Home Sweet Home

Discharge

Well today's x-ray looked perfect! They are planning to discharge us today. We are waiting on another prescription. Although there is a risk that his effusion could come back. So on Tuesday we will be at Helen Devos in Grand Rapids having some tests done to make sure everything looks good. Then on Friday we will meet with the cardiologist. Thanks for all your support and prayers. 

Almost 3 weeks

On Monday we will hit the 3 week mark. Things are going good. We've been close to getting discharged all week. Sometimes I wish they would not even tell us tomorrow because we get our hopes up. Dan really is getting antsy. I am doing ok, I just miss home. Ally is her happy self. She really looks forward to the sibling group every day. Our doctor estimated Mon for discharge, but I am not getting my hopes up like before. Ben has been asking to go on walks a lot. We have been talking with another boy named Colton parents. He was here the same time as we were the first time. Colton has HLHS and cerebral palsey. Just trying to hang in there. I may get away from the hospital today with Ally.

Chest x-ray

Everything has looked great to go home until Ben's x-ray this morning. The effusion is still bad enough that we cannot come home. We were starting to pack up and are bummed. Although once again I would rather stay here than need to come back right away. We may be here for a few more days. Thanks for checking in.

Ben is doing well!

Today Ben has been fussy, but doing fine. His effusion is looking better again. They still are talking Fri-Sat for discharge. Although we will need to follow up with Dr Lacina right away to make sure things are on track. We are all doing ok and I am getting nervous about going home, just because he will be on 7 medications. Of which 3 are critical to him staying on track and need to be given in a very timely fashion 3-4 times a day. Today I plan to take Ally to the gym to get some of her energy burnt off. Have a great day.

Effusion improvement

Today Ben's chest x-ray looks better today. The drugs seem to be working for Ben. We will need to continue to monitor this situation. If it stays on the right track we will be heading home on Friday or Saturday. We are completely off oxygen and just doing spot checks. He has lost the ng tube as well. He seems to do worse with it in than without it. Hopefully he will eat good again today so they don't us make us put it back in. 

There is 13 year old boy here with HLHS that is waiting for a new heart. His name is Devon and has been here since Dec when his heart started failing. He has befriended Ben and brought him a stuffed doggie. We have been visiting him. Ally made him some art for his room. He is such a strong and beautiful person. Please keep him in your prayers as well. Devon is from the Rockford area. Thanks and have a good day.

Chest x-ray results

Just got news the chest x-ray was not good to go home. We will not be coming home tomorrow. There is fluid around his right lung called a effusion. We need to try and get it out with drugs. Worse case scenario we will need to put a chest tube back in. Kinda bummed, but glad they caught it before we got into trouble. Ben is starting to eat much much better at least. Hopefully we will lose the ng tube soon. Gotta run.