36 days in 8PA (Neuro Pediatric Ward) PPUM 神经小儿科病房的36天

Doctor is not only able to save one's life but doctor may save the whole family. To all doctors, your job may mean a lot to someone and the one will always remember your help.

医生不仅可以挽救一个病患者的生命，而是可以挽救整个家庭。您的工作对某人可能意义重大，而该人将永远记得您的帮助。

1/10/2020 6PM

Today will be a great milestone for Valencia where she is able to transfer from NICU to Neuro Pediatric Ward along with her mother. However, Valencia still needs Nasal Cannula (2L/min FiO2 21%) ventilation because she is not able to breathe smoothly in room air.

今天对于Valencia来说将是一个重要的里程碑, 她可以与母亲一起从重症监护病房转到神经小儿科病房。但是，Valencia仍然需要鼻导管（2L / min FiO2 21％）的呼吸辅助，因为她任然无法在室内空气平稳呼吸。

Why Neuro Pediatric Ward?

为什么在神经小儿科病房？

• Although baby is progressively improved on breathing issues and couldn't find any diagnoses in NICU, the hypertonia and dystonia issue will still require neuro doctor to follow up.
• It's easier for neuro doctor to monitor Valencia's condition and test with various medicine to improve her symptoms
• Mother can stay with Valencia to learn to take care of her. Example: tube feeding, monitor and observe her apnea issue and what to do with it.
• 尽管Valencia在呼吸问题上逐渐改善和在重症监护病房中未找到任何诊断，但肌张力障碍问题仍将需要神经科医生进行随访。
• 神经医生更容易监控Valencia的病情并进行各种药物测试以改善症状
• 母亲可以留在Valencia身边以便学习照顾她。例如：管饲，监测并观察其呼吸暂停问题。

What parents need to do during these 36 days?

父母在这36天内需要做什么呢？

• Mother is playing the main role to take care baby and explain the daily progress to doctors while they are doing bed visits.
• Besides working from home, father require to go hospital daily to visit both wife and daughter 
• Parents learn some basic CPR and physio from doctors
• Father to switch shift with mother to take care baby on the weekend
• Follow up with doctors to understand the progress of diagnoses
• 母亲扮演着照顾婴儿的主要角色，并在医生巡察问诊时向他们解释每天的进展。
• 爸爸除了在家工作外，还需要每天为母亲送餐（病房的食物确实不是很好吃）
• 周末与母亲轮班以照顾婴儿
• 跟进医生以了解诊断进度
  

The unforgettable incident happens in 8PA:

难忘的事件:

• Ever since Valencia transfer to the Neuro ward and try with new medicine, she had more apnea issues, there are around 15 episodes per day. Sometimes lips will turn purple if it's serious.
• Valencia is changing ventilation from the normal Nasal Cannula to CPAP and to BiPAP. She will require to wear CPAP mask 24 hours while using CPAP or Bipap
• Valencia is experiencing the breath-hold issue (she hold her breath where she refuses to breathe in and out fresh air)
• Valencia experienced 2 times SWAP test while she is in 8PA as COVID 19 cases are increasing
• Valencia requires to do a multiples blood test from time to time in order to check her CO2 level and nutrition level. (Her both hands & feet are full with injection pinhole)
• Almost done twice per week of X-ray to check if there is any lung infection.
• Tube feeding is getting more difficult and challenging for parents as she will experience dystonia and apnea due to her 24 hours BiPAP ventilation. (sometimes it took us 1 hour plus to finish 70ml milk feeding)
• Mother sends Valencia into the operation theatre room for a tracheostomy operation.
• 自从Valencia转到神经小儿科病房尝试新药后，她呼吸问题越来越多，每天大约有 15 次或以上。如果严重，有时嘴唇会变成紫色。
• Valencia 从正常的鼻插管改为 CPAP 改为 BiPAP。在使用 CPAP 或 Bipap 时，她将需要戴上24 小时的呼吸口罩。
• Valencia有时会经历屏气问题（她在拒绝呼吸新鲜空气的地方屏住呼吸）
• 随着 COVID 19 病例的增加，Valencia在 8PA 期间经历了 2 次 病毒SWAP 测试
• Valencia 需要不时进行多次血液检查，以检查她的二氧化碳水平和营养水平。 （她的双手双脚全是注射针孔）
• 几乎每周都做两次 X 光检查是否有任何肺部感染。
• 对于父母来说，管饲变得越来越困难和具有挑战性，因为她会因 24 小时 BiPAP 辅助器而出现肌张力障碍和呼吸问题。 （有时我们需要用到 1 小时以上才能完成 70 毫升的奶喂养）
• 母亲将Valencia送进手术室进行气管切开手术

Almost every day she is required to take a blood sample 几乎每天她都被要求采集血样

What is the progress and finding in 8PA?

8PA的进展和发现什么？

• After Valencia did a bronchoscopy test, one of the main reasons for her breathing issue is her vocal cord muscle was stiff, and sometimes it couldn't flexible enough to open up the airway for her to breathe in. (Vocal Cord Dysfunction)
• There are a total of 4 main medications to help her dystonia & hypertonia symptoms which are: clonidine, trihexyphenidyl, baclofen, and levodopa. (increase dose based on weight gain progress)
• Valencia will experience drowsy after she takes these medicine and sometimes will cause her apnea as well.
• Besides the 4 medicine, she is required to take atropine & scopolamine (reduce secretions), iron hydroxide, folic acid, domperidone (reduce regurgitation), lactulose (help passing motion), appeton, carborie & MCT oil (help to gain weight)
• Parents and Valencia were advised to take a Full Exome Sequencing test (full DNA test) to check if there is any genetic issue.
• Valencia做了支气管镜检查后，她呼吸困难的主要原因之一是她的声带肌肉僵硬，有时它不能够灵活地打开气道让她呼吸。（声带功能障碍）
• 共有 4 种主要药物可以帮助她缓解肌张力障碍症状，它们是：可乐定、苯海索、巴氯芬和左旋多巴。 （根据体重增加的进展增加剂量）
• Valencia在服用这些药物后会感到昏昏欲睡，有时还会导致呼吸问题。
• 除了这4种药，她还需要服用atropine & scopolamine（减少分泌物）、iron hydroxide, folic acid, domperidone（减少胃液反流）、lactulose（帮助排便）、appeton, carborie & MCT oil（帮助增加体重）
• 父母和Valencia进行全外显子组测序测试（全 DNA 测试）以检查是否存在任何遗传问题。

Tube feeding with Ventilation Mask on was extremely challenging 戴上通气面罩的管饲非常挑战

After she wakes up from a long nap 午睡醒来后

Before heading to Operation Theather for Tracheostomy Operation 前往手术室前的合照

Before heading to Operation Theather for Tracheostomy Operation 前往手术室前的合照

To Be Continued

Jeremy