Browsing Tag

GOSH

All about the eyes

Posted on 7th February 2017

Last Wednesday we went to Great Ormond Street Hospital again, I’m beginning to know that journey now from train to hospital without taking out my phone for navigation. The plan for the day was to attend Ariella’s ophthalmology appointment, this really was just to get a good overall picture of any problems going on and covering all the bases. I haven’t had any concerns about her eyes for a while now, she did have a squint when she was younger and her eyes were checked to be okay.

Knowing it would be quite a long wait and the appointment was around lunch time, I decided to take Ariella for some lunch at Burger King. She doesn’t get it very often, usually if we are at a service station on our way somewhere distant. She had never had a chicken nugget up until this point, I feel I probably should have rectified this situation sooner and made her a homemade version.

Ariella enjoying a chicken nugget children’s meal in Burger King

GOSH does have a play area which is a marked improvement compared to the last hospital we went to however last time Ariella was only six months old and really would just fall asleep in the stroller. I remember taking this photo last time, they use drops to dilate the eyes and for ages they really can’t see very well. It was such a different experience this time around as Ariella was more alert, she wanted to play and watching her try to navigate her iPad after the drops was quite intriguing. She would bring her face really close to the screen and take much longer to try to decide what to press, I think it must have been very confusing for her.

Ariella six months old after her first eye test

After about an hour arriving Ariella was called in to see the optician, who tested her eyes with games. The games were far more interesting this time around and consisted of large cards with one basic outline of an image (like a boat or house). Ariella was to look at the image which was in varying locations on the big card held up. She did these very well and quickly went through the cards.

They also had some neat little light up torches in the shape of animals, the light is directed at the eyes and the animals keep the children distracted. On this part of the check there was nothing to note, Ariella seemed to be using both eyes okay although she wouldn’t let me cover her eyes very long to complete this task. Next we were directed back out into the waiting area to have some eye drops popped into Ariella’s eyes to dilate them enough so that the Ophthalmologist can see the back of the eye. Each stage involved quite a wait, I think we probably waited another thirty minutes before we were called to have the drops put in. When the nurse did this she warned me that they might sting, however Ariella didn’t cry or notice the drops at all. The nurse was quite shocked, although it didn’t surprise me too much.

Once again we were sent out to the waiting area to wait for the final consultation, after a little while we were called again. By this point we had been waiting for three hours and although I came prepared with the iPad even this was wearing thin with Ariella. She was tired, it was late afternoon and she had only napped briefly on the train journey in. We had left home at 10:30 and were still “out” at 15:30, very out of routine for her. She coped marvellously up until this point, with the carrier, playing and not having any kind of tantrum. However her patience was wearing thin and I couldn’t blame her. We entered the room and the Ophthalmologist had Ariella’s MRI results up on his screen, he quickly checked Ariella’s eyes and said that there was no sign of Hydrocephalus which is the main concern for him. The extra fluid for children with this can apply pressure on the optical nerves.

All in the result was, mild astigmatism in both eyes but nothing to be concern about. We will need to keep an eye on it but it’s not something we need to go into hospital for. Both of us have a little bit of astigmatism so I wasn’t concerned. We don’t have to go back to that Ophthalmologist again, sounds good to me!

Sleepy toddler on the train.

Being Mum Lifestyle Parenting Weekly Update

Twenty one months old and a whirlwind of a week

Posted on 12th January 2017

Given when I left you I feel like you are in need of a progress update. We were able to avoid heading into the children’s ward at the local hospital by a few hours, luckily Ariella’s physiotherapist had time to catch up with the messages I had left just before Ariella’s Hydrotherapy session on Wednesday. I got a call in the morning by luck her therapist was going to be in the Hydrotherapy session and would be able to check out her left leg by pool side. Excellent, I knew our doctor would be calling me back in the afternoon and if she hadn’t been seen then it would of meant clogging up the hospital system.

Ariella has been very temperamental lately, she switches from happy to fearful in most circumstances which can be quite difficult to manage. Usually this makes her arch her back and as of late she has taken to biting. We took her swimming on the weekend and immediately entering the changing room she became distressed and unconsolable, it’s quite difficult now she is bigger to get her dressed when she is in this mindset as she cannot stand unsupported and the pull down changing mats are too small for her or don’t support her weight.

So I was quite prepared for the same kind of result on Wednesday and as expected she screamed the place down. Luckily the Hydrotherapy pool is situated in a special unit and they have a very big changing bed, this makes things a lot easier for us. I was hoping that her physiotherapist would be able to check her out on the changing bed too but Ariella wouldn’t let anyone touch her without kicking and screaming so instead she opted to check her hips in the pool.

This worked nicely, in the pool most of the time Ariella was happy enough unless I tried to lie her flat on the water – she used to be quite happy to do this but for some reason she wasn’t this week. The session has a high ratio of therapists to children, we are normally just a class of three but today only the two of us had turned up so we had 1.5 therapists each. The swim exercises are much like Waterbabies if you’ve ever watched those, but slower and with some additional aids put in place in case the children are unable to support themselves in the water as expected.

After the Hydrotherapy session ended I walked Ariella up and down the side of the pool so that her leg turn could be inspected. She is still holding on leg out towards the side rather than straight, but her muscles seem to be okay. The therapist said that from a physiological point of view she is happy and she couldn’t explain why the sudden change had occurred, but agreed to see us next week in clinic for a physiotherapy session. Good news! Ariella screamed getting dressed and while I was getting dressed and then we dashed back home in time for our Portage assessment.

Portage (Early education support service):

This service is available to you if you have children aged up to three and a half years with significant developmental or other needs. The portage teacher or support worker will work through activities with you, supporting you to help your child’s learning and development.

The assessment establishes whether your child qualifies by asking lots of questions about them and how they would typically react to certain situations. One of the nice things about this service is it’s home based, which is one less appointment to plan travelling to. The bad thing about it is that if you are accepted then the waiting list is long, but that seems to be the case for quite a few services at the moment. The assessment went well and although we don’t have a formal letter yet the lovely lady indicated that from my answers Ariella should qualify. One thing this did establish is where the line between Portage and Occupational Therapy (OT) sits, they are two different services and I’m told that OT in our area has such a long wait list that we would be best to look privately, I think we will consider this.

Once the Portage assessment was over (it took a few hours) then I called the doctor back, I had missed their first call as I wasn’t expecting them to call me back until 4pm. The doctor was happy that Ariella had been seen and is hopeful that physio next week can work to progress with Ariella’s leg. If progress isn’t made then it can be considered further, I asked whether it would be prudent to contact her Neurosurgeon team to update them too and she agreed (which reminds me I need to do that!)

After getting off the phone I found I had two emails in my inbox, one from the Ophthalmologist at Great Ormond Street (GOSH) and one from the records department at GOSH. The Ophthalmologist was just letting me know that they were able to bring Ariella’s appointment forward to early February instead of on the same day as her Neurosurgery appointment. This is good because initially she was assigned an appointment hours before Neurosurgery which while would be great from a travel perspective wasn’t that logical as we were to discuss the results of the Ophthalmologist during NS. As these things tend to be I emailed to ask whether the report would be available in such a short time, I thought the answer would be no and as suspected it was.

The other email from the records department was confirming that they had received my form requesting the MRI results and Radiographer report but would now need payment. Lucky for me I had already sent it separately along with a bunch of copies of our identity documents and I knew the letter would hit their desk on Wednesday or at the latest today. I replied immediately to let them know this and I got a pretty swift reply saying they would apply for the results immediately. Great news again!

I had a few lovely clothes orders arrive on Wednesday too, finishing off Ariella’s holiday wardrobe which I’ll post about imminently. I’ve been quite sad that I haven’t been able to exercise as I’ve been so unwell, but my Lunchbots order also arrived so I think that has inspired me to get back into the healthy kick mentality and I’m more enthusiastic than ever about how these little boxes will change our lunch eating habits. I ordered one for all of us along with their sauce pots so we can eat bento style, once we’ve started doing it for a little while I’ll update you with a post.

That was Wednesday, I was feeling pretty rough during the course of this but needs must. We did manage a park visit purely because I felt like Ariella needed to go outside and see some fresh air. That evening we unintentionally had to order takeaway due to some very poor quality sweet potatoes (thanks for that Tesco) but I feel perhaps it was for the best. The best thing was by the end of the evening we had resolved quite a few concerns, Ariella’s leg had been checked, the MRI results were being actioned on (they quote forty days for this so knowing it was being dealt with now was very good), the portage lady had been very supportive and I was finally starting to feel better.

Today Ariella woke with a fever, she hadn’t been eating much over the last few days so perhaps this is why. She started coughing in the night and vomited her food up yesterday evening. I knew when she let us lie in until 7am that today was going to be a slow day, perfect! We had nothing in the diary and I was very thankful for it. We watched Harry Potter films and Ariella spent the day playing on her iPad, watching TV and playing with a few toys. We’ve been on a rotation of Calpol and Nurofen to keep her fever low, whenever it spikes she vomits.

Two very good things happened today, I heard from the GOSH records department to say that everything had been received and that they were posting a CD and the report to us recorded delivery as well as a password due to the CD being encrypted. This was amazing news, soon, very soon after waiting so many months we will have a huge amount of clarity over what was seen on the original ultrasound of her brain. For me having seen the ultrasounds the very best outcome I allow myself to consider is that its just the Corpus Calloum and is just slightly thiner than expected. The worst outcome could be more abnormalities or something life limiting flagging up. But I feel that we need to know and that I would prefer to know in the comfort of my own home so I can be prepared when we speak to the Neurosurgeon in February.

The other amazing thing that marks the 12th of January 2017 as an eventful day is that it snowed today. This is the very first time Ariella has ever experienced snow, we took her outside and allowed her to see it and feel it. At first she was a little unsure but I think by the end she could see the beauty in it.

Being Mum Lifestyle Parenting

D Day – MRI

Posted on 3rd January 2017

Last night we set our wake up alarm to 4.45am, Ariella needed to eat her breakfast before 5am as per the instructions on her letter and would need to have her last drink by 7am. As we were heading to Great Ormond Street Hospital (GOSH) in Central London we left our house at 6am, giving ourselves a little buffer of time if the traffic was poor. We weren’t sure how it would be given it’s the first day back to work for many after the Christmas break.

Driving was definitely a great idea, we are quite used to the London driving scene having lived and travel through it on many occasions before Ariella was born. We found a neat privately rented parking space which was on an off street from the hospital, safe in the knowledge everything was in hand. When we stepped outside it was immensely cold and dark, this morning was frosty and sub-zero. The car took a long time to defrost before we could set off, Ariella however was coping marvellously at this point.

The drive up to London was uneventful, we found the parking space with no problems and arrived at GOSH with an hour to spare. Given everything was still closed we watched Cbeebies in the main reception for a while before eventually heading down to the MRI department. From here we met the nice lady who was doing the sedation for Ariella, we opted for this instead of general anaesthesia as the recovery time is quicker and the risks are less.

In the second waiting room of the day – Waiting to be sedated.

What this means however is Ariella needed to swallow an amount of nasty tasting liquid, she was prepped with all the little monitors and the liquid was measured based on her height and weight. But when it came to taking the medication that’s when things took a turn for the worst. Ariella was sick half way through her dose, she probably only had about half or less of the original dose. We were told to wait and let her try to sleep to see if it was enough as the MRI would only take twenty minutes. She did fall asleep but not deeply and would wake when moved, they decided to top up her medication but just as the doctors came in to do so the fire alarm sounded. You couldn’t make it up, there she is fast asleep on a hospital bed with a flashing red light above her – did she wake, no. They thought great she doesn’t need a top up! But once the alarm had stopped she rolled over, in between this the doctors went to go see if we could use the MRI machine next as we had missed Ariella’s slot in all the sedation woes. Another patient was about to go in and given Ariella now needed a top up we would have to wait.

I think we waited in that sedation room for about two hours from the very start which was all very fast and positive to the finish which was Ariella eventually being wheeled out fast asleep. They had put some little ear defenders on her, as everything has to be made of plastic they were neat little stick on ones for each ear and an ear plug inside. She had a breathing mask on too which would monitor her breathing while in the machine and finally a little tiny heart monitor made of plastic too attached to her finger. Ariella when awake was fascinated by the little red light this makes, when she woke she swirled her hands back and forth making the wire move around.

I couldn’t go into the MRI scanner room with Ariella so Jamie went instead. Inside he was first checked for no metal, they weren’t bothered about little things like what’s in his glasses or on his zips – but more like loose change, dental implants etc. After that he lifted Ariella from the gurney trolley onto the MRI machine – doing so actually woke her up. The radiology staff were confident though that when she went under the machine she would fall asleep given she slept through most the loud noises of the fire alarm and was now equipped with ear plugs and ear muffs. Her head was fixed in place and extra ear protection was added, and then she was moved into the main part of the machine. Jamie was handed a little alarm to use which he was impressed with, because it worked off air pressure (think of a bubble at the end of a tube) – given that no metal could go in a machine so a traditional panic button wouldn’t be allowed. He was told that if she started wriggling or crying to squeeze that to activate the alarm.

After this the actual imaging started – each 1 of 4 taking about 5 minutes each, although he doesn’t remember which each image said it was along the lines of different parts of the head or upper spine. Also with him in the room was the anaesthesia nurse who monitored her vitals throughout from a monitor attached to her foot, while the radiologists were in a separate room filled with monitors and space-age looking equipment. Inside the MRI chamber there was a mirror above her head so Jamie could make out her eyes, but it was slightly too dark to see that they were open – only that her head wasn’t moving (a very good sign!). As time went on Jamie was feeling more relieved in there given that there was no need to interrupt the tests and she seemingly was staying still, so he took the time to let his eyes wander around the room and marvel at all the specialist equipment that had been purposely built to not have any metal; particularly impressed with the bubble alarm, metal free headphones, and the projector/mirror combinations allowing for a DVD to be played from afar.

After a while, the radiologists came in with a big thumbs up to say all the imaging completed successfully, and she was removed from the chamber to reveal she had indeed been awake the whole time! Either she was too drowsy or too scared to move – or just perhaps knew what she just knew what she had to do. At this point we were all moved to the imaging recovery room, where Ariella rested and had some food.

We thought that it would take ages for Ariella to wake up but because of the low dose by the time she was put into recovery she was starting to snap out of her glazed over look. This is where she became fascinated with the beeping pulse monitor and looked like she could use a little something to eat. We brought a few of her favourite snacks with us, knowing she would definitely like them and that they wouldn’t be rejected. Cheese chunks and those Goodies toddler spicy tomato healthy crisps, she loves those. Once Jamie could leave us for a little while he went to Starbucks to retrieve two very well-earned coffees and some toasted sandwiches, one for each of us. Ariella doesn’t tend to get that sort of thing so she wasted no time munching down half a melted cheese and ham toastie.

We were told that we would need to wait until it had been two hours since she took the final dose of the sedation medicine, which was a lot less time than we thought it would be. Recovery compared to the rest of the day passed quickly and before we knew it we were heading on her way home, in the warm car, light traffic and one sleepy toddler whom currently as I write is napping away in her own cotbed.

I couldn’t get a copy of the scans straight away but have applied for them through their records department. We will see the neurology team in late February to discuss but If they find anything that needs immediate action we will be told sooner.