Update 2

Oliver is no longer in acute respiratory distress! His nail beds and lips aren't purple any longer and his breathing has almost normalized. His lungs are still crackly, but that we expected, the antibiotic usually takes the full 5 days to help him get over that. At least his airsacs are opening up to let oxygen in! His fever has held steady just below 100* with the help of tylenol and motrin.

He's not out of the woods yet, a lot can happen when you're fighting a repeat double lung infection, but this is all good news.

update

Ollie slept through the night from midnight-7:30. We listened to him breathing all night and checked him hourly. This morning his fever was 103*, his body is really fighting hard against this infection. Last night we did postural drainage twice. This involves laying him diagonally on a wedge with his head lower than his feet. Then I did percussive lung therapy and Chris was down at his mouth with the suction machine to suck up any guck/fluid that came up. We got a lot of really gross stuff out, and this morning his breathing isn't nearly as gurgly as yesterday morning! We won't know what his lower respiratory (lungs) sounds like yet until the nurse gets here at 10. He hasn't had any fluids since yesterday(except for the 10ml water flushes we use to push his medicines in through his g-tube) so that's a little concerning, especially with the fever. We'll see if we can use the pump on an extremely slow rate to get some water in him. Right now he's sitting on my lap without the oxygen machine and we're trying to bring his fever down.

Rough Shape

Oliver woke up with a fever of 102* and extremely rapid breathing. We knew instantly that something was seriously wrong. Within the hour our hospice nurse and day nurse were at the house. His gtube site was leaking black/yellow indicating bile and a possible obstructed bowel. It was very difficult for them to assess his lungs because his breathing was so gurgly in his upper airway. His respirations/minute were very high, his chest was retracting and he was clearly in distress.

The nurses were fairly certain they could hear lung crackles despite his gurgly breathing and called his Dr to see if we should get a script for an antibiotic like we usually do for lung crackles. The Dr was alarmed at his respiration rate, chest retractions, and the fact that Tylenol and Motrin hadn't made his fever come down. She suggested that we go to the ER. We talked about it, we really want to keep him home. Most of the interventions that could be done at the hospital and not at home, are interventions we aren't willing to do. A terminally ill three year old doesn't belong on life support in a cold hospital room, he belongs at home in his Mommy and Daddy's arms.

So we said no, and asked what we could do at home. We've been alternating tylenol/motrin and his fever is down to 99. With a suppository we were able to get him to move his bowels, and so we got 3oz of pediasure into his belly to keep him hydrated. But all day long those measly 3oz have been coming up his esophagus and out his nose and mouth. He's silently aspirating right before our eyes. No coughing, no vomiting, just formula silently coming up and out, and also going back down into his belly or lungs, likely both. There is nothing we can do to stop it. Right now he's in very rough shape. His morphine dosage was recently increased, and it took 3 of those increased doses this morning to bring his respirations down to where he was comfortable. We've stopped his feedings and he's had 4 breathing treatments, lots of medicine and has slept in our arms all day. He appears more comfortable, which is good, but his breathing is weak, his chest is rattly and we just hope he can fight through this.

One Year Ago Today

One year ago today we were driving home from CCMC when our doctor called to give us the results of Oliver's MRI. That moment is burned in our memory. It was the moment that we learned Ollie's time with us would be limited. We learned that we would not be able to see his high school graduation or watch him fall in love and get married. That moment forever changed our lives and has left us with a sadness that I doubt we will ever overcome.

So much has changed since then. Each day flys by and seems to last forever at the same time. We've tried to pack as much life as we can into the time we have with Ollie. We've tried to make up for a short life by making it a full life. As time passes we will continue not to dwell in the past, thinking of what Ollie has lost, nor to worry about the impending future, but to live in the now and try to overcome the sadness and make every moment count.

This date also makes us think again of all the love and support that we've received from family, friends, and strangers over the past year. From the bottom of our hearts, thank you. We could not have made it this far without your love and support.

Here are a few pictures of Ollie from April of last year. Today we will give him extra hugs and kisses.

Ollie has been fighting pneumonia all week, but we're hoping to start to hear an improvement in his lungs by today. Stay strong Ollie!

Neurologist Appointment

Oliver had an appointment this morning with his neurologist. Not much has changed really since we saw him 2 months ago, which is good, but we did discuss the urine retention issue. He has by the way had many wet diapers the past two days since we changed the Robinul to 2x/day instead of 3x. No one really knows exactly what's causing it, so it's all going to be trial and error. He advised we drop the Robinul and try the scopolamine patch. Which is a small patch that we'd stick behind Oliver's ear to help with secretions. According to the neurologist it has less side effects like the urine retention and constipation. We're dropping off the script now and will start it right away. Ollie has a busy day today, he had that appointment at 11, physical therapy at 1, and a visit from his hospice nurse at 3. Hopefully we can fit in some outside time today because it's beautiful out!
Here he is falling asleep at his appointment. :) Doesn't he look handsome in blue?

For anyone who is wondering, Ollie peed at 2pm yesterday (after 30 hrs). He didn't need a catheter, but if he hadn't gone by hour 36 we were going to have to use one. We kept telling him he'd better go!

We're cutting back on the Robinul a little bit at a time to see if we can find a balance with clear airways and him still being able to pee. Of course this is if the Robinul is the culprit in the first place, I guess we'll see.

Ok, off to school! Here he is going down the with his class on Tuesday.

Pee Problems

Recently Oliver, who just turned 3, has been having issues with urine retention. He'll go about 24 hrs without peeing and then usually we can get him to go by putting him in a warm bath. Some days he pees a few times with no issue. This morning our little bath trick didn't work and we're bringing him in to see his pediatrician to assess him and whether he needs a catheter or not.

He's been on a medicine called Robinul for about a month to help with his drooling. He kept aspirating his drool and getting pneumonia. Since starting the Robinul his lungs have stayed perfectly clear, but one of the side effects of this medicine is urinary retention and this peeing issue only began a few weeks ago so we're not sure if it's the Robinul or disease progression. Damage to the autonomic nervous system can result in a "neurogenic bladder" where his brain doesn't communicate to the bladder that it's time to "let go". He just turned 3, we thought we'd have more time before this began to happen from a neurologic cause. But maybe we were wrong. Some children with MLD never need catheters and some need them daily. We'll see what the Dr says. We'll probably drop the Robinul for awhile to see if it improves, I hope it does, but it's a shame because it's worked so well with preventing the aspiration pneumonia. We'll see.

Come join Oliver at the Movies!

The Bank Street Theater is in New Milford, CT. Come join us for a great morning!