韦慷得再三月的假期里住院尝试使用氧气机

今天早上接到医院的电话，通知我上次韦慷做sleep study的报告已经出来了，见习医生说报告指出韦慷在睡眠时呼吸的状况不是很理想，通常普通人在睡眠时会有大约2﹣3次的停止呼吸，但韦慷有12次的停止呼吸。医生建议韦慷能够尽快的使用氧气机来帮助睡眠时有足够的氧气在体内，因为如果人体缺少氧气会造成很多问题如无法专注，精神不振等等。。。。。医生安排韦慷在学校假期24.3.14住院几天，晚上在医院睡觉试试使用氧气机看是否会适应，过后再来定购一台氧气机给韦慷每天在家睡觉使用。医生说这病患者非常需要这台氧气机来帮助输入氧气，这台机器大约要RM40-50K左右，如没能力购买医院会帮忙申请某些慈善机构的援助金，到时会再做深入的程序。 下午我去医院拿admittion form时，发现到韦慷在27.3.14要复诊，就要求护士帮我换26.3.14住院，然后隔天可以顺便在医院复诊。正因为当时医生去探病无法得知能否改换日期，护士明天会打电话来让我知道。

Extra consultancy

今天去孩子们平时去小病就医的诊所再查问关于韦慷所服用的Steroids，这医生有说很多中药都含有类固醇如树根类人参，所以中药要尽量少食，可免则免，还说此要能让服食者脸部红粉色看似气色很好，但都是错觉来的，还有皮肤也会薄掉，很容易抓伤。担心的是他很容易受到细菌感染，如周围有人生病就得得带口罩以减低细菌感染。

当初就是这医生建议我带韦慷去政府医院检查他的病，还写了一封信以能够更快的让医生们了解韦慷的初面症状，真的是非常感谢这医生。

上星期五13.12.13，韦慷去原始点推拿

上星期五早上，原本要带韦慷去GH检查眼睛，就是自己的粗心把日子看错了，GH就只在星期一之四早上8am﹣10am才有检查眼睛，就改换去推拿。我去的是在吉零万山里的昌记给韦慷做第一次推拿，那老师傅帮韦慷推拿时，边教我如何在为韦慷推拿。大部分都在于头部，背部和臀部，由于我有交代师傅关于韦慷的病情，以及韦慷的骨头会比普通人较脆弱，师傅也比较轻手点。师傅有说虽然推拿医不到此病，但希望能帮助韦慷舒松筋脉。

Sleep Study day

Sleep study room 对正电梯的门

房里的厕所

门口近房间

医务人员使用的电脑

睡房里

这就是我睡觉的沙发

特地买给韦慷住院时玩的玩具

也买了书籍及报刊

医务人员为韦慷装置了这些仪器，虽然都没有针孔插植，但被粘到这么多的电线要怎么睡得好？最令韦慷不舒服的是那鼻子和嘴巴之间的吸管。

还好带了他的包枕和Mr Nerdie来陪睡，不然肯定难以入眠。

                      星期一16.12.13下午3.30pm 就去GH住院，去之前还打包两包鸡饭当晚餐。医生护士都说韦慷被安排去住五星级Hotel住宿一晚，房里有air-condition，还有厕所呐，难怪说五星级啦！哈哈哈哈。。。。。 我也像去旅行般一样，把东西都装在有轮子的行旅袋，里面都装了韦慷的日间衣服和睡衣各一套，被单及Jacket，两罐的水罐，韦慷的玩具和书籍，牙膏牙刷杯子，body shampoo等。。。。真的像去旅行。 

                      吃晚餐后，有位男生的Medical Assistant（MA）在7点左右来帮韦慷装上呼吸记录的仪器，还交代一定要在10pm睡觉，但韦慷平时在家最早都是10。30pm才睡，加上身上装了这么多Wayar怎么能睡得好。。。。。所以晚上9pm就关灯让韦慷早点睡，不过他还是等到10.45pm才入睡。而我当然是睡得不好，那房间是靠近出口，而且心里感觉很不安全，听了MA对我说晚上10就必须把门给上锁，心里却开始感到有点害怕，担心半夜睡觉有人会闯进房间里，房里就只有一个女人和小孩，过后也有点害怕房里会否有那东西。。。。。。。 就因为这房间靠近出口，所以都会听到开关门及有人在那里谈话，很吵。。。。房门就对这电梯门，电梯旁又是楼梯，房间也靠近马路，所以都很难睡得好，连韦慷在早上5左右都醒来了，过后也只是半睡半醒的状态。

                       晚上韦慷睡时，会听到轻微的鼻汗声，这些就是医生们需要知道的一些小细节，接下来得等两三星期过后才有报告出来。 隔天早上，7am就有为女护士敲门来拿韦慷的血液，验看血液里的空气是否足够，7.30am前晚帮韦慷装上仪器的MA又来帮韦慷拆解仪器，过后就给韦慷刷牙洗澡，吃过早餐大约等到8.30am就去问护士医生大约几点来探韦慷，护士说医生没这么早探他，也允许我带韦慷去眼科部检查眼睛。这天眼科部门非常多人，我们都用了整一小时做好简单的眼睛检查，就马上赶回病房去等医生来。等啊等着，医生在11.30am才进来病房探韦慷，然后也只不过说几句话没检查什么的就离去了，前后都不到10分钟。。。。。过后又得等助理医生来写报告，等到12.30pm才处理好全部东西出院，全部疗费才RM11.50，工作人员还说可以向校方要求信件那就不需要给一切的费用了，不过才这么点钱自己还付得起。要是在私人医院的话，应该都要超过RM1000了，听医生和护士们说单单使用那呼吸记录仪式的费用都要整RM800了，在加上住宿和餐食应该都不少钱了。以韦慷的病症来看，韦慷可是医院的常客了，不只是看儿科，呼吸科，心脏科，眼科，接下来可能得去骨科，营养师，心理医生就诊。

           接下来的appointment是在27.3.14Neuro 儿科和Respiratory checkup，眼睛检查appointment8.12.14，而心脏的是在2015的一月。还好今天这医生Dr.Rhus更改时间来将就这Dr Teh儿科的日期相同，免得我多跑一趟。明天韦慷就得开始服用steroids了，非常的担心。。。。。。 还有助理医生还交代我下次必须带一本书去给医生记录每次复诊的资料，以放便医生们时时刻刻都能了解韦慷的症状记录，不需在浪费时间翻查记录。

韦慷要开始服用Steroids （类固醇）

星期四下午韦慷复诊，医生又再次给他做动作的评估，医生说又下波了，再次要求韦慷复用类固醇Prednisolone，还要韦慷去做眼睛检查。现在还没给他服药，等下星期检查眼睛过后才给他服用。心情非常的担心如果他服用这要过后要承担种种的负作用。

prednisolone-side-effects.

For the Consumer

Applies to prednisolone: oral liquid, oral solution, oral suspension, oral syrup, oral tablet, oral tablet disintegrating

Along with its needed effects, prednisolone may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking prednisolone:

More common

• Aggression
• agitation
• anxiety
• blurred vision
• decrease in the amount of urine
• dizziness
• fast, slow, pounding, or irregular heartbeat or pulse
• headache
• irritability
• mental depression
• mood changes
• nervousness
• noisy, rattling breathing
• numbness or tingling in the arms or legs
• pounding in the ears
• shortness of breath
• swelling of the fingers, hands, feet, or lower legs
• trouble thinking, speaking, or walking
• troubled breathing at rest
• weight gain

Incidence not known

• Abdominal cramping and/or burning (severe)
• abdominal pain
• backache
• bloody, black, or tarry stools
• cough or hoarseness
• darkening of skin
• decrease in height
• decreased vision
• diarrhea
• dry mouth
• eye pain
• eye tearing
• facial hair growth in females
• fainting
• fatigue
• fever or chills
• flushed, dry skin
• fractures
• fruit-like breath odor
• full or round face, neck, or trunk
• heartburn and/or indigestion (severe and continuous)
• increased hunger
• increased thirst
• increased urination
• loss of appetite
• loss of sexual desire or ability
• lower back or side pain
• menstrual irregularities
• muscle pain or tenderness
• muscle wasting or weakness
• nausea
• pain in back, ribs, arms, or legs
• painful or difficult urination
• skin rash
• sleeplessness
• sweating
• trouble healing
• trouble sleeping
• unexplained weight loss
• unusual tiredness or weakness
• vision changes
• vomiting
• vomiting of material that looks like coffee grounds

Some side effects of prednisolone may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

• Increased appetite

Incidence not known

• Abnormal fat deposits on the face, neck, and trunk
• acne
• dry scalp
• lightening of normal skin color
• red face
• reddish purple lines on the arms, face, legs, trunk, or groin
• swelling of the stomach area
• thinning of the scalp hair

For Healthcare Professionals

Applies to prednisolone: compounding powder, injectable solution, injectable suspension, oral liquid, oral suspension, oral syrup, oral tablet, oral tablet disintegrating

General

Patients treated with an average of 10 mg per day over several months have developed 50% fewer infections compared to those treated with an average of 20 mg per day. Significantly fewer episodes of aseptic necrosis and a trend toward fewer complications in general have been reported with lower dosages.

Side effects have occurred less frequently when minimum dosages were employed. Dosages greater than 10 mg per day have been associated with an increased incidence of adverse events.

The side effects of prednisolone may be subdivided into those associated with short-term therapy (to three weeks) and those of long-term therapy (> three weeks).

Short-term effects have included sodium retention-related weight gain and fluid accumulation, hyperglycemia and glucose intolerance, hypokalemia, gastrointestinal upset and ulceration, reversible depression of the hypothalamic-pituitary-adrenal (HPA) axis, and mood changes ranging from mild euphoria and insomnia to nervousness, restlessness, mania, catatonia, depression, delusions, hallucinations, and violent behavior.

Long-term effects have included HPA suppression, Cushingoid appearance, hirsutism or virilism, impotence, and menstrual irregularities, peptic ulcer disease, cataracts and increased intraocular pressure/glaucoma, myopathy, osteoporosis, and vertebral compression fractures.

Metabolic

Metabolic side effects of prednisolone have included hypernatremia, hypokalemia, fluid retention, negative nitrogen balance and increased blood urea nitrogen concentration. Glucocorticoids have been reported to decrease the secretion of thyrotropin (TSH).

Cardiovascular

Cardiovascular side effects have included hypertension and congestive heart failure due to long-term fluid retention and direct vascular effects.

Up to 12% of patients may develop systolic hypertension. Hypertension has been associated with long-term therapy with corticosteroids and is thought to be due to fluid retention. One author has associated these changes in blood pressure with advancing age.

Endocrine

Endocrine side effects have included glucose intolerance and hyperglycemia. Diabetes-like symptoms may develop in some individuals. Hypothalamic-pituitary-adrenal suppression may be prolonged to 12 months following long-term therapy with prednisolone. Cushingoid appearance has commonly occurred with chronic therapy. In addition, hirsutism or virilism, impotence, and menstrual irregularities may occur with chronic therapy.

Corticosteroid therapy may induce glucose intolerance by reducing the utilization of glucose in tissues and increasing hepatic glucose output. Patients on alternate day therapy may exhibit significantly higher serum glucose on the day prednisolone is taken. Diabetes mellitus requiring therapy with diet modifications and hypoglycemic agents has developed in some patients.

Adrenal suppression can persist up to twelve months after long-term corticosteroid therapy. Adrenal suppression may be reduced by giving corticosteroids once a day or once every other day. After corticosteroid therapy has been tapered, supplemental corticosteroid therapy during times of stress (illness, surgery, trauma) may be required.

Gastrointestinal

Gastrointestinal side effects have included gastrointestinal upset, nausea, vomiting, and peptic ulcer disease. Pancreatitis as well as gastrointestinal perforation and hemorrhage have also been reported.

Gastrointestinal effects most commonly have included nausea, vomiting, dyspepsia, and anorexia. Peptic ulcer disease has been associated with long-term corticosteroid therapy, but is relatively uncommon. Routine prophylactic therapy is not warranted in all individuals. Aluminum/magnesium containing antacids may be used to manage GI complaints without significant drug interactions.

Immunologic

Immunologic side effects have included impairment of cell-mediated immunity which increases patient susceptibility to bacterial, viral, fungal and parasitic infections. In addition, the immune response to skin tests may be suppressed.

Musculoskeletal

Musculoskeletal side effects have included myopathy, osteoporosis, vertebral compression fractures, and aseptic necrosis of bone. Aseptic necrosis has been reported to most often affect the femoral head.

Corticosteroid myopathy presents as weakness and wasting of the proximal limb and girdle muscles and is generally reversible following cessation of therapy.

Corticosteroids inhibit intestinal calcium absorption and increase urinary calcium excretion leading to bone resorption and bone loss. Bone loss of 3% over one year has been demonstrated with prednisolone 10 mg per day. Postmenopausal females are particularly at risk for loss of bone density. Sixteen percent of elderly patients treated with corticosteroids for 5 years may experience vertebral compression fractures. One author reported measurable bone loss over two years in women on concomitant therapy with prednisolone 7.5 mg per day and tamoxifen.

Ocular

In renal transplant patients maintained on prednisolone 10 mg per day, 33% developed posterior subcapsular cataracts. Mean time to cataract development is 26 months. Increased intraocular pressure has occurred in 5% of patients.

Ocular side effects have included increased intraocular pressure, glaucoma, and posterior subcapsular cataracts.

Other

Pseudorheumatism, or glucocorticoid-withdrawal syndrome, has occurred upon withdrawal of corticosteroids but was not related to adrenal insufficiency. Patients experienced anorexia, nausea, vomiting, lethargy, headache, fever, arthralgias, myalgias and postural hypotension. Symptoms resolved when corticosteroid therapy was reinstated.

Other side effects have included a glucocorticoid withdrawal syndrome, which resulted from abrupt discontinuation of prednisolone therapy and may not have been associated with adrenal suppression.

Psychiatric

Psychiatric side effects have included psychoses, behavioral changes, and pseudotumor cerebri.

Hematologic

Hematologic side effects have included thrombocytopenia, lymphopenia, and platelet alterations resulting in thrombolic events.

Dermatologic

Dermatologic side effects have included bruising, ecchymosis, petechiae striae, delayed wound healing, and acne.

Barbeque

星期二晚上，第一次在家做了小小的烧烤让孩子们见识，韦慷对新鲜事件特别开心，但他不小心踩到鞋子跌倒，脚有点瘀伤及手有点擦伤。

狗狗饼干

今天他们非常开心地做这狗狗饼干，尤其在装饰狗狗的部分，他们非常的开心，可惜我让小妹妹去午睡，不然肯定更开心的闹！！！