1. Reflux. Bane of my life. Admittedly we are fighting off a virus now and cutting incisors which never helps, but since we last saw him we had one enormous flare-up before Christmas which very much affected her respitory system as well as playing havoc with her motility as well as a vomiting bug which left us with elevated reflux for weeks after it went. We are having a flare up again; not as bad as the end of last year but we are having problems tolerating the night feed which unfortunately contributes to half of her daily calorie intake as well as lots of coughing and some gagging and fountains of stomach contents. Every day for the last week and a bit, she coughs when I turn the night feed on at about 10pm and somewhere between 5am-7am near the end of the feed will wake up screaming and retching until she is sick everywhere. I've reduced the feed, tried watering it down as it is quite heavy (1.5 calories per ml, double a standard formula) and reduced the rate. Some nights she has been sick throughout the night too or woken fussing and in pain. The blue inhaler has never been far from her side as it makes her breathing go funny. For want of a better word, she starts sounding like a very angry choked up cat and has mild recession and tracheal tug present. Our community nurse is in the loop and was concerned about her aspirating on the reflux pre-Christmas. We sat it out and it eventually subsided. Hopefully this one will too....soon! We are on max meds and she sleeps on an elevated slope, so we are slightly running out of ideas of how to help it. I suspect that an entirely liquid diet does not help!
2. Results from blood tests at immunity. Last time, some bloods revealed despite being up to date with her vaccinations, her immune system was showing weaknesses for tetanus and pneumoccocus antibodies. They drew further bloods to determine which particular strains of pneumoccocus she was most vulnerable against to see if she would benefit from an early booster. There are two boosters you can get; Prevenar 13 and Pneumovax II. It may be that the antibodies she lacks are in neither vaccine, in which case I just need to pray she doesn't meet that virus anytime soon. It was a strain of this virus that landed her very poorly in hospital last August, so I know even at 2 it can do a fair whack of damage.
3. Sleep study. This we had done in November after several botched attempts. It went pretty well, nothing major happened and I had almost forgotten about it. The letter came through this week with the results in brief. Whilst nothing severe happened, there was evidence of upper airway obstruction and clusters of oxygen desaturation linked to 'central moments' which means apnoeas, where her brain forgets to tell her body to breath. I already know from the bronchoscopy that Wriggles has a hypotonic pharynx which won't help as well as large adenoids and tonsils, plus reflux is commonly linked to apnoea. The report recommended discussing sleep history and a good look at her tonsils and palate in clinic. I genuinely have no idea what the paeds will want to do with this study; file it away for now, request a repeat in a while, sit tight, ignore it, think about treatment... I wasn't gigantically shocked by the confirmation she does have some sleep issues, albeit minor. I know from sleeping in with her that she is a noisy, snoring, restless sleeper who sometimes holds her breath. It is not unknown for me to be up in the middle of the light with a torch, frantically checking her colour. Partly, I accept I am over anxious. Partly, I know she has a tendency to deviate from normal boundaries.
4. Oral vs Tube feedings. Unfortunately, this is one area that has really lapsed. At the last appointment, we were in a 'curious' cycle. Wriggles was maybe trying up to almost 10% of her intake from eating; mainly fromage frais and Quavers. Since then, we have moved back into a state of being really aversive again and what she will even put to her mouth has dramatically reduced (mainly Ritz crackers and cheese flavour rice cakes). If we are lucky, we get maybe a few nibbles a day-teeth marks really. She will still handle food, and sometimes will look enthusiastic...up until the point it goes to her mouth. Then it is abruptly dropped like a switch has been turned off. The only time she will try things is generally if a LOT of distraction is offered and she ignores the fact there is food. Incentives only last so long and there is no consistency. I suspect he is keen to think about dropping a feed soon to try and stimulate hunger. Since we last saw him, I have played around with volumes and reducing intake by a little and stretching the time between feeds, all with no results so I am a bit more nervous about this.
5. The physio has mentioned she would be curious to try a trial of Baclofen, a drug aimed at reducing spasticity in cerebral palsy patients. It is essentially a muscle relaxant. Our other paed has been informed and would be the one to prescribe it. Allegedly he has been going to give me a ring for the last few weeks about it. I would however prefer to run it past our respiratory paed, as I respect his opinion slightly more and he seems more in tune with Wriggles. After reading up on Baclofen, I would rather not go down this route at all. It should be simple enough to say that to a medical professional and have them say back, yup you mum know best, fine by us. They don't. They argue. A LOT.
And whatever else he wants to check off! So far he has always been very supportive and I hope he continues to be. It has taken such a long time to find someone who seemed to genuinely care and make an effort. Back when we met him, when Wriggles was very poorly in the summer, he stayed far beyond his hours talking to us and supporting us which meant such a lot. Every time we meet someone I trust, I get nervous that they will let us down. I don't know what is best, I am not a medic. My job is to fight for the best care. I know I will not stop trying because I love Wriggles. Professionals don't have that incentive, we are names, numbers, files, cases, patients. They can easily forget things, get things wrong and not be there to pick up the pieces. So many times we've been sent off on the wrong tangents and spent months trying to get back to the right place or track down the right doctor. Let's hope that is behind us now.
|Please keep me well, I have lots of menacing planned!|