So Good!

It was fabulous being able to spend time with my Grandma and Aunt Donna for a few days. It was such a blessing for them to be able to come out from British Columbia to meet Zach and play with Aaron. And what is more important than cuddle time?!

Some slips downhill

For the past few weeks, Zach's breathing has become more labored. We are not sure what is causing the breathing difficulties, perhaps cardiac issues. He will inhale, hold his breath for a few seconds, and then exhale. It is/was quite scary to watch because during those pauses you are afraid that he might not exhale again.

He was clearly not comfortable so we have increased his Morphine and Valium hoping that it might help him relax while breathing. He is also now on oxygen most of the time. Let me tell you that those oxygen converters are loud and put out a lot of heat! At night we can't keep it in his room because his room becomes like a sauna, so we run tubing from the main floor up to his room.

I have to continually remind myself that his comfort is more important than my feelings. At this point for Zachary his breathing is most relaxed when he is somewhat sedated. Another step in this long good-bye.

Aaron (our 2 1/2 year old) is doing so well. I have been wondering when is the right time to tell him that Zachary is a very sick boy. He has no clue right now that Zach is different than other babies. Don't all babies eat with a feeding bag and have medication administered every 2 hours? I want to prepare him for the roller coaster that he is going to be riding. As a mom I am more concerned with how Aaron will and is processing all that will be happening than I am about myself. I want to be able to save both my boys from suffering, but I can't.

Long term or short term

The planner in me of late has been struggling with the big question mark that is Zachary's life. I feel that I have to prepare myself emotionally for Zachary being with us for a very short time, but the reality is that we really have no idea how long he could be here. It could be weeks or years.

I guess I'm just not sure how to proceed with my life. I hate to say it but I feel like I am in a holding pattern.

We had a wonderful day as my grandma and aunt are in town from the west coast of Canada! Unfortunately Zach had another spell of infantile spasms today, and we haven't seen any in weeks. Very disappointing. I can't write a lot today as I am working on getting packed for a trip out to Bethlehem, Pennsylvania to visit my brother! I hope everyone's weather is as gorgeous as our is today!

Sleepy boy

Had some rough days this week. Zach has been screaming, crying whenever he was awake, so we started him on scheduled Morphine and Diaspam. After playing with the dosing and fighting with constipation, we now have a boy that can be awake and not be in pain. We are not sure what is causing it,whether it was some of his other meds or one of his several issues. During this time, we are reminded again of how short our time with Zachary will be.

He is sleeping peacefully next to me now. As we live in the sad expectation of his passing one day, my mind wanders to what our pastor shared in church about living in joyful expectation of Christ's return. Let me tell you, in my position, wanting Christ to return is all selfish. I get excited just considering going to our heavenly home with Zachary, rather than having him beat me there. I mean, parents are suppose to out live their children, but I guess even Eve had to experience the pain of losing a child.