and it goes on.... :-((
Nothing was done today and Rafa still can't walk.
He was meant to have a bone scan this morning, but we waited there an hour while they tried to page our Dr. They did not want to do it again so soon after the last one (6 days) - why put more radiation in his body?
After lunch, Domingos called me and I said something strange is going on, as they wouldn't even tell me the results of his blood tests.
He arrived at the hospital about 2 pm and went to the head nurse demanding answers and to speak to Dr's as poor Rafael has been suffering all weekend, and nothing was done today.
He ended up venting to the Resident Doctor who works on the ward. Mingo got really agitated with him, demanding answers and explanations.
As a result -
A Rheumatologist has been -
Rafael now to take anti inflammatory as well as something for his stomach.
He ruled out any chronic problem with Rafael's hip
It could be that Rafael has "some" pain and is scared to move his leg - therefore he cries when we try to move it
It could be his body reacting to the initial infection (not a new one)
He wants to do an MRI tomorrow - but that requires Rafa to have a general anaesthetic :-(
Orthopaedic came back -
The bacteria from the second surgery has grown and it showed a strep bacteria
Do a bone scan tomorrow to check infection?
Infectious Diseases came back -
OK, as it's strep, then the antibiotic he was on is not effective enough, so change it now to blah blah
Sooooooo, people are talking and departments are co-coordinating.
Still don't know which Rafa will have tomorrow, the MRI or Bone Scan - he will only have 1, the Dr's are still discussing the best avenue. Bone scan is good, as it does the whole body, but it is radiation.
Thanks to all for your messages, calls and visits
xxx
Tasha, Dom, Gabriela e RAFAEL
Hey there
Wish I had good news :-(
Rafa started his oral antibiotics yesterday. They have disconnected the IV, but he still has the needle in his hand.
He could not walk at all. Complained a lot of pain in his right leg (for 2 days)
Last night he had a fever again.
They are sending him for more ultrasounds this morning to see what could be happening and if there is any fluid on his other hip.
Domingos is very worried as he was with him all last night and this morning, and he said Rafa is exactly the same as the night he took him into the hospital :-(
Xxx
Wish I could tell you good news, but there is no real news yet.
They didn't take his blood test until late this afternoon and the Dr probably won't be in until the morning.
Today Rafael had a fun day :-) Auntie Patrice and Uncle Stuart came to visit while Mummy went to the city and bought him a Transformer toy :)
After they left he said "my new big friends have gone to lunch" - tooooo cute
He had another 2 Aunties visit and sit with him and he had lots of fun ---- until ---- blood test time. Oh what a fight :-(((
Poor little guy, he is SOOOOO over it all.
Thanks to all of you
Tasha, Domingos, Gabriela e Rafael
Dear all,
another day has gone by. Young Rafa is doing well. The first day after the second surgery was ok and he did not complain of any pain during the whole day, although he was on morphine during the whole day (that might explain why he was happy :)))).
The surgeon who operated young Rafa is (believe it or not) Brazilian. He is really a nice guy and I think he must have given Rafa special treatment. He had a quite long chat to me about what is happening and possible causes. I'm not going to write anything here as I'm too tired and I think we'll have a chance to chat face to face in a near future opportunity. For the time being, he said that there was less pus than the exams which were done during the day might had suggested. That was good news.
Anyway, the infectious disease doctor came by on early evening and he was pretty confident that this time everything will go well and hopefully (fingers crossed) we'll have our young Rafa back home during the weekend. The doctors are really positive on this point, although the first blood test after surgery is yet to be done. It will happen tomorrow, Thursday. We are confident to have some good news this time! However, we have also to consider a possibility of a draw back. Anyway, only positive thoughts are allowed for the moment.
Other than that, at the hospital, they have an internal TV channel. There is a bingo around lunch time which is called Lingo. Well, Rafael won a prize today. He could choose among different small gifts and he chose a torch. I doubt he or anyone else in his ward will have any sleep tonight. Luckily it is Mummy who will be there, as I'll try to catch up with some sleep tonight. I'm a bit tired of sleeping on a short reclining chair.
Thank you all for all the positive thoughts during this hard period as well as your friendship and concern.
We'll write more tomorrow.
Take care you all,
Dom
The bacteria level in his blood has gone up to 76 :-(
The antibitotics are not working.
I am shattered and too tired to write much -
He had a bone scan this morning, but the IV fell out of his arm so we had to go away and come back later.
2 Dr's tried to put a new IV in and it was a huge battle - poor Rafa :-(
Then he had an ultrasound again - there was visible fulid on his hip - could be infection or could be fron last weeks surgery.
The bone scan was negative for any intection in his bones.
He went to surgery again tonight at 8:15 pm .
Mingos has just called me to say they are back in the room. Rafa is ok so far.
The surgery was ok. There was some pus, but not as much as last time.
Now more antibiotics for 3 - 4 days, and see how it goes.
They will call in another Dr from infectious diseases to have a look at his blood tests :-(
Yesterday we were able to leave the room for 1/2 hour, so we went outside to the playground and visited the farm animals. At the same time, am emergency helicopter was taking off and we were right underneath it. It was so loud :-) Rafael loved it.
Today was another "no news" day :-( The nurse did his blood test in the morning, but as usual, it had to be done again as she had not taken enough (grrrr). The next one was taken at 2pm and I have just spoken to Domingos and there is no result back yet :-(
Rafael was a bundle of energy this morning, even climbing all over his bed!!!
By lunch time he had slowed down a lot.
The nurse let me take him out for 1 1/2 hour today :-)))
We went to the Starlight Room again and he did some painting (with his left hand as his right was sore from the blood test) and we tried to play Nintendo and Wii - look, the poor child really needs and adult around who knows how to play these things!!!!
The Dr said yesterday that the level of infection in his blood was 60 (whatever's) when he came in and but now, they should be in the 30's but his are still in the 50's. That's why they are trying to investigate more. Also, each time they take blood, they try to grow cultures, but nothing is growing, therefore they don't know what they are dealing with. But the Dr did say that in less than 50 % of cases do they find out what the bacteria actually is :-(
Thanks for all of your messages, calls etc...
Love
Tash, Dom, Gabriela and RAFAEL
ps: I could not resist buying Rafael his new doona today :-)) He loves dinosaurs and is always complaining that he is cold in hospital!
Hi guys,
this will be a very short one, not as detailed as the ones Natasha's been sending.
This morning (Sunday) we receive not so good news. The fact is that the blood infection is not decreasing at a desired speed which probably means that they're targeting the wrong type of bacteria. They're adding today another type of antibiotics on top of the one they're already giving to Rafael. I got a bit scared this morning because there was a possibility that Rafael would need to go back to surgery. The head doctor came, did some tests and said that the improvement, although small, is good enough to avoid a second surgery, for the time being.
Anyway, that all means that Rafael will have to stay at the hospital for longer. How many more days? The doctors agreed to say that they cannot estimate: 3 more days, 1 more week, it will all depend on how Rafael reacts to the new treatment. So, our little boy won't be home for a few more days I'm afraid.
However, not everything is bad news. The fact that there has been a reduction in the blood infection as well as the fact that he does not have any fever are great signs that he's winning the battle against the infection. Not as quick as we hoped for, but winning. He's doing ok with some ups and downs (who wouldn't have some downs having to be stuck on a bed 24 / 7 with a snoring Dad next to your bed all night long?).
Tash will bring more updates later today.
Take care you all and thank you very much for all the support you've been given to us. It is more important to us than we can actually express through words.
Rafael is slowly getting better each day.
His blood test today showed that the infection level is going down (slowly)
He will start oral antibiotics tomorrow, and if he takes them and can keep them down, he should be able to come home on Monday :-)))
Yesterday the "toy lady" lent him a box of cars and another of blocks - he is heaven now - having so much fun playing (even if it's only 1 arm)
His drip should come out tomorrow (fingers crossed)
Still no clue as to what type of infection caused this :-(
19th June - Day 4
Today was much better :-))
They took the drain out of his hip this morning, allowing him more movement and he was soooooo happy and in far less pain.
In the afternoon, I took him in a pram on a 1 hour tour of the hospital. They have a special room there to entertain the children. I have no idea about Nintendo's or Wii’s!! One of the staff helped us to set up a game of Wii bowling. On his very first go, Rafael scored a strike!!! He was so happy and he got a little prize :-))
Then I took him for the big surprise - a special McDonalds store inside the hospital. Well - he promptly informed me that it's on for Sundays, not Thursday. I managed to coax him into a 50 cent ice-cream, as you can see, he enjoyed thoroughly.
He was due back by this time (having been off his drip for 1 hour). But I was allowed to give him is first shower :-))))) He had so much fun. of course, he was scared at first, because his hand was in a plastic bag and his wound has all kinds of dressings, but it was fun. Then he was all fresh, in clean clothes and sitting up on top of the bed covers (see photos).
The results of the blood cultures are a bit inconclusive at the moment. !#@! Nothing "grew" however they found a cell that should not be there - but it could be a contamination!! They have given him a one off dose of different antibiotic tonight, that targets the cells they found and they will have a better idea after tomorrows blood tests if that is what they are dealing with.
Rafael didn't even cry today when they took 2 lot's of blood :-))) He is already getting used to "hospital life", but often asks and cries about going home :-(
Today Rafael had an "off" day
But it was just 1 day after his surgery and the antibiotics haven't been able to take effect yet.
His blood test today showed that the infection has increased, but was expected. The results of the tests from his surgery should be back tomorrow.
Today he was in a lot of pain, very irritable and not eating (sounds like normal Rafael???)
They did not take the drain out today (probably tomorrow morning)
He will be there until at least Sunday, depending on his blood tests each day. By the way.... what a fight that was!!!! Getting blood from his finger tip - I had to hold him down while the nurse did it :-(((((
I guess because of his age, they give nothing stronger than Panadol or Nurafen for pain - gosh if that was us adults, we'd be high on morphine!!! Poor little guy.
He was happy to see Gabriela this afternoon :-)))
Wow, where did the last 24 hours go?? What a blur!!
He woke up yesterday (Monday morning) and couldn't walk. I left him on the sofa and he seemed fine. Throughout the day, whenever he tried to get up, he could not bare any weight on his leg.
By 10 pm , he was crying with the pain, we could not even touch his leg. Mingo took him to the children's hospital and they told the lady in front of him it was up to 4 hours wait. Once he told her Rafael's symptom's, she put him straight through into emergency.
Basically, a bacteria got into his blood system and decided that the hip joint would be a nice place to settle down and try to destroy!!
By this time, Mingo had been up all night. I went in and relieved him and waited all day for the surgeon to come. When he finally did, it was all "rush, rush, hurry up", within 45 minutes he was in surgery.
They took puss from his hip and washed it out. He has a drain there for a few days in case more comes. They will test it to see what sort of bacteria they are dealing with and go from there.
Rafael finally woke after 5:50 pm today and was very happy (but tired), wanting water and food.
So far, it seems he will be fine, as the illness was detected within 48 hours (24 actually). He has to stay in hospital for some days and then have on-going blood tests and x-rays to make sure his hip has not been damaged. The Dr did say that to his eye, the cartilage looked like it had not been attacked yet
