cause vomiting and reflux.
Zantac: Lily gets 2 teaspoons of this at her first feeding and her last feeding. This helps with reflux. When she first started this, she was on it for only two weeks. After we stopped all of her medicine and realized she needed to back on it all, we came back to the Zantac (generic version of it) and have stayed on it this time. Whereas last time Lily's vomiting was sporadic, this time, it's been quite under control. Lily takes this medicine for reflux.
Prevacid: UGH!!! This medicine has been the biggest headache for us! At first, Lily was on the generic solutab version of this. I'd put it in a medicine dropper, pull up water, and then put it in her g-tube. Easy enough, although one time it did clog her tube, and I had to do a tube switch here at home by myself. (Not something I'm a big fan of doing, but at least I can do it.) Now, however, the generic version does not exist. INSURANCE--one of the biggest, greediest, I'll-pretend-I'm-helping-you-while-I-really-rip-you-off entities out there--(sorry, can you tell I've been a round or two with them?)--won't approve the brand name because it just so happens to cost $200 for a thirty day supply (I was also told it costs $600, but I didn't want eyeballs to pop out.) So while I'm waiting. . .and waiting. . .on a prior authorization (which is the BIGGEST joke because why can't the insurance company see that the doctor prescribed it in the first place for a REASON!!) (Oh, we've had the same run-in with Xopenex--which isn't supposed to increase heartrate, but is more expensive, and Albuterol, which causes high heartrate (Lily's heartrate generally runs high, she doesn't need a medicine that makes it worse.) But I digress, the prior authorization hasn't been approved, so we're giving Lily over-the-counter capsules that we have to break open and give via water. Problem is, the little tiny balls get stuck in the medicine dropper and in her extension tube, so she's not completely able to get this medicine. It just bothers me because she's been doing so well, and I'm so afraid she's going to revert back to the vomiting. Lily gets this medicine once a day.
Nasonex: I'll admit that I'm bad with this medicine. I don't always give it to Lily because I just can't stand to think that she's on so much medicine. This is more for her allergies, which haven't seemed to be acting up, so I've not felt the need to give it to her. A nurse did tell me that a good way to handle it is to give it on three months, off three months: March - May and Sept. - Nov. (I think those are the months she said. Anyway, the allergy-season months.)
Poly-Vi-Sol with Iron: Not a medicine, but a vitamin. Lily's hemoglobin came back low at one of her appointments, so she was put on that. One ml once a day.
There you have it. Those are Lily's medicines. We wish she didn't have to be on so many, but if it makes her systems work, they're better for her. I know that, compared to other children with her condition, it's not a whole lot, and for that I'm thankful, but like I said, I wish she didn't have to be on any. Sorry about my bitterness with insurance. I'm grateful that we have it, no doubt, but they are out there to make a profit, and when money gets in the way of making decisions about people's health, I just have trouble accepting that. Big trouble!
Lily's on the floor going c.r.a.z.y. right now. She's so happy and rolling back and forth and beating her arms like she's playing the drums. I think she needs a little stimulation before bedtime. :)
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