AT LAST!!! Anyone who knows us well will know that we have been waiting for a long time for this… and so it deserves a whole blog post!! Carry on reading to find out how we have finally made progress with some of Ori’s eating, general health, energy, and growth.
We had been waiting for the Ear Nose & Throat (ENT) department to review Oriana’s case for years and had to fight so hard to get a sleep study, despite having serious health concerns over her breathing, health, and sleep since she was a baby. This appointment was a long time coming, and really felt like an uphill struggle to get seen by the right people.
Unfortunately this is sometimes what special needs parenting looks like; going back and forth to various doctors and paediatricians, fighting for your child’s case, chasing up referrals, feeling that your concerns are being dismissed or belittled, and becoming completely fed up with the whole process whilst watching your child struggle. On top of that, occasions came round where we were hoping to take Oriana in for observations but at the last minute were told that it may not be able to go ahead due to her suffering with the very symptoms that the treatment would help fix!! It was really becoming a huge issue for us, and Oriana’s quality of life was impacted, as well as her needing so much more care and support with this.
Below are the main symptoms and issues we were experiencing whilst we were waiting (over a period of years) for the ENT appointment:
‘Failure to thrive’: These are the words written against one of the bullet points from the list of ‘Diagnoses’ on Oriana’s latest letter from the ENT surgeon. Basically meaning Oriana’s growth and weight gain was dropping right off. Stefan & I had been concerned for a while - over lockdown and throughout most of 2021 Oriana didn’t seem to put any weight on, and anything she did put on after that was minimal. At 5 years old she only weighed 1kg more than the 18 month old we were fostering.
‘Severe obstructive sleep apnoea’ - again, another bullet point under the list of diagnoses on the ENT surgeon’s letter. This meant that when Oriana slept, she struggled to breathe comfortably. This was audible; squeaks and gasps from her throughout the night, as well as constant restlessness, light and disrupted sleep, being tired throughout the day, slow growth and weight gain, and the sleep study results confirming oxygen levels dipping throughout the night as well as elevated strain on her heart. This was particularly concerning to us as Ori already has a hole in her heart and we weren’t sure how this would impact on that. After a sleep study confirmed that Oriana was having 30 ‘events’ an hour (i.e. stirring on average every 2 minutes to raise her consciousness enough to re-open her airway to allow comfortable breathing again) we were given a CPAP mask at night (as mentioned in this blog post where I recap 2022 for Oriana), but this was only able to make so much improvement.
Eating issues!! Oh goodness, this was a particularly draining symptom. Eating was hard work for Ori, it took her a long time as she found it really hard to breathe and chew at the same time. When she chewed and/or swallowed, food hit her tonsils and caused her to cough and splutter. She would tire quickly and this made meal times take even longer, it also made her completely reluctant to hold her own fork or spoon as she tried to conserve energy and make meals as easy for her to get through as possible. This meant for every meal we had to hand-feed her ourselves; there was no putting a plate down in front of her whilst we got on with anything else. We had to use bargaining tactics, distraction tactics, move her onto our knee when she got too tired to sit straight, start dinner times early etc. just to get calories into her.
Congestion from September through to Easter, which caused her skin to be sore from wiping her face constantly, and sometimes was so thick it caused her to vomit. Even with regular suctioning, breathing was hard for Oriana throughout the winter due to this congestion, and it would usually result in needing antibiotics as it would turn into an infection. This congestion was also assumed to impact her hearing (Ori already has some moderate hearing loss which she wears a hearing band for) and make that even harder for her over the winter. It could affect the clarity of her speech, squash her appetite, and made sleep even more broken than it normally was.
Eventually we had a breakthrough and were able to be seen by the right departments - below I break down what happened next / what caused the surgery to be necessary:
Despite all the symptoms listed above and letters of concern from the Paediatrician and Speech and Language, no one seemed to want to pay Oriana’s case any attention until we eventually got a sleep study. Again, even this took years and years - I had been flagging up concerns since Oriana was 5 months old about the way she would ‘squeak like a guinea pig’ all night and gasp, and sleep in a backwards/arched position to try and access the most open position for her airways. I don’t know why it was so hard to get a sleep study, or to get taken seriously by ENT, as sleep apnoea is really common in children with Down Syndrome, and is something that needs to be taken seriously due to how it impacts so many other areas of someone’s life and health. Anyway, eventually after visits to allergy clinics, trials of medications which did absolutely nothing for Ori (steroids, antihistamine, and countless antibiotics with no long term relief) we were seen by the sleep clinic. Stefan & I were 99% sure Oriana had sleep apnoea, and we were also 99% sure it was due to (or certainly made significantly worse by) her tonsils being so big we could see them almost touching when she opened her mouth.
The sleep study confirmed our suspicions - she had severe sleep apnoea. This diagnosis started the ball rolling, and within a month or so of this we were then able to be seen by an ENT surgeon. The CPAP mask at night could only do so much for Ori, and so they looked at her tonsils at last, and recommended that her tonsils and adenoids were removed.
Down Syndrome Fact: Sleep apnoea is common in those with DS due to characteristics such as a relatively small mouth / small face / small passageways behind the face vs. proportionally large tongue / large tonsils. This means a tonsillectomy is a reasonably common operation for those with DS.
The operation and recovery:
The surgery was arranged at very late notice, but we were pleased to have got an emergency appointment. After a pre-op phone call a couple of days before, we arrived on the ward for 7:30am. The ward she was placed on was the High Dependency Unit, as Oriana would need her CPAP machine post-surgery. Oriana wasn’t allowed anything to eat or drink for a certain time period before the operation, so we made sure we followed this advice.
Ori was gowned up (very cute!) and then taken down to theatre; Stefan carried her down. She was given general anaesthetic, and then off she went. The operation took about an hour, and then shortly after that I was called down to Recovery.
Once Oriana was awake she was very angry; thrashing and shouting and crying. Apparently this can be a normal reaction to the anaesthetic and after an hour or so this wore off. Oriana had been given strong pain medication when she was in theatre, so once she was out and on the ward it was a case of alternating Paracetamol with Ibuprofen to make the pain manageable. She was very tired and napped a lot, snuggled up in our arms. Once all the medication had worn off and she seemed to really wake up, the nurses encouraged her to eat. They advised against foods like ice cream and yoghurt, instead recommending textured food like sandwiches and fish fingers (it seems this reduces infection, in comparison to soft dairy foods). Oriana was very reluctant to eat at first, but I’m not sure if this was because of how drowsy she was. Once she got going, she seemed fine and on the first day didn’t really complain of any pain when swallowing.
She stayed overnight in the hospital (I’m not sure that anyone who isn’t on a CPAP machine would need to do this?) and her sleep was fine. Once she was able to show that she was eating and drinking well, and her observations were all within a healthy range, they started to talk about her being able to be discharged and sent back home!
We were told that her recovery would take two weeks, and that she would need to be off school for the whole duration of this. We were also told that painkillers should be given regularly for the first week, and then as needed after that. In all honesty, the first week was pretty rough. She was in quite a bit of pain, holding her ears and throat and asking for the doctor, and with a very soft voice. But during the second week she slowly began to pick up (although we still had some quite painful days) and her energy slowly began to return to where it was. Some food must have made her throat more sore than others (she didn’t want bananas for example, which she usually loves), but on the whole her appetite was ok. I think the CPAP machine was uncomfortable too whilst she was recovering, so lots of water and painkillers were needed at bedtime to start with. But all in all, Ori handled it like a superstar and the benefits far outweighed the discomfort she experienced during her recovery period.
Life since:
So firstly, Oriana is currently still on her CPAP mask, although this will be reviewed. They advised they would wait for her healing to be complete and would book in another sleep study at a later date to see if there has been any improvement in her sats at night… so watch this space!
We have definitely noticed improved eating for Ori, which we are over the moon about! This is because it is now so much easier for Oriana to eat and breathe at the same time, so she is able to finish her meals more quickly which costs her less energy and means she is actually able to eat more due to not getting over-tired. She has even shown more inclination to eat independently and feed herself using her hands or utensils! The latter point is still something that we will continue to work on, as low muscle tone still makes this tiring for Ori and she often prefers to not use her energy in this way. She also can be reluctant to touch or feed herself certain foods due to the sensory aspect of this.
Less coughing and spluttering when eating and drinking, because food and drink is no longer making contact with her tonsils as she tries to move it around her mouth. Not only is this bound to be more pleasant for Ori, but it is definitely more pleasant for us to not be splattered in chewed up, soggy food every few minutes each time we feed her!
Clearer speech! This one is something we were not expecting at all - we suspected that her eating, sleep, weight gain, growth, and energy were all being impacted by the size of her tonsils and how hard this made lots of different things, but we didn’t realise it was impacting the sound of her voice. Since having her tonsils and adenoids out, multiple people have commented on how much clearer Oriana’s voice and speech is. A totally unexpected, but very welcome, side effect!
We are almost certain we have noticed Oriana has more energy since the operation. We hope that this means that she is getting better quality sleep (as well as her day to day activities being a bit easier for her as breathing isn’t so hard work) but we will have to wait for the sleep study to confirm this.
Oriana has put weight on!! A whole kilogram in a month, whereas before weight gain was very slow and hard for Oriana. This is really good progress for her.
All in all, we are really pleased with the changes we have seen in Oriana just in this short time since her recovery. It was such a worthwhile operation for her and we really hope that life is that bit easier for her now, with her energy able to be saved for having fun with friends and learning instead of just trying to survive!
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