Sad news....

We just heard that the surgeon that operated on Lotte - Dr. Sten Harris - has died. He died on the 8th of may, after being sick for some time. (See here.)
That we only now heard about it shows how little contact we have with that part of the "system".

When we met him, he was the person that would make it possible for Lotte to hear. We had many conversations with him about how a CI works, the procedure, and he was the one that told us that we were the first in Norway to be offered bilateral CI for Lotte, in 1 operation. We knew he had fought hard to get this the standard in Norway. We couldn't believe our ears. A wonderful gift.
Lotte's mum wrote a poem for him on the morning before the operation, and we remember how the situation made him a little uncomfortable. As if there was even more responsibility on his shoulders. (The poem is elsewhere in the blog... here.)

So, even though we haven't had contact with him since Lotte was dismissed from the "Rikshospitalet" in Oslo, hearing about his death really struck us. Why would this be, since we didn't have any contact? We didn't know that when budget-cuts were done in the Rikshospital he resigned out of protest. We didn't know he was sick. It seemed that our connection stopped after Lottte was operated.
Perhaps it is such a shock because he is such an important part of Lotte's life. Of Lotte's current situation. The personification of one of Lotte's milestones.
Of course there are many other surgeons that could have done this, but in Lotte's case, it was Sten Harris. He made it all possible for Lotte, and for us.

And perhaps the poem says it all...

Take this child

Give her wings
to hear
the sound of my smile

Give her wings
to hear
the radiance of my eyes

Never the same again
after today
Blessed
with an exceptional gift

To hear light
To see sound
gives wings to the soul
.

.

.

(To Dr. Sten Harris, Lotte's Mum, October 4th, 2004 )

Operation - a short summary

My daughter was operated on both sides in 1 operation.

She woke up after 4 hours and was annoyed by the drip (IV) going in her foot (for fluids). She started making puzzles and looking at images. Was too happy to be on the recovery ward so they put her in her own room.
She felt a bit sick, threw up, got 1 aspirin and started eating. This all in the first 3 hours.

Then they removed the drip from her foot and from that point on we couldn’t hold her any more. She looked for toys and found a tricycle to go about in the hospital.

The thing is, it was a huge surgery 10 years ago, 5 years ago. Now it’s microsurgery. Her scar is 7cm long (2½ inches). She wore plasters, no bandage.
I expected a big scar with lots of bandages to and was prepared for that.

It just shows that 2-year information is already too old.




========================================================

Emailed information

For those who we forgot to inform, two weeks ago we got the message that Lotte was going to be operated on monday 4th october.
We had to go to Oslo on friday in order to have her checked before the operation and there they informed us that they were offering to implant two cochlear implants instead of the usual one implant. So she will be able to hear with both ears!!!! She'll be able to hear where sound comesfrom, hear better in noisy environment and learning to speak might be easier as well. This was incredible. We thought about arranging for a second implant ourselves and then this offer comes along...

Operation on monday went extremely well. at 11:45 they were finished (started at 09:00) and shewoke up around 12:30. 15 minutes later she was doing puzzles. The artificial morfine they gave her meant nothing to her. She just kept on playing... and trying to remove the irritating line from her foot.
So back to the ward where she continued playing until she felt sick, threw up and started eating straight after it.
A paracetamol at 15:30 and after that it was just like normal. (This was the last painkiller she had.)
Except, she looks like Dopey - the dwarf from Snowwhite - with the ears standing out like they do. (The swelling is causing that, not the implants.)

So, we were running after Lotte monday-afternoon, tuesday the whole day and on wednesday we were allowed to travel back home.

The external fitting of the equipment, and with that the first time she will perceive sound, will be done in November (22nd-25th) after the wound has healed and the implant has settled in the tissue behind her ear.The type of implant she got is the newest and finest of Cochlear, called Nucleus 4. (Correction - Renamed "Freedom") Even thought here is no information about this on the website of Cochlear (http://www.cochlear.com/) it looks almost the same as the Nucleus 3.

Zegening

Wanneer ik 's middags naar het vliegveld in Sola rijdt (vanuit Forus), schijnt de zon in mijn rug. Het is de woensdag erna, en Lotte is twee dagen geleden geopereerd.
Ik ben een dag eerder naar huis gegaan. "Cloggy" is met Lotte in Oslo gebleven voor de laatste check voor Lotte ontslagen wordt.

Op weg naar het vliegveld rijd ik met de zon in mijn rug en een donkere lucht voor mij, een perfecte regenboog tegemoet. Geillustreerd door prachtige muziek van de Lion King onderstreept dit mijn blijdschap en dankbaarheid.Vlakbij het vliegveld nadert de muziek een climax en terwijl het lijkt alsof een engelenschare juigt, komt als vanuit het niets het vliegtuig tevoorschijn met daarin mijn lief en mijn lief. Het vliegt onder de regenboog door, schuin over mijn hoofd waarna het vervolgens landt.
Woorden schieten tekort om mijn gevoel te beschrijven. De tranen stromen over mijn wangen. Wij zijn gezegend..

2004-10-3rd and 4th - Post-operation

Here are pictures on the day of the operation (Pre and post-op), and here on the second day. The third day she went home and was greeted with cake by her brother and sister...
For the interested; have a look at the wounds. There was hardly any bandage around it and if you compare the first three days, you can see that apart from the swelling, it looks fine.

Regarding pain:
The only painkiller she got was 1 asprine. And this after getting 2 implants in one go.!! She was annoyed by the IV-drip/fluids that she got (via the foot) and a bit groggy for the first 2-3 hours. But when the IV was removed, she was up and going.
To give an illustration: She was using the tricycle in the hospital after about 4 hours. Much to our despair, trying to hold her back - to no effect.

So glad nobody filmed us.... running after her!

Nog geen 4 uur na de operatie zat ze op een driewieler met twee ouders om haar heen, omdat we zo bang waren dat ze ergens tegenaan zou lopen.

Opgelucht waren we; we hadden immers geen idee hoe we haar aan zouden treffen, en we hadden ons voorbereid op een hoopje ellende. Maar Lotte, die wilde spelen. En koekjes! En het infuus eruit... Dus maar snel van de verkoeverkamer naar de afdeling getransporteerd...

Verassing

De grote verassing kwam op vrijdag 1 okjtober, toen "Cloggy" met Lotte naar Oslo was gereist voor de opnameprocedure voor Lotte's CI-operatie. De week ervoor was besloten dat de resterende patientjes op de wachtlijst twee-zijdig CI zouden krijgen, en Lotte was het tweede kindje.
Onze blijdschap was niet te beschrijven. Hoe ongelofelijk veel geluk and wat een goede timing. Lotte krijgt nu het beste uitgangspunt, en die mededeling kwam zo maar uit de lucht vallen.

2004-10 (October) - Pre-Operation

The operation was scheduled in October 2004. 21 months after we discovered "officially" that she was deaf. She was 26 months old.

A preop/intake friday 1st of October, and the operation on the following monday, the 4th of October. We didn't stay in the hospital, but went home in between.


Finally - she was operated. And, as one of the first in Norway, she was offered bi-lateral Ci in 1 operation.... YES THANK YOU!!!!
We thought about that allready, and decided that in time we probably would do it.



Here's a picture of an X-ray with bi-lateral CI. (Not Lotte) It gives a good impression about the size of the actual electrode..... (n.b. the big round circles are the eye-sockets. Behind there you can see the small spiral of the electrode.. )

Why would we want bi-lateral CI??
It's controversial because the idea is that the first CI is really a major improvement. The second one has less effect. The benefits are obviously that with bi-lateral CI one can hear where the sound comes from. Also, noisy environment is easier to handle because the brain can filter out a lot of the noise. This is obvious when listning through a phone. Noise on the other side is heared clearly while the person on the other side might not be bothered.
But in addition, when one CI fails, the other is still available.
Obviously, it will be two operations, but I don't believe it's double the risk. Another argument against might be that when CI is implanted in both ears, there is no option when new techniques arrive. (Stemcell for example)
But, if this would happen in 10 years, the auditory nerve would not have been used for 10 years, and who knows what the effect of that would be.

So, when we were offered bi-lateral CI in 1 operation, we gratefully accepted.