Need some real help here!

[kctwinmommy]

We're really struggling with which path to take for Kira's care. We didn't seem to know all the possible risks with putting her on the vent 24/7, thinking that something horrible would happen if we didn't. Keep in mind, she was off the vent before she went to CMH 2 weeks ago! Completely off of it!!

So, on Friday we had our first problem between the doctors are CAMP/CMH (Children's) and her pulminologist here at the hospital. According to her CAMP doctors, we’re supposed to work on this ladder system. When he CO2 goes up too high or down to low, we make vent adjustments. However, we weren’t really told what to do when we reach the end of that ladder. And that happened Friday night. So when we contacted them, or I should say her nurse did, they didn’t really give much advice. They just pointed out that they’re to be consults to Kira’s regular pulminologist. The problem being, Dr. A. doesn’t use the ladder system. He doesn’t believe in adjusting the vent for every little issue. And now I’m starting to see why.

That night her CO2 levels were in the mid-20’s. I’ve always had this backwards, but apparently, it’s more dangerous to not have enough CO2 instead of too much. When you have too much, your body can blow it off and will get rid of it. But your body also needs enough for your brain to function. So if it’s not getting enough, then you’re risking brain damage. This is what we were dealing with that night. So while Dr. A. doesn’t like making the adjustments, he certainly told her nurse to lower her breath rate. Within 15-20 minutes, her CO2 was in the upper-30’s, which is so much better. And even her 02 levels, which initially dropped to lower 90’s, came back to level off in the mid to upper-90’s.

We’re left the settings as they were for the weekend. Since the CAMP team, or at least the one doctor we spoke with, felt that she would be OK like this for the weekend, then they could review things further. Umm… no! I can’t handle the thought of her having possible brain damage, or worse, cuz someone thinks that’s OK.

We’re dealing with two different sets of thoughts and two different protocols. One of them is much more research based, in the hopes of getting more answers to help Kira, and other kids, further down the road. The other one is based more on real life. That one is trying to look at her quality of life and making sure that she’s not getting into dangerous zones. In fact, Dr. A. told me on Saturday that if we wanted to continue using the ladder protocol, which dropped her CO2 levels that low, then he feels that it would be unethical of him to continue advising us on much more. He wouldn’t want to be involved in decisions that could cause serious harm. Of course I can't help but wonder if we need to choose between quality of life and quantity of life!?!?! With no guarantee that we'll have both!

Everyday I think that we’re getting more answers, and instead we’re getting more questions. When we left the CAMP program 2 weeks ago, I thought that we were heading in the right direction. And even after our initial issues between them and Dr. A., things were going OK. But now we realize that there’s a lot more that we haven’t thought of. Not only can we risk serious damage, we could end up pushing her body to become completely vent dependent. Since the lungs only need so much pressure in them to work, they work fine when that’s there. But then the vent adds more pressure, which over time creates scar tissue. And eventually, that scar tissue can only be expanded by the pressure from a vent.

So… are we helping her the best way with having her on the vent 24/7 when we know that she CAN breathe on her own? We know that's a risk still, since she can have moments where she stops breathing. But we're always with her (or we would be), and always use a portable pulse ox. Or are we risking creating a completely vent dependent 8 year old by keeping her on it all the time? We’re really lost with all of this. At times it seems so obvious, and other times, I feel like I’m in the fog.

[MomofTwoBoys]

It definitely sounds like you need to have a meeting with her primary doc and get an established protocol. The ladder system sounds good but there has to be a longer chain for you to follow... if not it could definitely do more damage than good. I personally would be leary of a plan that has such short end points that you don't have the resources to re-adjust Can they put her on a cpap mode with a backup rate, just in case she stops breathing, but keep the peep and pressure support low? If her peep is around 4-5 it is close to the equivalent of breathing "normally" without vent..... I hope that you can get this figured out ::hugs::

[Niff]

Not many places do this, and it confuses me...

With every home ventilator you can choose between CPAP, BiPAP, and SIMV ventilation. CPAP and BiPAP do not have rated breaths... they just deliver pressure to keep her bronchials nice and open. CPAP is a straight PEEP and BiPAP enables pressure support to ease her work of breathing. Now with CPAP and BiPAP you still have the generic 20-second apnea rate. If she doesn't breathe after 20 seconds, the vent will give her a breath at whatever tidal volume is set. But, at least with the LTV 950s, you can increase that apnea interval. Mackenzie had underlying lung issues that caused her to need SIMV ventilation. We finally got her down to just a CPAP Peep +4 but then discovered apneas. Rather than putting her back on SIMV and ventilating her, which she didn't need, we increased the apnea interval to 12 seconds. So if after 12 seconds she didn't breathe, the vent gives her a breath.

I would be curious as to why they want to offer straight ventilation as opposed to support with ventilation as needed.... if, as you believe, she doesn't need the ventilation all the time.

As far as having 2 different hands in the pot, it really is just a matter of time before one hand forces the other to leave. Our local hospital and our Children's have two completely different ideas on pulmonary care. As a person stuck in the middle, there were philosphies I agreed with on both sides. Our children's had the most experience overall, but weren't privy to Mackenzie's particular progress... the neos at our home hospital knew her history and what worked for her, so they were willing to do things a bit differently. In the end it was our home hospital that was able to get Mackenzie safely off the vent for any length of time.

I'm assuming you live a great distance from your Children's? Is this why you have 2 teams?

PS - Major s to you!

[kctwinmommy]

Originally Posted by Niff

I'm assuming you live a great distance from your Children's? Is this why you have 2 teams?

PS - Major s to you!

Nope! We actually live about 10 miles from them. We're in Chicago, so it's close to us, as is our primary.

Our reasons for the two docs is she went to Children's for the ROHHAD diagnosis. The team there is the only one in the U.S. that studies it. So we went there. But no were realizing that their approach is more of clinical, idealistic setting, not realistic.

Oh, and we have an HMO, so our primary docs are all here at our regular hospital. We saw Children's with a referral...

And thank you!! We're going to have look more into the C-pap and SIMV modes, talk to her pulm. about that then. She was on Bi-Pap for the past year before the trach even!

[Niff]

Perhaps you could suggest staying on the BiPAP and adding a back-up rate?

[kctwinmommy]

Originally Posted by Niff

Perhaps you could suggest staying on the BiPAP and adding a back-up rate?

It would have to be C-Pap. My understanding is that BiPap only works with a mask, i.e. - no trach. But I'm going to check on this. Thanks!

[Niff]

No, it works with trachs as well. It's just a CPAP with pressure support dialed in. To transition Mackenzie onto her home vent we put her on BiPAP for a few days before CPAP.

[Melisande]

Cindy,

Wow! I may have to visit your blog later and find out what CAMP is. I have a hard time keeping up. We had a similiar dilemma, when Donovan was first placed on the vent. He was hypoventilating, mostly while sleeping but he also stopped breathing during the day in apneic episodes. At first, the doctors wanted him on the vent 24/7. I had the same argument, why do that when he breaths fine 99% of the time while he's awake? Our solution was to monitor his O2 sats and CO2 levels throughout the day. There is an end tidal CO2 monitor for home use. He had serious CO2 issues as well. Then we just bagged him and gave him oxygen when he stopped breathing. ( Sounds like we just went the the grocery store or something, right? Totally terrifying, but it worked.) He was on the vent while sleeping only. This worked fine for us.

I do know that there is a specialist in CCHS that uses the ladder system based on CO2 levels. We never used it because Donovan maintained very well with his regular vent settings and we knew because we watched his levels regularly throughout the night, every 2 hours. It does sound to me as though your baby maybe overventilated if you're that low on the CO2. Donovan had relatively mild hypoventilation and no genetic markers have been identified to tell us why he was apneic/hypoventilation yet.

I don't know if that is any help to you or not. Some docs are very by-the-book and what I would call aggressive with vent management. I think it is something you have to find works for your child too. For Donovan, a less aggressive approach worked and has worked because he's now off the vent. I think you have to weigh all the factors for your individual child, however, if that makes sense.

[kctwinmommy]

Originally Posted by Melisande

Cindy,

Wow! I may have to visit your blog later and find out what CAMP is. I have a hard time keeping up.

Thank you so much!! All of this info is helping me out a lot!

And CAMP is the Center for Autonomic Medicine in Pediatrics.

[drct1245]

Do they have her on any sort of meds to keep the airway open and so she isn't trapping the CO2? I see she has some malicia, so that doesn't always work for those kiddos... but thought I would throw that out there.

Sorry I can't help much more.