Worst nightmare comes true

[Peter Voogt]

I want to share a small update of the situation at this moment.

Maia underwent a third surgery yesterday. Fortunately, it was a less invasive, laparoscopic procedure because the outlet for her peritoneal dialysis was blocked (by fatty tissue and the ingrowth of ovarian tentacles).
Last week Maia also received her 2nd dosis of the medicine. This time administered by the professor who led the research in the Netherlands into this disease. Although retired now the good man remains involved, and so my daughter was happy he took the time for them to get acquainted and to answer questions.
For privacy reasons, he naturally was not allowed to provide information about other patients, but he makes sure that when they get the next injection in Amsterdam next month, they will be next in line after a similar couple, whose child is now 2,5 years old and has received a new kidney. That will shape the opportunity for them to get to know them and exchange experiences.

If all goes well and there are no further setbacks, the amount of lavage will be increased (over a period of about 5 weeks) from 60 to 200 cc. That is the minimal volume needed to switch over to automatically administer and drain the fluids from her belly (the valves for this are now manually opened and closed by the staff).
But as soon as it can be done automatically that opens the possibility for them to return home, where this machine can perform the lavage during the night. They still have to go to the hospital then of course for the hemodialysis several times a week.
It is difficult to make a prediction, but for the time being they will remain in the ICU for at least another 5 weeks, but the hope of a return home is on the horizon, let's say.
Especially for the parents it is rather stressfull, but luckily there are also happy times. Especially in those moments when Maia is away from all the equipment.
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Thanks for the update, Herman. And for that lovely smiling Maia and mom.
Regards, Peter

 

[Ted Robinson]

Thanks for the update, Herman. And for that lovely smiling Maia and mom.
Regards, Peter

Such a lovely smile

 

[Herman]

Earlier than expected, Maia was transferred from the ICU to medium care last weekend. The peritoneal lavage is now taken over by a device. This week is for my daughter and her husband all about learning how to operate that PD device for peritoneal lavage. Today is the last instruction day and in the meantime they have already taken over from the staff who now only check how they perform.
They expect to return home either Friday or Saturday after a period of almost 2 months in hospital. Everything at home has to be kept ultraclean so we all have prepared their homecoming. At home Maia will be connected to the PD device during the night (19:00-07:00 hrs) and will return to hospital 4 times a week for hemodialysis until she reaches the weight required to qualify for a kidney transplant. But for now we are all looking forward to their homecoming.

 

[RussF]

That's wonderful news Herman! No doubt very scary for Mom & Dad, but being at home will make things so much easier and more comfortable. Our love to Maia and your family.

 

[dockattner]

Great news, Herman. While the ongoing need remains it will be a comfort for Maia and her parents to have her home.

 

[Peter Voogt]

Earlier than expected, Maia was transferred from the ICU to medium care last weekend. The peritoneal lavage is now taken over by a device. This week is for my daughter and her husband all about learning how to operate that PD device for peritoneal lavage. Today is the last instruction day and in the meantime they have already taken over from the staff who now only check how they perform.
They expect to return home either Friday or Saturday after a period of almost 2 months in hospital. Everything at home has to be kept ultraclean so we all have prepared their homecoming. At home Maia will be connected to the PD device during the night (19:00-07:00 hrs) and will return to hospital 4 times a week for hemodialysis until she reaches the weight required to qualify for a kidney transplant. But for now we are all looking forward to their homecoming.

That is great news for Maia, her parents and of course all the others of the family. Finely going home!
All the best for getting strength and recovery towards new treatments.
Regards, Peter