Lately We've been in a storm. Connors been sick, and I have been fighting for him and yet have felt unheard. I couldn't understand why it seemed no one would listen. Its been so so exhausting. I have felt so extremely helpless.
It all began a few weeks ago when Connor started coughing. It wasn't all day, or anything extreme just kind of randomly. I of course was on high alert due to the fact that we stopped his lung medication this summer. His pulmonologist and I had been discussing this for awhile and due to how well he was doing we decided to take him off the medication and see how things went. It was such a hard decision, but one of those things that we would never know until we tried. Connor was on daily preventative medication long before we brought him home. Taking him off a preventative was oh so scary, after all we'd had many hospital stays and health scares while on the preventative. We decided to proceed ahead with the plan and had a fabulous summer. Of course its summer, he wasn't exposed to tons of sickness like he is during the school year and harsh winter months. I knew Winter would likely be a battle and to say I was nervous was truly a understatement. So the random cough had me watching closer than ever. It soon turned to a cold. He was super congested and of course we took him to the doctor. Connor like most children was a happy dude at the doctors office despite the fact he had seemed so so sick in the day leading up to the appointment. The doctor listened to him, assured me his lungs sounded fine, and agreed that breathing treatments of his PRN medication and over the counter cold meds were a good plan. ( These were all things I had already started doing, but I always feel better when a doctor says I'm doing the right things.) He had been running a low grade fever, but the doctor assured me it was viral and no antibiotics were needed. ( Thank goodness, we are always so relieved to bypass antibiotics when we can due to them upsetting his tummy.) I was so relieved to have a doctor tell me his lungs sounded clear! Connor has scarring in his left lung and is extremely susceptible to Pneumonia. That alone keeps me on high alert, but put that with the fact this is his first cold while not on lung preventative medication Im not ashamed to admit I'm a little over the top.
The next day Connor went to school. His doctor had given the ok and a note that he could return. However he was clearly sick, but trudging through. I was keeping a close eye on him and continuing breathing treatments and tylenol to try to keep him comfortable. We came home and he immediately just wanted to lay on the couch, and then his breathing got labored. He seemed to really be having a hard time, his temp was 101, and he had just received tylenol about 45 minutes earlier so off to Childrens ER we went. On the way Connor fell asleep and his breathing became more normal. The ER doctor listened to him and said his lungs sounded ok, but after a look at his medical chart decided that she wanted a chest xray to be certain. I am so so grateful for her thoroughness. The xray looked fine, with no noteable changes. WHAT A RELIEF! She agreed that he likely had a mild asthma attack. Obviously not a good thing, but also nice to know I did see something and made me feel a little less crazy. The doctor gave him a heavy dose of steroids and said he should be much better within 3 days. She suggested a follow up with his doctor. The steroids had him feeling much better and he was literally jumping off stuff and wild as ever before we even left the hospital. We were suppose to now give his PRN breathing treatments every 4 hours for the next 24 hours. We did. Sunday was a GREAT day. I really felt he was getting better, and was happy to see him more himself only much wilder due to the steroids. Monday came and I got him up and ready for school, he coughed and coughed and coughed. I thought maybe he was just getting it all out. The bus came and when I went to put him on the bus, he broke down. I knew then something wasnt right and their was no way he could go to school. So we stayed home. Connor laid on the couch all day. ( I should note that all this time hes has been eating and drinking good. Which is basically all that was keeping me sane.) He fell asleep and took a 4 HOUR nap, very very unlike him. He rarely naps anymore, but I attributed it to him being sick and reassured myself that rest is a good thing.
This is where things got scary. He woke up and seemed off. I picked him up and held him ( like a baby) he was just kind of staring off into space and then his eyes began jerking back and forth. They then fixated on my shirt, and I called his name to no avail. Seconds seemed like hours!!! "Connor! Connor! Connor look at me!" Finally ( and again this was probably 30/45 seconds) he looked at me and pointed back to his spot on the couch. My mind was racing and I was unsure of what had just happen. I put him back on his spot on the couch and got out my phone. I began videoing and I'm forever grateful that I did. More of the same happened. My video is over 2 minutes long. However he seemed to come to better when I called his name this time. I text Jeremy in a panic and he said hed be right home. Of course when he got home, Connor seemed fine and Jeremy assured me we were both tired. So thankful he has a calm level head. The night went on as normal. I made his follow up doctor appointment and mentioned I had a video of a "odd episode" I also wanted to show them and discuss. Before the appointment I called his opthalmologist, I did this because Connor does have nystagmus ( his eyes jerk from side to side) to ask if that could have been what happen, although id never seen his eyes do anything this extreme and I didnt believe for one second it was his nystagmus. After explaining what happened, they said it was not nystagmus or anything eye related and I needed to get to his doctor because it sounded much like seizure activity. I already knew this, but my heart sank. I could feel myself beginning to panic, and I had to keep looking at him and reminding myself hes right here and hes fine. We went to his doctor appointment.
If you know me you know I do not do drama. I do not talk about or "dog out" people on social media, my blogs no different. I'll just say I felt unheard, and brushed off.
I will say after Connor being listened to I was told his left lung sounded " wheezy" "Your not out of the woods yet." and to start back on breathing treatments every 4 hours for 2/3 days then to back off to 6/8 hours.
The next day I called his pulmonologist. I talked to a wonderful nurse in their office for close to a hour. FINALLY someone heard me! I poured it all out, while she took notes of every single symptom, behavior, and concern. It was friday, and their office closes early ( they were closing in like an hour from when I called.) But she gave me a appointment for monday. She let me vent, and she did something I needed more than anything, She listened! The relief I felt was unexplainable. The nurse assured me that what happened would not have anything to do with the breathing treatments being given so often ( a concern I had.) She did tell me that as far as the cold, there is a viral cold going around that the cough lingers for weeks afterwards. This cold very well could be just a viral cold that hes having a hard time kicking, but the other, even if its a one time event if I want to be seen by a neurologist thats perfectly acceptable. If I want a EEG thats understandable. I am his voice and I should fight even if its a one time event. One times enough!
I am exhausted. I am panicked. I am confused. I am so so many things, but I am a mother on a mission. I cannot stop. I will not stop.
Tonight Connor cried. Several times he cried. I dont know why, and its super unlike him. I have so many concerns. So many questions. My heart breaks. I am scattered, my thoughts are jumbled. I am a mess. I wonder what could be going on. Is it really just a viral cold. What is happening in my tiny 30 pound boys little body. We got home and he danced and laughed. And I wondered how he can be fine one minute and sobbing the next. What am I missing? What is happening to my little boy??
Its then I felt God speak to me. Stand still in the storm. Trust Me. Don't miss out on his happiness and laughter because your so consumed with why he cried earlier. Stand still in the storm. Enjoy the happy moments, and hold him close in the bad. So tonight I got up off the couch, and I danced and laughed with my happy boy. We played and sang, and we were happy while the storm still raged around us. Although we have no answers, although we are filled with worry and anxiousness we will stand still in the storm.
And with the help of a excellent medical team, WE WILL FIGURE THIS OUT.
It all began a few weeks ago when Connor started coughing. It wasn't all day, or anything extreme just kind of randomly. I of course was on high alert due to the fact that we stopped his lung medication this summer. His pulmonologist and I had been discussing this for awhile and due to how well he was doing we decided to take him off the medication and see how things went. It was such a hard decision, but one of those things that we would never know until we tried. Connor was on daily preventative medication long before we brought him home. Taking him off a preventative was oh so scary, after all we'd had many hospital stays and health scares while on the preventative. We decided to proceed ahead with the plan and had a fabulous summer. Of course its summer, he wasn't exposed to tons of sickness like he is during the school year and harsh winter months. I knew Winter would likely be a battle and to say I was nervous was truly a understatement. So the random cough had me watching closer than ever. It soon turned to a cold. He was super congested and of course we took him to the doctor. Connor like most children was a happy dude at the doctors office despite the fact he had seemed so so sick in the day leading up to the appointment. The doctor listened to him, assured me his lungs sounded fine, and agreed that breathing treatments of his PRN medication and over the counter cold meds were a good plan. ( These were all things I had already started doing, but I always feel better when a doctor says I'm doing the right things.) He had been running a low grade fever, but the doctor assured me it was viral and no antibiotics were needed. ( Thank goodness, we are always so relieved to bypass antibiotics when we can due to them upsetting his tummy.) I was so relieved to have a doctor tell me his lungs sounded clear! Connor has scarring in his left lung and is extremely susceptible to Pneumonia. That alone keeps me on high alert, but put that with the fact this is his first cold while not on lung preventative medication Im not ashamed to admit I'm a little over the top.
The next day Connor went to school. His doctor had given the ok and a note that he could return. However he was clearly sick, but trudging through. I was keeping a close eye on him and continuing breathing treatments and tylenol to try to keep him comfortable. We came home and he immediately just wanted to lay on the couch, and then his breathing got labored. He seemed to really be having a hard time, his temp was 101, and he had just received tylenol about 45 minutes earlier so off to Childrens ER we went. On the way Connor fell asleep and his breathing became more normal. The ER doctor listened to him and said his lungs sounded ok, but after a look at his medical chart decided that she wanted a chest xray to be certain. I am so so grateful for her thoroughness. The xray looked fine, with no noteable changes. WHAT A RELIEF! She agreed that he likely had a mild asthma attack. Obviously not a good thing, but also nice to know I did see something and made me feel a little less crazy. The doctor gave him a heavy dose of steroids and said he should be much better within 3 days. She suggested a follow up with his doctor. The steroids had him feeling much better and he was literally jumping off stuff and wild as ever before we even left the hospital. We were suppose to now give his PRN breathing treatments every 4 hours for the next 24 hours. We did. Sunday was a GREAT day. I really felt he was getting better, and was happy to see him more himself only much wilder due to the steroids. Monday came and I got him up and ready for school, he coughed and coughed and coughed. I thought maybe he was just getting it all out. The bus came and when I went to put him on the bus, he broke down. I knew then something wasnt right and their was no way he could go to school. So we stayed home. Connor laid on the couch all day. ( I should note that all this time hes has been eating and drinking good. Which is basically all that was keeping me sane.) He fell asleep and took a 4 HOUR nap, very very unlike him. He rarely naps anymore, but I attributed it to him being sick and reassured myself that rest is a good thing.
This is where things got scary. He woke up and seemed off. I picked him up and held him ( like a baby) he was just kind of staring off into space and then his eyes began jerking back and forth. They then fixated on my shirt, and I called his name to no avail. Seconds seemed like hours!!! "Connor! Connor! Connor look at me!" Finally ( and again this was probably 30/45 seconds) he looked at me and pointed back to his spot on the couch. My mind was racing and I was unsure of what had just happen. I put him back on his spot on the couch and got out my phone. I began videoing and I'm forever grateful that I did. More of the same happened. My video is over 2 minutes long. However he seemed to come to better when I called his name this time. I text Jeremy in a panic and he said hed be right home. Of course when he got home, Connor seemed fine and Jeremy assured me we were both tired. So thankful he has a calm level head. The night went on as normal. I made his follow up doctor appointment and mentioned I had a video of a "odd episode" I also wanted to show them and discuss. Before the appointment I called his opthalmologist, I did this because Connor does have nystagmus ( his eyes jerk from side to side) to ask if that could have been what happen, although id never seen his eyes do anything this extreme and I didnt believe for one second it was his nystagmus. After explaining what happened, they said it was not nystagmus or anything eye related and I needed to get to his doctor because it sounded much like seizure activity. I already knew this, but my heart sank. I could feel myself beginning to panic, and I had to keep looking at him and reminding myself hes right here and hes fine. We went to his doctor appointment.
If you know me you know I do not do drama. I do not talk about or "dog out" people on social media, my blogs no different. I'll just say I felt unheard, and brushed off.
I will say after Connor being listened to I was told his left lung sounded " wheezy" "Your not out of the woods yet." and to start back on breathing treatments every 4 hours for 2/3 days then to back off to 6/8 hours.
The next day I called his pulmonologist. I talked to a wonderful nurse in their office for close to a hour. FINALLY someone heard me! I poured it all out, while she took notes of every single symptom, behavior, and concern. It was friday, and their office closes early ( they were closing in like an hour from when I called.) But she gave me a appointment for monday. She let me vent, and she did something I needed more than anything, She listened! The relief I felt was unexplainable. The nurse assured me that what happened would not have anything to do with the breathing treatments being given so often ( a concern I had.) She did tell me that as far as the cold, there is a viral cold going around that the cough lingers for weeks afterwards. This cold very well could be just a viral cold that hes having a hard time kicking, but the other, even if its a one time event if I want to be seen by a neurologist thats perfectly acceptable. If I want a EEG thats understandable. I am his voice and I should fight even if its a one time event. One times enough!
I am exhausted. I am panicked. I am confused. I am so so many things, but I am a mother on a mission. I cannot stop. I will not stop.
Tonight Connor cried. Several times he cried. I dont know why, and its super unlike him. I have so many concerns. So many questions. My heart breaks. I am scattered, my thoughts are jumbled. I am a mess. I wonder what could be going on. Is it really just a viral cold. What is happening in my tiny 30 pound boys little body. We got home and he danced and laughed. And I wondered how he can be fine one minute and sobbing the next. What am I missing? What is happening to my little boy??
Its then I felt God speak to me. Stand still in the storm. Trust Me. Don't miss out on his happiness and laughter because your so consumed with why he cried earlier. Stand still in the storm. Enjoy the happy moments, and hold him close in the bad. So tonight I got up off the couch, and I danced and laughed with my happy boy. We played and sang, and we were happy while the storm still raged around us. Although we have no answers, although we are filled with worry and anxiousness we will stand still in the storm.
And with the help of a excellent medical team, WE WILL FIGURE THIS OUT.
