Homeward Bound

Daylight came, finally. Last night was long for me but peaceful for Lane. My mind kept going to dark and scary places with the whole low platelet issue. The blood was drawn, the numbers came back and they were up slightly. Thank you God! Dr. Reiderer came in (again with the computer) and said that he was fine with us going home. Still couldn't really explain it but most importantly he didn't think it was any kind of cancer. No need for anymore tests this time. We are to keep a log of Lane's temp for a week or so. I asked at what temp to bring him back and he said to base it on Lane's appearance as well as temp. Low temp, looks good, stay and try to warm him. Low temp, looks bad, bring him in. This goes back to the 1st thing Dr. Walsh taught us in the NICU: watch the baby, not the numbers. Numbers have their place and tell us things we do need to know but so many times people get caught up in them that they forget to look at child. Lane's numbers are different but it's just the way he is. Praise God that Dr. Reiderer understands this or else we could be here indefinitely. We are back on the 4th floor after all ( they converted Pod A of the NICU to patient rooms).

So for now I'll eat my last box of Milk Duds, wait on my discharge papers and reflect on this go 'round. Decent nurses, great care partners and two of the best attending pediatricians we've had, the absolute greatest IV therapist ever ( a lady named Mercedes who got Lane on the very 1st try.) We WILL be requesting her again. A visit from Dr. Morgan, late one evening (more like 8:00 at night) just to see what was up, a long overdue visit from Sarah and lots of time to think back on the past 4 1/2 years. SO many memories on this floor. It's where our journey began in a sense. The place where my life changed so drastically so long ago. It was both strange and familiar to be back there. Passing by the 2 rooms we had during our Pod A stay was bittersweet. This whole journey is full of immense joy and unbelievable sadness, laughter and tears, darkness and light. but it's also brought many blessings and more than a few miracles. It's our life and I will cherish every moment.

Now What?

I thought I was through with surprises. Lane's done pretty good since the tummy perf in July. He had pneumonia in Feb. and we did 4 days in ICU but we've had pneumonia before. His temp was 93 and his sats were low which was different for Lane but still nothing too bad. Saturday he was so cold I couldn't even get his temp to register. 3 thermometers and 5 tries later I gave up and just concentrated on getting him warm. The weekend dragged by and by Monday afternoon his temp was 91.8. Well, we know where we're going. Our "diagnosis" of pneumonia wound up being wrong. They thought maybe his thyroid was causing the trouble and I still think it may be playing a part in some of the issues he has with heart rate, blood pressure, lethargy, temp. etc. For whatever reason this kind of got passed over. I couldn't understand why he could regulate his temp in the past and now all of a sudden he couldn't. A neurologist that had never seen Lane said that it could be his brain worsening. That thought was so sad to me. I accepted his brain damage long ago and though I know it will never get better I guess it never occured to me that it could get worse. How much worse, how soon and what happens then? I feared I already knew the answers to these questions. Did all those seizures cause more damage? They must have. They were so awful for so long. Now that they're not a daily part of our lives I don't worry constantly about what the long term effects are. I spent several hours trying to take all this in. Then Dr. Reiderer comes back and says that Dr. Sharpe (Lane's neurologist) didn't feel that the temperature issue had anything to do with his brain. Good, so I'm happy again. Now he wants more blood work. Still chasing that elusive infection that can cause such low temps in kids like Lane. Blood's drawn, test is done, time for another surprise. You know when the doc brings the computer in with him it can't be good. Apparently Lane's platelet count is low, very low and has been since the beginning. It can bring itself up and then drop again. Still, you think infection but since nothing's showing up you have to wonder what's causing it. Is it a blood disorder, or merely a "Lane Thing". We don't know yet. We do know that it earned us another night in here and another test in the morning. If the number is still low or has dropped even more and there is still no sign of infection from the other 2 tests that are pending, then an oncologist/hematologist may have to look at it. Yeah, that's one specialist I was hoping to avoid. Maybe we still can. This doc understands that Lane is different and that lots of things just can't be explained in our miracle mystery baby. It's been a long day and the night isn't going any faster. All I can do is wait and see what the morning brings. Hopefully something I want to hear. I guess life with Lane will always be full of surprises.