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Prayers for caden


MedicMom
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We had a miserable night. I think I got twenty minutes of sleep. He coughed and choked and gagged and vomited all night. We struggled to keep his oxygen saturation above 80.

 

They started antibiotics for a double ear infection that popped up this morning, and my three year old at home spiked a fever and had a febrile seizure. Right now I am home with her while DH is at the hospital.

 

We are exhausted. They said we will likely be at the hospital at least through the weekend.

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I'm so sorry Caden is going through this!  We will definitely keep him in our prayers.

 

We had a miserable night. I think I got twenty minutes of sleep. He coughed and choked and gagged and vomited all night. We struggled to keep his oxygen saturation above 80.

They started antibiotics for a double ear infection that popped up this morning, and my three year old at home spiked a fever and had a febrile seizure. Right now I am home with her while DH is at the hospital.

We are exhausted. They said we will likely be at the hospital at least through the weekend.

 

I am a little confused by this though. I presume this means he is already at least intubated on conventional ventilator (although reading your posts it sounds like this might not be the case).  [if not, why not, that would be the question I would be asking the physicians if he was my child. Persistent saturations in the 80s can cause damage to the brain and other organs. There would need to be some good explanation for why I should be willing to take this risk with my child.] Does the PICU he is currently in have HFOV and ECMO capabilities? What is the timeframe and criteria for considering these interventions? If his current PICU doesn't have these options what facility is their transfer facility and has his case been discussed with the PICU attending or Ped's Pulmonologist/Cardiologists at that facility?

I wish you and Caden all of the best.  I pray he is in good hands. 

 

Edited by LMV
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I'm so sorry Caden is going through this! We will definitely keep him in our prayers.

 

 

I am a little confused by this though. I presume this means he is already at least intubated on conventional ventilator (although reading your posts it sounds like this might not be the case). [if not, why not, that would be the question I would be asking the physicians if he was my child. Persistent saturations in the 80s can cause damage to the brain and other organs. There would need to be some good explanation for why I should be willing to take this risk with my child.] Does the PICU he is currently in have HFOV and ECMO capabilities? What is the timeframe and criteria for considering these interventions? If his current PICU doesn't have these options what facility is their transfer facility and has his case been discussed with the PICU attending or Ped's Pulmonologist/Cardiologists at that facility?

 

I wish you and Caden all of the best. I pray he is in good hands.

 

 

They are not being aggressive enough. It's on my list of things to discuss today. He is on high flow but not intubated. He is maintaining 89-92% today on 6 lpm but that still seems low to me for a ten month old. Overnight was really rough and he was consistently between 76-85% on the nasal cannula. I do think a lot of that was their inability to determine when he needed to be suctioned.

 

The transfer facility(where he would go if they determine they can't manage him here) is Strong Memorial Hospital in Rochester. They have full capabilities for anything we need but I am still hoping we don't get to that point. They did tell me this is likely to get worse before it gets better.

 

Caden was a little less wheezy this morning. I am taking care of my daughter right now and then DH and I are going to switch.

Edited by MedicMom
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They are not being aggressive enough. It's on my list of things to discuss today. He is on high flow but not intubated. He is maintaining 89-92% today on 6 lpm but that still seems low to me for a ten month old. Overnight was really rough and he was consistently between 76-85% on the nasal cannula. I do think a lot of that was their inability to determine when he needed to be suctioned.

 

The transfer facility(where he would go if they determine they can't manage him here) is Strong Memorial Hospital in Rochester. They have full capabilities for anything we need but I am still hoping we don't get to that point. They did tell me this is likely to get worse before it gets better.

 

Caden was a little less wheezy this morning. I am taking care of my daughter right now and then DH and I are going to switch.

 

Do they have him on continuous albuterol?  When my dd got pneumonia and they couldn't get her sats up, they transferred her to Children's in less than 24 hours so she could be on continuous albuterol and I think maybe also a higher concentration of oxygen?  She was 8 years old, so not even as young.  And she still was in the PICU for a few days (and in the hospital for 8 altogether), and wasn't really properly conscious for those days - and that was with the more aggressive treatment.

 

I'd insist on the transfer.

 

:grouphug: :grouphug: :grouphug: :grouphug:

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So.

I came back today(my husband was here all day) to find a flurry of activity in his room. Respiratory therapy had come in to do a breathing treatment and never turned his oxygen back on, leading to an Spo2 of 70.

I'm not even sure why they turned it off.

I was, um, not happy or political.

 

He just spiked a fever for the first time since yesterday morning. In good news, he is satting ok right now on the nasal cannula and the nurse just said his lungs are sounding better.

My husband is taking the night shift so I can sleep tonight.

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They are not being aggressive enough. It's on my list of things to discuss today. He is on high flow but not intubated. He is maintaining 89-92% today on 6 lpm but that still seems low to me for a ten month old. Overnight was really rough and he was consistently between 76-85% on the nasal cannula. I do think a lot of that was their inability to determine when he needed to be suctioned.

 

The transfer facility(where he would go if they determine they can't manage him here) is Strong Memorial Hospital in Rochester. They have full capabilities for anything we need but I am still hoping we don't get to that point. They did tell me this is likely to get worse before it gets better.

 

Caden was a little less wheezy this morning. I am taking care of my daughter right now and then DH and I are going to switch.

 

I would agree, they aren't being aggressive enough.  I hope he has a better night tonight, and am keeping you all in my thoughts.

 

My DD has CP from low oxygen levels (not at delivery).  

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Caden was up and playing in the crib for a while this morning which is a HUGE improvement. He tired quickly and desatted, so now he is sleeping on Mommy. He continues to drink clear liquids well. The doctors have not been in today yet, so I don't really know anything more.

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Caden was up and playing in the crib for a while this morning which is a HUGE improvement. He tired quickly and desatted, so now he is sleeping on Mommy. He continues to drink clear liquids well. The doctors have not been in today yet, so I don't really know anything more.

Sounds like good news!

 

You must be so terribly exhausted. How's your other little patient?

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Still praying for you. And taking this as a reminder for the rest of us to keep our sick kids HOME! You never know who you are exposing, and I'm sure this was passed on by a kid who had RSV but wasn't a preemie, and thought it was "just a cold" or "just a snotty nose". 

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Caden will not be discharged today. they tried him without oxygen last night and it didn't work, so he is back on oxygen and we will be at the hospital at least another day.

 

My daughter seems to be doing better. I am sure she had RSV too, but she is older and was not a preemie. She's rebounding pretty well.

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