Monday 28 February 2011

MRI time.

Pre Assesment on the 17th of January went very smoothly. Everything was explained fully and the MRI seemed pretty straightforward.

So we got to the hospital bright and early on the 26th... got a bed in the ward, got lil boy a hospital gown and went through most of the same procedures as when we prepared for lil boys surgery. This time the nurse brought some toys for him to play with in the hospital bed while we waited. We were second in line out of a group of three small children having MRI's that day. The wait wasn't too bad, kind of like a conveyor belt... wheel em in, wheel em out...

When it was lil boys turn, they wheeled him in the hospital bed to the anesthesia room by the MRI. Both big daddy and myself got to go in to anesthesia this time, and they decided to try the gas and air to put him under first. Big daddy held him down this time, while I stood next to him holding lil boys hand as they put the mask over his face. They told us not to breathe too deeply, as we might get some of the gas too. Watching lil boy struggle is the worst thing in the world, but the gas was much less stressful than the IV. It didnt take long before lil boy relaxed and fell asleep. At that point they had him laid on the table and we were ushered out so they could prep him fully for the MRI.

We went and got a coffee and a snack and waited. It went really quick, only about half an hour and we were called back to get our lil boy. He was groggy, upset, and it took a while to console him. We were wheeled back to the ward and once lil boy calmed down, the nurse tried to get him to drink. He refused for a while, but eventually he drank and had some lunch.

Everything went fine, his stats were all normal and he was released straight away. Sometimes the NHS really is efficent and well run.

We got the MRI results a couple weeks later. Everything looks normal, they saw no indications of a cause for lil boys hemiplegia. Its kind of what I expected, and I am glad. It means whatever happened, lil boys brain has recovered enough that there is nothing left to see.

Monday 13 December 2010

The glass is half full this week...

I am feeling very optimistic after my special lil boys physio assessment. It went really well, lil boy played and did everything the PT wanted him to do. She agrees that he appears to have hemiplegia affecting his right side, but says in her opinion it is very mild and she thinks he will have little difficulty with most tasks.

She says his muscle tone is on the mild end of high, and explained it by saying his brain is sending too many signals to the muscles on his right side, which is why his right arm often tightens up close to his body, as all the muscles contract. His leg seems less affected than his arm, though she did notice he limps a bit and walks more on his toes with his right leg. She confirmed all the symptoms we have seem over the course of his life point towards congenital hemiplegia.

She also gave us some exercises to do with him, and said that the activities/stretches we have been doing on our own are good. We just need to keep encouraging him to use his right side as much as possible, through play and activities.

I am really hopeful now. She wants to wait and discuss his treatment after we get the results of the MRI, so we wont be seeing her again until February or so.

Friday 3 December 2010

The ball is finally rolling!

This has been a big week, finally things are starting to happen.

First, I got a letter with lil boys MRI date, 26th January, 2011. He has a pre-anaesthetic appointment on the 17th, since they have to put him under to do the MRI. I am not looking forward to that. I still remember the way he screamed when they did the anaesthetic for his surgery. Maybe big daddy will go in to hold him this time, I don't know if I can do it again.

Second, I got a phone call from physio! Lil boy has his first appointment next Friday, 10th December. I hope it is up to my expectations. They sent me a stupid questionnaire, questions like "How long do you expect your child to need physio?" Ummmm, how should I know, I'm not a doctor. *sigh* I'm sure the questions have their purpose, but I don't know what that is.

Anyway, I am just excited that this are finally happening, and a bit nervous. Its like we are embarking on a new "normal" if that makes sense.

Wednesday 24 November 2010

My Special Lil Boy is 2 now!

And we are one step closer to getting an appointment.

Last week we got a phone call from the paediatric consultant we had been referred to at the hospital clinic. She basically said she was happy with the other paediatricians assessment, and if it was OK with us, instead of having an appointment with her which would have the same outcome, she would just go ahead and refer us for an MRI and then refer us to the community paediatrician so we can get physical therapy going quicker.

So I guess that is as close as we are getting to an "official" diagnosis right now. I hope we get to see the community paediatrician soon, I want to see what they have to say. And I want physical therapy for my lil boy ASAP. From talking to other parents, he really should have been diagnosed at his 8 month check-up, so it feels like we are a year behind on his therapy. But I am also hopeful, because other parents have such good things to say about how much physical therapy has helped.

I continue to encourage him to use his right hand, and I get rewarded with occasional examples of improvement. I know with the right help, he will do very well.

Wednesday 3 November 2010

And here we wait...

Yes, still waiting for a referral. Still. Waiting. Grr.

I did finally receive a copy of the letter that the Paediatric consultant sent to our GP though. So I have his opinion  in black and white.

"Lil Boy seems to have slight weakness of the right arm and leg and probably leg length discrepancy with shortening of the leg on the right side and some muscle wasting. With his clinical history and neurological findings, it is very likely that Lil Boy has congenital hemiplegia. As it will affect his long term motor function and limb growth, he will need further investigations. He will also need long term physiotherapy and occupational therapy."
It is stark, those words in black and white, down in writing, permanent. I get tears in my eyes every time I read it. I am still coming to terms with what this means for our future, hopeful that my special lil boy with astound everyone with his resilience.

As for the hydrocele surgery, he seems to be completely recovered. He has a small scar to remind me of his ordeal every time I change his nappy, but I think it was worth it. His lil boy bits finally look normal, and he shouldn't have to worry about any pain or complications in the future.

I just hope we get a referral soon. I know there will still be plenty of waiting to come even after we have an official diagnosis.

Wednesday 20 October 2010

Did someone have surgery?

Yesterday dawned bright and early. We got up at 6, boiled some eggs, woke up the lil boy and tried to get him to eat boiled egg and toast. He was having none of it. He looked at me as if to say "Why on earth did you wake me up so early and start shoving food in my face?" By 7 he had only eaten about half an egg yolk and one bite of toast, so we got him a bottle of milk, which he finished by 7:20, with just 10 minutes to spare.

By 10 lil boy was finally realizing he couldn't have any food, so he had some watered down apple juice to keep him going. We got going by 11, and got to the Children's ward at 11:30, just on time. Well, just in time to start waiting. I told you before I hate waiting, but yesterday was especially bad.

Lil boy was checked over, weighed, etc... he was given a hospital gown that was way too big, and we put it on him with his robe and slippers. We were told that our lil boy was first on the list since he was so young, and we  expected to go up to the operating theatre by about 1:00, but that didn't happen. We found out that the morning session of surgeries had run over so we had to wait on that, plus lil boy had been bumped down to second on the list by a 4 month old baby. So lil boy had a good time playing with his bed and television for a while, as well as walking around the ward getting to know the place.

Finally at around 3:30 we were called up to the theatre floor. After a bit more waiting up there, it was time. That is when the real torture began. I had to hold my special lil boy tightly as they put his IV into his hand. It was heart wrenching. He screamed and tried to pull away. I kept him still and tried to reassure him as best I could. Luckily he had a good vein and they got in in the first try. He calmed down a bit after it was in, then thy gave him the sedative, and he slumped almost instantly. They had me quickly lay him on the bed and then I was rushed out of the room. I started crying then. It was the hardest part of the day.

The surgery went very quickly, no complications, and he was out in recovery by quarter past 4. He was very uncomfortable, and was a bit upset with me for about half an hour, but he soon got over it. About an hour after his surgery he ate his dinner, and by 6:30 he was up walking around, back to his normal cheerful self. I was amazed and grateful that he coped so well.

I am so glad it is over, my lil boy is healing well and playing like nothing happened. He occasionally seems a bit uncomfortable, but it is barely noticeable. We have been giving him pain killers every six hours for the first 24 hours just in case. I don't think he will need it at all after that. I think this whole ordeal has left me more exhausted than him!

Sunday 17 October 2010

The night before...

Surgery! I am packing my special lil boys bag... pajamas, robe, slippers, teddy... snacks for after surgery... plus all the usual baby gear. I'm so nervous. He doesn't even know what is going on.

Early morning, poor lil boy has to be woken up to eat his brekkie at 6:30, which is very early for him, considering he normally eats at about 10. He can only have a light breakfast, and no solid food after 7:30.

Lil boy can have clear liquids from 7:30 until 11:30 when he gets admitted to hospital. His surgery will be in the afternoon, and he should be able to come home about 4 or 5 hours later.

I don't know if I will be able to sleep at all tonight.