Discharged

Daddy:

Today was the day, the last of Luisito's tubes were disconnected and we were set free.  Well maybe not quite free, we were released to the Ronald McDonald House (RMH) just across the street.  This event is definitely a milestone for me.  It is the first step towards some measure of normalcy in our lives: admittedly it is not a huge step but it is forward progress. Still no results from the bone marrow core.

Last night was not a good night.  Luisito woke up almost every hour, most times it was because he had saturated his diaper and his sheets, so I changed them.  At 3:30 AM he woke up with a coughing fit.  It wasn't as bad as the initial fits that brought us to emergency for the first time but it was close enough to stir up some recent memories.  I tried to calm him down but I had no success so I called the nurse.  Eventually his breathing was checked, his lungs were deemed clear, but the nurses could not give him anything for his cough: he would just have to endure the coughing until it passed.  I sat by his beside and every time I thought it was safe to go to my own bed the coughing would start up again.

At around 4:30 he was still wide awake and demanded that I provide some pretzels or "goldfish crackers".  After learning that we did not have any the screaming started.  I eventually convinced him to eat a bagel with scream cheese, as he calls it, and soon the noise stopped.  Not even 10 minutes go by after he finishes eating when another coughing fit starts.  It was a bad one, bad enough to make him vomit his recent meal.  I paged the nurse again only to get the same response, "we cannot give him anything for a cough".  After I cleaned Luisito and managed to calm him down he at last fell asleep at 5:30 AM.  I eventually went back to my bed but I found my own rest elusive: the events were simply too similar to get any real sleep and I was dreading that the coughing fits would return.  I really hated being powerless to help my son, especially when he looked to me for comfort.

As I lay there trying to sleep my mind wanders and I entertain every thought no matter how ridiculous.  Why is my son coughing like this?  Does he have a cold?  The nurses do not think he has a cold: he lacks all the symptoms of a cold, no runny nose, no fever, no sore throat.  Is the tumour back?  Is the chemotherapy somehow to blame?  I asked Luisito about his cough but I could not get a reliable answer out of him because his story kept changing.  The night's events are catching up with me and sleep finally takes hold.  Answers will have to wait until tomorrow.  Time passes and I hear him coughing again but this time it does not sound as bad as it did earlier so I let him ride it out on his own.  He does and soon he is back asleep and so am I but it is not restful.


Jen arrives into the room and I fill her in on the night's events.  I try get more rest and I think I do.  I wake up later and I can hear Luisito coughing, when he stops Julien starts to cry.  This musical number continues until our nurse practitioner arrives.  I recognize her voice through the haze, it reminds me of a childhood friend's mother, and my morning stupor disappears.  I inform her of the night's events and she proceeds to examine Luisito: her conclusions are the same, she does not think he has a cold but she cannot rule it out for sure.  I press her for some sort of explanation, Luisito has had this cough for 3 days now and it has only gotten worse.  She tells me something about post nasal drip and that maybe he does have a cold, after all, we are in a hospital.  I throttle back and I start to give more credence to the idea that I am just being paranoid.  I also realize that it is 11 AM and I have slept through the entire morning.

We are also told that we are being released today but before that can happen we need to pick up Luisito's medicines and get a tour of the outpatient facilities.  Jen goes to pick up lunch for the gang, she also picks up the medicines and after lunch we are given a tour of the outpatient facilities.  It is very informative and it should help make our future visits here less confusing.  Operations at this hospital are very well run.

After the tour the fun part begins, packing and moving.  During these past weeks we have been showered by the generosity of friends and family. We used the baby stroller like a donkey and loaded it up with all the generosity and after 3 trips and odd stares from some people we were relocated.  It was a tight squeeze.  The rooms here are nice and for 10 bucks a night there is nothing to complain about.  This charity is really wonderful and if you are in the mood for some fast food you should give Ronald some of your business.

When I finally get a chance to assess my new accommodations I start to chuckle inside.  I realize that I will be roommates with my mother-in-law for the next 2 weeks.  Boy has my life changed!  In all seriousness though, Kathleen, your help in these past weeks have been greatly appreciated and if I have not yet thanked you I thank you now.

We were visited by some good friends today who brought their son with them so Luisito could have a playmate.  I got to watch my son play with a friend and it brought much needed joy to my heart.

So a day that started early and poorly turned out to end in an pretty good way.  He still has his cough but it does not seem as bad as it did.  His "roid rage" is still present but I think it has plateaued or at least, I am hopeful that it has!

One day at time.  What else can one do?