We had a great day today.
Started with the cleaner coming - gotta love it when someone does my housework! But this was the first time the lady had come, she is from the local counsel, she will come every second week. What an amazing help that will be, just to know that the house is clean, one less thing for me to worry about!
We then headed to the paediatrician, we had to get the results from Holly's test she had last week. I don't think I've mentioned yet that Holly was in hospital a couple of weeks ago. She was really screaming one day and I just couldn't get her to stop. BY the afternoon I'd rung the ambulance, she was in pain all day. The ambulance was next to useless, the lady basically said "well, we could come, but we don't have a baby seat and we'll take about 3 hours to come - you better off taking her down to emergency yourself". So we took ourselves down to the emergency department, thankfully the wait was only one person so we were seen really quickly and once we got through triage they took her into the paediatric emergency section straight away. Her vital signs were all pretty good, she was running a slight temperature, but everything else was pretty good. No one could figure out what was wrong with her other than me telling them that there was something wrong with her. I was beginning to think they were going to send us home. Until she started crying again, they could see what I was talking about, she was in pain. So they took a urine sample - a feat in itself! I had to hold her and feed her while L was at her feet literally with the cup waiting fer her to wee! A very funny sight. We got all her wee in the cup, which apparently is not easy! The results of that came back in about an hour - she had blood in her urine - one of two things, either a burst something or a urinary tract infection. We were admitted to the ward where they put an IV drip in for anti biotic. I couldn't be in the room for that - L was there for Holly but I hate seeing her crying and straining against the nurses while they hold her down to put the needle in - I just hate seeing and hearing it so I left. Anyway, we were told it was most likely a UTI cause if it was a burst something there would be more blood and a lot more pain. They gave her antibiotics every hour over night then every two hours the next day. Even the next day you could tell she was more sprightly. At about 10 or 11 in the morning they took her down for an ultrasound. I was expecting her to cry the whole way through that but she didn't - she was really great. The result from that came back that her left kidney is enlarged. Again, one of two things, either the UTI has caused it or a thing called reflux into the kidney. So instead of the wee draining into the bladder it goes back up the tube into the other kidney. She had to have a thing called an MCU done last week. In that the put a catheter into her to fill up her bladder. The liquid showed up on the ultrasound screen and they took photos of it all. The whole procedure took about half an hour.
So we went back to the pead today to get the results from the MCU - negative! She doesn't have the reflux thing! Yeay! and she doesn't have the UTI anymore! yeay! so we can go off the antibiotics! yeay! They don't know why her kidney is enlarged but they'll do another ultra sound on it in about 6 months to see if it is still enlarged or if its settled down.
He does think that she is developing more spasticity in her hips - not a good thing at all. I feel a bit guilty cause I know I don't do as much physio as I'm supposed to. The doc wants to have an x-ray done of her hips to check if they aren't being pulled too far. Apparently - and someone correct me if I'm wrong, but as far as I know the muscles can get that tight that they can pull the bones around in the socket - I imagine that would be really painful, ouch! He suggested that if her muscles get too tight he'll refer us back to the hospital for botox treatment. I feel funny about it, I feel like its a bit of a shock, but its totally not. I know people have told me about having botox and I know most kids do need it for their muscles, I just think I thought it would be later, not so early.
Anyway, we came home from the pead and the photographer came to take photos of the house - we are about to put it on the market. We are going to buy a bigger house, one that can accommodate a wheel chair for Holly later on. This house isn't practical for a wheel chair.
I also had some fantastic contact with people who have hydran babies today. I feel so positive about it all. People in the same boat, people who DO understand, people who know what I'm going through, people who are welcoming and open and lovely! I have about 30 new facebook friends - I feel so popular!! I'm really looking forward to chatting with them and getting to know them and their babies. Such a relief finding people.
So glad you found everyone on the hydran group. I know Noah wouldn't be alive today without the stuff I've learnt from them.
ReplyDeleteNoah gets UTI's quite often - especially when he was younger. We did lots of tests and found out its because he has 'neurogenic bladder' which basically means that he doesn't empty his bladder fully or doesn't go on his own very well because the messages from the brain to the bladder aren't getting there like they should.
Because he wasn't emptying fully it leaves bacteria which causes UTI's. We tried catheterisation for a while (went to a continence clinic a couple of times to talk it all over) but that seemed to cause more UTI's. We now have learnt how to do a 'bladder massage' which is pretty much us pushing on his bladder (putting pressure on his tummy)to feel how full his bladder is, which assists him to start going and we then continue to put pressure on until he's empty. We have to do this at least 3-4 times a day or he gets UTI's again.
Oh wow, thats really interesting Lisa. Which sort of doctor did you have to take him to to get that sorted? A urologist?
ReplyDeleteJust as a side funny - there is a chinese doctor at our local hospital who is a urologist and his name is Dr Wi - I thought that was funny!!!!
Our paed just referred us to the continence clinic, although we had seen a urologist in the past. They thought that Noah needed to be circumcised which would help the problem, but it didn't.
ReplyDeleteDr Wi - love it! :)