Well we got onto the portable ventilator at the first go. Even the nurses were surprised at how quickly he took to it. And just when we started to talk about maybe taking Joshua for a walk around the hospital to get him a change of scenery or maybe even some sunlight he started to get worse again. His clusters of seizures continued and the doctors administered more and more Buccal Midazolam and IV Phenytoin until he was so sedated that they had to intubate him. I can’t remember how many days he was fully ventilated for, maybe 3 or 4 but we noticed that while he was intubated, even though he was fully sedated, he was actually breathing for himself! Since he was 3 or 4 weeks old when we first noticed these issues he’s never really breathed when he’s asleep. We were confused, the doctors and nurses were confused and no one could offer us an explanation.

While he was fully ventilated they took the opportunity to perform the muscle biopsy and we started to question if they should look at his airway as the tube down his throat seemed to have helped his breathing issue. The doctors as before were less convinced that there was/is an airway issue and decided not to pursue it. The other new thing that happened while he was intubated was that he started to get a lot of secretions that needed suctioning, which isn’t surprising as he was sedated and couldn’t control his own swallow/breathing reflex.

After the few days of being fully ventilated Joshua started to wake up so they extubated him and put him back on the main ventilator but with the face shield that he started with. Again his temperature started to rise and shortly after he started to seize again, but this time the seizures were more in line with the high temperature/infection seizures that we saw after his vaccinations. Bloods were taken and low and behold he’d picked up an infection which needed urgent antibiotics. We also found that when he was extubated Joshua went back to not breathing when asleep. The doctors said that this was because when he is fully ventilated it’s easier for the machine to read his breaths and that when he’s on the face shield he probably is breathing, but not deeply enough to oxygenate his blood or for the machine to pick it up. I still think they should look down his throat, even to just rule it out.

As the seizures continued, the neuro doctors once again changed his medication, this time back to Phenobarbital which is what Joshua started on and was stopped because he was so sleepy on it. Since then he has slept continuously but doesn’t really have any seizures anymore. It’s a horrible balancing act between him being asleep all the time but seizure free, or awake with lots of seizures. Neither is good for a developing baby, but for the moment the neuro doctors would rather he was asleep without seizures so that’s where we are. Unfortunately due to his sleepyness, he isn’t managing his secretions at all and is needing respiratory physio 3 times a day just to clear them off his chest. They are causing him a lot of discomfort and his saturations to drop on a regular basis.

We’ve been on PICU for 73 days now. It feels like a lifetime.

3 thoughts on “73 days and counting

  1. Although it must be so hard writing this blog Ben, it gives an understanding of what you are all going through on a daily basis. Josh has gone through an awful lot since being born and you must be out of your minds with worry. I know on talking to your mum how upset she is. I pray that you will have some answers soon . Love to all xxxx


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