Wednesday, January 11, 2006


I am bringing this over from Aidan's old caringbridge site. As you might guess, Aidan's relatives read Caringbridge so I wrote this in a cheerful way so as to reassure them.
January 3rd
A few days after Christmas our whole family came down with some sort of respiratory virus. We thought it was Influenza but apparently it wasn't (more on that later). Anyway, one of us after another succumbed to a moderately high temp, general lassitude and aching, and then on to sniffles and coughing.

Aidan seemed to have one of the milder doses in the family range but on New Years' Eve (of course) he started getting quieter and more withdrawn. I brought out his pulse oximeter for the first time in about 2 years, to measure his Oxygen Sats, and he was too low -- in the mid to upper-80's. That is enough to account for low energy and irritability, which is what he was displaying. He was also running a temperature for the first time during this virus.

We put him on the oxygen we had from his earlier illnesses. A liter kept him in the upper-90 range for the night, but in the morning he still seemed too quiet and was breathing with some effort. We ended up calling the doctor who advised us to take him into the emergency room for a chest X-ray.

To make a long story short, the X ray showed something in his left lung and so they decided to consider it a mild pneumonia and admit him to the hospital. They did a blood culture and started him on antibiotics.

The ER nurse and phlebotomist were able to get an IV started with one poke AND draw blood, which in Aidan's history is simply wonderful good fortune. He coped beautifully, requesting a sticker, and saying, "I am being brave!" which made the nurse almost cry. Actually, he cashed out in stickers, since the X ray technician gave him a few too.

He was discharged about noon today. The culture was negative so apparently his pneumonia is viral rather than bacterial, but they are keeping him on oral antibiotics for a few days just to make sure, I guess. I, Aidan's mom, stayed with him for the 48 hours while Kevin, his dad, took 3 year old Paddy home to the other sick kids. There was a significant ice storm and several power outages to make their life adventurous while we were gone. I'm not sure who had it worse, but it is good to be reunited with a clear sky over our heads again. That was a long 48 hours for everyone, especially since I was sick and considered in isolation too, so I couldn't get to the cafeteria. They brought me meals and some coffee, but not enough of the latter!

Last Monday Aidan's MIckey G Tube came out and we had to run to the GI clinic to get a new one on Tuesday. So this past week has been quite medically eventful all things considered. I hope that is our share of hospitalizations for 2006. Time will tell!

January 8th

It's been a long time since Aidan has had two medical updates in a week's time! (see journal history for earlier entries).

Friday afternoon Aidan had a mild seizure. I think it was what they call a "partial seizure". He did not lose consciousness or become complete unresponsive. Rather, he started staggering around the living room, talking incoherently, and then leaned against the couch, gagging and retching. I helped him get on and he told me "I'm going to sleep" but the focus of his eyes started to drift upwards and to the left, which is what has happened in former seizures.

I brought him upstairs, trying to talk to him and keep him in the picture. He was shaking but not jerking the way he has in former seizures. Upstairs, he started talking and acting more clearly, and then fell asleep immediately and deeply, still with a dirty diaper (he had become incontinent during the seizure).

I called the pharmacist and he said that one of Aidan's antibiotics can sometimes cause seizures. So I called the doctor, the "hospitalist" at the hospital where Aidan had stayed. He thought under the circumstances, since the antibiotics were mostly a precaution anyway, that we should discontinue them.

Since then Aidan has been acting great. He ran a low temperature that night, but not since then. He still has a cold -- but we all do. His breathing has been great. In fact, Brendan's "sats" are lower than Aidan's -- Brendan's are hanging out in the low to mid 90's, and Aidan's are in the mid- to upper -90's -- great considering that we are at over a mile-high altitude.

Today Aidan is coming down with us to take his oldest brother Liam to the train station to return to college. We are not looking forward to that!

January 10th

Aidan's had quite a couple of weeks medically. Most recently he had a seizure while we were in town taking his oldest brother Liam to the Amtrak station to return to college. The seizure started out as a partial one, like the one last Friday (see Journal History), but then became a full-blown one. We drove him to the Children's Hospital, where his Daddy brought him into the ER at a run and called for immediate medical attention. He was taken straight back to a table and given Oxygen and an IV started for Ativan (a sedative to halt the seizure).

Finally the seizure stopped, but by that time Aidan had stopped breathing on his own... he was not "moving air" -- as they said -- his chest was not rising and falling. The respiratory technician was giving him oxygen and breathing for him through the bag, but they had to decide whether to put him on a respirator or not. While trying to decide, they tried to draw blood from the artery, and this kicked him back into gear, almost literally, since he struggled and kicked and then started breathing again on his own.

After this, he slept for quite a long time due to the seizure and the sedative. He stayed in the ER overnight for observation and because the ICU and general ward were both full. Then he was moved to a general care unit the next day, and was discharged today.

He seems fine -- still recovering from the flu, but otherwise his normal self.

We are to see his neurologist in the next month or two, but they have not put him on a seizure med -- they left us to decide that, and we thought it made more sense to wait and see. His seizures are certainly scary, but they have been infrequent, and under normal circumstances we would have his seizure meds with us and be able to give them to him. If he starts seizing more frequently, the picture might look a bit differently both to us and to the neurologist.

His occupational therapist says that also, it might be a good idea to have some cranio-sacral therapy done when he has been ill since the seizures tend to happen when he is sick, and the cranio-sacral work has had some beneficial results with some people with a seizure disorder.

February 5

It's Sunday and I, Aidan's mom, have some free time on my hands since everyone else is watching the Superbowl! So I thought I would write a "good" update, since I think Aidan's grandma is absolutely right that the good times are important to write about too.

Aidan has been doing very well since his pneumonia and seizure. He had a cold last week and ran a temperature, but was over it quickly.

He is learning his alphabet and knows almost all the letters. We are starting to work on words now. He can recognize his name, "Aidan", and also "Pikachu" (his favorite Pokemon)

His favorite thing to do besides going to Grandma's house is going outside to play in the snow. We still have quite a lot in our front yard, even though it's been in the 50's. He tried sledding last week -- loved it!

He just helped me make pizza, our Sunday tradition.

His occupational and speech therapists haven't been able to come as often this winter because of illness and weather, but though he misses their visits when they do not come, he seems to be progressing pretty well.