Well this warm weather has finally gotten to Luke. The night before last we started with some sniffles. Slowly they have went to more of a stuffed nose. The nose sucker has been unpacked for use with no success. The inhaler has also been unpacked for occasional use. Finally this morning the nebulizer has been unpacked. This is the worst part about packing early, you never know what you are going to need. The good thing, Luke hasn't slowed his eating pattern with the cold. And on Monday we leave for Indy for a Pulmonary appointment on Tuesday morning. That makes me feel a little at ease with his cold. However, I know I am not the only one that watches their kid like a hawk at these times.
I feel so uneasy when Luke isn't acting like his normal self. Thoughts fly through my mind: hospital stay, oxygen, rsv, apnea. I am not comfortable during these times. If Luke coughs I come running to check on him and make sure he is not choking. It is really bad in a car, I have to pull over to check on him. Then I wonder how bad do I let him get before we once again go to the ER. Now don't get the idea that he is horrible right now, he isn't. Luke just has a sniffled nose with a few clearing coughs. However the thought about how it could progress. Which hospital will I take him to? Will they understand if we want to go to Riley? Just things that are always there. We haven't had the best luck with Memorial Hospital's ER the last two times we have been there. Our new thought is to go to Goshen since they aren't as busy as Memorial and that they are IU Health and might be more open to a Riley transfer if we ever needed it. Sometimes I wish that we still had a tank of oxygen around here. I hated it when we had it, but I feel more comfortable just in case to give Luke a little help. I think I am always going to have a hard time thinking of Luke as a healthy child and not a needy preemie. Normal kids get colds, and normal kids don't need oxygen....but Luke isn't normal. I hate saying that, but right now I don't see him that way. I don't know where to draw the line. When will I feel comfortable with him sleeping all night? I have yet to sleep all night long since we have been home in September. First it was because he woke up. Now though, it is me just making sure he is breathing. Right before I fall asleep I have to get out of bed just to check once more on him. Then, because he is still in our room, I turn the TV down and listen to him breath. If I don't hear anything I have to jump up and put my hand on his chest. Once I'm finally comfortable then I can go to sleep, just to wake up again around 3am to listen and feel just to make sure. I even stare at him when he is asleep in the living room in his swing. I am always checking to see if his eyes look blue around them. There is always thoughts in the back of my head about what I would do if he wasn't breathing. How would I react? I wish I could calm my mind, but I have a feeling I will always be like this no matter how old he gets....sorry Luke, you have a hovering mother.
I pretty much wrote this blog in my head a couple hours ago as I lay in bed listening to him breath, wondering if I am the only weirdo out there. I hope I don't sound like a complete nut.
Showing posts with label Cold. Show all posts
Showing posts with label Cold. Show all posts
Friday, April 13, 2012
Monday, November 21, 2011
Emergency Room = Thumbs Down
Okay let me just start by saying that I am venting a lot in this post before anyone thinks I am going crazy. Last night Luke slept pretty good in his swing. He didn't get cranky till around 6am after Jonathin was home. He went into a lot of crying and hacking. This led to him breathing really hard to catch his breath. He also was retracting when he breathed. This is when he is sucking in his breath so strong that it sucks in right under his rib cage. We were always taught to watch for this at Riley as a sign as respiratory distress. So I decided to turn up his oxygen to where we originally started 2 months ago, just to give him a little help.
I figured that it would be best to call his pediatrician just to give them an update since our appointment on Friday. After leaving a message the nurse called me back. She said that Dr. Durham wasn't there yet, but the other doctors said we should take him to the emergency room because he is such a special case. So around 9am we headed to South Bend once again. We were able to get right in, surprising I know. The doctor seemed nice and he ordered a X-ray. My main worry was pneumonia and in the back of my mind, RSV. I didn't think that was the case, but a preemie mom's mind wanders. After 3 hours or so the doctor came back in to explain the situation. The X-ray didn't really worry him at all. His exact words were, "If he was a term baby I would send him home now. But since he is an extreme preemie we would like to admit him for a couple hours to monitor him." Gotta love the special circumstances preemies get. However he explained there really wasn't anything they could do for Luke. Not a medicine, not a breathing treatment, just sit and watch him.
The doctor then stepped out and we were left to ourselves for another 2 hours to discuss things. The more Jonathin and I sat there the more we decided against their advice. Luke had calmed down and even the doctor said he looked fine when he was calm. I figured I could watch him as much as the nurses could. Let me explain....the nurses never checked on us once in the 5 hours we were in the ER. Also when we would push the nurse button it would alarm for 8-10 minutes before someone would remotely notice. Usually someone would come in and turn it off, then retreat for our nurse without even saying a word to us. Jonathin joked, how could this be an ER. At this point I was getting upset. Once we were able to find our nurse we told her we decided to take Luke home. I don't think she liked us taking a stand. So for the next hour or so we got the run around about the doctor wanting to talk to us again and how the peds department thought it would be best for us to go upstairs. No one would listen to us.
Finally the doctor came in and turned into a jerk. He pretty much told Jonathin and I we were idiots. His exact words were..."Are you prepared to go home and your son to stop breathing?" Okay, this really pushed me off the deep end. I then explained to him that for 5 months we were with Luke and know him front to back, and we have an apnea monitor at home also. He got snippy with us, because I did not share all of this knowledge in the first place. No offense, but he knew Luke was a micro preemie and that we spend over 3 months in the hospital with him. It was like he thought we were so naive, and didn't know anything. At this point I couldn't get out of there sooner. He said that he only let idiots sign an AMA (Against Medical Advise), however now we don't sound like idiots so he would discharge. I couldn't get Luke in his car seat quicker. I understand that they get parents that are so clueless sometimes, but is that how we really looked. I mean we came in there explaining the situation and speaking like we at least had some since. I was just really put off by the situation.
All I could say to Jonathin is next time we have an emergency, we will drive to Riley. How sad is that, we would drive over 3 hours away. I tried to explain to the doctor that I would rather be home watching Luke instead of sitting in the germ infested Disneyland called the Peds Floor. I'm going over the immune deficiency that Luke is fighting, and it is like talking to a wall.
So we were finally home around 3pm this afternoon and we all then took a nap. I think we all needed it after our day. Knock on wood, Luke hasn't coughed since we have been home and is looking comfortable in his Daddy's arms as they play the Xbox. Hopefully we can have a comfortable day tomorrow with no excitement. I mean nothing against Memorial Hospital, but I was not impressed today. Hope we can stay hospital free for awhile for now.
Jordan
I figured that it would be best to call his pediatrician just to give them an update since our appointment on Friday. After leaving a message the nurse called me back. She said that Dr. Durham wasn't there yet, but the other doctors said we should take him to the emergency room because he is such a special case. So around 9am we headed to South Bend once again. We were able to get right in, surprising I know. The doctor seemed nice and he ordered a X-ray. My main worry was pneumonia and in the back of my mind, RSV. I didn't think that was the case, but a preemie mom's mind wanders. After 3 hours or so the doctor came back in to explain the situation. The X-ray didn't really worry him at all. His exact words were, "If he was a term baby I would send him home now. But since he is an extreme preemie we would like to admit him for a couple hours to monitor him." Gotta love the special circumstances preemies get. However he explained there really wasn't anything they could do for Luke. Not a medicine, not a breathing treatment, just sit and watch him.
The doctor then stepped out and we were left to ourselves for another 2 hours to discuss things. The more Jonathin and I sat there the more we decided against their advice. Luke had calmed down and even the doctor said he looked fine when he was calm. I figured I could watch him as much as the nurses could. Let me explain....the nurses never checked on us once in the 5 hours we were in the ER. Also when we would push the nurse button it would alarm for 8-10 minutes before someone would remotely notice. Usually someone would come in and turn it off, then retreat for our nurse without even saying a word to us. Jonathin joked, how could this be an ER. At this point I was getting upset. Once we were able to find our nurse we told her we decided to take Luke home. I don't think she liked us taking a stand. So for the next hour or so we got the run around about the doctor wanting to talk to us again and how the peds department thought it would be best for us to go upstairs. No one would listen to us.
Finally the doctor came in and turned into a jerk. He pretty much told Jonathin and I we were idiots. His exact words were..."Are you prepared to go home and your son to stop breathing?" Okay, this really pushed me off the deep end. I then explained to him that for 5 months we were with Luke and know him front to back, and we have an apnea monitor at home also. He got snippy with us, because I did not share all of this knowledge in the first place. No offense, but he knew Luke was a micro preemie and that we spend over 3 months in the hospital with him. It was like he thought we were so naive, and didn't know anything. At this point I couldn't get out of there sooner. He said that he only let idiots sign an AMA (Against Medical Advise), however now we don't sound like idiots so he would discharge. I couldn't get Luke in his car seat quicker. I understand that they get parents that are so clueless sometimes, but is that how we really looked. I mean we came in there explaining the situation and speaking like we at least had some since. I was just really put off by the situation.
All I could say to Jonathin is next time we have an emergency, we will drive to Riley. How sad is that, we would drive over 3 hours away. I tried to explain to the doctor that I would rather be home watching Luke instead of sitting in the germ infested Disneyland called the Peds Floor. I'm going over the immune deficiency that Luke is fighting, and it is like talking to a wall.
So we were finally home around 3pm this afternoon and we all then took a nap. I think we all needed it after our day. Knock on wood, Luke hasn't coughed since we have been home and is looking comfortable in his Daddy's arms as they play the Xbox. Hopefully we can have a comfortable day tomorrow with no excitement. I mean nothing against Memorial Hospital, but I was not impressed today. Hope we can stay hospital free for awhile for now.
Jordan
Sunday, November 20, 2011
Sick Week 2011 Continues
Well this cold is still going strong at our house. It has slowly moved from Luke to Jonathin and I. However he has the worse of it. The sniffles turn into coughing throughout the night. I swear it sounds like he has been smoking a pack a day for 10 years when he really gets going. I learned a very valuable lesson last night. If you have been keeping up with Luke's sleeping habits you know that he "is one" with his swing. Luke refuses to sleep before Craig Ferguson comes on. I however, must sleep before 12:30am. So into his swing he goes around 11PM during the local news. He swings wide eyed till finally falling asleep. I however, am out as soon as my head hits the pillow. Well, the past few nights Luke has been sleeping without the swing on his Boppy pillow. Last night we returned to the swing for the evening. Luke was out like a light when I woke up at 2am and for some reason in my sleep deprived mind I thought it would be better to move him out of the swing. Here me now....NEVER MOVE A HAPPY BABY! For the next 3 hours we had crying, coughing, sniffling, and screaming. It turned into one long night. So as I type this now, Luke is asleep in his swing, hopefully for a good couple hours.
I'm waiting for the day I go to the swing and push the button and it doesn't move! It has been the best investment that we have made for Luke. Those NICU nurses and other moms in Module 1 at Riley weren't kidding. Sooner or later I know the swing will have swung it's last swing. However, Jonathin has already informed me that we will buy a new swing less than 2 hours after this one breaks...hahaha!
So being a nursing student and after being surrounded by all this medicine the past 5 months I can't get over that there is nothing for Luke's cold. I laid in bed last night during the coughing mentally going through my notes. The only things we can do for him is saline drops to help clear some stuffiness, the dreaded nose sucker, and his vaporizer. I have a feeling that his new friend is his Ellie the Elephant vaporizer. I'm happy if it is actually doing something for him, however I hate the mess that it makes. After just one night, the white dusting is already getting to me. It isn't like I can clean the bedroom all the time. Especially with Jonathin sleeping during the day, but watch me try.
I'm just throwing this out there to the other preemie mom's....did your child have problems with gas and ieregularity. I am so perturbed with this little man. I mean some days we are going all the time when he passes gas just a little at a time. Then other times we go a couple days and are in complete pain with constant gas. His developmentalist has him taking Miralax daily in a bottle, however he wasn't taking it while on his antibiotics. His body didn't play well with his medication. Originally, we thought it was the Similac Neosure that he is on. Especially since we add extra calories worth of formula, however now I just think it is him. I hear it can be that his prematurity is still the problem, but I'm praying for some regularity for his sake.
Tomorrow starts the return of studying for school. I will return to school in January. For 8 weeks I will be going to Gary twice a week for a little over 2 hours. However it will be a 2 hour drive there and another 2 hours home. I don't know what day, but there is definitely going to be some schedule juggling going on here. Then another 8 weeks after that, I will be keeping this same schedule, but adding 2 more days of leaving at 5am and getting home around 7pm. I worst part is the fact that I have no other option. I will lose my credits if I don't continue now. I also have been put off by the South Bend campus on trying to transfer. SOOO I'm left to finish out in Gary. The one good thing, I will done with school before Luke's first birthday. Then finally I can get into a clinic or hospital and work with the world that has surrounded my life over the past 5 months. When I started the nursing school process 2 years ago, I figured I would go into labor and delivery or pediatrics. Now there is no other place I will go. I feel like there is so much information and piece of mind I can share with others in the same place we have been. As much as those have helped the past few months, you really don't understand things till you yourself have lived it. I hope once everything has calmed down and school is finally over we can get move involved in the preemie community.
Jonathin and I treated ourselves to a new camera for our Christmas to help chronical Luke's growth. Don't get us wrong, the cell phones were great, but now the pictures might look a little better. So I added a few testers from this week as I "break" it in. The dogs thought they needed a little facetime also.
Jordan
I'm waiting for the day I go to the swing and push the button and it doesn't move! It has been the best investment that we have made for Luke. Those NICU nurses and other moms in Module 1 at Riley weren't kidding. Sooner or later I know the swing will have swung it's last swing. However, Jonathin has already informed me that we will buy a new swing less than 2 hours after this one breaks...hahaha!
So being a nursing student and after being surrounded by all this medicine the past 5 months I can't get over that there is nothing for Luke's cold. I laid in bed last night during the coughing mentally going through my notes. The only things we can do for him is saline drops to help clear some stuffiness, the dreaded nose sucker, and his vaporizer. I have a feeling that his new friend is his Ellie the Elephant vaporizer. I'm happy if it is actually doing something for him, however I hate the mess that it makes. After just one night, the white dusting is already getting to me. It isn't like I can clean the bedroom all the time. Especially with Jonathin sleeping during the day, but watch me try.
I'm just throwing this out there to the other preemie mom's....did your child have problems with gas and ieregularity. I am so perturbed with this little man. I mean some days we are going all the time when he passes gas just a little at a time. Then other times we go a couple days and are in complete pain with constant gas. His developmentalist has him taking Miralax daily in a bottle, however he wasn't taking it while on his antibiotics. His body didn't play well with his medication. Originally, we thought it was the Similac Neosure that he is on. Especially since we add extra calories worth of formula, however now I just think it is him. I hear it can be that his prematurity is still the problem, but I'm praying for some regularity for his sake.
Tomorrow starts the return of studying for school. I will return to school in January. For 8 weeks I will be going to Gary twice a week for a little over 2 hours. However it will be a 2 hour drive there and another 2 hours home. I don't know what day, but there is definitely going to be some schedule juggling going on here. Then another 8 weeks after that, I will be keeping this same schedule, but adding 2 more days of leaving at 5am and getting home around 7pm. I worst part is the fact that I have no other option. I will lose my credits if I don't continue now. I also have been put off by the South Bend campus on trying to transfer. SOOO I'm left to finish out in Gary. The one good thing, I will done with school before Luke's first birthday. Then finally I can get into a clinic or hospital and work with the world that has surrounded my life over the past 5 months. When I started the nursing school process 2 years ago, I figured I would go into labor and delivery or pediatrics. Now there is no other place I will go. I feel like there is so much information and piece of mind I can share with others in the same place we have been. As much as those have helped the past few months, you really don't understand things till you yourself have lived it. I hope once everything has calmed down and school is finally over we can get move involved in the preemie community.
Jonathin and I treated ourselves to a new camera for our Christmas to help chronical Luke's growth. Don't get us wrong, the cell phones were great, but now the pictures might look a little better. So I added a few testers from this week as I "break" it in. The dogs thought they needed a little facetime also.
Jordan
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| Nap time on the Boppy |
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| Snug as a Bug |
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| Luke and his sound machine giraffe |
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| A scheduled afternoon nap for Zbi |
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| Lola Bug |
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| Only a face a dad could love, and sometimes a mom |
Friday, November 18, 2011
Cold Onset
Cold season has set in here at the Molnar residence. Apparently Luke picked it up at the hospital and has taken the past few days to set in. Last night was a long one. Luke now sleeps in his Boppy pillow. I know, I know...shame on me. However, Luke needs to be propped up or he chokes and coughs most of the night. I am just happy it is just a cold and not RSV. This is already stressing me out, just imagine if it was worse. Sorry this is so short. Hopefully tomorrow I can give you more of a lowdown.
Jordan
Jordan
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