The reason for the move is that he was having some trouble breathing. This was caused by a reduction in the expansion of his lungs that in all likelihood had been slowly happening since he was taken off of the CPAP and put on the high flow nasal cannulae which happened on 7/21. With the high flow nasal cannulae he has to work harder to breathe - and he is such a little guy that he is not able to do all of the work necessary to fully expand his lungs.
Tonight we had a bit of a crisis. It all started when an RT (Respiratory Therapist) from the NO2 study that he has been on came to remove the high flow nasal cannulae that he has been on. She removed it because he had come to the end of the study (he had been on the gas mixture - which could either be just oxygen or could be a mixture of oxygen and a tiny bit of NO2). His doctor in the ICC said that he might not need any respiratory support but that if he did he should be put on a low flow nasal cannulae.
I did not agree with the doctors assessment as it has been clear for quite a while that Jack does not need much oxygen (his oxygen level on the respirator, the CPAP and the high flow nasal cannulae has been 21% which is the same as room air) but that he needs the pressure into his lungs that the respirator, the CPAP and the high flow nasal cannulae all provide - but which the low flow nasal cannulae does not. I told the doctor that his respiration rate increases when he had the high flow nasal cannulae off - as he works harder to breathe. This did not change his decision. Augh!
After Jac had been on the low flow nasal cannulaea for a little while his SpO2 went to 100% (it is supposed to be between 83 and 93% as higher levels are bad for his still developing eyes). The nurses had to turn the low flow off to allow his SpO2 to drop - or on a tiny flow - again this is not providing him any breathing assistance - just oxygen - which he does not need.
Shortly thereafter he went into respiratory distress. His heart rate (HR) dropped to 60 (it is normally 150 and above) his SpO2 dropped to 60 (again - it should be between 83 and 93). With some assistance from his nurse and after being bagged with 100% oxygen his HR and SpO2 came back up - and then back down - and then back up - as his nurse tried to help him. These were some of the scariest moments I have so far experienced in my life.
I pushed to get him back on the high flow cannulae and the nurse called people to make that happen - they had to get it from the NICU which is a very long hallway away - so as Jac and I sweated it out together - him struggling to breathe and me watching him struggle they finally got the high flow nasal cannulae setup (this seemed like it took an hour but it was probably more like 7 minutes).
His nurse put that on him and then suctioned out his mouth and nose (he had a lot of boogers) and he started doing much better but I knew things were not all better. His nurse then called the Nurse Practioner (NP) (a nurse with more training that can write orders and prescriptions) and asked her for her opinion. She ordered a chest X-Ray and a blood oxygenation level.
His nurse drew blood from his tiny little foot and the XRay tech came and took an XRay. 5 minutes later we had the results of the XRay and of the blood oxygenation level which showed that his lungs were not expanding enough and that his blood levels from for gasses were not great. The NP concluded that he needed to go back on CPAP and move back to the NICU where he could be monitored more closely again.
She also told us that with the lung issues that it was possible that he could have an infection in his lungs (pneumonia) which could be exacerbating/causing this problem so she ordered two more blood tests - a CBC and a CBR - both of which look for infection. The results of both of those tests came back negative meaning he does not have any signs of infection which is very reassuring.
I am staying at the hospital tonight - after all of the excitement of this evening I cannot stand to leave Jac so I am going to sleep by his bedside - or at least try to sleep. I hope he is fine now that he is back on CPAP and that he wil be able to rest and recover from this evening - the look on his little face when he was in respiratory distress is something I will not soon forget - he was struggling so hard to breathe - and I think it must have felt like drowning to him - it was just a terrible thing for a mother to watch her chil experience. I know I am going to have to have a good cry over this - out of Jac's earshot and once I know he is stable again.
Jac after having his blood drawn from his left foot for the blood gas.
Jac's chest X-Ray.
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