never quite as planned

Well, that pretty much sums up the last four months doesn't it!?!

There have been worse days, but today could have gone better. I was told that the immunologist was going to meet with us today to discuss findings for Malachi and his immune system. However, no one could give me a definitive time that he would be able to meet with us. I called the hospital this morning early to once again ask if anyone had a time that I could expect to meet with the doctor. I dropped Emma of with Grandma and headed to the hospital only to find a sleeping baby and to play the waiting game. The nurse practitioner was giving a quick report on the patients to the new attending physician. Again, she told the physician about the fact that I was there to meet with immunology. Again, I had incorrectly assumed that someone had paged the doc to let him know I was waiting.

Malachi woke up, briefly--maybe 20 minutes or so...

but then quickly fell back to sleep. More waiting. I did get a chance to speak with cardiology. A familiar doctor this week (granted, we're familiar with the entire cardiology department at this point!) and a fellow that I get along with well who she seems to tell me like it is, which I appreciate. Malachi's primary cardiologist and the cardiologist on this week aren't too keen on sending kids home on monitors, but in Malachi's case it is important to be aware as soon as possible when he is in a sustained period of SVT as he does not usually respond to the "usual" treatments.

Cardiology left. I waited.

The social worker that helps us get everything settled and ready to go as we work on discharge and getting Malachi home, came to give us some not so good news. She had faxed in the paperwork for Malachi's medicaid disability. She later found out that with our income we would definitely be under the eligibility guidelines, BUT because we have been smart with what little money we have (savings, retirement accounts, life insurance policies, etc.) our assets would make it so that we are not eligible. Not exactly the news that I needed to hear today. She was unable to get ahold of our caseworker and left with no answers. It is important that they cancel that application so as to not mess up the coverage he currently has. There is such a things as medicaid waiver which would allow us the extra help we need financially for Malachi and our income/assets would be completely disregarded. the only problem with that is that the state of Indiana has put a hold on all waiver applicants until like July 1. For now we will wait and see. The biggest thing about all of this being an issue in the near-present is how it will affect private duty nursing care (our in-home nursing help). We are obviously willing to take as much help as we can get at this point. We were thinking we would get 12 hrs of care 7 days a week. Now we are praying to get 8 hours and at least 5 days a week. Please pray that God will give us the amount of help we need to make it through until Malachi is in a more "stable" condition.

After all of this talking with our social worker, I cried. She just wants to help, but we just don't have the answers that we are looking for at this point. I also told her I was upset because I had been waiting here all day for the doctor, that I'm sicking of running on hospital time where our schedules don't really matter. She immediately went to the nurses station to see if he had even been paged. He hadn't. She didn't wait for our nurse to do it, she did it herself. She found a new friend, that's for sure. I didn't fully realize until today how blessed we were to have the nurses and staff that we had on a daily basis in the NICU. Every day they went out of their way for the Sharbaugh family. So much so, that I thought it was just a part of their job description. Now, we know that they were just going above and beyond for a cute little boy born with a crazy-complex diagnosis and parents who simply want the best for him. Thank you, Riley NICU.

Well, the immunologist finally called back. He apparently was unaware that we were supposed to be meeting today. He was not even at the hospital, but could make it by 5:00. I was frustrated. I kissed Malachi goodbye and left in tears. (I hate walking through the hospital all teary-eyed and red-faced...not a good look for me). To top it off, I drove the wrong way from the hospital when I left. I went towards our house instead of towards John's parents. Then I practically gave myself a concussion from accidentally hitting my head on a the car door as I was getting ready to leave to head home. My head still hurts!

John called around 6:00 or so on his way home from the hospital to let me know what he found out regarding Malachi's immune system. According to the heart surgeon, Malachi's thymus was missing. The thymus is a very crucial organ which produced T-cells, a major line of defense when fighting viruses. The immunologist said that even having 1/10 of a thymus is better than nothing, and that from the results of the bloodwork that was drawn, Malachi must have at least SOMETHING! His immune system is very suppressed and/or deficient, but there is something hard at work in there. If I understand correctly, maybe by the age of 6 he will have produced enough T-cells to maybe "catch up" with his peers. Obviously, still hard to tell at this point.

At least the day ended on a good note. Tomorrow will be a day mostly spent at the hospital meeting with doctors and beginning our vent training. One step closer to home... One step closer to home...

Every good post is better with a picture or two.