Thursday, February 19, 2009

Creeping

We are creeping forward! The cardiologist came in today and said that the x-ray still showed fluid in and around his lungs. She decided to put an IV in and give his Lasix every 8 hours vs. every 6. They are hopeing that this will clear out his lungs and then he can go back to his old routine of every 12 hours. They think treating the fluid will cut down on his resperations too. Im not to confident this will work because they have tried it before. But only time will tell. Im still a little (alright a lot) frustrated with the docs. The WHOLE reason we came up here was because he was dehydrated and I feel like they are not working on figuring out why. I totally understand treating the fluid in his lungs, but I want to know why he is getting dehydrated and still has fluid in his lungs. Is there something we can do at home? Should we try a different diuretic? I feel like she is seeing it in back and while and im looking at the grey area. Are there other things we could be trying? We put a call into the nurse practitioner and hopefully she will come up tomorrow and I can talk to her about our concerns. Am I a worried mom? Do you think im crazy? haha, Im beginning to think i am.

So I have sat in this room all day feeling sorry for our situation, wishing we were at home and that Malachi didn't have to go through all of this. I left to get some water and walked by a room with a little boy named Kevin in it. He has cancer and has been in the hospital for sometime now. He was in his room playing with the child life specialists. He was happy and enjoying every min with his lady friends. I got back to the room and started crying. Here I am with my son who will eventually get over all of "this" one day he will be running in the yard and this will be a distant memory. Kevin on the other hand will have to worry daily about relapsing or even getting a cold that might mean the end of his life. Suddenly what we are going through doesnt seem so bad. There is room after room of patients who have to fight. They don't get a day off or a break. They have to put their head down and charge through. I admire them. I want to be like 10 year old Kevin. Being here has helped me realize that there is always someone who has it worse than Malachi does. I want everyone tonight to think about the millions of children in the world who don't get a day of. Think about their strength and courage and next time you moan about your situation, remember it could always be worse! I am thankful for every min we have spent up here because I have grown from it. We will fight today and get up tomorrow and do it again and again. From this point on Im going to have a good attitude about this and rejoice at every obstacle.

4 comments:

Lacey said...

It is such a fine line with heart kidos. Jax is dieretic dependant. And so they are constantly giving him fluids and then taking it off with his dieretic. Its such a pain.

whatever to us said...

Hugs to you, I think you've figured out one big step of this journey with an extra chromosome-enjoy today, whatever it may be, because it is here and no one knows what tomorrow will hold (ok, so I feel that's my biggest 'lesson' to date)...kiss your sweet prince from us and know you're in our thoughts and prayers...

Shari said...

First, you are not worrying too much. I think your voice needs to be heard so make sure you speak up. You are your son's advocate! Don't give up! And, you are right. We have to put our lives into perspective sometimes to get out of our pity hole. I have struggled with that recently. Thank you for posting that and I continue praying for Malachi.

whatever to us said...

just checking in on you and your little one....glad to hear that he's in a good mood and looking better...in our thoughts and prayers for the doctors to figure this out so you all can go home...hugs!