August and September so far has ended up kicking our butts! We were sick, and then the sickness kept recycling on and on. Lucy looked like she was feeling better.. But, then Friday the 6th I think that was the date anyway. A cough came back that had been gone for a week or so. It came back again and it sounded worse. I was trying to see if I could wait until that up coming Monday to take her in. Well, by Sunday I knew I had to take her to Primary Children's Hospital.
One guy whoever he was Attending, Resident who knows... He was like oh just monitor at home. Well, the real Doc came in and said she had Parainfluenza type 4. We don't know a lot about that kind, it's a newer test. It's kind of like having the croup they said. Well, he knew she had to be admitted and in she went. On Monday they tried giving her Nebulizer treatments. She was having a hard time breathing, they were worried about her carbon dioxide levels being high. Sure enough they were and they put her on a high flow of oxygen. When you are on a high flow of oxygen they send you to the PICU to monitor you. Well, I was very intimidated by this. Lucy has never gone to the PICU before. She had been in the NICU when she was first born, but this was going to be a little different. I was doing pretty well, I met another Mom that has a child with Trisomy 18. She is so strong, and it honestly helped calm me down. Sad things happened in the one night I was there with Lucy. Life is so precious, and these kids try to fight as long as they can. They are tough, but they don't have the same immune system as a regular healthy child does. Well, the next day Lucy was off High flow and came back to the infant unit. She was on the 4th floor this time, I hate being on that floor. We were in a double room, which makes me mad. We should have our own room, we are paying and come all the time. I won't go off on that further, I just get mad about it. So, Lucy just needed to be suctioned all the time and once she was her stats would go up. Any time they dipped, we would have her be suctioned. Well, we had to just suction her mouth in the end. Her poor little nose had gotten inflamed and bloody. So, we would just suction her mouth as long as we could without suctioning her nose.
I had some major frustration with the team working with Lucy. The medical student would come barging in at 6:00 am and tell me to wake up. Um no you don't do that. I got after her once and said to turn the light off. The hospital beds are not really beds, they are a piece of hard board you lay on really. I had about ten pillows that add up to really like 4. Because they don't have much cushion. My back and hips were in pain every time I woke up. They seriously need to get something better, it's ridiculous.
So, the team was looking at me like I'm crazy. We were supposed to go to Disneyland yesterday. I made sure everyone knew that we had that planned. The reason why I say this is because sometimes the team likes you to stay longer than needed. I want them to know hey, if we don't need to be here longer please don't make us be. We have a trip we are trying to go on and I can have her heal more quickly at home now that she is on a smaller amount of oxygen. She is on .25 a quarter of a liter. The thing is they don't know Lucy. They think look how fragile she is, this mom can't do it. Do they not know I've been doing this for almost 2 years now. Give me a little credit ladies. She is actually pretty darn tough as nails for how immobile she is. So, yeah we are still planning on going to Disneyland just going this week. I am going to see what her Pedi thinks tomorrow. She is actually making leaps and bounds since being home. She is acting herself, just hooked up to some oxygen in the day. I always have her on oxygen at night anyway. They don't want me to wean her off oxygen for a while, so I won't try until she sees the Pulmonologist. They were the one's to say that, so I will not do any weaning until they see her. Plus when we go on our trip, we will break up the driving where it would be the 3rd day from when we left that would have us in the Park. So, that gives even more time. We are taking it slow and going when the park is slow. Lucy left less than a week after her surgery with her g tube to Oregon. It was the best trip we probably have ever been on.
They pushed for vaccinations during our stay, I was getting so bothered. Honestly I would take the risk than having brain damage occur like it did before. Because the type of seizures that were triggered did that. Those doctor's don't know and they don't get it. If they did they wouldn't be pushing it. My pedi knows what happened and he has never once told us to have her get vaccines again. I trust him and he trusts me. That being said, anyone who is healthy should be up to date on their shots. This will help protect those that cannot be vaccinated. Also, Lucy had a study done for reflux. She sure does, and so the team decided last minute before we left to place a gj tube. I was hesitant since she threw up bile a ton when they tried to give her an nj tube last year. So, I told them.. But, they talked me into doing it. So an hour later we left and that night she was puking up bile. Yep, and when I call the hospital they weren't helpful since I was discharged. I was very unhappy that they would do that and send us on our way. On a weekend mind you! So, luckily the port she has, has a g tube port. So, I switched it back and she hasn't thrown up in 33 hours. I will get a new g tube button on Monday to switch out the j tube completely. Having her throw up bile over and over again compared to barfing once a day seems like a no brainer. Plus, I think she may go a while before barfing again. We have her on a slow continuous feed and she is on Prilosec. We have been on that for almost 2 weeks. I can tell the difference, and now I can really tell since she isn't getting bolus feeds. Maybe I will just always keep her on continuous if this doesn't make her barf as much. I want to do what's best for her.
I haven't had to suction Lucy very much since she's been home. She is getting breathing treatments that are comparable to nebulizer treatments just less equipment to carry. I pushed for that as well in the hospital, I kept telling them over and over again. Finally the Pulmonologist mentioned it, so of course they listened then! Well, it's really helped her, I just give it to her when I hear a little bit of a rattle. She hasn't needed it that much since being home.
Well, that is my update. I thank everyone for the prayers, treats, and lawn being mowed. And remember if you are sick don't come near my family. I promise I will love you more for letting me know. In fact I would probably even make you a treat for being considerate lol. I love baking, and I bake good treats just saying.
Lucy is doing better, I'm a bit sassy as you can tell from reading.
I'm amazed at seeing other Mom's strengths. And I got to see that this hospital stay, I needed to see that. It's nice to know that I'm not alone in this. It's a support system I need, they understand and help me. And if you would like to help other Mom's and families like me. Bring your ward or church group or family.. to make a meal at the new Ronald McDonald house in the hospital. It was nice to have a couple meals that tasted great from people that donated their time and money to help our stay be a little bit more bearable.
I would also like to say that last night for the first time Lucy really held on to my finger. I mean a really good grip. She has never had that great of a grip and cannot hold things. Well, she held my finger for a long time last night. Made my heart glad, it's the little things that mean the world to someone. And that my friends meant the world to me. I got a picture of it to share.
.JPG)
One guy whoever he was Attending, Resident who knows... He was like oh just monitor at home. Well, the real Doc came in and said she had Parainfluenza type 4. We don't know a lot about that kind, it's a newer test. It's kind of like having the croup they said. Well, he knew she had to be admitted and in she went. On Monday they tried giving her Nebulizer treatments. She was having a hard time breathing, they were worried about her carbon dioxide levels being high. Sure enough they were and they put her on a high flow of oxygen. When you are on a high flow of oxygen they send you to the PICU to monitor you. Well, I was very intimidated by this. Lucy has never gone to the PICU before. She had been in the NICU when she was first born, but this was going to be a little different. I was doing pretty well, I met another Mom that has a child with Trisomy 18. She is so strong, and it honestly helped calm me down. Sad things happened in the one night I was there with Lucy. Life is so precious, and these kids try to fight as long as they can. They are tough, but they don't have the same immune system as a regular healthy child does. Well, the next day Lucy was off High flow and came back to the infant unit. She was on the 4th floor this time, I hate being on that floor. We were in a double room, which makes me mad. We should have our own room, we are paying and come all the time. I won't go off on that further, I just get mad about it. So, Lucy just needed to be suctioned all the time and once she was her stats would go up. Any time they dipped, we would have her be suctioned. Well, we had to just suction her mouth in the end. Her poor little nose had gotten inflamed and bloody. So, we would just suction her mouth as long as we could without suctioning her nose.
I had some major frustration with the team working with Lucy. The medical student would come barging in at 6:00 am and tell me to wake up. Um no you don't do that. I got after her once and said to turn the light off. The hospital beds are not really beds, they are a piece of hard board you lay on really. I had about ten pillows that add up to really like 4. Because they don't have much cushion. My back and hips were in pain every time I woke up. They seriously need to get something better, it's ridiculous.
So, the team was looking at me like I'm crazy. We were supposed to go to Disneyland yesterday. I made sure everyone knew that we had that planned. The reason why I say this is because sometimes the team likes you to stay longer than needed. I want them to know hey, if we don't need to be here longer please don't make us be. We have a trip we are trying to go on and I can have her heal more quickly at home now that she is on a smaller amount of oxygen. She is on .25 a quarter of a liter. The thing is they don't know Lucy. They think look how fragile she is, this mom can't do it. Do they not know I've been doing this for almost 2 years now. Give me a little credit ladies. She is actually pretty darn tough as nails for how immobile she is. So, yeah we are still planning on going to Disneyland just going this week. I am going to see what her Pedi thinks tomorrow. She is actually making leaps and bounds since being home. She is acting herself, just hooked up to some oxygen in the day. I always have her on oxygen at night anyway. They don't want me to wean her off oxygen for a while, so I won't try until she sees the Pulmonologist. They were the one's to say that, so I will not do any weaning until they see her. Plus when we go on our trip, we will break up the driving where it would be the 3rd day from when we left that would have us in the Park. So, that gives even more time. We are taking it slow and going when the park is slow. Lucy left less than a week after her surgery with her g tube to Oregon. It was the best trip we probably have ever been on.
They pushed for vaccinations during our stay, I was getting so bothered. Honestly I would take the risk than having brain damage occur like it did before. Because the type of seizures that were triggered did that. Those doctor's don't know and they don't get it. If they did they wouldn't be pushing it. My pedi knows what happened and he has never once told us to have her get vaccines again. I trust him and he trusts me. That being said, anyone who is healthy should be up to date on their shots. This will help protect those that cannot be vaccinated. Also, Lucy had a study done for reflux. She sure does, and so the team decided last minute before we left to place a gj tube. I was hesitant since she threw up bile a ton when they tried to give her an nj tube last year. So, I told them.. But, they talked me into doing it. So an hour later we left and that night she was puking up bile. Yep, and when I call the hospital they weren't helpful since I was discharged. I was very unhappy that they would do that and send us on our way. On a weekend mind you! So, luckily the port she has, has a g tube port. So, I switched it back and she hasn't thrown up in 33 hours. I will get a new g tube button on Monday to switch out the j tube completely. Having her throw up bile over and over again compared to barfing once a day seems like a no brainer. Plus, I think she may go a while before barfing again. We have her on a slow continuous feed and she is on Prilosec. We have been on that for almost 2 weeks. I can tell the difference, and now I can really tell since she isn't getting bolus feeds. Maybe I will just always keep her on continuous if this doesn't make her barf as much. I want to do what's best for her.
I haven't had to suction Lucy very much since she's been home. She is getting breathing treatments that are comparable to nebulizer treatments just less equipment to carry. I pushed for that as well in the hospital, I kept telling them over and over again. Finally the Pulmonologist mentioned it, so of course they listened then! Well, it's really helped her, I just give it to her when I hear a little bit of a rattle. She hasn't needed it that much since being home.
Well, that is my update. I thank everyone for the prayers, treats, and lawn being mowed. And remember if you are sick don't come near my family. I promise I will love you more for letting me know. In fact I would probably even make you a treat for being considerate lol. I love baking, and I bake good treats just saying.
Lucy is doing better, I'm a bit sassy as you can tell from reading.
I'm amazed at seeing other Mom's strengths. And I got to see that this hospital stay, I needed to see that. It's nice to know that I'm not alone in this. It's a support system I need, they understand and help me. And if you would like to help other Mom's and families like me. Bring your ward or church group or family.. to make a meal at the new Ronald McDonald house in the hospital. It was nice to have a couple meals that tasted great from people that donated their time and money to help our stay be a little bit more bearable.
I would also like to say that last night for the first time Lucy really held on to my finger. I mean a really good grip. She has never had that great of a grip and cannot hold things. Well, she held my finger for a long time last night. Made my heart glad, it's the little things that mean the world to someone. And that my friends meant the world to me. I got a picture of it to share.
.JPG)
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