Duodenum probe
Pff what an adventure again... Just a report.
It is Tuesday
Off to Nijmegen for a whole bunch of interviews and a probe. We are expected at 08.30h so up and away early. The plan is for us to stay 1 night to check the probe.
On arrival, we were immediately given a room. It is nice to immediately have a quiet place to retreat to if needed. We are told that we can go to radiology at 9.30pm for the insertion of the probe. As this is a duodenum probe, it goes partly through the stomach to the small intestine and for this they need to be able to see with X-rays whether it is in place properly. Gideon prepared for it as best he could.
Three violent attempts later, we conclude that we have to find another way. During insertion, Gideon keeps gagging so much that it causes him to vomit and panic due to tightness in his chest. This is not going to work and is just too intense an experience.
An alternative is being considered. That turns out to be placing the probe under anaesthesia. Not what we would prefer, but still the best option in this case. Only there is no room to do this today. This will have to be done tomorrow or maybe Friday, depending on when there is space. It is now 12.30pm. We are back in the room. Gideon is finally allowed some food and drink as he was not allowed anything all morning because of the operation.
Checking into the Ronald mcDonald house. How nice it is that that exists say. Should you have the opportunity leave a little something for this wonderful initiative, please! Marieke sleeps there one night and I stay with Gideon. Do some shopping and play a bit. We are told there is room tomorrow. Luckily, not until Friday.
Wednesday
Both looked at the clock every hour. And Gideon fine at 05.20h with a very awake voice "I hear something in the corridor". I managed to stretch it until 06.00h but by then we were wide awake together. Or he was anyway.
08.00h report to Anastesia. Gideon sober since last night because he could be called for surgery any time from now. Depending on how many serious cases come in between, it will be his turn.
After registration, we are allowed back to our own section to wait. Then just play a little.
10.00am we get word that it probably won't be until around 12. We are holding out for even later.
11.00h Gideon is getting really hungry now. Tis what, we are in hospital because of his weight and this is already the 2nd time in a row that he is not allowed to eat anything for half a day.
12.00h We are actually up and running. Fine because it shouldn't have taken much longer for him either. Just getting ready and in bed to the OR.
12.05h Mom gets to go with Gideon as he goes under anaesthesia. 10 min later, she returns with a little trauma and we wait together until they finish the procedure.
13.00h We actually expected it to take only half an hour. Marieke gets to see him, max 1 parent. He is in the recovery room. He comes back bad. On oxygen. Vomiting a lot of mucus and severe saturation drops (to be seen because he is now on the monitor, but probably no different at home ). Even the nurse was getting stuffy.
2.30pm Gideon is allowed back to his room and I finally see him too. He is still not completely lucid and a bit off his game. After half an hour and 2 ice creams later, he is thankfully doing much better.
In the evening, the doctor who placed the probe stopped by. He showed us some pictures of the oesophagus and stomach they took during the procedure. What they discovered is that the oesophagus is quite inflamed and the connection between the oesophagus and stomach is completely open due to a malfunctioning muscle. That's a shocker. A hidden reflux. Since he was born? The cause of all that spitting up all these years? Why did they/we only find out now... all questions and a chunk of frustration. If only we had known earlier...?
It was a stroke of luck that we found out this way... If the probe had been inserted yesterday without any effort, we would not have found out until much later, or perhaps not at all. But this is going to have a tailspin. Wonder what the doctors say about it tomorrow after consultation.
Gideon ate reasonably well tonight, but spit it all out again just before bed. He did eventually go to sleep peacefully. This night we are going to test whether the food passes through the tube properly and whether his intestines process it well. If this goes well, we can go home tomorrow. Hopefully it will be a better night for all of us.
Thursday
Gideon actually slept in until half past seven. But then it was a rough day yesterday. And last night didn't go so well either. The tube didn't go through. Finally at half past 10 they pulled the tube back a bit in an attempt to clear the obstruction. This helped, but waking up a little guy who was already sleeping very deeply and taking off and re-applying the plasters was again not so much fun. But once it was running, Gideon got 500ml of tube feeding (concentrate 🙂 in 10 hours.
A quick soak in the ward's big bath and then we were explained about the probe and given all the stuff via Sorgente.
Gideon is still a bit cautious with the probe, but otherwise completely himself again, with all his cosy and funny comments.
Waiting for the prescriptions and doctor's approval and then we can go home!
Finally, at 15.30h, we are in the car on our way home. Many great experiences, but still a few traumas richer.
Tonight, Gideon has clearly already had a bit of processing, playing that his cuddly toy had to go into the CT scan, then go under anaesthetic and get a tube in his nose.
Now Gideon is trying to sleep in his own cot, with tube feedings on. We are curious to see how the night goes and how it goes in the coming weeks.
As for the further course of action, we still have to speak to the surgeon, who was unfortunately absent today, so we still do not know at what time Gideon will undergo surgery.
For now, we are going to enjoy rock-hard sociability with each other and we toast to a wonderful 2017 for all of us in which we know that God is good and with Him we can handle anything.
Comments are closed.
Messages 1 up to and including 10 out of a total of 10
Evert Peet from Hong Kong
Wed, 04-01-17 05:46
Dear Marieke and Nathanael,
Very impressed by your latest story. I would like to say so much, but it all pales by what you guys have to go through.
How manfully Gideon gets through this. And you guys no less. It must be very hard to watch it all happen.
All the best,
Evert
Rinus
Sat, 31-12-16 17:31
Dear Nathanael and Marieke.
Much strength
And I pray for healing
Bernard Smedema from Amersfoort
Sat, 31-12-16 09:58
Dear Nathanael and Marieke,
We are deeply impressed by your perseverance and resilience! We continue to proclaim and pray that there will be a breakthrough in little man's life!
Have a very happy New Year and see you soon.
Kind regards,
Bernard and Dorina
Bart And Esther from Hoogland
friday, 30-12-16 15:41
Dear people, what adventures all again! We pray with you for a speedy surgery and wisdom and insight for the doctors.
Hug from us.
Gerrie and Fré Colenbrander from Amersfoort
friday, 30-12-16 12:59
Hello dear people,
What a story, you should do something with this, a missed reflux is a medical miss, especially for a medical university clinic!!!
Lots of strength,
Kind regards,
Gerrie and Fré
Els Laman from Almere
Fri, 30-12-16 11:34
What a rollercoaster and what a lot of hassle I hope there will be an end to all those sick house visits now, and that Gidion may grow nicely.we keep praying for you.
Peter and Jacqueline Rothuizen
Thursday, 29-12-16 23:28
Dear Nathanael and Marieke,
How nice say that all those things were discovered when the probe was inserted! God knows everything and He knows exactly what your sweetheart needs! Now you can have a nice rest from everything. We also raise a toast to you at noon and have hope and expectation that in 2017 God's goodness and grace will be revealed even further!
Big hug from us
Fam Van de Kamp
Thursday, 29-12-16 21:42
Dear friends,what news say. We hope and pray that your canker may grow stronger so that
he regains more energy for his daily things.
Big hugs to you from the 4 of us????????
Peter Dijkstra
Thursday, 29-12-16 21:42
Dear friends,
How intense again, but happy to be back home.... Enjoy each other and hopefully see you soon and that all will go well, we pray for that!
Love Peet and Jen
Marijke Van den Heuvel
Thursday, 29-12-16 21:36
Boy oh boy 3 brave people, tears in my eyes,,, yes God is there, and know about it, that keeps you going.........I wish you a happy end and a super blessed 2017.
.