co2 level too high, any suggestion

hello, everyone my son Chris was born at 25 weeks 6 months ago. he have been in the oscillator since birth, the doctors have him on hydrocortisone it's not working , last week they gave him his 6 month vaccines ,now he has taken a toll for the worst his co2 level is dagererously elavated please help if any of have had to face this before because doctors are saying there is nothing else they can do for him

Edited May 31, 2012 at 11:22 am

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Hi Shelcy,

My daughter's situation was a bit similar, she was born at 25 weeks, was in the NICU for 4 months, and came home with oxygen. Her high CO2 levels were what prevented her from coming home from the hospital for weeks. They really fluctuated, one day they would be too high, and the next day they would be better. It probably has anything to do with his vaccinations; high and fluctuating CO2 levels are one of the side effects of severe BPD. The doctors told us it really depends on the child, some kids need lots of oxygen but their CO2 is fine, other kids don't need much oxygen but their CO2 is high etc. They told us there was nothing to do but wait until her lungs got a bit stronger and were better able to get rid of the CO2. Has Chris' CO2 been high before? Does it go up and down? Did the doctors say they expect it to come down eventually? Hopefully this is just part of the progression of his BPD, but it's frustrating and terrifying. We're thinking of you!

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I am so sorry. Six months is a terribly long time to be on an oscillator. I have a few questions:

1. Have the doctors tried dexamethasone? It is a stronger steroid and has been shown to work better than hydrocortisone.

2. Has your son been evaluated for pulmonary hypertension? I am guessing that his heart is under tremendous stress and he very likely has PH. PH can be detected through an echo, taking a blood lab called a BNP and/or a CT angiogram. It is worth it to try giving him nitric oxide or, at a minimum, Viagra/sildenifil to dilate his blood vessels.

3. Is he being heavily sedated? Older babies find the oscillator to be very upsetting. Heavy sedation (and, if desperate, using a paralytic like Pavulon) can take the edge off and make him less likely to fight to vent.

4. How is he being fed? He should be fed continuously through a j tube. Bolus feeds through a g tube can cause aspirations, which further damage the lungs.

Again, I am so sorry that you find yourself at this place. My son had some horrific blood gasses (>100) at times caused by pulmonary hypertension crises. We were so lucky that he was able to recover from these episodes. I hope that your son is able to fight through this unbelievably difficult period.

If you have any other questions, feel free to PM me.

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I had twins at 29weeks my small one was the size of a 24week baby. She was intubated till she had her PDA closed at 5 months and then when she had her VSD prepared she was able to breath on her own for a short amount of time. Then she crashed and constantly had high co2s. She would be on bipap one week and then have to be re-intubated the next. After that went on for a little while we decided to give her a tracheotomy. However she is 13months and still in hospital.
Does your little one have any heart troubles? my experience was they work together.

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I am so sorry this is happening. Is the medical staff giving you ANY options? If you are talking to the floor neonatologist I would ask for a meeting with the Medical Director of the NICU. You deserve that at the very least.

I also agree on the comment on here regarding heart issues. It is definitely something to explore.

And did the "turn for the worse" occur with the vaccinations? Could this be a reaction to them? I would ask the doctors about that as well.

If you do not have a Patient Advocacy person involved in the NICU (social worker might help, but the hospital should have a Patient Advocacy team that you could go to should you feel things are not being done properly)? I would contact them as well.

Beyond this, the cortisone - is there any other type of treatment out there beyond this, even new ones not yet tested, that could be considered?

I am throwing out as many questions as I can come up with based on the information your provided.

Sending thoughts your way . . . if you do have time to update, please do. I really want to know more and hear if the staff is able to re-address this for you.

Deb

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I can totally relate. My son was notorious for the dangerously high co2 even after he was trached. He would have these episodes where he started retracting, sats would go down and co2 would shoot up. I've seen his as high as 131 before. During those times we would have to give him the paralytiv vecnuronium and morphine to keep him still and calm so the vent could do its job. Sometimes we had to bag him to "blow off" the co2, but even that stopped working for a while. He had PH that resolved after a couple of months of viagra. He had every test and every thing x-rayed, echoed, mri-ed and ultrasounded and we could not find a reason for the episodes. We just had to chop itt up to bad lungs (he has CLD as well) and play the sedation game until he grew out of it. While he was having these episodes we all (docs and nurses included) went for as little stimulation as possible and enough sedation so that he didn't fight the vent. We kept is as dark and as quiet as we could in his area of the NICU. I went months without holding him. The nurses and RT coordinated their cares and treatments at the same time so that we would have to disturb him as little as possible and we just waited. We did steroids (dex and prednisolone). It was a long waiting game. If the NICU docs can't figure it out, push for a PICU consuly. It wasn't until my son got to the PICU that they figured out that the only thing we could do was sedate him and wait. My son is 14 months now and still in the hospital. He is as of Wednesday off of oxygen and now doing sprints on the vent. They wean his vent settings almost every week because now his co2 get too low! He is getting stronger every month. Don't let these docs make u loose hope. Pray for him, sing to him, put one of your shirts in his crib so he can smell you and keep fighting!

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no heart problem thus far but his co2 is still a big problem and now doctors are putting us under a lot of pressure telling us that he might not recover but still has no ideas what the causes of his high co2.
sorry to hear about your son may the Lord give you strength and thank you for your post.

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he is sedated every 2 to 3 hour at the time with morphines , doctors have him on a contineous flow of nitric oxide and Viagra/sildenifil to dilate his blood vessels.
the doctors tried dexamethasone when he was 2 months old and they were trying to extubate him at the time , now they have him back on the hydrocortisone, all feeding have been stop because of his condition and before that he used to be fed trough his nose

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