Not just a pit stop.....

Well friends,
Here we are again, puzzled. What started out as an electrolyte issue has again grown into something more. (What's new?) In the last couple days Joshua has been showing signs of infection. Either a cold or flu or something along those lines. He has spiked a fever of over 102, has green mucous in his throat and nose and throat diarrhea. They have tested him for RSV and Influenza A and both came back negative. They are doing a more extensive viral panel today. They is also concern that it may be something bronchial. They are watching him closely.
The worst of it is the concern of why his electrolytes get so out of whack with just minor changes. He should be so close to going home and shouldn't be so sensitive to med adjustments. So, it seems that there is more to the picture. This week he will have another echo. Next week he will probably have another cath. Depending on how he is feeling. We can't put him under if he is not feeling well unless it is an emergency. Coming off the ventilator if he is ill will be next to impossible with him. He is certainly headed for a cath but now remains a matter of when. Obviously the sooner the better. The main reason behind this investigation so to speak is the fact that Joshua's heart is not growing and it should be. His graft will grow with him. Dr Law said that there are 'kids' that had heart transplants 20 years ago and now their hearts are of adult size. We all know that Joshua has some interesting plumbing. Still having the the left SVC is creating some issues. He has basically an extra flow of blood. Instead of just making the loop through his heart like it should it is another little loop that it is following. It is basically a waste of resources. We need that blood to be cycling through his heart. His heart function has never been perfect. He has the same diastolic dysfunction that he has had. Drugs aren't seeming to make it much better. So after the echo and the cath they will get together and determine the future plan for Joshua. It is looking probable that he may need to undergo another open heart surgery. There is concern that there is some kind of scar tissue around his heart, probably from the seratia infection after transplant, that is prohibiting his heart from growing. Dr Law explained it along the lines of a sack around his heart. They will go in and see if they can remove it.
So, in a nutshell we are not as close to going home as we were last week. After the events of this week on the home front I am ok with that. The inspector came out to the house and it is worse that we had thought. The hot water has broken in the time from when I was home last at Thanksgiving and has caused even more water damage to my house. My dad, father-in-law and my uncle are working on getting that situation remedied but there is still the issue of the water damage to our home. I am waiting to hear what the insurance company says. My gut tells me that they will probably total my home and call it a complete loss. Please pray that if they do that it is enough to pay off the existing mortgage so I won't have to make a house payment on a house I don't have. I don't know exactly what we are going to do if this happens. Being that I no longer have a job I will not be able to secure financing on a new home. I know that God has a plan for us and I know that I need to be patient and just see what it is.
Please keep Joshua in your prayers. Looks like his road will be taking a little unexpected detour.
Love and blessings,
Leah