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Worst nightmare comes true

Herman said:
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
 
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.
 
Herman said:
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.
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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
 
Ted Robinson said:
I'm hoping that no news is good news and that Miaia is doing well. Her along with your entire family are in our prayers daily.
God bless,Ted
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Good day Ted, thank you for asking and prayers. In this case no news is good news.
Even though my daughter, Maia's mother, is a physician assistant and works (or at least was working) as a family doctor, it was still nerve-wracking to take over the care and peritoneal lavage at home. But after some initial problems, where it seemed a blockage had reoccurred, this could be resolved with some medication and since then everything works out fine.
Earlier this week, blood/tissue was taken from both my daughter and my son-in-law to determine whether they could act as donors, time will tell.
Maia has gained some weight again and is now 6,3 kilos, so she still has to grow about 5 kilos before a kidney transplant can take place. We all have to be patient but for now everything goes to plan.
 
Herman said:
Good day Ted, thank you for asking and prayers. In this case no news is good news.
Even though my daughter, Maia's mother, is a physician assistant and works (or at least was working) as a family doctor, it was still nerve-wracking to take over the care and peritoneal lavage at home. But after some initial problems, where it seemed a blockage had reoccurred, this could be resolved with some medication and since then everything works out fine.
Earlier this week, blood/tissue was taken from both my daughter and my son-in-law to determine whether they could act as donors, time will tell.
Maia has gained some weight again and is now 6,3 kilos, so she still has to grow about 5 kilos before a kidney transplant can take place. We all have to be patient but for now everything goes to plan.
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I’m so glad to hear she is doing well and able to stay in here home, How fortunate her mother is a PA.
 
Good day to you all, I wanted to share an update on the situation with Maia and her parents.

All things considered, things are going much better than expected both by us and by the hospital staff. The hemodialysis has been reduced over the last 2 months from 4 times a week to 3 times a week, giving my daughter and her husband a free weekend. Last month that has even been further reduced to only 2 times a week (Monday and Friday) to keep her blood values on the right level.

The filtration function of her kidneys is seriously reduced, so she will still need a kidney transplant, but some function seems to have improved.
The kidneys are able to excrete fluid, and the urine looks normal. So last week they were first allowed for 2 days to stop the peritoneal lavage -until now during each night 19:00-07:00 hrs- (during which also extra moisture was extracted in addition to waste products). On Monday 11th her blood values were checked and found to be in order. After another 2 days still ok, even after a full week without peritoneal lavage her blood values are ok and she seems to urinate enough and not gaining weight by retaining too much fluids. Until they are certain this holds, the tube in her belly for the peritoneal lavage will not yet be removed, but for now it looks she can do without it and she and her parents will finally get a healthier night's sleep.

The medicine for her liver seems to be working very well for Maia, but it is part of a temporary research period ending somewhere in 2027. Then the Dutch health insurance companies will decide if they reimburse the (immense) costs. As the medicine is reimbursed in some other EU countries (a.o. Spain) my daughter has already said they will otherwise have to consider to emigrate to Spain. Time will tell, but we hope it will be reimbursed and they can stay in the neighborhood. Both grandma's now also each take care of Maia during one day a week.

So for now hemodialysis twice a week and her medicine once a month. As young children with a kidney problem apparently have no appetite she is mostly fed via a tube (via her nose). But growing well. She is now 8 months old.

8 mnd.jpg
 
It’s good to hear that the little girl is doing well. She looks great.

And let’s hope that the medication will be covered by insurance in the Netherlands in the future. It’s actually crazy that this has to be an issue in one of the wealthiest countries.
 
Herman said:
Good day to you all, I wanted to share an update on the situation with Maia and her parents.

All things considered, things are going much better than expected both by us and by the hospital staff. The hemodialysis has been reduced over the last 2 months from 4 times a week to 3 times a week, giving my daughter and her husband a free weekend. Last month that has even been further reduced to only 2 times a week (Monday and Friday) to keep her blood values on the right level.

The filtration function of her kidneys is seriously reduced, so she will still need a kidney transplant, but some function seems to have improved.
The kidneys are able to excrete fluid, and the urine looks normal. So last week they were first allowed for 2 days to stop the peritoneal lavage -until now during each night 19:00-07:00 hrs- (during which also extra moisture was extracted in addition to waste products). On Monday 11th her blood values were checked and found to be in order. After another 2 days still ok, even after a full week without peritoneal lavage her blood values are ok and she seems to urinate enough and not gaining weight by retaining too much fluids. Until they are certain this holds, the tube in her belly for the peritoneal lavage will not yet be removed, but for now it looks she can do without it and she and her parents will finally get a healthier night's sleep.

The medicine for her liver seems to be working very well for Maia, but it is part of a temporary research period ending somewhere in 2027. Then the Dutch health insurance companies will decide if they reimburse the (immense) costs. As the medicine is reimbursed in some other EU countries (a.o. Spain) my daughter has already said they will otherwise have to consider to emigrate to Spain. Time will tell, but we hope it will be reimbursed and they can stay in the neighborhood. Both grandma's now also each take care of Maia during one day a week.

So for now hemodialysis twice a week and her medicine once a month. As young children with a kidney problem apparently have no appetite she is mostly fed via a tube (via her nose). But growing well. She is now 8 months old.

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I agree with the others that this is GREAT news, Herman. What a nice looking girl see is!
Regards, Peter.
 
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