Day 125

Well, yesterday didn't go as well as I had hoped after I posted the last update. He had a pretty rough day and night, but I'm hoping greener pastures are ahead for today. He's been having a lot of trouble breathing- working too hard at it, breathing too quickly and not keeping his O2 sats up. He was really junky all day until the RT last night managed to get up massive amounts of blood and secretions while deep suctioning. I was horrified at the volume that came out of my poor little man, but we hope that will help him to breathe a little easier. I think part of the problem is pain as well... He doesn't take deep breaths when it hurts- who would?- and the shallow, rapid breaths don't help him out.

His pain level seems to be better today after being too high yesterday. He just seemed so sad and pathetic all day, and the spark that he's always had in his eyes was gone. He's gotten a little bit of that spark back this morning, so I hope that means he feels a tiny bit better. We've taken him off of one of his pain meds because it may link to kidney damage, but he still has his morphine if he needs it.

Our new issue is with his urine output, or lack of. He's really positive on his fluids, which we know in Holden's world is a very bad thing. He's pretty swollen, and the extra fluid just compounds his respiratory problems. We've tried upping his diuretics, but he hasn't responded like we wanted. We are upping them again today and hoping that he cooperates. If he doesn't pick up the pace today, they'll put a catheter in tonight or tomorrow. So once again, I'm going to ask you all to please pray for pee. :)

After his stellar first day post-op, I was really hoping that he would sail through this recovery and surprise us all. Unfortunately, it's going to take him a little while longer. I am keeping my faith that he will recover, be better than new, and forgive us for putting him through all of this again. I pray that he's too young to remember all of this in the future, and I hope he understands why it had to be done if he does remember. I truly hope he will forgive us for the many times we've had to hold his tiny body down and whisper, "It will be okay," when clearly nothing is okay. I just have to keep reminding myself that without going through this Holden will not live. It's just that black and white. He's a little young to grasp that concept though.

Today is going to be a better day, I have faith in that. Today we are thinking big, praying big, thanking big. The fact that he's made it this far is a true testament to the strength of his will, and to the many doctors, surgeons and nurses who have worked day and night to save him. So here's to gifted doctors, steady hands and living in a time when we are blessed with brilliant medicine. No matter how many setbacks we have, we are still incredibly blessed.

Thank you again- so much- for the continued prayers and encouragement. I have gotten so many sweet, uplifting messages from people we know and people we don't, and I appreciate every one of them. We live among such supportive, genuinely kind people whose positive attitudes and cheerleading spirits have given us a strength that is hard to explain. I couldn't be more grateful.