Survey results

The surgeon called us Dindsday evening, so we had some time to let it sink in.
The lung lobe that collapsed and seemed a bit unsettled was also seen this way on the CT scan in 2013, so they don't want to do anything about that now, thankfully.

But one - especially for parents with a 'CHD child' - oh so dreaded word has fallen. Another relapse. They have discovered that the chronically inflamed patch is no longer where it belongs, but has let go and created another hole or bulge. As a result, part of the stomach has re-entered the chest. This is the biggest reason Gideon is now 'chronically' ill and spits up so much. Actually, they still don't dare to operate because of all the adhesions, but there is no other option now.

On the one hand, we are happy that there is now an identifiable cause for last months' problems instead of great uncertainty for us and the doctors. But on the other hand, the harsh reality of surgery and its possible consequences. But Gideon needs surgery on his diaphragm, so a major and risky abdominal operation is going to take place.

However, the surgery is not going to happen within a few weeks, as the doctor told us that Gideon is malnourished. He weighs only 13 kg at 1.04m and already had few reserves, but because of the spitting up over the past few months, so now it is very severe. We were shocked by this.
Since he is now really too 'weak' to operate (and especially recover from that), Gideon has to gain weight first. This is incredibly difficult. The only meal he eats properly and keeps down is his lunch. At breakfast we barely manage to eat a cracker and after dinner he often spits everything out again. We already eat 6 times a day with him, so the quantity is okay, but now we still have to increase the quality of these meals.
We got nutridrink and we set up a sticker system to encourage him. This seems to be working 🙂

Next Thursday we have to go to Nijmegen again and hope that Gideon has made enough progress in weight. If not, a duodenum tube will be inserted the same day. This will run through the nose all the way to the small intestine, so that his stomach would be relieved and then Gideon will receive 'continuous feeding' through the pump. Of course, we are going for it to avoid that, but we can't cram food in with Gideon either, the diet we want to learn now has to be maintainable for a longer period of time....

Pfff... we feel sad and somewhat numb. It's about our son. Our son with his particularly sweet and cheerful character, his fun humour, his firm hugs and his funny sayings.
We don't want to lose him....

Comments are closed.


Messages 1 up to and including 18 out of a total of 18
 

Els Laman from Almere

Monday, 12-12-16 22:13

I am silent about it and can only pledge for you with our God

 

Ria den Hartog from Hilversum

Sunday, 11-12-16 00:05

I have no words for this. Especially the last of your report speaks volumes. What love and care speaks from it.
"I will be there"
dear greetings 'Ria

 

Corriejanne Michon from Amersfoort

friday, 09-12-16 23:06

Dear Nathanael and Marieke,

Wow, wow how intense. We pray for you, with Father nothing is impossible because His faithfulness colours the morning!!! Every single day. Know yourself in the shelter of the Most High, He is in control and He can be trusted. Lots of strength, love, trust and healing from His throne. Lots of love for the three of you

 

Peter and Jacqueline

friday, 09-12-16 20:36

Dear Nathanael and Marieke, Gideon is going to be fine, that faith lives in us, no matter how difficult the situation seems. We can imagine that sometimes, through it all, you no longer know how to pray, but know that there are people around you who will carry you in prayer.
Thick x,

Peter and Jacqueline

 

Annemarie Van Leeuwen from Vleutenque

friday, 09-12-16 19:36

Oh how difficult! No words for it.... big hug!!!

 

Barbara Kroese from Amersfoort

friday, 09-12-16 16:47

Dear ones, how intense! We pray that Gideon will come through this well!
Big hug!

 

Yvonne Nijs from Almere

Fri, 09-12-16 00:58

Dear Marieke and Nathanael,
What a sad news. I sympathise with you and trust that your little man is doing well.
Greetings, Yvonne

 

RoozeLizeMarietteAlex

Thursday, 08-12-16 23:00

(...) much love from us!

 

Jens and Iris from Elspeet

Thursday, 08-12-16 19:51

We feel the tension with you, have a boy of the same age and wouldn't want to be in your shoes, how intense this is, but also, you are a beautiful testimony, and the Lord has you and therefore also Gideon in His hand! Much strength in the time ahead and we pray hard with you!

 

Joke Kroeske

Thursday, 08-12-16 19:17

Dear Marieke&Nathanael, we are praying for your little man! Lots of love from us

 

Joke from Leende

Thursday, 08-12-16 15:53

The ??? Must of course !!!! Are

 

Joke Hilhorst from Leende

Thursday, 08-12-16 15:48

Oh dear treasures what a terribly sad state of affairs...????
I can imagine everything about this. I should also have surgery but they don't dare to do it in t Radboud.
I sincerely hope that Gideon gets strong enough for the operation and that he will make it! I wish you lots of strength and power! Also on behalf of Ton! ??????

 

Michael & Esther

Thursday, 08-12-16 13:14

Dear treasures,
What a spicy outcome this is! Another tough operation ahead. So much uncertainty again....pffff....
Please know that we are praying for you guys. Especially for Gideon, but certainly also for you! We have a loving Father, who has the last word.
Good luck darlings! We are here for you!
Big hug from us

 

Martine Voogd

Thursday, 08-12-16 13:13

Dear treasures!
What exciting times again
On the breach for our little great victor!!!
And for you, that you may experience God close by.
Thick love from us

 

Carla and Hedwi from Amersfoort

Thursday, 08-12-16 11:52

Dear Marieke and Nathanael,
It is heartbreaking to read this. Not again ,,,,,,,,, We, you of course especially, all of us do not want to lose him, this beautiful little miracle of yours. We call on our Lord and beg for rest, recovery, healing. Above all, we pray for His peace and protection. Hugs from us, Hedwi and Carla

 

Marijke from Leusden

Thursday, 08-12-16 11:31

Sweet family,
I sympathise and pray with you, that everything will go well and that peace and quiet will accompany you, although I can imagine that this is very, very, very difficult for you right now. Many prayers with you, love, keep courage, darlings!

 

Ap and Anita Verwaijen from Prinsenbeek

Thursday, 08-12-16 11:23

Dear people, we sympathise with julie and believe God will work a miracle.

Ap and Anita

 

Anneke Smedes from ALMERE

Thursday, 08-12-16 11:04

By now I have become a silent reader on your site, but have always included the prayer and thanksgiving points in my prayers. It is very sad that your little man, and therefore you too, are facing another operation. We continue to pray. And if you need anything practical .... just let us know. Lots of love from Harmen Otto and Anneke

 
 
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