His skin was more fragile than after the first cast - slightly dry and blotchy. So I put on lots of E45 last night and this morning and that helped. He has raised spots on his front too - I queried this with the nursing staff at the hospital but as the spots weren't bothering J they said they were fine and possibly a heat rash. I'm not convinced that they're a heat rash - they looked a bit like his viral infection - but as J is ok in himself, I didn't say anymore.
It was a poor night's sleep. Maybe he was cold? I find it hard to judge what to put him in when we change from cast to no cast. Maybe it feels odd to him to be without it? He sleeps in a head-down kneeling position with the cast, but was able to lie on his side without it.
By the way, a friend has sent me a wonderful trio of CDs (this is a link to the product website) (Brainy Baby - Sleepy Baby, Dreamy Baby and Playful Baby). The Sleepy Baby one is a great help for getting J to sleep despite the complete change in our routine (no bath, no breastfeeding...). I would highly recommend them - they are enjoyable to listen to for adults as well and feature real instruments (I'm not keen on the Baby Einstein CD series which use synthesised and very edited versions of classical music). The Sleepy Baby CD is certainly very effective on me - it's hard to get going again in the evening after I've put him to bed as the music makes me feel very sleepy too!
Memo to self: although it's a 40 minute journey usually, we need to set off at least 1 hr 45 minutes before the 9am appointments, otherwise we end up grinding to a halt on the M6. I'm so glad I don't face a big commute on a regular basis! Fortunately J finds the lorries interesting if he's awake, though he usually ends up going to sleep.
I would have thought we'd be seasoned casters now, but the usual plasterer was away today, and the new one kept asking me to do what others had done in the past (eg put the towelling vest on him - which he doesn't like - and remove the stomach insert). I think I'd prefer to be the neutral party, just holding him and adding reassurance and hugs, rather than part of the whole treatment side, but maybe it doesn't matter to J. He cried a lot more today - and there are no photos as everyone there was involved in holding him still (anyway, you have seen how it works - it's just the facial expressions that change!). It seems higher on his front than the previous times. I wonder whether that will mean he gets more food in it? I hope it doesn't mean we have more problems keeping it dry.
By the way, I have found info on the web about the bandage used - this is a link to the product website.
"A fiberglass casting tape that does not set to a completely rigid state, but remains flexible and soft even when it is completely cured. Scotchcast Soft Cast casting tape consists of a knitted fiberglass fabric impregnated with a unique polyurethane resin. Exposure to moisture or water initiates a chemical reaction that causes the resin to set. The finished bandage will retain its shape while remaining resilient."
We went to the cafe afterwards and J relished eating a sausage again like last time. J gets so much attention there - lots of comments on how cute he looked today in his outfit. I chatted to one of the volunteers (see photo below). She has been volunteering on the Oncology ward for the past 11 years, coming in for one day a week. She spoke of how inspiring it is being with the patients. It reminded me of when I used to volunteer for Hospital Radio when I lived in Southampton - we went out to the wards each time we were there to collect patient requests and that felt like the most valuable part of doing it. I thoroughly enjoyed co-hosting the Arts show "That's Entertainment" as I got free tickets to all sorts, but I would imagine there were weeks when there was no-one listening at all!!
I then went up to the children's ward to get some more information about J's treatment. They have a fab train/car area which J explored (literally! I was just talking to the nurse, turned round and he'd clambered on top of it - the cast certainly wasn't stopping him climbing).
I'd prepared a letter for the consultant, but wanted to see whether the Spinal Nurse was able to clarify anything too. Both the Ward Sister and the Spinal Nurse were very willing to help, but it felt quite frustrating even so - I'll give more details about why below. I feel I need to know more so that I can ensure I'm proactive when necessary, but I don't know whether I'm asking the right questions.
I feel conflicted - it's great that he's being treated now (we jumped ahead by having a private consultation to start with) and they're all very good - but is this the best treatment for J? Are there more things I can/should be doing?
I don't have the exact list to hand, but these were some of the questions - the sections in italics are my thoughts now having chatted to the nurses:
1. What is the cast setting out to achieve? Is it to actively correct the spinal curvature or to hold the spine in place while J is growing? (hold it while we find the cause, though it might improve the curvature)
2. Will it be necessary to have a series of MRI scans? If so, how often should they be carried out? (it depends on the results)
3. Will this scan be sufficient to determine if the Scoliosis is progressive or will that require further observation? (probably not sufficient)
4. What will be the next steps a. if it is progressive or b if it is not progressive? (need to ask the consultant)
5. J has an appointment for his MRI scan next Tuesday. How much of the spine/brain/neck/hips should be the MRI scan cover? (the first x-ray J had was misleading because it didn't cover his whole spine and so we missed one of the curves - as Mr Marks has mentioned that the base of the brain can be part of the problem, it would seem logical to include that too. The answer was that the radiologist at Birmingham Children's Hospital knows what they're doing.)
6. I have read that scoliosis can also affect the alignment of the hips – do they need to be included in the scan? Should they be checked (or does the fact that he is walking show that they are normal)?
7. I am aware that so far we only have 2 x-rays and that rotation of the spine and abnormal front/back curvature is not shown on x-rays. Will the MRI scan reveal rotation and front/back curvature? (from what I now understand, MRI scans are good for looking at soft tissue but not bones, so I don't think it will - I suspect we will need an x-ray taken from the side?)
8. I have been trying to find out more about the technique that is being used, but have not found anything so far. What is the name of this technique and where can I find out more information about it? Is it being used elsewhere? Are there studies/research into this technique – if so, please could you give information. (the nurses called it serial casting - but on the web this term refers to Mehta casting with general anaesthetic, traction and plaster casts. Nowhere can I find anything about soft casts)
9. Will the serial casting and brace correct any rotation of the spine? (the plasterer today was simply squeezing J from the front and back while the bandage set. There is no subtlety - no referral to xrays to see where the curve is etc. The last plasterer said he could feel where he needed to apply pressure. But what about the possible rotation??? The nurse just asked whether I know there's a rotation. No I don't. And it doesn't seem to feature in any of the things that are happening to diagnose it!)
10. I understand that there is a waiting list for consultations to follow up the MRI results and so I wondered whether it may be possible to have another private consultation for that purpose as well as continuing J’s current treatment on the NHS? (the nurses didn't want to give a timescale - saying that if the MRI scan revealed something bad we would be called in urgently - but eventually I was told that the NHS waiting list to see the consultant to get the results is currently till DECEMBER!!!!! They are holding extra clinics on Saturdays to try and speed things up. It makes me feel sick to think that we will be carrying on like this for 6 months longer just because of a waiting list to see the consultant. If we can go private for that, it would be money well spent (I don't know if you can dip into both systems??? Do we have to have casts changed every 2 weeks and no bath or swimming until then??? That's not what Mr Marks originally said (3 soft casts depending on how things go and then a brace))
I found out much more about the MRI scan too. I had been told I could go in with J, but apparently what they meant was that I could go into the room, not the actual scanner (they used to let parents go in and lie with their babies on top of them, so they didn't need sedation, but the simple movement of breathing was sufficient to create a blurred image and now they prefer to do sedation). I will be able to hold his leg. He's having sedation in the first instance. Sometimes that isn't effective, in which case he will need to return on a different day for a general anaesthetic (I can imagine the waiting list!). If I see he's waking up then I need to let them know! It'll be very loud and I will have earphones. J may have cotton wool stuffed into his ears and taped on.
I haven't found information about the soft casting technique, but the Mehta casting websites and email support groups all emphasise the need to act swiftly with infantile scoliosis - that the watch and wait approach is not good. The outcome of what I was told today is that the current casting is really aiming to maintain the curves although it *may* correct it a bit. The Mehta approach is to straighten the spine. When the plasterer today told me that it was only a mild curve and she sees worse (and was implying that it'd be fine if he had a 38* curve for the rest of his life), I felt very frustrated. There aren't any alternatives on offer at the Royal Orthopaedic Hospital. They explain what they're doing, and say that the team of consultants has very good results. I don't know whether I should be pushing more or looking elsewhere or what. Or am I being too anxious? So hard to judge what's best - it's such a responsibility. I have no idea what a 38* curve (and the bottom 26* one - J's back is an S-shape) would mean in terms of back ache etc in the future. That does seem to be an issue among adults who had scoliosis as children. What angle is bad enough to affect an adult later on?
I have noticed that this blog is getting hits from all over the world as well as the UK (lots from the US, Australia, Japan, Brazil, Denmark, France and Germany). If you are aware of other treatments or have ideas I would be grateful if you could let me know via the comments!
I feel quite drained by today - when I'm with J, I am deliberately upbeat and treating everything as an adventure so he views the hospital experience positively. It's not that *he* has to be smiley all the time (that would be dreadful if I expected that) - it's important for him to know he can be sad or upset and that's ok. I'm sure there will be times when I can tell him that mummy is feeling sad today and it's because of X and it's ok to be sad. However, I do not want the hospital experience to be scary or anything so I am upbeat about it all - it is quite tiring though!
To finish - photos and videos from the evening: a lovely video of J taking the cat for a ride in the evening after the treatment and one of us enjoying tickling (he loves being tickled by my feet - he seems to find it even funnier than with hands! Just listen to him chuckling :-) ).
((By the way, he had slight redness under his chin and at the back of his head - the cast really is much higher than the previous 2 - it didn't seem to bother him too much though.))
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((By the way, he had slight redness under his chin and at the back of his head - the cast really is much higher than the previous 2 - it didn't seem to bother him too much though.))
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