Serena
The crew at the park
On Tuesday is was so nice out that we packed up the kids and were about to head to the park. Well, it didn't start off as the fun trip it ended up being. I carried Serena and her O2 tank down to the car and my Mom had Edwin. I got into the back seat and Edwin was screaming. I looked at him and his lips looked a little blueish to me. I got the same sinking feeling that I did when a nurse had unplugged him from his oxygen and hadn't noticed (I never posted about that, but it was a horrible experience and she was told not to come back to our home.) Anyway, maternal instinct set in and I threw the bag that my mom had placed on top of his O2 tank, and I saw that the "Christmas tree" that the tubing plugs into that is screwed onto the regulator has snapped in half, therefore not providing O2 through the tubing. There is no way to connect the tubing to the regulator without a "Christmas tree" so I immediately told my mom to hook Edwin up to Serena's tank and I grabbed her in her car seat and ran upstairs to the house. I got her hooked up to her O2 tank in the house and her monitor only read 90. Good girl! Edwin was fine, we never knew what his sats were because the monitor doesn't read when he moves his foot, but he was fine. It was scary though and shows just how much we rely on medical equipment that can easily break. I guess the way it was laid down just so caused it to snap in half.
So of course I thought about what I would have done had that happened while we were at the park. Well I now carry spare Christmas trees, although I think I had one in the diaper bag anyway but I didn't dare look for it in that moment. I know I have spare nasal cannulas, tegaderm, poseys, and probe stickies. I also always had a spare tank in the car, but no regulator on it. I always imagined the issue would be we ran out of O2, not that we would have a stupid piece of plastic break on usmakng the tank and the regulator unusable. Well anyway, I put the other regulator on the spare tank even though this regulator only goes from 250 to 500 and then to 750. Well the kiddos are being weaned by 50 ccs so that isn't ideal, but it will work in case of an emergency. Had it happened at the park I would have been very scared, but would have made adjustments. I figured I would have switched Edwin to Serena's tank and put him to 450 where he belongs, and would have turned up the broken one to 500 and held the tubing by the hole. Even though it isn't a secure way, at 500ccs it would have provided enough flow for Serena until we made the 5 minute drive home. Oh...life will be so much easier when they are off O2.
Anyway, we had a great time at the park. It was so good to be out and about. Edwin's 2 best friends, who are like uncles to Bean and Champ, met me, Edwin and my mom down at the park. We walked around, talked, and took Champ and Beana out to see the "real world." It was so good to get fresh air, if the weather is nice we will definitely go out again! This time with even more spare equipment.
p.s. Serena will be going to see an ENT specialist in Boston for her throat issues, we are hoping and praying they discover what is wrong, that is correctable, and does not entail any major surgery. We'll keep you updated.
Mommy, Daddy, Grammy and the twins
Daddy ruining the picture tryna wink
8 comments:
VERY cute pics!! I have to say that I am a little concerned about the whole oxygen issue. To turn off colour that quickly means to me that something just isn't right...you shouldn't have to run around like that to get him back on oxygen so quickly...
I love the little knitted jackets/sweaters the babies are in!!
Hi Steph,
I agree with Shannon--you might want to talk to the pulmonologist (or at least ped) about this. Do you have any idea how long Edwin was off the oxygen? It didn't sound long from your description here. Is the flow ok? Does he seize up (bronchospasm) and need additional breathing treatments? Was the tank really on/full etc? We never experienced anything like this with Hallie...
Hoping everything is okay...meanwhile, I emailed you about the manhattan baby toy skwish thing...i think it's available at some on line places (via froogle) and it comes in both primary colors and super cool more girly colors (i think they call them vibrant or something). So get two and prevent a tug of war, or get one and promote fine motor skills!
Hey guys, thanks for the concern. It was only a minute max, but he ws screaming crying which made his lips look bluish to me. I just got this feeling something wasn't right. When I checked there was NO flow because the plastic piece had completely broken off leaving the tubing unattached to the tank. He definitely can't function without ANY flow. When he turned bluish the last time with the nurse his sats were in the 60s and he had only been unplugged for about 2 minutes max. His sats are fine with O2, but he will desat right away if the cannula comes out of his nose or if he is unplugged. It starts with him going from 100 to 99 to 98, etc.
Serena does ok without flow for a few minutes, but even she will go to 90 if the cannula is out of her nose. Their alarms go off at 90 so that's as low as I ever let it get when the cannula comes out so I don't have a great time frame as to how long it is out before they hit 90, because if I see the cannula out I obviously put it back in, you know what I mean?
The pulmonologist is aware of their need for constant O2, and that's part of the reason the wean is so slow and we are no where close to them spending time off O2. He was told about the nurse incident where she unplugged him without knowing and how low he got.
I think the reason he is not on any breathing treatments is because he does perfectly fine with O2. His sats are always 98-100, and the pulmonologist only wants them to be 92+ for us to continue the slow wean. He told me it usually isn't until kids are at 100ccs of O2 that they are physically able to spend time off O2, and that will only be for about 15 minute intervals for my two. You figure Edwin is on 450ccs now; we are weaning by 50ccs every 2 weeks, so he has a LONG way to go before he can even spend 15 minutes off oxygen.
Thanks for the concern though, I guess they just have more serious CLD than others.
Oh, and one more thing I forgot to mention. You figure both times his lips looked bluish to me, this time and the nurse time, he was screaming crying. The fact that he was crying probably added to the problem, because when he gets all worked up and distressed his breathing is not as good even with flow. Combine crying and distressed with NO flow, and you figure he is going to have more of an issue. When I took the pics of them without their cannulas there was no turing off color, and that has a lot to do with the fact he was calm and not distressed.
And Abby thanks for the info. Looks like the kiddos have their Easter presents picked out!
Hey Stephanie,
I understand what you are saying but it still is a bit concerning. If they are satting 100 on oxygen it means they need to be turned down. The doc should tell you that they should never be satting 100 (on oxygen..just like the vent). Ashton still drops to the 50s/60s and he is no longer on oxygen. I definitely agree that he should be on some other breathing treatments if he isn't already.
Shannon,
I understand the policy at the NICU was to wean when sats were high, however, our pulmonolgist takes a different approach. Stability is important to him, and the feeding/growing issue is what is important. I do not have free reign to wean. We wean on a schedule, not based on sats. Their CO2 retention levels are quite high, meaning that, although they may sat high, they are still working really hard. Our pulmonologist does not believe in going up and down based on what the sats are at that time. Rather, it is a process to get them strong enough to be off O2. I wish I could wean when they sat high, but I also don't want setbacks. Their pulmonologist is aware of high they sat, but still wants us to wean by 50 every 2 weeks for now. I call back in another week to tell him how they are doing, and he will decide whether or not to be more aggressive or not. It is totally unllike the NICU, we do not even have a high sat alarm set on their pulse ox. That's just the way they do things around here, I just asked the nurse who has cared for other preemies on O2 and she said the same thing. It is a scheduled wean, and not just for high sats.
As for the breathing treatments, it's never been brought up by the NICU team, pedi, nor the pulmonogist. I guess I could ask about it, but it seems to me if they needed them a Dr would have ordered it. They are followed closely by a team, and we have RNs in our home almost daily and no one has ever said they think they need breathing treatments.
Was Ashton just on them because of his CLD or was there something else going on, like a "junky" sound when he breathed?
Hi Stephanie,
Ashton gets puffers three times a day. He used to get two puffers three times a day but now it is only the one.
He has CLD and sounds very junky a lot of the time. I think this is mostly related to reflux.
I guess all docs do things different so you are doing what they want. That is the frustrating thing for me...just how different care can be. I hope things work out for you and they are weaned okay!!
As for the sats, I get hounded a lot from other preemie moms that Ashton dropping his sats so much is not okay and so on....what they don't realize is that oxygen does NOT help him anyhow. It was becoming toxic. It is obvious however that oxygen is helping your babies so this is a good thing. Many times with neurological issues there are desats throughout life. I just don't like how docs say that one day they won't do it...Ashton is almost two and still desats consistently.
Just wanted to say that Noah was similar to Edwin when he was on 02 - satting at 100% on the oxygen, but dropping quickly without it. I think he was around 10 or 11 months actual before we were able to start weaning him. He was also on pulmocort and xoponex twice a day, though. He's still on the pulmocort as our pulmo keeps that up at least until 1 year after coming off of O2 (he's been off since August). In the NICU they prefered his sats to be lower than they were, but even just changing the O2 1% would often make Noah drop like a rock. Not the way we would prefer our kiddos lungs to respond, but I take what I can get.
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