Diaphragm surgery 4 - report

ENAND
Below is a report of Gideon's (4th) diaphragm surgery
(Details last modified on 1-3-2017)
Reason for operation2 years ago grew a lump on Gideon's back which they did not know what it was. In the end, it got him operated and it turned out to be an inflammation originating on the (gortex) patch used to seal the diaphragm during the 3rd surgery when he was 4 months old.After this discovery, the patch should actually have been surgically removed. But because Gideon's health was otherwise doing very well, and because of the complications of the 3rd surgery due to adhesion of the organs from the surgeries before, the risks were too great and they did not dare to do it.Six months ago, when he had a pneumoniareceived (or in retrospect, probably already the recurrence) his health deteriorated rapidly. This continued, accompanied by a lot of coughing and spitting, and his stamina became less and less. Late last year, after many tests, they found out that he had a relapse had (another open diaphragm) and that surgery was now necessary. But he was now malnourished (also due to frequent spitting up) and needed to gain strength before he could undergo major surgery. For this, tube feeding was the advice.When placing the duodenum probe they found out by "chance" on the second attempt that he had a chronically inflamed oesophagus and that the seal between stomach and oesophagus was not present. This would also eventually require surgery.After placing the tube and getting tube feeding as well as medication to combat the inflammation of the oesophagus, Gideon is doing somewhat better again. He is gaining weight, getting more energy and having fewer spit-up moments.But surgery is inevitable.
Day of surgeryThe surgery took place at Radboud UMC in Nijmegen, 1 of the two centres of expertise in the Netherlands on CHD. Gideon was also born here and had the first three operations. At 09.00h, we drove him to the OR. Around 09.45h he went under anaesthesia and around 11.00h after all infusions and preparations were done he went under the knife. At 15.00h, we got a call that they were ready and at 16.15h he entered the ICU. Around 16.45h, we were allowed to join him.The operation itself took about 4 hours in total. A team of 3 surgeons, 2 doctors and a slew of people for other important things like keeping an eye on Gideon's vitals.It was a long sit for us, but fortunately it didn't take much longer than planned.
The operationAs far as we now know and spoke to the surgeon, they saw and did the following:They "opened up" Gideon on the scar he had from the previous operations. In the surgery, as expected, they saw a lot of adhesions. They worked through that millimetre by millimetre. No damage. And once they got past that, they could easily reach the oesophagus. But first to the diaphragm.Where they had a bit more difficulty reaching was the right side where the diaphragm would be open. When they got to the part where the patch should be, they saw a large mass of unknown tissue, but no patch. A patch along the right back wall which they did not recognise very well and a large lump where the patch should be.Slowly and carefully, piece by piece, when they got to the inflammation of the unknown tissue, they removed parts they were sure were not organs or other important things, and finally the thickened part (the lump) from where the patch was. What they discovered in the thickened part was a hard mass and when they broke through it unknown fluid with the patch in it. So the patch and inflammation were encapsulated like an egg and the reason why Gideon was never really sick from it. The body created something around it for protection.When they had removed it all, they could also look a little bit into the chest cavity and see the lungs (which they don't often get to see). What they saw there was the left lung not quite able to unfold properly due to what looked like adhesions at the bottom. With the finger through the hole, the surgeon was able to loosen the adhesions a bit and then they saw the lung bulging very nicely. They think that what they saw on photos earlier at the bottom of the lobe of the lung (which was thought to be an underdeveloped piece of lung and a possible source of infection or pneumonia) was probably this adhesion and probably fixed with this as well.
To close the hole in the diaphragm, there were 3 options: Closing the hole with your own material (would have been nicest, but very unlikely as that had also failed the past 3 surgeries)Closing the hole with a gortex patch (the same patch that was already there, but only possible if there was not too much inflammation. But a better option than the bio patch.Closing the hole with a bio patch (a temporary solution to fight the inflammation properly but which has to be replaced again after six months, and high risk of early recurrence). The muscle adjacent to the patch had become thick and tough in response to the inflammation. With this muscle, they were able to completely close the hole in the diaphragm. How to make it up. In the previous diaphragm surgery, they had to use a patch because there was not enough bodily material to close the hole. Now the inflammation of the patch has caused the body to develop something as a reaction that allows the hole to be closed with the body's own material.So he has patch anymore! How extraordinary! With this, a whole host of possible complications now and in later life are also a thing of the past. But so now also no more inflammation! At the oesophagus they performed a fundoplication. A piece of oesophagus like a tie around the bottom of the oesophagus to create a narrowing to the stomach. It is now a bit of discovering whether this is not too loose or too tight, but that was done by feel and not good to test otherwise. They were otherwise very pleased with it.
The umbilical hernia they also saw but couldn't do anything about it properly because Gideon's connective tissue for it was too thin and porous to use to seal that bit. But this is purely cosmetic and could possibly be done again later.
When the operation was complete he had a tube in the nose (was already but has to stay for a while), a long line (drip) in the neck, epidural in the back (drip), a drip on each wrist, a drip in the foot, a drain in his chest, a bladder catheter, a gastro-catheter and a 20cm abdominal wound. They said they held and moved just about every organ during the operation. But after 5 days later, he was off all the morphine, walking around again and only had a drip in his hand (and the gastro-catheter he has to do with for a few more weeks).A week after the operation, we are back home. The gastro-catheter will stay in for a few more weeks and we will continue the tube feeding for a while so that he can regain his strength and until he can eat enough on his own again.
ConclusionHow grateful we are with how things went. Both the course towards the operation and the operation itself. First of all, that Gideon survived! But that Gideon came through it so well and how they were able to fix the problems that were present in his body. An accumulation of bizarre events that went wonderfully for us. We truly believe that God 'turned it for the better'. Such a cliché, but again become reality for us! All the investigations before this and luckily finding out that the oesophagus to stomach does not close properly. And then the surgery. Discovering the lung that doesn't seem to be functioning properly due to an easily fixable flaw, removing inflammation completely and finding a muscle that is fit to close the gap due to the inflammation. To top it off, the successful recovery, which everyone (including the doctors and nurses) looked up to tremendously and which is truly a miracle. No more words, thank you Lord!!! 
Below is a report of the (4th) operation of the diaphragm Gideon
(Details Last updated on 1-3-2017) Reason for surgery2 years ago there grew a bump on the back of Gideon and they did not know what it was. Eventually he was operated and it turned out to be an infection that originated in the (gortex) patch that closed the hole in the diaphragm during the 3rd surgery when he was 4 months old.After this discovery, the patch would actually have to be surgically taken out. But because it went very well with the health of Gideon at that point, and the complications of the 3rd operation by adhesion of the intestines because of the operations before, the risks were too great and they dared not to.When he got pneumonia six months ago (or probably already the sliding hernia), his health rapidly decreased. That remained, accompanied by lots of coughing and throwing up, and his stamina was less and less. Late last year they after a lot of examinations they came to the conclusion that he had a sliding hernia (re-open diaphragm) and now an operation was really necessary. But he was (also because of the throwing up) now malnourished and needed to convalesce before he could undergo major surgery. Gavage for this was the advice.When placing the probe duodenum for the gavage they found out at the second attempt by "coincidence" that he had a chronically infected esophagus and that the closure between the stomach and esophagus was not present. An operation was required to fix this too.After placing of the probe and thanks to the gavage, as well as drugs to counteract the infection of the esophagus Gideon was doing better. He gains weight, gets more energy and fewer moments of throwing up.However, an operation is inevitable. Day of surgeryThe surgery was done at the Radboud University Medical Centre in Nijmegen, one of the two centres of expertise in the Netherlands in terms of CHD. Gideon was also born here and operated the first three times. 9.00am we brought him to the OR. Around 09.45am he went under anaesthesia and around 11.00am after all infusions and preparations were done, he went under the knife. At 3.00pm we received a call that they were done and 4.15pm he arrived in the ICU. Around 4.45pm we could go to him.The operation itself has lasted a total of about 4 hours. A team of three surgeons, two doctors and a few people for other important issues such as keeping an eye on Gideon's vitals.For us it was a long ride, but it has fortunately not much longer than originally planned. The operationAs far as we know now and have spoken the surgeon, they have seen and done the following:They "opened" Gideon on the scar he had from the previous operations. At the surgery they saw as expected much adhesion of the intestines. They worked millimetre by millimetre through it. No damage. And once they were past they could as easily in the esophagus. But first to the diaphragm.Where they needed to go the right side where the diaphragm would be open was more difficult. When they came to the part where the gortex patch should be, they saw a great mass of unknown tissue, but no patch. A part of tissue along the right in the back what they do not recognize and a large bump on the spot where the patch should be.Slowly and carefully, piece by piece they removed the unknown tissue parts where they were sure that they were not organs or other important tissue, and eventually removed the thickened portion (the bump) of which was the patch. What they found in the thickened part was a hard mass and when broke through an unknown liquid with the patch inside. The patch and the infection were thus encapsulated as a kind of egg and the reason why Gideon never really got sick. The body has made something around it for protection.When they took some of the infected tissue away they could look in the chest cavity through a hole and see the lungs (which they do not often get to see). What they saw was the left lung which is not quite good could inflate by what appeared to adhesions at the bottom. Then the surgeon was able to clear the adhesion with his finger through the hole the surgeon, and when it got loose they saw the lung inflate quite nice. They think that what they saw earlier on x-rays at the bottom of the of the lungs (which was thought that it was an undeveloped piece of lung and a possible source of infection or pneumonia) was probably the adhesion and hereby also corrected. To close the gap in the diaphragm, there were three options:Filling the gap with own tissue (would have been the best, but very unlikely because the last three operations was not successful)Filling the gap with a gortex patch (same patch as there was already, but only if there is not too much infected. But a better option than the bio patch.Filling the gap with a bio patch (a temporary solution in order to fight the infection but must be replaced after half a year, and high risk of early sliding hernia).
The muscle that was lying against the infected patch reacted in a way and as a result became thick and tough. They have been able to completely close the hole in the diaphragm with this muscle. Go figure. In the previous diaphragm-operation they had to be used a patch because there where not sufficient endogenous material present in order to be able to close the hole. Now the infected patch was the cause that the body in response had developed something so that the hole could be closed with the endogenous material.So no more patch! How wonderfull! With that a lot of potential complications now as well as later in life are gone. But, so is the infection! In the esophagus they have carried out a fundoplication. A piece of the esophagus was used as a "tie" to the lower end of the esophagus in order to create a constriction to the stomach. We have to see if it is not too loose or too tight, but that's done by feel and not very well testable otherwise. But they were very satisfied. The umbilical hernia they saw but they could not do some good because Gideon's connective tissue is too thin and porous to use to fill that piece. But this is purely cosmetic and could be done later. When the operation was finished, he had a feeding tube in the nose (was already there but needs to stay a little longer), a long line (IV) in the neck, epidurally in the back (IV), an IV in the foot, an IV in each wrist, a drain in his chest, a bladder catheter, a gastro-catheter and a belly wound of 20cm. During surgery they in their own words handled pretty much every organ and moved them around. But five days later, he was off all the morphine, he ran around and he only had an IV in hand (and gastrointestinal catheter he still needs to have for a couple of weeks).A week after the operation, we are back home. The gastrointestinal catheter will stay in for a few weeks and tube feeding we remain to give so he can recuperate well and until he can eat enough himself. ConclusionHow grateful we are with how it has expired. Both how we came to this operation as well as the operation itself. First of all, Gideon survived! But Gideon has come through so well and how they have addressed the problems that were present in his body. An accumulation of bizarre events that have resulted in this miracle for us. We truly believe that God "has changed things for the better." Such a cliche, but again become a reality for us! All the examinations before and the accidental find that the esophagus did not close properly to the stomach. And then the operation. The lung they discovered that did not seem to be functioning properly because of an easy to fix defect, infection removed completely and a muscle that is usable to close the hole because of the infected patch. And the icing on the cake, a speedy recovery where everyone where surprised of (including doctors and nurses) and what is really a miracle.No words, thank you Lord !!!

Comments are closed.


Messages 1 up to and including 9 out of a total of 9
 

Gre. Nagel from Hulshorst

Sunday, 19-03-17 17:19

An extraordinary operation. God works miracles. Glad you were also able to experience peace and trust during this exciting time.
Kind regards,
Gre.

 

Joke and Ton from Leende

Sat, 04-03-17 11:10

Oh Marieke and Nathanaël how wonderful that everything went so well! Amazing surgeons used all their knowledge and skills to help him so wonderfully. We are a bit "strange ducks in the hole" here, because we do not believe in God, as you know, but in the loving and expert commitment of doctors and nurses. This has proved itself once again. We hope Gideon's recovery will be quick!
Much love, also from grandma for the three of you!

 

Joni

friday, 03-03-17 21:11

Wow.... How special and a God's miracle!!! All glory to Him and we thank for the good doctors! And the incredibly good care & pure love of parents towards their child, this alone is a healing power!

 

Mattanja

friday, 03-03-17 15:57

goosebumps ... so special!

 

Evert from Hong Kong

friday, 03-03-17 07:14

Thank you so much for this comprehensive story with all its twists and turns. As if we could look over the doctor's shoulder. Gideon must be essentially very strong that he has been able to get through all this like this. That is a reason for hope and gratitude. Evert

 

Gerrie Colenbrander from Amersfoort

Thursday, 02-03-17 14:04

Very fine God is great Love to you

 

Marijke van den Heuvel from Leusden

Thursday, 02-03-17 09:27

I,Am quiet about it, Thank you Lord for this great miracle. Xxx

 

Gre Van Overbeeke from Bussum

wednesday, 01-03-17 23:01

What a great miracle, first of all for Gideon , and also for you, his mum and dad .
Thank You, Heavenly Father, all honour is due to You. I trust and believe that further recovery will go as well.
And then a quieter time will dawn for you all.
Kind regards, Gre:-)

 

Matthieu

wednesday, 01-03-17 20:10

Unbelievable! What a great miracle indeed. And what a relief that he no longer needs to go under the knife for the patch!
We are speechless

 
 
en_GBEnglish