Wednesday, March 24, 2010

Where we're at right now!

The bad news is the last 24 hours were discouraging and draining. The good news is that I'm on the other side of that now!! It's a good thing that I didn't write a post during that time, because it would have sounded like a bit of a downer!

Yes, the transition to the new floor and ward was very difficult for Nate and he still continues to have some pretty bad moments, behaviorally. Medically speaking, getting onto the cardiac ward, where hearts are their business, I've learned a bit more about Nate's situation. The part I found the hardest is that they aren't even close to thinking about sending us home. They're not talking about 'days' here. That's really hard and was the biggest cause for my emotional collapse again. The one thing I have figured out is that even though I am missing Brady with everything I've got, I realize that he is really OK, and having such a super time with his cousins, so the challenge is for me to accept and have peace with that, and try not to let that aspect of my emotions drain me further.

Nate's ventricle function on both sides isn't where they want it. The band isn't tight, (purposely so) and as a result the ventricle has not changed as they wanted it to yet. They are waiting for the septum, or wall, of the heart to be pushed over by the changing and larger ventricle. His heart appears slightly enlarged and at this point there is still some fluid around the heart. They continue to work on his drug cocktail to get it to a level that will help him without lowering his blood pressure, and keeping in mind the effect some drugs have on other organs. His lungs are looking a bit better. One still is partially collapsed, with only minor deterioration from yesterday's xray.

The cardiologist who is on for right now was very concerned with the behavioral issues Nate was having. They are completely out of character - getting extremely mad and agitated, inconsolable and not really knowing what it is he wanted that he thought there may be some other issues going on - ie. possible TIA's or that the fluid around his heart is giving him pain. It's so hard for us to know. He start him on a med to try to reduce it.

Nate is still not eating. Today he had 3 bites of bread with jam for breakfast, then half an arrow root cookie in the afternoon. That's all. He's drinking lots of milk, but turning his head to every food we offer. That's hard to see. He did have some happier moments, too! Because of his 'episodes' the cardiologist is allowing us to go to the play room to try and get some happiness and normalness into Nate's routine. I'm so thankful for that. It was a bit frustrating, however, for Nate as he is wanting to stand and walk on his own, but when we tried, he is still very wobbly on his feet. He did walk a short distance with me holding his hand, but tired from that quickly.

Today Don is on night duty. I'm in the middle of doing laundry now and I'll sleep here at the hotel till early morning and then go join him. I was at the hospital last night so we're trying to help each other out!

Please pray that Nate's heart would totally surprise the doctors at the next echo, or even at the next exam, and that God would show us how He is in control and can heal hearts!


Anonymous said...

It's good to have a direction for prayer. Feeling for you.


Anonymous said...

I've been reading your blog each day but the one this morning really hit home for me. Last summer I had to leave my family and everything familiar for 2 weeks to seek medical help for myself. I feel so much for you when you describe wanting to come home and to see Brady again. I pray that God will give you peace and strength to help you through each day. Sometimes it's only when you look back that you see how God was holding you and carrying you through this difficult time. Keep trusing Him for your needs, minute by minute. I'm sure it's very busy for you but I encourage you to dig deep into God's Word to find your strength and encouragement. Psalm 34:8 Colleen Driedger

Karen said...

I can only feel for you as you are missing Brady. As I only have one child I could always focus all my energy to the situation at hand. I remember the feeling of dispare when you realize that there is no discharge date in the near future. Be strong in the Lord, and God has provided that both you and Don are there together. Carl stayed with me too; and I have to say it's nice to have that spouse to talk to, and have some bedside relief. So many parents are not able to both be with their sick child.

Eva said...

It would be great if your son could come out for a visit.. that would really lift your spirits. The Lord knows your every need and will provide. Praying for you.

pastor Dale said...

Hi Don, Carole, Brady, Nate:
Thanks for the updates on Nate's continuing journey. Stand firm in the Lord and in his strength. Your update will give us good direction to know how to pray for all of you.

In Christ, Pastor Dale, Winkler EMM Church.

Wes and Dinah said...

Oh Carole, this is a hard post to read. So many road bumps to deal with, not to mention the time frame.
We are still praying and though that sounds a bit repetative, it's not said lightly. It's the best life line we have for you out here.