In the Hospital
Well, time has come again for us to spend some 'quality' time with some great nurses in the hospital - that come with mixed emotions. I love reunions, but ones in the hospital are bitter sweet. Paul and I brought Jacob to emerg last night because he was having difficulties breathing. Things were only getting worse at home, so after a long 48 hours, we decided to get a second opinion.
It was confirmed today that Jacob has another pneumonia. His breathing today was still very laboured, even though he is on an extremely high amount of oxygen. This morning I had the scare of my life when Jacob became non-responsive for about 30 minutes. It's amazing how many thoughts can go through a mind in a matter of a minute - let alone 30!
Today we've had a heavy weighted meeting with the palliative care practitioner and several people from the medical team. In the meeting we talked about things that we've never talked about before, it's another step. It puts things in perspective that when a child has a severe neurological condition, things are NOT pretty. The conclusion of the meeting was, we aren't going to treat the monitors any more, instead we are going to treat Jacob. So in other words, when Paul or I are in Jacob's room, he will not be hooked up to monitors. If we are in doubt, the nurse will hook him back up. The medical team has lowered all his standards on the monitors, which is also a reality check. Even though this step can be agonizing, it fulfils our desire that we have for Jacob - that he will be as comfortable as possible.
Paul and I are staying at the Ronald McDonald house tonight because we have no idea what to expect tonight, and we don't want to be 45 minutes away if anything goes wrong. We'll have to see what we do after tonight, because we have three other kids that also need their dad and mom. Hopefully they will come up tonight.
We are reminded again that God has all things in His control. He's known the outcome regarding our dear little boy from all eternity. For us to be raising a child who will forever honour and glorify his maker, is a humbling reality. Truthfully, one that I can hardly begin to comprehend.