A stay in the hospital – 23-29 October
After a stressful weekend in which Lil Z refused virtually all food and drink despite the fact temperatures were over 30C, I was thankful to see the speech pathologist on Monday. However, he added to my concerns, saying he wasn’t happy with Lil Z’s swallowing, alertness levels or the fact she had been refusing both purees and bottles for nearly 2 weeks. He said he would contact Neurology, Speech Pathology and a Dietician at the RCH to follow up with me. At home, I decided not to wait, but to contact the RCH myself and also to schedule Lil Z an appointment with the GP.
The next day we saw the GP first thing and Lil Z was diagnosed with a chest infection. Our GP weighed Lil Z and she had lost over half a kilo. We then headed for the RCH and had a joint appointment with the Neurology Registrar, Dr David, who has been looking after Lil Z for the past few months and the speech pathologist who diagnosed Lil Z’s swallow problems. Of course, just to prove me wrong, Lil Z was quite happy to drink a whole bottle in front of them. The speech pathologist listened to her throat and chest while she drank and was happy that she wasn’t aspirating fluid (thank goodness). However, Dr David was unhappy with her overall condition and decided to admit her to hospital.
We spent the rest of the day in Emergency waiting for a bed up on a ward. They put a nasal gastric feeding tube down Lil Z – a terrible procedure. She hated the tube and managed to pull it out twice while we were in the ED. We also saw our lovely Neurologist who reduced the level of Trileptal to try to make Lil Z more alert.
Around 5pm, we were given a bed on Paterson Ward. QB and Vegemite turned up with clothes and my computer, but didn’t stay long as Vegemite needed to go to bed. I stayed on the ward with Lil Z. It was a long night as she hated being fed through the tube but was on 4-hourly feeds, which were given slowly over the course of an hour, and well as hourly obs.
They continued NG feeds on Wednesday and she refused to take anything orally. On Thursday decided to remove the tube in order to get her a bit hungry and thirst to encourage her oral intake. The dietician put her on PediaSure, which is effectively a high-calorie meal supplement for babies and children. Thursday was stressful as she refused everything except a few sips from the bottle.
On Friday she drank a whole 200ml bottle of formula in the morning. Hurrah! She was grumpy all morning, however, so the nurse recommended that I take her out for a walk in the pram. I walked over to the Royal Women’s Hospital (they have a couple shops there, whereas the RCH has none). I took the indoor route back and just as I arrived at the children’s side, Lil Z started having a seizure. Unsure what to do, I took her to the nearest ward and asked for help. Ironically, it was McConnell Ward, which is the neurology ward.
After a bit of chaos (it was an emergency but we were on a ward, but not our ward – which seemed to cause no end of confusion), Lil Z was given Midaz, Dr David arrived (he was also the only one who could get a canula in her hand), she was hooked up to working monitors and then came out of the seizure as she was being given a second dose of Midaz. Lil Z then had a terrible postical phase where she screamed relentlessly for 5 hours before falling asleep.
The next morning, she had another seizure. Unlike the confusion of the day before, this time it was all very straightforward. There was a paediatrician seeing the little boy who shared a room with us at the time and came straight over. He managed the seizure with a registrar and the ward nurse supervisor. It was all very calm. She was given Midaz through her IV and it was amazing how quickly it worked. One moment she was seizing, the next she was unconscious / asleep.
On Monday I had a difficult discussion with Lil Z’s paediatrician. He said that we were at a point where either she went back on the NG tube and stayed tube fed for the foreseeable future but regained her weight or we tried to persevere with bottle feeding and she would probably lose more weight before she began to gain again. He said it wasn’t a decision he could make, that this one was up to me. I said that I didn’t want her to be tube fed unless it was necessary for her health. He agreed and said if Neurology had no issues, he was happy for Lil Z to go home.
In true hospital fashion, I then spent the rest of the afternoon waiting for Neurology to arrive. They too were happy for us to go, so we said goodbye to Paterson Ward and finally returned home.
A visit from the physio – 16 October
How fortunate I feel that here in Brisbane I not only have access to excellent allied services for Lil Z, but that they will make home visits. Lil Z’s last physio has moved on from FECS (Family and Early Childhood Services, the department of Disability Queensland that provides Lil Z’s allied services) and the remaining physio only works on Tuesdays – a day that is just unworkable for physio appointments. Another physio will be hired in due course – we hope!
However, we rearranged our schedule this Tuesday so that the physio could come and do an assessment of Lil Z and come up with a management plan for the interim. She was a really lovely woman and Lil Z seemed to instantly like her, so its a pity that our schedule doesn’t allow us to see her on a regular basis.
The outcome of the assessment:
- Arm wraps – she brought us two cloth and velcro wraps with steel rods in them. They look a bit like the support wraps people use for sports injuries. The idea is to wrap Lil Z’s arms in them, so she is forced to keep them straight. It sounds horrible and cruel, but it will have two key benefits. First, it should help her to learn to prop herself on her hands, rather than her elbows – a crucial skill if she’s going to learn to sit or crawl. Second, it will reduce the amount of hand wringing and finger chewing that she does. The physio explained that the more repetitive actions are done, the stronger the neural pathways for doing those actions become. Interrupting the repetitive actions might help reduce them and encourage her to do other things instead. I strongly suspect, however, that she is going to hate them, since she hates anything that prevents her from putting her hands in her mouth.
- Shoes – she suggested that I get Lil Z a proper pair of trainers to help keep her feet in the right position and to provide her better grip for some of the exercises we need to do.
- Learning to put pressure on the soles of her feet. She showed us some exercises to do. She also recommended starting to get Lil Z used to feeling different textures with her feet.
- Standing frame – again, Lil Z is not a fan. It is a piece of equipment where her lower half is strapped in, essentially holding her in a standing position. She hates it. However, she needs to start standing upright and bearing some weight on her feet to ensure her hip sockets develop properly (the ball and socket formation of the bones is only formed by standing, so if a child is never in the standing position, the socket doesn’t form properly).
- Swinging – well, physio doesn’t have to be all hard work, right? The physio and speechie have loaned us a supportive swing that I’m going to get QB to hang on the downstairs deck. Swinging will hopefully be enjoyable and also a great way to practice turn taking and asking for “more” as well as letting her explore using her body in a new situation.
A trip to see the speech pathologist – 15 October
With the feeding problems getting no better, I was desperate to see the speech pathologist in order to discuss if the problem was related to Lil Z’s swallowing problems.
The speechie wasn’t sure what was the cause of the ongoing struggle with food, but he managed to reassure me that her swallow wasn’t becoming worse – so she isn’t rejecting food because it is choking her. In fact, after watching her neck a bottle of milk, he commented that her swallow is surprisingly good and that she has a good cough as well (most people cough if food or liquid “goes down the wrong way” which generally serves to expel it. That reflex with Lil Z hasn’t always worked as well as it should).
He had two hypotheses about why she might be refusing food. The first is that because her anti-seizure medication is making her drowsier than normal, it may also be making her feel less willing to eat. After all, if you are exhausted, you won’t appreciate someone trying to stick a spoon in your mouth. If this is the problem, then the only way to resolve it is to adjust her medication.
The second hypothesis is that she is becoming a stubborn toddler and wants to be able to play a greater roll in feeding herself, but she’s unable to do so. Most 18 month old children would not be spoon fed, they would be eating with their hands. Lil Z, however, cannot pick up or hold things, so is unable to feed herself – but this doesn’t necessarily mean the desire to do so doesn’t exist. To test if this is the problem, we’re going to try to engage in more “messy play” with food, hopefully helping her to realise that she can stick her hand in a glob of puree on her highchair tray and then stick it in her mouth – which would be a major accomplishment for her.
I will begin testing the hypotheses this weekend, so watch this space.
Tonic seizure – 13 October
Another one – the same as all the others Lil Z has had recently. The only difference was that this time we were expecting it. She woke up on Saturday morning grumpy and unsettled. She was pale and looked almost grey. It was obvious she wasn’t feeling well.
Like all the other seizures she has had recently, it happened during a nap. We were alerted to it by her moans. As with all seizures that happen when both QB and I are home, there was a bit of a struggle over who does what – since we both instinctively want to be the one to hold her. QB nearly always wins, since I have more experience giving her the rescue meds.
We waited 5 minutes then gave her a dose of Midaz. It took another 5 minutes for her to come out of the seizure, but she did, so we decided not to call an ambulance. She was sleepy at first, but by afternoon she was looking much better and was even up for a brief trip to the park.