Hi! Thank you for checking in on Harlie. Here’s a run down on what’s been up with her:
November 13, Wednesday
Her temp went up to 104.5 on this day. We took her to her pediatrician that afternoon. She told me to minimize the strain on her heart, we should alternate between Tylenol and Motrin pretty regularly. She tested negative for the flu and strep. So, we kind of figured it was probably just a virus, but to be on the safer side, she put her on Amoxicillin, just in case.
Despite the meds, she continued to get fevers. The highest came on Thursday, I think, at 5am at 105.5. Clue #1.
November 13, Wednesday
Her temp went up to 104.5 on this day. We took her to her pediatrician that afternoon. She told me to minimize the strain on her heart, we should alternate between Tylenol and Motrin pretty regularly. She tested negative for the flu and strep. So, we kind of figured it was probably just a virus, but to be on the safer side, she put her on Amoxicillin, just in case.
Despite the meds, she continued to get fevers. The highest came on Thursday, I think, at 5am at 105.5. Clue #1.
The dogs knew she didn't feel good, so they tried to do their part to make her feel better.
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| Morty (front) Mabel (these two are brother and sister) and Harlie |
By Friday, I think she was staying in her bed all the time. And she was on oxygen 24/7. Normally, she’s on room air during the day, and oxygen only at night. And at night, it is normally just a little bit. But, now we were using her oxygen concentrator AND we had to bring up an actual oxygen tank and ADD it to her system to give her more oxygen. Clue #2.
Honestly, looking back, this might have been enough to tell me to take her to the hospital. But, us special needs moms have a lot of equipment and know how to use it. And at the end of the day - no one wants to go to the hospital.
Saturday night was terrible. She coughed all night long. Every time she would cough, she would take off her trach collar and she would start breathing room air. This would lower her oxygen saturations (sats) and her pulse ox would alarm (less than 80 causes the alarm). Normal people are very close to 100% sats. She is mid-80s on room air, when healthy.
Sometime during the night, she started coughing up blood. This isn’t THAT alarming with a trach, as her trachea is friable and could’ve easily been really irritated by all the coughing. Clue #3. So, about every 20 minutes or so, she would start coughing, remove her trach collar and then desat into the 70s and one of us would have to get up and go put her trach collar back on. This made for a very long and restless night.
Sunday was fairly uneventful. Other than her waking up a complete mess due to the bloody coughing. We had to put her in the bath first thing and while I was bathing her, Tom had to complete strip her bed and remake it with fresh linens.
Caylee worked that day and at one point she said to me, “So, at what point do you get nervous?” Well, to be totally honest, I was really worried about her. But, I was trying to ignore it. Unfortunately, due to so many traumatic experiences, I have to ignore a lot of my daily worries and fears. So, that’s my go-to coping technique. I was thinking she was sick, yes. And she was on a lot of oxygen, yes. But, we have oxygen and she is happier at home.
At some point during that day, I think, I noticed that when she talked, she had to say one or two words at a time and take a breath in between each word(s). Yeah, that’s not normal and definitely not a good sign, either. Clue #4.
By bedtime, Harlie said, “I think you need to take me to the hospital.” Clue #5. So, Tom and I talked and decided that I would take her to the emergency room in the morning. Not only was she not improving, she was getting worse. She got up out of bed to go to the bathroom and brush her teeth. As I was standing next to her I saw her turn blue. She went on about her business as if everything was fine. I quickly grabbed the oxygen tank and hooked her up and then checked her sats - 57!!! That is SOOOO low!
Anyway, they did a respiratory panel and it came back positive for Parainfluenza (the virus that causes croup). But, since she was on Amoxicillan for a few days, that could’ve messed up the cultures. So, they are treating her for a few common things associated with her trach (pseudomonas, staff, etc.) just to be on the safe side and put her on Clindamycin and Levofloxacin.
Tuesday was a rough day. She was on 10 liters of oxygen at 95%, just to maintain mid-80s sats. There’s really not much more they can give her, except to put her on a ventilator. She had several really bad coughing fits where she would cough and not be able to breathe and she would panic. It was horrible. No one has really said much about her lungs… they don’t sound terrible. So, I don’t really understand why she has such low sats. Every other time she’s ever need oxygen support, it has been because of her lungs. Even with horrible pneumonia or atelectasis (collapsed lung), we’ve never had to work this hard to maintain mid-80s or seen her sats drop so fast. Regardless, I suggested they start using the vest machine for chest PT. They agreed and are doing them several times a day. Hopefully that helps.
She’s definitely working harder to breathe, even this morning. They haven’t rounded yet, so we’ll see what they say then. The bottom line is that as of this morning, there has been no improvement, if anything, she’s worse.
As far as the rest of my family goes, I am now sick, too. I’m guessing I have the same thing Harlie has, but it is just a cold to me. And Tom has a heart cath on Friday. He can’t reschedule because we really need to do it on this year’s insurance. So, the rest of this week should be fun.
It is now Wednesday night. Today was a little rough. During rounds I asked them if they wanted to do another chest x-ray. The doc said it lags behind, so he didn't see a reason to since the last one was on Monday. But, in my opinion, she was getting worse and everything I was hearing about her lungs (more upper airway vs. lungs, not that bad, moving air well, only a little bit coarse/junky) just didn't jive with what I was seeing about Harlie. She looks like she's got a lot going on with her lungs. So, the doc says let me pull up Monday's x-ray. He then points out all the areas in her lungs that show pneumonia. Pneumonia? That's the first I've heard that this stay.
Apparently testing positive for parainfluenza implies that there is a viral respiratory infection aka pneumonia. I did not realize that. Now I'm really glad I suggested they start using the vest PT machine. Had I realized it was pneumonia on Monday, I would've had them start it on Monday. What really threw me is that every time she's had pneumonia, the descriptions of her lungs were not what I've been hearing this stay.
Regardless, this new information now makes sense. And I suggested that they put her on CPAP (ventilator) as her continuous work of breathing was starting to make me nervous. They agreed.
So, in summary, they are giving her lots of support. Overall, I feel like today was a bit of a rough day. Every time she has a coughing fit and turns blue it reminds me of all the other times I've seen her in respiratory distress and it is like they are all happening at the same time. It is hard to put into words. It just scares me and I don't like it. She is definitely not any better. Hopefully, with the help of the CPAP, her lungs will open up and start healing.
Someone from wound care came by and she was great and helpful and she cleaned her wound under her trach and changed the dressing I'm to put over it. Her wound actually looks better than it has in very long time.
I will update again when I can. Thank you so much for all the love and support!
Much love,
Christy xo
Saturday night was terrible. She coughed all night long. Every time she would cough, she would take off her trach collar and she would start breathing room air. This would lower her oxygen saturations (sats) and her pulse ox would alarm (less than 80 causes the alarm). Normal people are very close to 100% sats. She is mid-80s on room air, when healthy.
Sometime during the night, she started coughing up blood. This isn’t THAT alarming with a trach, as her trachea is friable and could’ve easily been really irritated by all the coughing. Clue #3. So, about every 20 minutes or so, she would start coughing, remove her trach collar and then desat into the 70s and one of us would have to get up and go put her trach collar back on. This made for a very long and restless night.
Sunday was fairly uneventful. Other than her waking up a complete mess due to the bloody coughing. We had to put her in the bath first thing and while I was bathing her, Tom had to complete strip her bed and remake it with fresh linens.
Caylee worked that day and at one point she said to me, “So, at what point do you get nervous?” Well, to be totally honest, I was really worried about her. But, I was trying to ignore it. Unfortunately, due to so many traumatic experiences, I have to ignore a lot of my daily worries and fears. So, that’s my go-to coping technique. I was thinking she was sick, yes. And she was on a lot of oxygen, yes. But, we have oxygen and she is happier at home.
At some point during that day, I think, I noticed that when she talked, she had to say one or two words at a time and take a breath in between each word(s). Yeah, that’s not normal and definitely not a good sign, either. Clue #4.
By bedtime, Harlie said, “I think you need to take me to the hospital.” Clue #5. So, Tom and I talked and decided that I would take her to the emergency room in the morning. Not only was she not improving, she was getting worse. She got up out of bed to go to the bathroom and brush her teeth. As I was standing next to her I saw her turn blue. She went on about her business as if everything was fine. I quickly grabbed the oxygen tank and hooked her up and then checked her sats - 57!!! That is SOOOO low!
She recovered quickly on several liters of oxygen. We got her back to bed and settled for the night. At 1am, I went in to tend to her and I noticed that she was working really hard to breathe. Clue #6. I went in and woke Tom and asked him to take a look. We decided I would take her in then. So, we got dressed and Tom went in to get her up. Then he asked me to go look at her. She was a lot more calm and wasn’t working as hard to breathe. So, we were thinking, it isn’t as urgent as we thought. We really didn’t want to wake her up in the middle of the night and take her. So, we decided we would let her - and us - sleep a little longer.
I feel like I need to explain that after all I’ve seen, all we’ve seen - what we call an “emergency” might look a bit different than what someone else thinks is an emergency. And to go to the emergency room means you have an emergency. And, to circle back, I didn’t think we had an emergency on our hands.
I woke up at 5am and got a quick shower, packed a bag and Tom got Harlie up and dressed. He hooked her up to an oxygen tank and carried her downstairs and into the car. Then I drove her to VCU’s Pediatric Emergency Department.
They took her back within like two minutes and got her into a room and started working on her. I immediately felt relieved. I just didn’t realize how worried I was - and in a second, I wasn’t in charge, and they were taking over. Ahhhh….
As they asked me all the questions, I heard out loud Clues # 1, 2, 3, 4, 5 and 6 come out of my mouth. Wow. Why did I wait so long to bring her?!
It is amazing what 13 years of trauma, fear, worry and survival can do to the way your brain functions. Thank goodness the docs in the ED get that! After I answered one of the many questions (the answer was one of the clues) he chuckled and said, “I love your threshold.”
They had her in a PICU room within two hours - pretty fast!
In my defense, it is now Wednesday and she is on 10 liters, 95% oxygen and two antibiotics through her g-tube (in other words, not IV meds). Soooo, technically, they aren’t doing much that I couldn’t do at home. I just don’t have a code button handy or a ventilator only a few minutes away.
I feel like I need to explain that after all I’ve seen, all we’ve seen - what we call an “emergency” might look a bit different than what someone else thinks is an emergency. And to go to the emergency room means you have an emergency. And, to circle back, I didn’t think we had an emergency on our hands.
I woke up at 5am and got a quick shower, packed a bag and Tom got Harlie up and dressed. He hooked her up to an oxygen tank and carried her downstairs and into the car. Then I drove her to VCU’s Pediatric Emergency Department.
They took her back within like two minutes and got her into a room and started working on her. I immediately felt relieved. I just didn’t realize how worried I was - and in a second, I wasn’t in charge, and they were taking over. Ahhhh….
As they asked me all the questions, I heard out loud Clues # 1, 2, 3, 4, 5 and 6 come out of my mouth. Wow. Why did I wait so long to bring her?!
It is amazing what 13 years of trauma, fear, worry and survival can do to the way your brain functions. Thank goodness the docs in the ED get that! After I answered one of the many questions (the answer was one of the clues) he chuckled and said, “I love your threshold.”
They had her in a PICU room within two hours - pretty fast!
In my defense, it is now Wednesday and she is on 10 liters, 95% oxygen and two antibiotics through her g-tube (in other words, not IV meds). Soooo, technically, they aren’t doing much that I couldn’t do at home. I just don’t have a code button handy or a ventilator only a few minutes away.
Tuesday was a rough day. She was on 10 liters of oxygen at 95%, just to maintain mid-80s sats. There’s really not much more they can give her, except to put her on a ventilator. She had several really bad coughing fits where she would cough and not be able to breathe and she would panic. It was horrible. No one has really said much about her lungs… they don’t sound terrible. So, I don’t really understand why she has such low sats. Every other time she’s ever need oxygen support, it has been because of her lungs. Even with horrible pneumonia or atelectasis (collapsed lung), we’ve never had to work this hard to maintain mid-80s or seen her sats drop so fast. Regardless, I suggested they start using the vest machine for chest PT. They agreed and are doing them several times a day. Hopefully that helps.
She’s definitely working harder to breathe, even this morning. They haven’t rounded yet, so we’ll see what they say then. The bottom line is that as of this morning, there has been no improvement, if anything, she’s worse.
As far as the rest of my family goes, I am now sick, too. I’m guessing I have the same thing Harlie has, but it is just a cold to me. And Tom has a heart cath on Friday. He can’t reschedule because we really need to do it on this year’s insurance. So, the rest of this week should be fun.
It is now Wednesday night. Today was a little rough. During rounds I asked them if they wanted to do another chest x-ray. The doc said it lags behind, so he didn't see a reason to since the last one was on Monday. But, in my opinion, she was getting worse and everything I was hearing about her lungs (more upper airway vs. lungs, not that bad, moving air well, only a little bit coarse/junky) just didn't jive with what I was seeing about Harlie. She looks like she's got a lot going on with her lungs. So, the doc says let me pull up Monday's x-ray. He then points out all the areas in her lungs that show pneumonia. Pneumonia? That's the first I've heard that this stay.
Apparently testing positive for parainfluenza implies that there is a viral respiratory infection aka pneumonia. I did not realize that. Now I'm really glad I suggested they start using the vest PT machine. Had I realized it was pneumonia on Monday, I would've had them start it on Monday. What really threw me is that every time she's had pneumonia, the descriptions of her lungs were not what I've been hearing this stay.
Regardless, this new information now makes sense. And I suggested that they put her on CPAP (ventilator) as her continuous work of breathing was starting to make me nervous. They agreed.
So, in summary, they are giving her lots of support. Overall, I feel like today was a bit of a rough day. Every time she has a coughing fit and turns blue it reminds me of all the other times I've seen her in respiratory distress and it is like they are all happening at the same time. It is hard to put into words. It just scares me and I don't like it. She is definitely not any better. Hopefully, with the help of the CPAP, her lungs will open up and start healing.
Someone from wound care came by and she was great and helpful and she cleaned her wound under her trach and changed the dressing I'm to put over it. Her wound actually looks better than it has in very long time.
I will update again when I can. Thank you so much for all the love and support!
Much love,
Christy xo
1 comment:
Sorry harlie got sick I hope she gets better
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