Monday, July 2, 2012

Stepping down (again)

I feel like this hospital stay is one big case of deja vu. We are getting very anxious to go home because Jensen is doing great! This is exactly how we felt last time. So they are moving us to the CCU today!

His team decided to put him on lovenox because he needs anti-coagulation to keep his stents open. However, this comes with a huge risk to his brain. He has subdural and subarachnoid bleeds and obviously blood thinners could cause the bleeds to get worse. He was started on lovenox on Friday and was watched closely over the weekend for any signs of bleeding. Yesterday he had a head CT and we were told his hemorrhage looked the same (good news)!

He is off oxygen and eating everything, meds included, by mouth. He is going to have a follow up swallow study to see if he tolerates thin liquids. I feel like this time he won't have as many feeding issues because his voice is strong and he's eating like a champ!

Now he just needs to work on correcting his electrolyte imbalance. This happens to kids in the CICU because they have to be on large doses of diuretics for their hearts. He is getting supplements of sodium and potassium in his bottles but he doesn't tolerate them well...it comes right back out of his nose, yuck. But once he is weaned down on his diuretics his electrolytes will rebalance.

The longer we stay here the less patience we have. We love CHOP and are so grateful for what they have done for Jensen. However, we are smarter this time around and can see when fellows are lazy and nurses don't pay attention. We know Jensen and what he is capable of. We have to constantly remind people here that he really is fine, even if the monitor says otherwise. This experience really makes you appreciate a good nurse or a doctor that realizes we aren't stupid parents.

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