During the last 10 months we sent a couple of email updates to friends, family and other people who care about Kalle. It's hard to read them. Especially the first ones. We were in the middle of something. We knew it was bad, but HOW bad... So much has changed that sometimes it's like we're different people, living an other life. Even though we slowly start to accept what happened and how our future might (not) look like, it will take a lot of time to define who and what we are now.
The e-mail updates from january - september 2010 are listed below (start reading from the bottom of the page):
(this last one had been written in Dutch only...this is the translation:)
Dear friends
It's a long time ago that we wrote our last update about Kalle. Mostly because it's so hard and we don't have much time for a social life.
After the last time at the hospital (may/june) not much had changed. Except for the fact that Kalle's epilepsy got much worse. It also showed on the outside, not only on the EEG. He got more medication, with lots of side effects (like phlegm). During the 6 week stay at the Sophia Kinderziekenhuis we tried to convince the doctors that something is not okay with Kalle's digestion. It often looked like he had belly pain. He would stretch out, completely stiff. he had a lot (a lot!) of gas etc. But he stayed at 'neurology', so digestion is not the first thing they want to deal with. The doctors even made us feel like we were in denial, like we didn't want to see Kalle's brain damage.
We were sitting in that hospital room, with windows that can't open, where we saw different doctors and nurses almost every day. We tried to convince them that they might at least talk to a gastroenterologist (stomach/bowel/liver doc). They did, but the guy never took a look at Kalle or even talked to us. Those things make us feel so helpless.
Mid june Kalle was sent home. His discomfort and his restlessness were not improved. The signs of epilepsy got more and more clear: involuntary muscle contractions (mostly his arms, almost like he's waving at you), his head slowly turning from one side to the other, with his eyes looking upwards...
We received a 'PGB' (dutch: persoonsgebonden budget), money that we can spend to 'buy' nurses that take care of Kalle at home. Since then there are two different nurses in our house for a couple of hours a week, so we can relax (...) a bit or do some work.
Weeks later Kalle's pediatrician finally agreed to send him to a gastroenterologist. We ended up in Antwerp because in Rotterdam we would have waited another month for an appointment. The doctor in Antwerp was kind, she knew what she was talking about, she talked with us for an hour...what a relief. She suggested to stop giving Kalle carob powder which we added to his bottles to make the fluid thicker (makes swallowing easier). What a simple suggestion. We had no idea that some kids' bowel systems don't like that stuff. After a week or so Kalle improved. He cried less, his muscle tension was better. Coincidence?
In august Kalle had another EEG. It had been 2,5 months since the last one which is a long time for a baby with epilepsy (we know that now...). He had a new doctor in The Hague where we went for a second opinion. The EEG had been made two days before we went to Berlin, the first time with Kalle. We had mixed emotions about the trip because we really wanted and needed to go. But on the other had we were afraid. Hours in the car. A crying Kalle. What if he would have a major seizure on the highway... No, he didn't have one of those so far, but what if....
The 2 x 4 hour drive was okay, without any major incidents.
A couple of days later we got the result of the EEG. It couldn't have been worse. West Syndrome, a very serious epilepsy syndrome which is difficult to treat, especially if the cause is brain damage (some kids get the syndrome 'out of the blue'..treatment is easier for them, most of the times). The problem with this syndrome: If you can't treat it right, the child's development will stop. Often the child 'forgets' things he did before, like smiling. The epileptic activity in the brain is so bad that it just blocks a lot of things. Considering that Kalle is already developing very, very slowly because of his brain damage..... we had to get a new medication immediately. But this medication (Sabril) can cause very serious side effects, like vision damage. That's the kind of choice we have to make.....
In the beginning Sabril helped him to feel more comfortable. The epilepsy was less visible. But after a couple of days he got used to it. So we had to give him more.
Now Kalle is more restless, again. He doesn't sleep well (= not enough) which is very bad for our mood, too. During the day he's sleepy (but not sleepING).
Very slowly we start to understand that our life will never be the same. That we will have to care for a child. Forever. A child that will be unhappy a lot because his body or the (side effects of the) meds won't let him be happy. Kalle will be in the hospital every now and then because sometimes the meds just don't work. We start to realize that the freedom we created disappeared. That we are 'different parents' because we have a 'special child'. Of course, some things don't matter that much anymore. Sometimes it amazes my what people worry about. What I worried about.
But now, at this point of the journey, we just can't see anything positive in the whole story. Our 'special child' just isn't happy! Our sadness is too big. We think about the thing that will never happen....Kalle won't have his own family. He won't drive a car. It's unlikely that he will ride a bike. Will he walk? Sit? Crawl? Talk? Love? Feel? we don't know. And that hurts. We are so happy for all our friends with great, amazing, healthy children. But sometimes it's just too much for us.
There are lots of people participating in our daily life since Kalle got sick: Nurses who come to take care of him, physiotherapists, speech therapists (who checks if Kalle drinks / swallows okay). Those people are doing great jobs, but they come to OUR house. They walk in OUR living room. We appreciate their help. But sometimes we miss being a family, just the 3 of us.
That doesn't mean we don't want to see anybody! We appreciate all your text messages, letters, emails, phone calls.... Please stay in touch. We might not always pick up the phone or we might say 'no' sometimes if you ask to have lunch together. But it helps to know that people care.
Cause we don't like life very much right now. Kalle doesn't and we don't either.
----------------
Dear friends,
it's getting harder all the time, bringing bad news to you concerning our precious son Kalle.
He's not as healthy as we thought.
Kalle is in Sophia Children's Hospital again from the 4th of May. We're not sure yet when he'll be home again.
The crying and overtension in his muscles (hypertonia), in fact all Kalle's reactions on his surroundings were unhandlebar at home.
The doctors already suggested re-hospitalisation to have his behaviour observed and to give us a little bit of air. After the EEC looked bad, it was inevitable to get him in hospital again the very next day.
A lot of epileptic activity was seen and a clear view of missing brainfunction.
The first thing can be treated by medication only. The second makes one fear for the future, including the near future. Usually babies grow out of their first set of reflexes somewhere between 4 and 7 months. After that moment the baby has to 'have learned' to swallow and to drink and so on. The doctors don't exprect Kalle not to do so.
That would condemn us to a life with probe feeding and the prediction of what more he will not learn in his life.
Good news is that Kalle eats part of his fruit- or vegetable bite succesfully since a few days.
And great is the fact that he finally laughed out loud for the first time. It was a reaction on a little teasing-game Sonja plays with him from time to time. Action/reaction, that's what we want to see!
Luckily we are able to see more development in Kalle's behaviour. Having contact or seeing him 'do' something with his environment are big terms, but we do see little steps leading there; enough to give us sparkles of hope.
Other professionals working with Kalle, like his fysio therapist, think the doctors are concluding way too early.
Still, we -have to- reconsider our expectations considering Kalle, his and our future.
Last weekend -on leave- we thought it would be nice to go to a small and quiet party of friends of ours. You know, doing everyday-things.
Sadly, it turned out a disaster; Kalle had a cry-attack we couldn't get him out only but a few hours later. We soo wanted that to be a nice thing....
His crying-and-hypertone-hysteria seems like something that has everything to do with the brain damage being done by the meningitis, being untreatable.
He rarely sleeps very deep, instead getting disturbed too soon.
We need a lot of energy to keep the doctors alert to keep their view not too tight. Apart from all the medical issues we wish Kalle to be way more comfortable.
We turned to be quite naive thinking that after the IC-time everything would be easier. We thought that it would be more diffecult for us seeing the things could not cope with instead of where we are now: Kalle being in pain and dyscomfort on a daily basis.
That makes us really sad. It's so unfair that he fought so hard for a life like this that's so tough.
Nights are still not how they should be, they are tweeking his medicines now, for the epilepsy too.
For now, heappears to be more weak and a little druggy.
Not a lot of good news. Every other day Sonja and I are sleeping in the hospital with Kalle so we do get a tiny little more sleep now.
Luckily Kalle gives us little smiles every now and then, take a look at
Love, Jan, Sonja and Kalle
-------------
-------------------
Dear friends,
here's finally a new update. It took me long not knowing how to put in words how things are now.
There are two sideson this situation: I find it diffecult to tell everyone all bad stuff, how pity we are, now that we finally have our cute en brave son Kalle back home.
Given the circumstances Kalle is doing well.
He's growing well (getting bigger in every way), now and then already trying to grab things, starts to look at his surroundings and people, last week we even got to enjoy his first smiles!
It could go better with Sonja and me; the long hauling between the Children's Hospital and home and all the uncertainty wrecked us.
Usually the first period after a child is being born is like living on a pink cloud, mom being fueled by hormones, dad by euphoria; we with our own state of being had to get adjusted to a new life back home, without the nurses and doctors. Without a director and without monitoring.
It looks like we're doing quite a good job.
Although it did look like a degenerate family by times: the neighbour's cat's shit not being removed from our garden for months, Sonja who caused an accident on a highway-exit 'cause she fell asleep for a split-second on her way to her first job after Kalle's birth, Kalle who gained almost 400 grams in a week's time caused by weak feeding-management, forgotten payments.... things like that.
But we are getting used to eachother and are able to enjoy beautiful, little moments. Kalle feels at ease home more and more although he is still unable to cope with too much input.
We are a lot to be found in the Children's hospital for Kalle being monitored and research.
On top of that he does a great job working with a fysio therapist and is being treated by an osteopath and a logopedist.
Almost all the things we didn't want to happen with Kalle's disease appeared, the last big step was that Kalle got a VP-Drain inplanted.
It's a small valve just under the skin behind his right ear that regulates the brain liquor. It works really well.
A 3rd scan showed us that the abces in his brain is neutralized; we are now 99% sure that the germs are now out of his body at last.
It would be great for Kalle to be free from all the pain and discomfort so he can show himself as he is: a cute, sweet little man.
It's still not very easy for Kalle to cope with a lot of noise so we're not always open for the public. Email/text/call us to maybe make an appointment.
Please do not call our 010-nr. it makes Kale jump up.
We wish for a beautiful summer that we can enjoy with eachother, friends and family.
Love, Jan, Sonja and Kalle
----------------
Dear friends,
today an update that doesn't require a lot of words...
A lot has happened since my last update and I love to share that with you.
BUT NOT NOW: now I am sooo going to enjoy that our Kalle Elvis is back home with us!!!!
This photo shows him sleeping on our couch.
Love, Jan, Sonja and Kalle
-----------------
Dear friends,
still it's great to receive all these signs of support in this time of uncertainty and sorrow.
It seems that the lighting in Kalle's head is getting down. He is still being very sick and there is danger in sight but perspectives are getting a bit better.
Still there's nothing to say what the next weeks will look like for us.
Lately Kalle underwent 2 MRI-scans, last time I wrote you was after the first one.
The second one last week plus a series of tests showed that the braindamage is worse than expected earlier, especially since it's partially on both sides of the brains.
The characteristics this will lead to later on can be both physical and mental.
Our biggest concern now is Kalles current condition. He holds an abces in his head that doesn't seem to solve on it's own, the fluid-regulation is disturbed too.
Does he need a drain? What if something goes wrong as in getting infected? Can Kalle handle all the tests?
Although we had a heavy but clarifying talk with the prof/doctor who declared us that the next phase would one of slow recuperation; the situation (and thus the treatment policy) has been changed twice since then. 1 step up, 2 steps down, Sonja and I just can't get used to it.
But!!! Looking at Kalle through time shows that he's a lot better these days: he drinks a growing part of his food by himself, looks around clear-eyed regularly, he's with us on our lap, we bath him now and then. You know: playing mom&dad :-)
Kalle is a very strong little man, wise enough to sleep a lot to get better, to be scared easily (sounds, sudden moves), has the most pretty buttocks we ever saw, loves floating and to have bathies, doesn't need any breath-support anymore and love to sleep at his mom's or dad's chest.
We miss him a whole lot being at home at night, we want him to sleep between the two of us so much!
Next time we'll go for even more positive news!!
Love, Jan, Sonja and Kalle
-----------------
Dear friends,
thanks again for all your love and support!
It's sad to tell you that Kalle is still not getting better.
Now that we're on day 11 in hospital/treatment, the lighting in Kalle's brain is still not under control.
In a 'standard' meningitis you'll be back home in 2 weeks time. Our son is still very sick.
The medical staff too - though both very experienced and passionate- is sometimes confused by the way Kalle's disease moves in different directions.
The meningitis has a lot bigger impact on babies than on adults because babies lack a lot of capacitance.
The main source of unsureness is still the infection being caused by a salonella bacterium.
Today a punction is being done to ease the pressure of the brainliquid in Kalle's head. By this the doctors hope to help mother nature in the self-regulation so the diseased areas can be reached by the anti-biotics.
Tommorrow they'll monitor it with a brain-echo. This week a change of things has to appear!
We are so very proud of how our son Kalle fights his way though all this. We hope to keep up with this strength.
So you wanna do something for us?
It's important for us to stay in touch with normal life in doing our own groceries, but thanks for the offer :-)
What you can do is: love and cherish eachother. Hug eachother one time extra each day and then think of our Kalle. It's such a sweet and brave little man, he deserves it.
Love, Jan, Sonja and Kalle
--------------------
Dear friends,
thanks for all your love and support.
We really appreciate it, we just feel sad Kalle and us needing all this in the first place.
In the night of January 2nd, Kalle is on the Sophia Children's Hospital E.R.
A complete medical team is available there 24/7.
Kalle is diagnosed a salmonella-bacterium infection leading to meningitis.
A very rare kind of meningitis that seems quite agressive.
These days are tough and emotional. We're lucky enough to be allowed near Kalle's bed 24 hours a day.
We live by the hour and it is hard to rate the progression of the disease and the upcoming recovery. Is news good or bad?:
+ Kalle is under the supervision of the best possible doctors and nurses. Sophia is a very well-respected children's hospital. The people there are very alert.
- the kind of infection is very rare, which means that the way the salmonella behaves in Kalle's body is quite unpredictable. Even for such specialized people a case like this appears only once in 5 years so there's not a lot of literature about it
+ that means the staff is very alert and anxious to be there when progression is being made. Sometimes we feel we're part of a Dr. House-episode :-)
- though some data show lower (better) results, the whole process is very slow. In the meantime still braintissue and/or lord membrane can be attacked.
+ we now know -after the first 2, 2 1/2 days- that Kalle will survive!!
- after a brainscan yesterday, Kalle got a huge throwback, he even showed convulsions just like the first days.
+ today was a lot better, he showed more movement and facial expression
- this brainscan showed us that we should be aware that certain zones in Kalle's brains are already damaged.
What that brings in the future, we don't know. The doctor was postive about it, but very mild.
+ today we are happy (under circumstances): Kalle was very relaxed today and reacted very good to the only bodycontact we can have with our son: touch him very gently with our flat hands (he can't handle too much stimulus): we never thought small things like this could make us so happy!
For now: it's gonna take a few weeks antibiotics-treatment at least.
And we live between hope and fear and with belief and love. Kalle, Sonja and me are in a 2 steps up, 1 step down-situation and that's hard to cope with.
I hope I can bring you all good/better news soon!
Love, Jan, Sonja and Kalle
Geen opmerkingen:
Een reactie posten