May 10, 2016

The Battle of the Ventilators and A Hiccup

I've been discovering just how complex of an organ the lungs are. They are made up of strands of cells that are connected throughout sections of the lung. If you damage one cell, it'll go through and damage all of the connecting cells. And once they are damaged, they're damaged. If you have large sections of damaged cells, it causes the lung to get tough and therefore has a harder time expanding. So the act of growing and developing healthy lungs is a fine art.

The VDR Ventilator they put Aiden on after his collapse allows for bigger pressures that keeps the lungs partially open at all times. It also vibrates the lungs constantly. They use this ventilator as a rescue tool for collapsed lungs, or for if a child aspirated oil, as an example. The pressures and vibrations are really good at opening the lung back up and shaking out anything inside them; which is why they moved Aiden to it. But the higher pressures and vibrations are also very damaging to the lungs, so the doctors haven't wanted to keep Aiden on this ventilator long term.

The past week he's been a Rockstar and continually weaning off the pressures. He got low enough that his medical team felt like he could be moved to another type of ventilator. And that's where our battle begins.

His neonatologist wants to move him back to the jet ventilator. This is the one he was on since birth and up until they switched him to the VDR. Her claim is that since the jet is more gentle on the lungs, it'll give him a chance to grow healthier lungs. He could potentially wean off the jet until there are no pressures. We could even give him a chance to not have to be trached and breath on his own.

But then his other neonatologist and respiratory therapist came back to say yes, but, he didn't do well on the jet. With the jet ventilator he had a hard time staying expanded, and we had to increase pressure pretty high before we moved him. A conventional ventilator would continue to keep him expanded while also allowing them to move towards putting a trach in if he needs one. And in their opinions, a conventional can grow healthy lungs too.

Some think the jet is a step backwards and would prolong his hospital stay. Others think the conventional will do better since it's more similar to the VDR and he's done so well on that. Which makes the jet voters say the VDR is more support. While the conventional voters say it can be more support, but the amount of pressure he's weaned to isn't really that much support. Some say the jet will grow healthier lungs, the others say it evens out in the end no matter what he's on. It's been a constant back and forth for a few days.

David and I think he should go to a conventional ventilator. He really did struggle on the jet ventilator. Plus, if he ends up needing to be trached, you can't have a trach on the jet ventilator. Why go to the jet when that can't work with a future possible medical need? That seems backwards and counterproductive.

And really the biggest difference between the two is that a jet ventilator offers him small breaths at a high frequency, while the conventional does something similar but also allows him normal breathing patterns and to take his own breaths on top of it.
His neonatologist finally decided to give him the weekend and would reassess everything on Monday. Which brings me to our big hiccup today.

Sunday night our nurse noticed he might be having some reflux. He was coughing on some milk after eating. She was right, because this morning he projectile threw up out of his mouth and nose.

They were worried he aspirated some of the spit up and promptly did an xray to see. He looked a little hazy, but not bad. So the doctor decided to just watch him.

Then they decided to put in an NJ feeding tube. Rather than one that goes down his throat and into his stomach, this goes down through his nose and into his intestine. This would eliminate any milk coming up and him aspirating it in case he spits up more. They will still keep his old feeding tube in his stomach and keep it hooked up to an open syringe so that he can burp and release air through it, but no food will go into it. His nurse said that since they continously feed him on this feeding tube straight into his intestines, it can also be really good for him in the sense that it will prevent some of his fluid build up.

He did not like putting in that NJ tube, but seemed to settle down and had a really nice afternoon. He had a good nap and was recovering - until he started to gag and have reflux again in the early evening. He got so bad at one point that yellow bile shot out through the open syringe leading to his stomach tube.

My poor baby was miserable. He would start to squirm as if he was uncomfortable, chew on his breathing tube, then desat as he gagged. Then yellow stomach acid would shoot into his vented tube and he would start to cry. You could look at him and just see that he wasn't feeling well.

I asked his nurse if they ever gave him some acid reflux meds, but it turned out his doctor wanted to "wait and see if it was a fluke or really something happening". So I asked for the nurse practitioner to come by. I explained to her that both of my other children had to start taking medicine for reflux around the same age, and that he was clearly miserable and I insist he is given something. As I told her this he gagged and shot acid again, and thankfully after seeing it she agreed and told me she would tell the doctor he needed something.

His doctor agreed to give him some prilosec, but also wanted to take a lung secretions sample, urine sample, blood culture, and start and IV for antibiotics as well. Because if he's acting so out of the ordinary, we'd better wait until the end of the day, and then check for everything under the sun as well... (catch my snark there?)

I'm actually really proud of him. He has had three x-rays, a huge throw up, continual acid reflux, and then a catheter inserted for a urine sample (not fun to watch), suctioned several times in a row, poked a few times until they got an iv, and 2 cc's of blood drawn for cultures (even worse to watch) all right after the other - and he didn't decompose once! He turned purple when they did the NJ tube, but that's expected from all babies. He had all those other tests done one after another with no break in between, and he contained himself. He was cranky and grimaced and was clearly stressed, but he didn't bradycardia or go purple once. A month ago even one x-ray would send him into a purple crying fit and he would need an entire day to recover. Even with everything else going on this is a good sign!

But in spite of being excited over that, I'm feeling very frustrated and upset tonight. I can't believe that I had to fight a doctor to give my child some medicine for acid reflux today. They are so quick to pump him full of every other medicine under the sun, but when he's sitting in his crib miserable and throwing up, I have to insist they give him something for it. Acid reflux is perhaps the most normal thing that he has experienced, and it's like pulling teeth to get them to do something about it. And in order to give him some prilosec they have to in turn get a lung secretion, urine, and blood sample? It boggles my mind and ticks me off!

Needless to say moving to another ventilator is not going to happen today. And I really think this is only acid reflux and he doesn't have some other weird bug or infection. When we left the hospital he was nice and calm and bouncing back quickly. I myself am feeling very high-strung from the day's events and probably won't get much sleep, but alas, what else is new on that front?

Being grouchy and rightfully so. 

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