Dag 8/9/10 Hematologie

Dag/nachtritme

Dolf slaapt ’s nachts toch wel iets beter. Op de dag slaapt hij steeds minder. Hij zegt nog wel doodmoe te zijn. Verklaring medisch team: hij heeft een heel zware periode achter de rug. Hij heeft 2 zware chemo-trajecten gehad, enkele weken kritiek gelegen op de intensive care…. Dolf heeft het zwaar te verduren gehad. Zijn lichaam is uitgeput en heeft veel tijd nodig om te herstellen.

Training

Zaterdag en zondag hadden we gelukkig weer een “uitje”: Dolf in de rolstoel, ik erachter, lekker even in de frisse lucht. Vandaag had Dolf een wat mindere dag, hij voelde zich niet fit genoeg om in de rolstoel mee te gaan. Met de fysiotherapeut is ook besproken, dat Dolf niet te veel, te snel moet willen. Hij is al heel lang, heel ziek en heel zwak en moet rustig opbouwen. Hij heeft naast zijn beenspier-oefeningen (op bed liggend), nu ook oefeningen voor zijn armen gekregen. Er is een brede, elastieken band aan zijn voeteneinde geknoopt, waarmee hij zijn armen kan trainen.

Rustig aan, dan breekt het lijntje niet, is het motto. Wel doorzetten met oefenen, maar niet forceren… Tussentijds voldoende rust nemen om de spieren niet te zwaar te belasten en te laten herstellen. Dolf krijgt extra pijnstilling tegen de spierpijn.

Tracheo stoma

De intensivist heeft vanochtend besloten, dat er geen extra toegang tot de luchtpijp meer nodig is. Dolf is al langere tijd stabiel wat ademhalingsritme, bloeddruk, hartslag en saturatie (zuurstof in bloed) betreft.
Ook is hij sterk genoeg om zelf zijn longen schoon te hoesten.

De canule (het buisje) is verwijderd uit de luchtpijp. De snee in zijn hals (en in de luchtpijp) wordt niet gehecht, maar moet vanzelf (binnen een week) dichtgroeien. Uiteraard is het gaatje met een groot verband afgedekt.

3 uur na het verwijderen van de canule is de saturatie 100%!!!!! Beter kan gewoon niet!!

Fijn! Weer een stap in de goede richting.

Logopedist

Enkele uren na het verwijderen van de canule heeft de logopediste enkele testjes gedaan. Nu de canule eruit is, lijkt het slikken ook beter te gaan. Dolf dronk enkele slokjes water, zonder zich te verslikken!
En ja hoor: ook enkele lepeltjes appelmoes kwamen zonder te hoesten in de maag terecht!!

Vanaf nu kan er weer heel voorzichtig met drinken en dik vloeibaar (appelmoes, griesmeelpap) begonnen worden!! En dan (natuurlijk in overleg met de diëtiste) sonde-voeding langzaam afbouwen.

Wat een heerlijkheid…

Familie-gesprek 

1x in de week is er een gesprek met de artsen om het verloop en de voortgang te bespreken.
Vandaag is met name gesproken over de toekomst, het revalideren. Dolf ligt nu zo’n 3en een halve maand in het ziekenhuis. Tijdens de kritieke periode op de intensive care zijn ook de kleine zenuwen enigszins beschadigd (neuropathie) door het lange, ernstig ziekzijn en het lange bewegingsloos liggen. Herstellen zal veel tijd in beslag gaan nemen. In principe kan alles weer in orde komen, maar het zal lang gaan duren.

Er zijn een aantal voorwaarden, waaraan voldaan moet worden, voordat Dolf uit het UMC weg kan:

– wondjes van de tracheo stoma moeten genezen zijn.
– de spiegel (hoeveelheid van de neoral, het medicijn tegen afstoting) moet stabiel zijn.
– Dolf moet zelf vanuit bed in de rolstoel kunnen (en andersom). Hij moet dus kunnen staan.

Het is mogelijk, dat Dolf vanuit het Umc als tussenstap naar een revalidatiecentrum gaat. Na de bacteriële infectie is die stap overgeslagen, omdat hij totaal geen weerstand had (veel te weinig witte bloedlichaampjes). Op dat moment was de thuisomgeving het veiligste voor hem.

Nu is een revalidatiecentrum wel mogelijk, omdat hij, dankzij de donor, weer genoeg witte bloedlichaampjes heeft, dus wel weerstand.

Ik zet hier wel de duidelijke kanttekening bij, dat hij over een jaar het hele vaccinatie-programma voor kinderen weer moet doorlopen, dus dat hij nu geen afweer heeft tegen de kinderziekten (o.a. bof, mazelen, rode hond, difterie, kinkhoest, tetanus, polio, waterpokken)…..

Het motto blijft dus nog steeds: twijfel je of jij (of je kinderen) fit zijn, blijf uit onze buurt.

Zo’n 100 dagen in het ziekenhuis… en net als 2 jaar geleden, hebben we het voorjaar totaal gemist.

367 gedachten over “Dag 8/9/10 Hematologie

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