results of the last appointment

Well, the "busy day ahead" statement that I made last time I posted?  Yeah, that was a HUGE understatement.

The first appointment (the echo) got started late, and then took a lot longer than expected because Aiden decided that he was going to fight the sleep and then wake up twice while he was supposed to be sleeping.  (But, of course, decided to sleep heavily while he was supposed to be waking up.)  Once the echo was done, we headed across the floor to meet with the doctor about getting the results.  Because the echo was backed up, we didn't get in to see the doctor about the results until after 1:00.  (We were supposed to see him at 11:00, they'd just started the echo at 10:45.)

The nurse practitioner came in and went over the results with us, which were exactly what we were expecting.  When he was born, and while he was on the oscillator, he had a condition called Pulmonary Hypertension which is high (blood?) pressures in the arteries of the lungs, which makes the heart have to work harder.  By the time we were released from SickKids, it had resolved itself, but they want to make sure that it's not going to come back.  His heart is working perfectly, and the only thing that concerned them was a small hole at the top of his heart.  She said that every baby is born with it, and it usually closes itself up by now, but they're not going to do anything about it at this point, because it still could close itself.  We go again next year for a follow up, and they'll look at it again and go from there.

We had another appointment after that to see the surgeon that did his hernia repair, so we ran upstairs to see her, but she was off the floor for a bit, so we went and did a lung perfusion scan.  They injected a small amount of radioactive dye into his body, and did x-rays on his lungs to see how much blood was making itself into each lung.  (If the results of that were poor, the nurse practitioner was going to call us.  We haven't gotten any calls yet, so I'm assuming the results came back okay.)

After that, we went back up to see the surgeon.  She poked at him for a couple seconds, asked about his diet, told us to go down to the main floor and get an x-ray and said she'd see us again in a year.

Finally, we were able to grab a bite to eat.  And then we headed home.

And, I'm starving, so I'll have to update more later.

Hi-Ho, Hi-Ho, its off to SickKids we go...

Aiden is five months old today! Time freakin' flies, man.

To celebrate, we're off to SickKids for some check ups. At 9, he has an echo, to make sure that his heart is doing what its supposed to be doing, and its doing it where its supposed to be doing it. At 11, he has another appointment with a cardiologist to... go over the echo results? We're assuming, anyway. And then at 1, he has another appointment to... do something. And then, in between all of that, we have to go see the surgeon that did his hernia repair for that follow up, and we're hoping to take him to see the docs and nurses in the ICU.

Busy day ahead.

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update

We went to see the pediatrician on Monday.
Aiden is growing like a (small) weed.
He is 12lbs, 13oz, and 62 cms long.

We, thankfully, made it to the appointment on time. We left later than we were planning to leave, so I was expecting to get there late.

The doctor looked at him, poked at the shunt a bit (Ewww.), measured his head, and told us that everything looks good and to come back in July for an MRI/follow up.

And then we left.

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Dear SickKids,

Early appointment is EARLY.

No love,
Aiden and his parents.

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Oh!

I forgot to mention... As of Tuesday, Aiden (plus one diaper, and a t-shirt) weighs 12lbs, 4oz.  And he's 63 cms (24.8 in.) long.  (According to the people at the appointment, he's "slender, tall and strong"... According to us, he's destined to look like Conan.)

Thought of the day:  Why do we use centimeters to measure small children?  Inches make much more sense.  And grams!  Who understands grams?

well.

I think I should look into taking some sort of "blog writing" class.  I never know what to write about; our lives are pretty mundane.

We took Aiden to his neonatal follow-up appointment on Tuesday.  There was an RN, speech pathologist, occupational therapist, nursing student, and a physiotherapist there to see him and assess if he needs any "extra help" as far as their specialties go.  They were all super impressed with him, and all of his accomplishments.  He's doing quite a bit of stuff that other 4 month old babies are doing, and the only suggestion they had was to make sure he gets lots of tummy time, and to hold him a certain way so that his shoulders are pulled forward, so that it's easier for him to bring his hands together/swipe at toys above him.

Next week, he has to go for a follow-up hearing test.  We have to keep him asleep throughout the whole hour long test.  This should be interesting...

The best medicine...

Aiden laughed for the first time tonight!
(Now we're all acting like idiots to get him to laugh again.)

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/thumbs up!

Aiden rolled over for the first time tonight!

Doctor's update

Aiden met with his pediatrician today for the first time since he had the shunt put in.  Everything looks good.  He's comfortably in the 10th percentile for his height and weight (59 cms tall, and 11 lbs, 6 oz).  His head measured at 43cms, which is back on track with how it was growing before the hydrocephalus.

Yay!

The feeding pump, and all of it's accessories, were picked up today!

distraction!

I really, REALLY need to get better at updating this thing.

Christmas was had.

Growing up was done.

Artsy photo's were taken.

Sleeping occurred.

TV's have been watched.

Fake smiles have been figured out.

Tummy time has happened.

Belly's have been filled.

Happy  New Year!

email post.

So, despite all our efforts, it looks like Aiden will be spending his first Christmas in the hospital. 

Last week, we had a follow up ultrasound (in Barrie). This afternoon, we met with his pediatrician to get the results. Unfortunately, because this was the first ultrasound that they'd done in Barrie, they had nothing to compare it to, and they hadn't yet gotten the scans that SickKids had done, we didn't get any results. 

She went on to do a regular check up, and when she measured his head, she found that it had grown 2.5 cms in the last three weeks (the norm is 1 cm per month), so she said she was going to call SickKids and see what their recommendation was, but she was pretty sure they'd want to see him in the next few days. She came back about 15 minutes later saying that the neurosurgeon wanted to see him tonight to do an MRI, and that we were to check in at the emergency department and they would page the on-call neurosurgeon to come see us right away. She said that we had time to go home and feed Aiden, and pack a bag and such, but to get there tonight. 

We went home and called my parents to let them know what was going on, packed up our bags and fed Aiden and had something to eat and then we left. We got to the hospital just after 7:00, and the doctor here was confused at how long it took us to get there because they were expecting us there around 5:30 or 6:00. 

The doctor did a quick check of him and said that he seems fine, he's got good reflexes and motor skills and etc, but they were going to do a CT scan and then admit him for the night. He asked if we thought he would sleep through the scan, and if we could get him to sleep. We got him to sleep not long after, and headed over to the CT scan room. 

The results weren't quite what we were hoping for. The water on his brain is about 10 times what it should be, and its not draining, so he needs to have a shunt put in, and the sooner it happens, the better. The neurosurgeon is going to try his best to make sure that it happens tomorrow. The procedure itself usually takes 45 minutes, but the whole time he'll be in the OR will be about an hour and a half to two hours. He'll have to fast for 8 hours before the surgery, and then another 4 hours after. He'll have to stay in the OR recovery area for 2 hours after the shunt is put in to make sure there's no immediate complications, and then he'll be moved up to the 5th floor to recover. Hopefully he'll be able to leave after two or three days, which seems to be the norm here. 

Now, we're hanging out in his ER room until a room upstairs opens up. We were told that we'll get one tonight, they're just waiting for a room to open up. (I'm not holding my breath, considering its already quarter after 12:00.)

I'll write more tomorrow.

two months.

Aiden turned two months old yesterday!

the rest can be found here.

zzz...

sleep!
i miss you. =(

(Aiden has decided that ~midnight to ~4am is prime time for screaming bloody murder.)

busy!

After nearly 50 days in the hospital, our little man is home!!!!!!!!! The doctor found no reason in keeping him there while he was working on feeding better when that could be done in the comfort of our own home with a home nurse, rather than in a hospital full of sick people. Tuesday, she started writing up the discharge papers and ordering all the supplies we would need. Wednesday, the supplies came in and we started learning how to use his feeding machine/pump, and I stayed overnight to see what a full night was like with him. Thursday, we left!!!

Friday morning, we headed down to SickKids to have his PICC line removed. When the doctor booked the appointment for us, she was nice enough to make it for 9:00, so we tried out best to get there for 9:00, but got there at 9:30. Luckily, IGT was dead, so they were able to start us right away. He had numbing cream put on his arm, and they told us that we could sit and wait, or walk around for half an hour and then they’d remove it. So, we sat and waited and fed him. They called us in, and had us put him on a stretcher-type gurney. Propped him up on some blankets, and then covered him with sterile dressing blankets. Injected him with a little bit more spots of freezing, of which he was NOT a fan, and then pulled it out. (They were going to take it out at RVH, but apparently there was a balloon at the end of it? So it had to be taken out at SickKids. We didn’t see any balloons.) After that, we finished feeding him, and then headed back to Barrie.

Got back to Barrie just before his next feed, but he was already starting to get hungry. While we were waiting for the bottle to warm up, I changed his diaper. He was MAD, and had his arms and legs kicking and flailing and he managed to pull out majority of his feeding tube, which made him madder. I ended up pulling out the rest of the tube, and then he settled down pretty well right away. We fed him what we could from the bottle, and then headed out to the Urgent Care clinic to see if they could put a new one in for us. (They couldn’t.) So, we had to go back to RVH, and sit in emergency. We registered, and headed to Minor Exam. The triage nurse told us that it wasn’t busy, so it would be quick. We sat and waited for about an hour before he started waking up, hungry. I made the mistake of asking if I could feed him. The nurse wasn’t sure of how the feeding tube thing all worked, so she said she’d ask the doctor and get back to me. A couple of minutes later, she said not to because we would be in “soon”. So, we distracted him for a bit, and eventually he fell asleep. He woke up later, having missed two feeds, and started crying and would not calm down. I went back into the room a couple of times asking how much longer it would be, because he had missed two feeds and needed to eat. They all assured me that it would be “very soon” because we were “next”.

They still hadn’t called us in after about four hours, and there was nothing we could do to calm him down or distract him. Finally, I went back into the nursing station, crying, asking how much longer it was going to be because he needed to eat, NOW. They made up the casting room for us, saying that we might have to move from this room, but at least now the doctor could come in and see us. A nurse came in, and I asked when I could feed him. At this point, he was starting to get lethargic and wasn’t even crying for food anymore. She said she was going to get the doctor immediately. She came back in a couple of minutes later saying that the doctor said we could feed him. I didn’t feel comfortable feeding him the formula that we had in the bag because it had been in there for more than a few hours, so I started breast feeding him and hoped for the best. He seemed to have gotten some milk, because he perked up right away and was a much happier baby. A little while later, my parents brought up some more formula for us and he sucked that back as well. The doctor finally came in, saying that he would have to call the pediatric on call doctor to put it in, because she was the only person who could. I asked how long that would take, because at this point, I was ready to take him back to SickKids. They said that they’d paged her, and she was caught up with a patient but would be down within an hour.

An hour passed, and the doctor still wasn’t down yet. I was going back and forth between the minor exam waiting area, and the emergency area to update my parents on what was going on. I came back into the minor exam area, and Jason was sitting in the hallway with all of our stuff. I nearly lost it. Not only were they lying about how much longer we were going to be (in no way is five hours, “soon”), they kicked us out of the room we were in while we were waiting for the doctor to come down. The only reason why I didn’t go back into that room and throw a fit? The on call doctor is our pediatrician, whom we have our first official appointment with tomorrow. I calmed down, and then I went back into the nurses station to ask if they knew how much longer the doctor would be. The nurse/clerk said she didn’t know, and she didn’t know where else I could go to have his tube put back in. I asked her to page the doctor again, because we had been there since 4:00pm, and we were continuously told that we were going to be “next”. She came back over to us a couple minutes later saying that the doctor had called back and she was “very busy with an unstable infant, so she will be down as soon as she can leave the infant”. Thank you for the guilt trip, lady. But you see my infant? He went through hell for the first month of his life, and because of that he can’t get sick. So, you see, sitting in your hospital for six plus hours to get this done? Really wears my patience thin, and this guilt trip? Not helping your case. Rest assured, if this ever happens again, I will be driving the hour to Toronto and making sure he goes to the best hospital where ANYONE can replace the tube, not just one person.

Finally, a nurse came over and got us, saying that the doctor was able to put the tube in. We were brought back into the original room that they’d put us in, and the doctor came in a couple minutes later. The doctor looks like she’s about 25, which kind of surprised both of us. And, I’m not sure about Jason, but I immediately liked her. She asked us a couple of questions about the little man, put the tube back in, had it x-rayed and then we talked about a few other things that she remembered from his chart. She said she would be contacting SickKids between then and our appointment tomorrow to get their opinion on weaning him off of an anti-convulsant, seeing as he’s only had the one seizure, and it was febrile. (The pediatrician that looked after him over the week wanted him to wean off of it, so he would be on it until he was three or four months old.) And she mentioned a couple other things that she wants to work on too, but I can’t remember what they were anymore.

Saturday, Sunday and today have all been pretty low key. We’ve mostly just worked on getting his feeding back on schedule, and catching up on some (much needed) sleep. Aiden had his first real bath today. He didn’t love it, but he didn’t hate it; he seemed to mostly be confused by it. Now, he’s sitting in his bouncy chair, watching the back of his eyelids.

whew!

It’s been a while, and right now I don’t have the energy to update on everything, so I leave you with bullet points.

• The PICC line insertion took longer than the hernia repair. It was supposed to take 30-60 minutes, but the little man has little veins, so it took longer. Two hours longer.
• We started breastfeeding. He LOVES it. (To the point of getting angry at us for not understanding the mechanics of it when we tried to feed him a bottle. He kept opening his mouth super-wide, and trying to latch onto Daddy’s shirt.)
• About a week-ish after being moved onto the general pediatric floor, he was moved out of the observation room (four patients) and into a private room.
• We were able to take the little man for a couple of walks around the 7C unit. (He slept through about 99.9% of them.)
• Yesterday, November 19th, the transfer coordinator came into the room saying that RVH had a bed, and they were looking at transferring him on Monday. Two minutes later, the nurse came in saying that we should pack everything up, because once transport was finalized, we would be on our way.
• Jason stayed in Toronto and cleaned/packed like a madman at the Ronald McDonald House, and tied up loose ends with them. My parents went down there after supper last night and picked him up.

pictures

So, we suck at updating this… Here! Have some pictures.

Movin' on up!

Well, the little man is officially “too healthy” for the ICU.

This morning, his discharge papers were drawn up, and sometime this afternoon/evening he’ll be moved up to a room on the pediatrics ward floor.

Yaay!