FREEDOM

We are all back home now. Mo is tired and been asleep since before we even pulled up. Mistress and he have both been taking a nap. After all the hospital food, she demanded steaks and salad for dinner. Like all returns from the hospital, I bought a bottle of champagne.

You would think I am happy and yet somehow I am a bit hollow inside. Melancholy. The last few weeks have been extremely hard on the whole family; each with our own personal, emotional, intellectual and physical struggles. As we were driving home I wished we could all just go away somewhere for a few days and hide. Disneyland. Mexico. Someplace. Anyplace.

Last night after a full day of being at the hospital I came home falling asleep at the wheel. I wanted nothing more than to have a beer, watch a little tv and hit the sack early. Instead I rode my trainer for four hours and celebrated my sticktoitiveness with a salad. I splurged and used light ranch instead of my usual vinaigrette.

The best I can do in all this is try to put Mo back on some sort of routine and get him ready for school again in a couple of days, he still needs some time to recover. I'll get a massage for Mistress to work the kinks out from lousy chairs, cramped quarters and poor posture. As for myself...I skipped an 18 mile run today. A rare day off before ironman. I also bought a book. I will find something better once they have returned to normal and all this is once again just another trip to the hospital for Mo and not the latest testament to a son with severe challenges to his health.

Thank you all of you who gave us calls and emails wishing a speedy recovery. They obviously did the trick.

Mo Update

Mo is steadily improving under hospital care. He will remain here through mid-day Sunday at least. Which means so will Mistress. She rarely leaves his side when he's in the hospital.

The ears look good, surgical areas are coming along and hydration is up. Still very little food. A couple hundred calories of apple juice and gatorade. Still it's more than he's had in 8 days.

thanks for letting me prattle.

Mo Phine

I gotta give the boy credit. It took a mom, a grandma and two large nurses to hold him down and put that IV in. Where was dad? Dad was pacing in the hallway squeezing a stress ball for ten minutes while his son screamed like a banshee behind the curtain.

This photo is after the morphine was put into his system. He was pretty punchy and had Mistress and grandma dabbing tears of joy and laughter at his nonsensical comments and the return of his long lost sense of humor.

Mighty Mo is in pretty serious shape. He has lost ten pounds or 20% of his body weight. As I mentioned in earlier posts he has been throwing up fresh blood since the surgery a week ago, most recently at the decision point of going to the ER. He has taken in less than 50 calories in the last eight days. He was drinking water during the week but we.re not surprised when the doctor said he was in a seriously dehydrated condition. The picture doesn't show it but he skin was very yellow. His throat is still a bit green from the surgery and lab results are being done to see what his blood and cultures looked like. Mistress was finally glad to speak with a doctor that didn't make her feel like an idiot. I guess today with the way he was acting we felt a turn had been made. Probably a turn to manic madness and not the general well being we were expecting.

Mighty Mo has been admitted for the next day at least. Mistress is staying the night with him and I am at home. I have a rather.....uncomfortable relationship with hospitals, as you might imagine and it drives me absolutely batty being in one either as the patient or the parent/spouse. I will go back in the morning and do what I can.

I have been reading Mo and Mistress the emails that come in, he takes some comfort in them, Mistress more so. I am reminded that this is one of those times, yet again, when people are amazed at how sick Mo is when all they see is how happy he is and how he immediately pulls people towards him. When he just a baby and we were dealing with all his issues, we thought it was us, that we were bad parents. That we willed or wanted all these 'auto-immune', colitis symptoms to be true, when visually he had so much gravitas. But once the visual acuity tests were done and the true testing commenced, we were validated. That and the one foot thick medical file he has at his primary doctors office.

Mo is the pride and joy of my life. He is stronger than me. When I see his condition on a daily and hourly basis and feel sorry for him, it is him that lifts me up. Those that have been around him often or met him once, remember him long afterwards. He pulls people to him like none other I have seen. He is a true light in this world. Today morphine made him normal. Soon enough the energy will be his alone again.

ER

Mo woke up from a nap screaming and vomiting blood. It was not pretty. We are sitting in the waiting area in the ER to get him admitted. Us parents are calm and its almost like going to a relatives house instead of emergancy room. We have been here a lot. Looks like thats going to continue....

Mo No Go

We have pushed past the roughest parts and Mo is starting to come around, so no hospital as it stands. The coughing is gone, the sniffer is working, the ears are getting better. Still not eating after 8 days but he will crack on that soon enough. He says his throat hurts whenever he tries to eat, but at this point based on his activity level, this could be a manipulative 4 year old ploy to get attention. Who knows?

So no more, "You gotta eat," or "Do you want to eat this?" We are priming the house for a food rich environment. A beautiful smelling pizza for dinner tonight will flood the home with flavorful scents to grumble the belly. We are going to have a quarter of it with very little sauce and toppings so if he does eat his stomach won't be destroyed. Desert will be fudge brownies. Again if he does eat it will be a very small amount. Boxes of apple juice are already placed around the house for access and whatever snacking is being done is done right in front of him without offering a bite.

This sucks that he is in rough shape. Thankfully the amount of water he has consumed has not deteriorated him any more than he is. He is much smaller now having lost by our estimation about ten pounds or 20% of his body weight. The baby fat and chunk he got from all the drugs has for the most part been erased. His shoulders and waist and noticeably slimmer. The chubby, cherub face is still there, just waiting for the smile to return.

But... every now and then, you get what seems to be sincere moaning and a cry fest of not feeling well and true physical distress. Without food or any pain medication this is expected. I'd expect it from me. I am sure the weakness from no food and the ear infections and whatever physical recovery he still has from his operations is not helping his normally cheerful mood.

SNAFU

Mistress stayed home with Mo today 'cause he has been having such a rough go of it, especially mornings. He did take some meds today, that makes 3 of 10 he's taken since the operation.

Yesterday when he flipped out and threw up (bloody), just at the insistence he take some med's Mistress called for an appointment today. She called me while leaving the the doctors office. He has lost 12% of his body weight, 6 pounds total and he has a double ear infection.

The next 24 hours are critical. He needs to eat something, take all his med's, and drink 40 oz of water or most likely he will be admitted after the tomorrow consult. I suppose he should have gone in today, but we have hope it will turn around, plus it's and extra 24 hours to prevent another grand of bills as he will most likely be in for a couple days.

There is no joy in writing this and not sure how to end it. But its not an end, its a situation that is normal for us, Mo has conditions that make him medically different than other kids. You'd normally never know it though.

homey

I've been able to work from home the last two days to care for Mo and boy has he needed it. Since the operation Friday he's only eaten a couple hundred calories. Its starting to show around his belly. He understands about hydration and thankfully been drinking well, just nothing with substance.

He is complaining that his other ear hurts now. This is what happens when you have no immune system, after a surgery you can get sick easy and his developed a double ear infection. He is supposed to start on the anti-biotic liquid again today but the pain meds he took have made him think all of them will hurt and sting so he has refused everything. I didn't force the issue during the day but when Mistress got home she got a bit more insistant. He started hyperventalating and throwing up again, still with the blood in it. Needless to say it looks like another doctor appointment Wednesday for shots. He is not a big fan of that either. Nor am I for that matter, the co-pays are killing me.

Luckily I have maintained some sanity with training. Right now I'm upstairs on the trainer for 2.5 hours (god bless blackberry phones). Last night swam over a mile in cold open water, but open water nevertheless.

Ultimately Mo will be fine but this has certainly been a trying time for us all. A bright light today is that his four headed dragon toy came today. The gift he chose before the operation.