Friday, 8 February 2013


At our doctor’s appointment yesterday, it was confirmed by x-ray that Jacob has a viral pneumonia. Seeing that it's viral, his body fight it out naturally. This path would be slightly easier if his brain would signal things properly.  At times, his brain doesn't even signal him to cough.  He attempts to cough, but his brain turns it off part way through.  I wish we could cough for him!!  The huge concern is that the pneumonia will turn into a bacterial pneumonia which requires antibiotics. Chest physio is a big part of his care now, to keep the stuff in his lungs moving. He's also back on a ventolin puffer to help with opening his airways. He's on oxygen, because he's not keeping his oxygen level high enough.

On Monday, Jacob continually was biting/grinding/crunching his teeth and gums. It sounded awful!! He kept biting his lips and cheeks, therefore causing huge blisters. The biggest one is almost the size of a dime. The blisters have since turned into a virus (similar to canker sores, but more painful.) The doctor increased his morphine dose to combat the intense pain. The more he's in pain the more he bites down and the more he bites down, the more pain he's in, as he opens up those blisters again. It's a vicious cycle. The morphine actually works as intended, which is a great reason for genuine thankfulness.

Putting him on morphine was a step we hoped that Paul and I didn't want to consider for a long time. Yet, it helps considerably, and when we see him 'somewhat' settled, we do believe it's for his good. We continually have to go focus on our goal for Jacob,  that he's as comfortable as possible.

Paul and I are feeling thankful more than ever for praying and caring family and friends. God indeed hears and answers prayers!! Not always in the way that we want, yet according to His good will.   

We also feel so blessed to have such a great medical team beside us. Our paediatrician and palliative care nurse make a terrific team!! We currently have 5 superb night nurses!! We feel once again God's leading hand. The managers that oversee what's going on in the home are caring and compassionate beyond words.  They truly walk this path beside us, helping in any way possible.

Jacob was scheduled to go to respite today, but that has been cancelled. That's hard on us, as we've had to postpone a little family vacation, yet we are content to be close by our little man, especially during this unsettled time. Every day with him is a great blessing. We've seen this through a different set of lenses this week, as we watched helplessly, Jacob battling for every breath, and watching his levels continue to drop. Miraculously he picked up and four days later we still are able to spend time with him.

Peacefully asleep.  The 'beautiful' frog is Caleb's pride and joy.  For him to give it to Jacob, really showed us how much Caleb loves his brother, and feels for him when he's suffering.

He snuggled right into the frog :) 

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