CASE PRESENTATION REHABILITATION CENTER PULDERBOS BELGIUM. Leen Govaerts CF NURSE

Transcription

1 CASE PRESENTATION REHABILITATION CENTER PULDERBOS BELGIUM Leen Gvaerts CF NURSE

2 CASE 1

3 Medical histry By Brn at 37 weeks: BW 3,125 kg 48h after birth: mecnium Ileus, abdminal surgery in 2 times (abdminal stma) CF diagnsis by sweat test and genetics; hmzygte df508 Difficulty weight gain in the first mnth, mthermilk with additinal calries 1 mnth 2 mnths

4 Medical histry 1rst respiratry exacerbatin ral antibitics and every 1,5 hurs feeding Hspitalisatin IV treatment AB 10 days Hspitalisatin intestinal bstructin (MIE) 2nd respiratry exacerbatin start ral AB Hspitalisatin fr IV AB E cli, P putida 3 mnths 4 mnths 5 mnths 6 mnths 7 mnths

5 Medical histry Questin fr submissin inpatient rehabilitatin Demand frm CF center and parents Respiratry deteriratin and difficult parent-child relatinship Mther : Fear f evlutin t depressin having a break dwn Father : Engaged but nt a lt actually present Siblings: Sister f 4 years ld with intermittent respiratry infectins Transfer frm hspital t Pulderbs 7 mnths 8 mnths 9 mnths

6 Inpatient rehabilitatin - Pulderbs 1st day after admissin fever, cugh +++, mucus+++, anrexia After tw days f intensive respiratry physitherapy withut imprvement Therapy changes Oral AB 14 days nasgastric tube mucusdrainage with PEP Medicatin: Crens, Vitamines, Ursdexichlic acid Inhalatin therapy: Intermittent Salbutaml and Fluticasn Aersls: 3 x mucclear 7%, 1 x pulmzyme, 2 x clistineb Respiratry physitherapy 3 times a day Big therapy burden 8 mnths 9 mnths 10 mnths

7 Aims and gals f inpatient rehabilitatin Optimalisatin therapy Optimize therapy and medical treatment Optimize and stimulate ral medicatin appelsauce General and specific mtr develpement Optimize hyper-calric diet Reduce tube feeding

8 Aims and gals f inpatient rehabilitatin Assessing the scial situatin and pssibilities fr cping fr the mther rigid persnality absent father several hspitalisatins great pressure and tensin Mther always have t push bundaries very sick sn sister wh needs supprt and care by mther little supprt and understanding frm family

9 Aims and gals f inpatient rehabilitatin Out f balance

10 Aims and gals f inpatient rehabilitatin Optimalisatin therapy Psychscial and familial aspects : difficult parent-child relatinship big therapy burden Need fr : Teaching parents supprting Parents Building a safety net, hme guidance

11 Pints f discussin Psychlgical decmpensatin r are we verasking the parents? Hw hard is it t see everything in prper perspective? The need fr educatin and bservatin f the child and parent in the diagnsis f CF

12 CASE 2

13 Medical histry Data n admissin in Pulderbs 9 year ld girl CF, df508, mecnium ileus at birth Chrnic brnchusbstructin and brnchiectasia Chrnic clnisatin Pa and multiresistant Achrmbacter Xylsdans Frequente respiratry excacerbatins Lngfunctin: FEV1: 25 35% Cnditinal decline Failure t thrive, anrexia and vmiting Cyantic, O2 saturatin 87% Clubbing, thraxhyperinflatin Dyspne, tachypne Diffuse crackles

14 Aims and gals f inpatient rehabilitatin respiratry rehabilitatin Intensifying respiratry physitherapy Optimize and fine tuning medicatin Start xygen therapy Apprach t nutritin prblems with failure t thrive Optimize and fine tuning medicatin Maximise calries Tailring schedule tube feeding Stimulatin f ral feeding Imprvement f the physical cnditin

15 Interdisciplinary apprach Cntinuus nursing and pedaggic supprt Age apprpriate self-reliance, taking int accunt her physical capabilities Prviding schl during the admissin Guiding parents and ther caregivers Dealing with negtiatin and behavir Teaching Striving fr reintegratin at hme

16 Challenges and interventins in cf care Physitherapy Challenges Interventins Respiratry physitherapy Many viscus sputa Cugh and vmiting mucus Dyspne Insufficient mucus draining thrugh lack f strength Exercize physitherapy Muscle mass and endurance Respiratry physitherapy Intensive respiratry physitherapy and drainage Change aersl machine (Akita) because f inefficient breathing Start Bibap during physitherapy Exercize physitherapy Cntrlled exercize with xygen Use f wheelchair during (lnger) distances Daily mments f rests with Bipap

17 Challenges and interventins in cf care medicatin Challenges Interventins Cntinus fine-tuning medicatin Cntinusly adjusting inhalatin medicatin Decreasing crticids Antibitics systematic Intermittent IV AB therapy

18 Challenges and interventins in cf care feeding Challenges Interventins Less appetite because f her CF Picky eater Many mucus and cughing while eating Fatigue during meal Increasing fd supply, maximize calries Psitive stimulatin and n pressure n quantity Adjust nutritin and physitherapy, search fr the ptimal mment Help with meals and custm fd Fractinated administering tube feeding

19 Challenges and interventins in cf care emtinal Challenges Interventins Hard and time-cnsuming daily therapy Little understanding well being and health Enrmus pressure n nutritin (frm parents) Lts f negtiating abut therapy and nutritin (mainly at hme) Difficulty t recgnize brders Take away the pressure f the meals Make therapy duratin achievable Educating child and parents

20 Challenges and interventins in cf care sleeping Challenges Interventins Dyspne and cughing at night + vmiting because f lts f mucus Enuresis ncturna Oxygen and intermittent Bipap during sleep Enuresis ncturna : n pririty because f her medical cnditins

21 After resignatin Pulderbs Further deteriratin Admissin t hspital Signed up fr lungtransplantatin Pretransplant she came n the intensieve care unit (n a ventilatr and eventually ECMO) She has been transplanted at the age f 10

22 Pints f discussin Yu can nt always achieve all gals and aims Cntinuusly fine tuning gals and aims Smetimes it is a whle achievement t stabilize the cnditin

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