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Vera is 10 years old!

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I cleaned out a large closet, which had everything to do with Vera.
Our girl is 10 years old now. And even though there are still concerns, there have also been some positive changes. And that’s why we’ve been able to get rid of some things.
Goodbye syringes, mickey buttons, extension hoses, metalline dressings, tubes of cream, freezer bins and liquid medications! For two years now, Vera has been eating everything independently. Every meal, snack and even her medication in pillform (which is about 10 pills a day). After 8 years of tubefeeding, I cannot tell you how special it is to watch her eat so well by herself these days. We take the fact that she develops some food related tics from time to time in stride. In particular when it comes to sandwich toppings, Vera will have a strong preference for one specific option for months. We’ve gone through phases of spreadable cheese, chocolate spread, cookiebutter and currently we’ve been in the hummus phase for months. All sandwiches have to have hummus, even in the morning at the breakfast table we’re surrounded by a strong garlic/chickpea aroma.

More things left the closet. Goodbye nebulizer, liquid medications for the nebulizer, plunger syringes! Eventhough Vera can still be plagued by common colds, in recent years she’s been able to get away with just regular nose sprays, perhaps one inhalerpuff and lots of rest. No more nebulizers or hospitalizations due to a cold. That used to be quite different in the past.
Goodbye diapers, wipes, endless diaper creams and goodbye changing station in the storage room. Another milestone we weren’t sure we were going to make (and neither did the urologist). Since 2021 Vera has been toilet trained during the day and since March of 2022 at night as well. What a difference this makes at home and out and about. And how nice for her skin that had been suffering from wearing diapers all these years.
What remains is a container of medication for her heart and sensory processing during the night, a bottle of eardrops because ear infections are still a common occurence for Vera. What also remains is the cooler for growth hormones. Vera gets a dose of these every night.


The closet has been cleaned out.

The wheelchair stays, soon we’ll size up to a larger one again. The splints in her shoes also remain. Walking is still something for short distances as her legs and feet continue to be something we need to keep an eye on. We hope better splints will help. Or customized shoes, perhaps one day surgery. All in all this is probably the limit of Vera’s mobility. Her tricycle and the tandembike we like to take out to go shopping remain. What also remains are the hospital visits to see the pediatrician, endicrinologist, cardiologist, ENT doctor, eye doctor, oncologist, rehabilitation doctor. And in the background: the neurologist, orthopedist, urologist and dermatologist.

But what remains the most is a 10 year old schoolgirl who likes to be both handyman and princess, wants to dance and hang on the couch, makes us laugh and tires us out endlessly with her early rising, cognitive disabilities and a hint of autism.

But that’s Vera: our sister and daughter.

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Deze afbeelding heeft een leeg alt-attribuut; de bestandsnaam is glijbaan-scaled.jpg
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Care Assessment

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Care Assessment It’s harder than we thought to post to the blog on a regular basis. The main reason being that our lives are so busy. The posts: ‘On vacation’, ‘First days at therapy group’, ‘Quitting my job’ and ‘Recurring ear infections’ are all still in the works and will hopefully still get posted.

But for now a post about something that worries us. And makes us nervous. This week an evaluation takes place about whether Vera and our family are still entitled to home care and if so; to how many hours a week?
Every year the CIZ (Centrum Indicatiestelling Zorg, the Dutch institution that determines how many hours of care you are eligible for according to the AWBZ, the general law on exceptional medical expenses) makes their assessment. They assess whether Vera is entitled to home care according to the latest rules of the general law on exceptional medical expenses, as drawn up by the Ministry. Our need for care is drawn up by us together with the head nurse of the home care team and submitted as a request. For this we list all the care that’s needed for Vera at home and how much time and effort this takes. We also list the number of hospital visits and therapy sessions. Which shocks even us sometimes, see our last post.

Nurse from the home care team rinses Vera's pulmonary artery catheter.

Nurse from the home care team rinses Vera’s pulmonary artery catheter.

 

 One of the reasons Vera needs a lot of care is the fact that she wakes up between 4 to 10 times at night. Every night. And the fact that she needs extra personal care for instance.

On a regular basis the nurse flushes Vera’s PAC (pulmonary artery catheter) with special needles and heparin, replaces her Mic-key feeding tube in her stomach and performs other similar medical procedures. Because of all these care needs we receive care at home from the Children’s Home Care Team. The home care team helps us enormously by taking over part of the care for Vera, by performing medical procedures that we would otherwise have to go to the hospital for and also to help determine when Vera requires the doctor’s attention. At the moment a nurse comes to our house 3 nights a week. She cares for Vera downstairs in the living room and takes over the last and first round of medication and food for us. That way we can sleep through the night in order to regain our energy and be ready for the next day.

Besides the night care we also have care during part of a day which we use to go do something fun with our older daughter or for a rare evening out together. This keeps us afloat. We are very happy with the care we receive that allows us to live somewhat normal lives. And we hope that we won’t always need it, but it will be needed in the early years when still so much about Vera is unclear and being examined. Of course you don’t receive this care at home easily and each year a new evaluation takes place. And that’s why we submitted a new request for care. The processing time of this request takes 6 weeks, but in the mean time you can expect home visits or phone calls with additional questions to check whether the request is indeed valid. This week it’s our turn.

And yesterday I received 4 phone calls, our home care nurse was called and our paediatrician at the Children’s Hospital was contacted as well. With lots of follow-up questions (how many minutes does it take to replace the Mic-Key? On average how often does she spit up in a week?), they check whether all information is correct and keep pushing with questions about whether there really is a need for external care. We know this is necessary but we are in a very vulnerable position. Not just because you have to tell them everything about your daughter they ask about, but because you are scared to death that they will take away the care you so desperately need and that there is not much you can do about it.

Our case is there, the treatment officer recognises it’s a complex file but also says that a relatively small amount of medical procedures is being done by the home care nurses. And that further discussion will have to take place behind closed doors to determine what is possible within the new rules. How we will get through the nights without the home care nurses she didn’t know either, but she could imagine that it would be hard to keep up without help. But the treatment officer doesn’t have final say of course. Slightly desperate we think about what the alternatives would be, but we quickly push those thoughts away. First let’s wait and see. They are literally telling us that it is questionable whether we will still have care at all and if so, how many hours of children’s home care. Because Vera is not hooked up to a monitor at home (with oxygen or for heart monitoring even though she does have a narrow airway and is a heart patient) and if that is the case, home care may not be necessary according to the latest rules of the general law on exceptional medical expenses.

Welcome to healthcare in The Netherlands in 2014. ;-(
This will be nerve wrecking until we get the final decision. We hope our paediatrician will put in a good word for us. We don’t even want to think about what life would be like without Children’s Home Care. 

Here’s hoping for the best!

 

 

 

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Tiredness

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At one time during Vera’s first year of life, we talked to a transfer nurse at the Wilhelmina Children’s Hospital. A transfer nurse makes sure that the transition from hospital to home runs smoothly. She listened to all that had been going on with Vera and said: “Vera is a care intensive child”.

letter of our pediatrician about care intensive

letter of our pediatrician about care intensive

Care intensive. That word made sense. It acknowledged what we were feeling, what it was and is like: intensive. And the intensive care and intensive life are making us tired. Sometimes extremely tired. We don’t want to complain or want pity. We have lots of beautiful moments with each other. But life is not the same as it was before Vera was born. We have worries, we have lots of medical appointments and we sleep very poorly. And that is ongoing. The interrupted nights in particular are taking their toll. Some nights are better, where we have to go to Vera 2 or 3 times because she is crying loudly. But there are nights on a regular basis where we care for her in the evening and have to go to her at night every hour or every half hour and then the next day starts early again. In times like that we are extra tired because we also worry, we are looking for the cause of Vera’s restlessness (it’s often not clear at all) and we are looking for solutions. And we are sad because we don’t want to see our child suffer. Thanks to the evaluation by the transfer nurse back then, in 2012, we were assigned hours of Children’s Home Care. During these hours a nurse comes to our house to take care of Vera so we can have a break. Fortunately, these wonderful people also work at night. Two, or in worse times, three times a week, we put Vera in her travel crib in the living room and the nurse sits next to her on the sofa. We get to sleep 7 or 8 wonderful uninterrupted hours in which we don’t have to be alert for sounds and we can have true deep sleep. (Luckily, Mieke doesn’t wake up at night very often). This keeps us going. To paint a picture: life with Vera is not a sprint, it’s a long distance marathon. A marathon in which the strengths have to be divided very precisely to be able to keep walking and not falter. And what else makes it so exhausting to take care of this sweet human being?

Vera with a 3 weeks supply of syringes and food supplements

Vera with a 3 weeks supply of syringes and food supplements

In the past couple of months we fortunately haven’t had any unexpected hospitalizations, but we did have lots of hospital visits and other medical appointments. We have to think about what we want to ask, know and do ahead of time. We have to plan what food and medication she needs (and because of the examinations: which ones are allowed) during those days, the trip there, the exams, consultations and treatments and whether this all is during school time or not and do we need to plan after school care for Mieke or not. And often after a hospital visit like that, we either have to call or make a trip to the pharmacy for new or different medication. Vera uses 4 different medical suppliers! If you ever need boxes, you can come get some at our house, see picture 😉 Which brings us to another issue: keeping track of all of Vera’s medication, which kind, how much, how to administer and at what time (because not everything can be given in combination or with food). And we also have to make sure to order new medicine from the right supplier before the current supply runs out. Every month there is a new schedule on the kitchen wall listing which medicine or food is needed every hour.

medication schedule

medication schedule

Some of the cost associated with Vera’s care can be declared with our tax authority, so we keep a list of number of hospital visits. When we take a look at all the numbers during 2013, we quickly remember why we are so tired so often and that doesn’t even include the lost sleep and worries we have. A couple of numbers:

  • 101: number of medical appointments, not counting phone consultations or appointments
  • 77 appointments were with the hospital or therapy outside the home, 24 were at home (physio, speech therapy)
  • 39: number of nights Vera was hospitalized
  • 2: number of times Vera was picked up at home by ambulance
  • 1: number of times in the intensive care unit, this year ‘luckily’ only 2 days
  • 1.825: number of syringes used for medication
  • 4.963: number of kilometers travelled between hospital and home

And I could keep going. Because even the everyday things take more time and energy with Vera: taking care of her skin, preparing and giving her her food (by tube), (stimulating) communication and play etc.

But I think you get the idea and besides, I am going to relax for a bit because it is now quiet in the house…