After the surgery

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The morning of the surgery they wake me up around half past six. I go to the OR at 7 AM and I don't have to do a lot. I want to see if I can pump some milk for B. because it will probably not be easy to do right after the surgery. I am quite proud when I pumped 300 ml of milk in a fairly short time and after 1.5 years of breastfeeding. B. can at least still drink my milk today and then we will see how it goes in the coming days.
Just change clothes and just before I am taken to the operating room I get tablet with sleeping medication to start the surgery a bit more relaxed. I am the first patient at the preparation room. The medication does its job quickly and the next thing I know is that I am in the IC. Later I hear that I have been awake for about 20 minutes in the OR before the surgery. I don't know anything about that anymore, that is a scary idea.
At the IC it’s quick obvious that a lot has been changed in the hospital because of COVID-19. Anesthesia employees who work in the IC because there are others on the special Corona IC. I can only respect how they deal with this. The care for the patients continues as usual, but I notice from the sometimes searching way of working that everything is different from normal.

After the surgery they fastened my chin to my chest with a suture. This is to avoid making unexpected head movements that put too much tension on the wound and trachea. They have removed almost half of my trachea so I should not make the extraction with my head, ie put my head back. Because I would like to know what it looks like, I ask at the IC if they have a mirror. They have to search for but eventually they found one and I can see the suture. I also have a feeding tube because I am not allowed to eat and drink for the first 5 days to give the surgery area a rest.


The surgeon came to me and told me that the surgery went according to the most positive scenario. The tumor was not around the nerve and the blood vessel. So they "just" removed a part of my trachea.

Wednesday April 1

I go back to the department around 10 am, there I have my own room. I am very tired so slept most of the day.

Thursday April 2

The nurses want me out of bed today. Just wash and change, I am a bit afraid because of the wound and I am still so tired. In the end it was very nice to be out of bed and in the afternoon I ask the nurses to help me out of bed again so I can sit on a chair for a while.
Yesterday B. had to have little of me. Weird mom with all kinds of tubes and in a crazy bed. Today he wants to sit with me and he even wants to drink some milk. That does me so well, just a nice moment together because I miss that so much.

Friday April 3

Every day a step forward, I find myself starting to set goals for myself. Today I want to get dressed and walk around the unit.

I had a restless night due to a squeaky IV pump, rumbling bowels and an irritating feeding tube. The feeding tube makes me nauseous and it is annoying with swallowing. I can't wait for the stupid thing to get out.

Already in the morning I achieved both goals for today, how proud you can be of yourself after a walk around the unit. I am already much more out of bed today, hardly sleep during the day and make another walk around the unit in the afternoon.

Saturday April 4

Because I only have a limited visit, the eldest two cannot come. All three of us find it difficult and stupid, I have asked whether they make an exception, but unfortunately that is not allowed. To make it a bit better, they come for a "window visit" this afternoon, they outside in the square in front of the hospital and I inside at the window. I am really looking forward to it and did a lot of crafting yesterday.

When they arrive I can see them but the distance and the sun ensure that they cannot see me properly. We call so we can hear each other and see a little bit. They have all made nice things for me and they are allowed deliver them to the unit. When they are looking for a nurse they walk past my room. It is so difficult to keep a distance I really want to give them a hug. When they are gone I have time to unpack their package and hang up all the cards and crafts. Even though life is not a party at the moment, with a few garlands and nice cards we make it a little better.

Sunday April 5

The tightening of my chin to my chest and the resulting spasmodic posture begin to take its toll. My neck, shoulders and upper back are completely tight and hurt. I couldn't find a comfortable sleeping position. After consultation with the doctor, I get extra pain relief and a muscle relaxant for the night.
The goal I set today is to climb stairs. Before I can go home, they want to be sure I can climb stairs. I went up and down two flights of stairs with the nurse yesterday but I want to do more now. Because it went fine yesterday, I can do it by myself as long as I report that I go to the stairs. I am on the ninth floor and I would like to see the view from the top floor (13th). So up I go to the 13th and then find out that you cannot look outside because the stairs lead to storage areas where I cannot enter. I climb the stairs again in the afternoon first a few stairs down. To the fourth, to eleven and then back to the ninth. I have to catch my breath when I get back, but as one of the nurses says: I also have to do that when I have walked so many stairs.

Monday April 6

Finally, today the feeding tube can be removed. When the doctors come by, they indicate that the suture must first be removed and that a swallow test must be done by the ENT doctor. When the suture is out I immediately get a neck collar. I have to keep it on for the next two to three months as a reminder that I can't move my head back. The doctor has told the ENT that the swallow test can be done, but they indicate that it is not known whether they have time for that today. That is a huge disappointment because I was counting on the feeding tube getting off today.

Finally, an hour later, two ENT doctors are standing next to my bed with the device to do the swallow test. I get a tube with a camera through my nose so they can see my vocal cords. Then I have to eat a some blue apple sauce, they made it blue so they can see it clearly on the camera. The swallowing is fine and I get blue water, that is also going well. Finally I get a biscuit, also that swallowing is fine. The biscuit tastes so good to me after a week without eating that I ask if I can eat it completely. What an enjoyment can a simple biscuit be.
When the doctors are gone, the feeding tube can finally be removed! I can start with some liquid things like custard and tea. The eating and drinking goes fine but I do notice that the muscles you use when swallowing have become a bit lazy.
In the evening I want something more solid food, eating that is going fine too.

Tuesday, April 7

When the kitchen service comes by for breakfast, they tell me which liquid food they have. I indicate that I would like to eat a sandwich because last night that went well too. It is so nice to have a normal breakfast again.

When the doctors come by and hear that eating is going well, they indicate that they want to consult with the nursing staff, but if they approve I can go home today.

We are home around lunchtime, we eat some lunch and then I go to bed with B. It turns out I am not tired, but resting is good for me. Because I feel good and I really miss W. an T., I ask M. if he will pick them up. It is so nice to have everyone around me again!

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