Recovery Day 6

Rémi continues to amaze me with his spunk and sass.

As you may remember he was supposed to be completely sedated, and paralyzed with a muscle relaxer for 3-5 days. After 3 days, they started to try and lift the muscle relaxer and allow peripheral movement only (wiggle his hands and feet).

In true Rémi fashion he woke up with a bang and was moving quite a bit more than acceptable. This has led to days of playing with multiple types of agents for sedating him-which is still proving to be a challenge for this little fighter.

We are trying to find the balance between full sedation and full movement. This is especially important for us at the moment. He needs to exercise his lungs and bring up some secretions that have settled on his lungs.

Due to a variety of factors, Rémi has developed a small collapse of his upper right lung that is moving into his lower lobe causing collapse there as well. He has been started on antibiotics as he spiked a fever and is suspected to have a lung infection. It can take multiple days for the cultures to grow a bacterial strain so now we wait to see if our suspicions are confirmed.

Until then, he's been started on the antibiotics to treat a possible infection, tylenol for his fever and gentle chest physiotherapy to help mobilize some of the extra fluid.

On a very positive note, his respiratory demands have not increased. This means he's compensating well for the collapse. The team is also planning to extubate him tomorrow if he continues to need such little intervention. Once the tube is out and sedation is lifted even more, we expect his lungs to clear up.

Clinically, Rémi’s recovery has actually been quite good. As parents though the worry never stops, and we feel extremely drained from the hour to hour changes.

We are so much closer to being able to hold our little guy once again. For now, hand holding and head touching (for as much as he can tolerate it) is our comfort.

We are still in the pediatric ICU for a few more days and are looking forward to transfering back to our ward soon. Keep fighting my sweet boy!