Hard times....

....We saw our surgeon last Tuesday (12th April 2011) because the anti-biotics that were given to her for this low grade infection on her wound had not cleared it up. The surgeon took a look as best she could and did say that the wound from what she can see has healed nicely, but there's this "cluster" of skin right inside the cast, probably at the top of the wound, and stuff is still oozing out of it, so the surgeon suggested that Maisie has another blood test to check and make sure that there is no infection in her blood, she also gave her another 5 day course of anti-biotics (same ones). We explained how difficult we have found it to give these to Maisie, the surgeon explained that; a) a little is better than nothing at all, & b) to get the syringe to the very back, behind the back teeth pointing to the cheek (so she doesn't choke) well that didn't work either we still got covered in it so ended up giving it to her with Alan pinning her arms down and me putting a towel under her chin, getting bits in her mouth at a time then putting the towel over her mouth (but not covering her nose, so she could still breathe) to force her to swallow more that she spat out, although this is awkward, it worked....

....Maisie finished her anti-biotics on Sunday 17th April 2011, but there is now some funny bright green coloured stuff coming out of the wound. This morning (Mon 18th) I rang our GP's secetary to ask how I can get the results of Maisie's blood test that the surgeon requested she has, the GP's don't get a copy of this, but she did say that she would look into it for me ring me back and let me know. Anyway around 1/2 hour later the surgeon rang, apologised that she had not been in touch sooner but that the bloods had only just come back, and said that they look "normal" for Maisie's circumstances. I explained to her what was coming out of the wound, so were going to her local clinic tomorrow ( Tues 19th) so she can have another look at her and decide on what the next best course of action is! Later on this afternoon, I had a call from our GP, I explained that I had spoken with the surgeon and that we were seeing her again tomorrow, the doctor had gotten hold of Maisie's blood results, and was concerned at her Haemoglobin level being only 8.9 (Dr said it should at least be 11), she rang through to a consultant at The Royal London who said that a HB level like 8.9 is normal and is due to blood loss from the operation. Maisie was discharged from hospital with a HB of 8.8, 3 weeks later its still only 8.9, however, all this would be good apart from the fact that Maisie only lost around 14ml of blood in the operation (about a tea-spoon) so doesn't really account for a HB of 8.9, Dr has requested another blood test to check her iron stores in her blood to see what there doing...

...other than all these constant hard times were faced with each day, Maisie is progressing so well, her little spark is starting to come back fast, which is lovely to see, tonight she was on her rocking horse and she absolutely loved it, so much so that when we took her off it she cried to go back on...so we let her have a little longer on her little bright pink rocking horse! Although Maisie tires quickly she loves the tummy time, where she can just manoeuvre herself around, its really lovely to see her playing like a baby should play. We watched some video's on Alan's phone from before Maisie had the op, and just watching her, walking around and the general happiness in her voice all seems like it was a lifetime ago, yet hurts like hell to know that whilst doing something to benefit her when she's older, we have taken away one of the things that she loved most....her freedom! Life seems hard looking after an almost toddler in a Hip Spica, its one hell of an experience, and really tests you as a person, I am realising that I'm much stronger than I thought I was, but just because I'm always smiling, doesn't mean that's how I'm truly feeling, I hate seeing Maisie in this cast, you can look at her sometimes and she just looks sick of it all, many tears have been shed from us all in the short space of time that Maisie's had her Spica on, and no doubt there will be more to come. For now the only way is forward, once we have gone forward so far, that's when we can move up =)....

Steph xxxx

Moving, Playing & Medication.....

.....Things have gotten worse with getting Maisie to taker her paracetamol and fluxocicillin antibiotic, personally I really do not blame her for not wanting the antibiotic...I got a taste of the so called "lemon flavour" antibiotic, ugh it was wrong!!!! There is not a chance on this earth anyone would call that "lemon" it tastes worse than adult paracetamol!!! As your refusing and literally spitting it back in my face, I thought maybe mix it, get some other ideas etc;: Making a game of it -resulted in more screams and anxiety. Let you do it as well - made tons of mess and stickiness for you to then launch the syringe. A spoon - nope not a chance could i get it anywhere close to her mouth without her arms wriggling free to knock it out of my hand. Mixing with food - we tried it in her bottle of milk, her cup of juice, favourite flavour yogurt etc, Maisie could tell each time when we had put in in something!! After finding that there was not a chance that Maisie was going to take these antibiotics with anything, we knew we would just have to try and force you for your own good, so we thought of holding your mouth shut to make you not have a choice in swallowing it - yes this did work, but the screams you gave out were heartbreaking, it was wrong and it felt wrong to do that! NOT AGAIN!!! We were informed by Alan's Mum that holding your nose stops you being able to spit something back up, so this is now how you are getting your antibiotics, propped on the floor (Maisie's too jumpy to be safe on the knee) Alan pins her hands down, i place a towel under the chin to catch dribbles, through the cries and the tightly shut mouth, I wait for the almighty open, close your nose and squirt some in, yes it takes around 4-5 squirts from the 5ml you should be having, but it gets most of it in the system!

Playing is getting better and better & more and more each day, I find that more time is being spent in the Spica Chair each day, as playing with toys in a new way is actually quite fun. As Maisie was in her chair today, i caught her opening her arms wide and grabbing the sides of the chair with each hand, getting a firm grip and then pulling her waist from one side to the other, in the tiniest bit of space that there is where the harness is at the each side. I am thinking that once the antibiotics have stopped, I may look into some natural kind of pain relief for Maisie, she's getting distressed having to keep taking all these different medicines, its not nice, we shall see.....

Steph xxxx

The first movement......7th April 2011

....What a day we have had today. Maisie was being how she normally is - playing, shouting etc etc. After around 2 hours kip she woke up and after a cuddle was happy again. Maisie managed to wriggle about while she was laid on me, so I asked Alan to lay the duvet on the floor and put a pillow in the middle of it, we then placed Maisie's stomach over the pillow, out of curiosity I started to make a video on my phone....Maisie really amazed us, 2 weeks post-op and she has started to commando along the floor a little, I'm so chuffed i filled up when i saw her doing it...

Steph xxxx

6th April 2011......expensive trip anyone???

....Woke up this morning and went to change Maisie's nappy. There was more of the seeping stuff from yesterday, only this time it was more blood-like looking. Rather than ring our GP we tried to get hold of the surgeon, but there was no answer, so we rang the switchboard at The Royal London and asked to be put through to an orthopaedic doctor, once they were on the phone Alan explained about the seepage yesterday and what it was like today, the lady on the phone said that she would get them to ring us back after 3.30pm. Within 10 minutes of hanging up the phone they rang back, she had spoken to the ortho and they wanted to see Maisie at 11.30am!!! the race is on to get ready, best prepare for her needing a bottle etc. We rang a cab, and he came for about 10.40am. We got to the hospital just after 11.30am, which was lucky, but they were fine with that as they knew how far we had to travel, we showed the ortho the nappy from this morning, and he was a little concerned and wanted to have a proper look at her wound. We went round to the plaster technicians room and it was the same bloke who put the cast on Maisie, he said "this is one of my casts, last time i saw you, you were asleep" together with the ortho they both looked at the cast and what they could do to enable them to see the wound without weakening the cast itself. They decided to cut just a small piece out from the front, but clipping a bigger part where the bend at the top of her leg is. Once he had cut the piece off the doctor came in and pulled the sticky dressing that was put on her after surgery, this was very damp and a little on the smelly side, there was also some fluid running from her wound which he took a swab of. Upon examining her wound he told us that he wanted to put Maisie on some antibiotics as she has a low grade infection, and he wants to get on top of it to prevent it from getting worse. Because he had pulled the dressing off, and there wasn't a chance without fully removing the cast that he could get another one in, but he did say that we would be better with some soft swab gauze folded in half to soak up the seepage, and to change it every time we change her nappy. The ortho also wanted Maisie to come back next week and see her surgeon Ms Maizen, so she can have a look at it, and go from there on how the antibiotics have worked. Maisie is to see her surgeon on 14th April 2011 at 2.15pm....

Steph xxxx

5th April 2011....

....We tried to get Maisie an appointment yesterday about the muscle cramp she had, but they had nothing. We did make her an appointment for 6th April 2011, but this morning when we got up and took her nappy off there was some fluid-type stuff that looked like it had seeped out the side of the cast at the top around where the nappy is inserted. To describe is was like a very pale brown in colour yet had no odour? So Alan rang the doctors and they could fit her in today at 11.30am!!...

...I took Maisie to the doctors and explained everything, she had a look at the stuff that was seeping out, and said it was most probably left over blood, as she couldn't smell anything she didn't want to give her any antibiotics, but said to keep an eye on it, if it gets any worse we should take her back. For the muscle cramp, we should put her paracetamol back up to 4 times a day to try and help, provided she's not had cramp in the next week then we should start to reduce the paracetamol and see what happens....

Steph xxxx

3rd April 2011......oh no

.....Maisie had a pretty good day today, which is great, she finished her antibiotics, which is good, at last now were just on paracetamol wooohoooo!!!! Maisie went to bed as normal, and settled well, but she woke around 10pm and she was screaming like you've never heard a baby scream before, there was obvious pain somewhere...Alan cuddled her for a while, then I took over, we tried putting her teething stuff on her gums because she's teething again, but that did not help at all. Alan was stroking her right leg and foot, we did wonder if she was getting cramp as we know this can happen with a child in a Spica Cast, Alan gently put his finger into the cast on the right side as its only to her knee there is a nice gap around the top of her leg to get a finger in, Alan could feel the muscle that had tightened up....Muscle Cramp.....poor baby, she was screaming the house down in agony with it, I personally have never experienced cramps, but Alan does frequently, so I know how hard it is for Alan to deal with as he gets them really bad. I cannot see my baby like that again it was horrific. Maisie's muscle cramp took around a hour of screaming before it went away, then we had to get her settled again so we could put her back to bed! Will be making Maisie an emergency appointment with the doctor in the morning and see what they say about it....

Steph xxxx

2nd April 2011.....a&e trip

.....We had to take Maisie to a&e this afternoon, as her right leg and foot was freezing to touch, even after wearing toastie socks all day. Firstly Alan rang NHS Direct, who put him straight through to a nurse, she advised us, as Maisie is only 9 days post op, we should contact the ward for their advice. Alan then rang Grosvenor B at The Royal London Hospital, explained everything, they advised we took her to a&e to be checked over to make sure there is nothing wrong with the cast....

....We got a cab to a&e and were there for about 5pm, we waited around 1 1/2 hours for an orthopaedic doctor to come and check her over. He said that as her foot had warmed back up a little, he thinks that it is positional rather than anything to do with the cast itself and said we should just make sure that her leg isn't pressing on any of the cast to prevent it happening....Phew...

Steph xxxx