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Worst nightmare comes true

Herman said:
She's currently stable.
Yesterday, one of the tubes from her shunt (surgically inserted for dialysis) was found to have shifted a little too far into her heart, and it was retracted to its proper position under mild anesthesia. The filters on the dialysis machine were also replaced, so yesterday was another stressful day for the parents.
Today, only her catheter and an IV were removed, so today felt a kind of rest day to them.

Probably next week the dialysis machine will be switched off for one day when the medicine after two weeks should be at the peak of strength and then a blood sample will be taken and the machine switched on again... the blood analysis will take about a week.
So, all going well, they will certainly spend the next two weeks on the ICU.
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I continue to hold her, her family and yourself up in prayerful contemplation daily.
 
lately, and in the past, I have had the experience of being grateful for just making it from one day to the next. As in "Phew. Made it through that one. Still here. On to the next." Sometimes it's the only way through. I know the drill. I have Maia, her family and yourself on my list.

Pete
 
Peter Gutterman said:
lately, and in the past, I have had the experience of being grateful for just making it from one day to the next. As in "Phew. Made it through that one. Still here. On to the next." Sometimes it's the only way through. I know the drill. I have Maia, her family and yourself on my list.

Pete
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Thank you Pete, and to all those who have expressed their compassion and support or are silently following.
 
its a harsh world when the young ones are in a bad state. i hope all goes well and she can have a long and happy life.
when my youngest was small she had kidney reflux and they had to insert a tube to do something. well they took several attempts and the whole time my girl was screaming like they were murdering her. so after the last failed attempt i said to the drs that they had one more attempt before i got very angry and that i wouldnt be held responsible for my actions. luckily for them they managed to get it that time.
 
Last Monday, Maia had to undergo another surgery. This time to allow for peritoneal lavage (to clean out her abdomen) in the future. For this, she had to be taken off kidney dialysis for a few days (also to temporarily stop taking blood thinners). Today they plan to continue the kidney dialysis again (24/7).
For now they will search for the optimum combination of kidney dialysis, peritoneal lavage and medicine. The results of each combi will have to become clear by the blood analysis results... those results take about a week each time. So definitely still weeks to go on the ICU.

It is quite exhausting for the parents. My daughter and/or her husband are 24/7 with her and take turns for the nights, but now both grandma's also regularly take over some nights and we also regularly stay in the evenings with Maia so that her parents can have dinner together.
 
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Hi Herman,
What an incredible stressfull time you and your family have to go through, and especially Maia of course. So young and already facing such a huge fight. I really feel for you and you family in these difficult moments, but please never give up hope. It is amazing what current medical technology is able to do, but it takes time, and you have to have faith. Hopefully a kidney transplant is an option for her and that eventually she will come out stronger.
My thoughts are with you and your loved ones.
 
Peter Gutterman said:
Herman, thank you for doing us the honor of entrusting us on this forum with this most personal of challenges and heart-rending anxiety. I add and multiply my heartfelt prayers to all the above for Maia's well-being and that of her family and yourself.

Pete
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Thank you Peter for being able to articulate.what we are feeling
 
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.
IMG-20260128-WA0010.jpg
 
What a beautiful photo Herman. Thank you for sharing.

I was reading that after about 2 yrs of age, patients could possibly receive an adult kidney from a living donor, which, for obvious reasons, would be preferable to the alternative. It will be a long 2 years, but with smiles like the one above, will be worth the wait.
 
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