Hospital day 4

23 February 2017

EN	AND
16.00u Another day of lots of impressions and visits for our little guy. Examination here, thorax picture there, many different faces and in between falling asleep exhausted. Now when someone comes in and gets too close, the first question is "Aren't they going to do anything to me?". He indicates very well what he does or does not want, but goes along well when things really have to be done. He has fortunately remained himself.Just now the wound nurse removed the big plaster on the belly. That was not fun, but fortunately no new one had to be put on. The abdominal wound looks very good. Exactly where the scar from the previous operations was.We also saw how the gastro-catheter (so similar to PEG. Does the same thing but is inserted in a different way) on the abdomen has to be cleaned. This has to stay in for 6 weeks and is mainly constructed to let excess air out of the stomach if it cannot get out properly. So we had to learn to clean it ourselves at home.There is also a good chance that the thoracic drain can come out very soon. Had a thorax picture taken this afternoon to see how it sits and if it is still needed.Also a lot of annoying moments today of washing, turning, bed cleaning, removing stickers. Everything hurts and is sore. He has had many crying moments today, and is quite exhausted from all the visits. We let him rest as much as possible.	4.00pm Another day with a lot of impressions and visits for our little man. Research here, chest radiograph there, many different faces and between everything exhausted and sleeping. If somebody enters and comes closer, the first question is "Are they going to do something with me?". He is very good at saying what he does or does not want, but is going along when really need. We are glad he remained to be himself.They just cleaned the wound and removed the large plaster from the abdomen. That was not nice, but fortunately did not needed to give him a new one. The abdominal wound looks very good. Exactly on the same spot where was the scar was of the previous operations.We have also seen how the gastrointestinal catheter (so similar to PEG. Doing the same but is put in a different way) should be cleaned on the abdomen. This must remain in there for six weeks and is especially constructed to allow excess air from the stomach if it can not escape on itself. So we also had to learn how to clean for when we are at home.There is a high probability that the chest drain can be removed. This afternoon we had to make a chest x-ray to see how it looks and whether it is still needed.Too many annoying moments today. Washing, rotate, bed cleaning, patch removing. Everything hurts and is painfull. He has had a lot of crying moments, and was pretty exhausted from all visits. We let him rest as much as possible.
10.15u We slept a little better last night. With Gideon, alarms went off continuously last night and he was in a lot of pain and nauseous. In the end, they took 30cc of air out of his stomach via gastro (PEG tube) and from 01.30h he seemed to be sleeping deeply and no longer sighing and groaning in his sleep. Since then, Marieke who slept with him also slept reasonably.Yesterday, the long line from his neck and the arterial line from the wrist were taken out. Today they will at least try to reduce the morphine. We know from last surgery 3 years ago that he had severe withdrawal symptoms so we hope it goes better this time. Fortunately, he is getting less at the moment and also for a shorter time.	10.15am We have slept slightly better. In Gideon's room alarms went off continuously and he was in great pain and nauseous. Eventually they pulled out 30cc of air from his stomach through the gastrointestinal (PEG tube) and from 01.30h he seemed in deep sleep and moan less in his sleep. Marieke who slept beside him slept fairly well too after that.Yesterday they have removed the long line from his neck and arterial line from the wrist. Today they are going to reduce the morphine. We know from previous surgery three and a half years ago that he had significant withdrawal symptoms so we hope that this time will be better. Fortunately he is currently getting less and had it for less time.

AND

16.00u
Another day of lots of impressions and visits for our little guy. Examination here, thorax picture there, many different faces and in between falling asleep exhausted. Now when someone comes in and gets too close, the first question is "Aren't they going to do anything to me?". He indicates very well what he does or does not want, but goes along well when things really have to be done. He has fortunately remained himself.Just now the wound nurse removed the big plaster on the belly. That was not fun, but fortunately no new one had to be put on. The abdominal wound looks very good. Exactly where the scar from the previous operations was.We also saw how the gastro-catheter (so similar to PEG. Does the same thing but is inserted in a different way) on the abdomen has to be cleaned. This has to stay in for 6 weeks and is mainly constructed to let excess air out of the stomach if it cannot get out properly. So we had to learn to clean it ourselves at home.There is also a good chance that the thoracic drain can come out very soon. Had a thorax picture taken this afternoon to see how it sits and if it is still needed.Also a lot of annoying moments today of washing, turning, bed cleaning, removing stickers. Everything hurts and is sore. He has had many crying moments today, and is quite exhausted from all the visits. We let him rest as much as possible.

4.00pm
Another day with a lot of impressions and visits for our little man. Research here, chest radiograph there, many different faces and between everything exhausted and sleeping. If somebody enters and comes closer, the first question is "Are they going to do something with me?". He is very good at saying what he does or does not want, but is going along when really need. We are glad he remained to be himself.They just cleaned the wound and removed the large plaster from the abdomen. That was not nice, but fortunately did not needed to give him a new one. The abdominal wound looks very good. Exactly on the same spot where was the scar was of the previous operations.We have also seen how the gastrointestinal catheter (so similar to PEG. Doing the same but is put in a different way) should be cleaned on the abdomen. This must remain in there for six weeks and is especially constructed to allow excess air from the stomach if it can not escape on itself. So we also had to learn how to clean for when we are at home.There is a high probability that the chest drain can be removed. This afternoon we had to make a chest x-ray to see how it looks and whether it is still needed.Too many annoying moments today. Washing, rotate, bed cleaning, patch removing. Everything hurts and is painfull. He has had a lot of crying moments, and was pretty exhausted from all visits. We let him rest as much as possible.

10.15u
We slept a little better last night. With Gideon, alarms went off continuously last night and he was in a lot of pain and nauseous. In the end, they took 30cc of air out of his stomach via gastro (PEG tube) and from 01.30h he seemed to be sleeping deeply and no longer sighing and groaning in his sleep. Since then, Marieke who slept with him also slept reasonably.Yesterday, the long line from his neck and the arterial line from the wrist were taken out. Today they will at least try to reduce the morphine. We know from last surgery 3 years ago that he had severe withdrawal symptoms so we hope it goes better this time. Fortunately, he is getting less at the moment and also for a shorter time.

10.15am
We have slept slightly better. In Gideon's room alarms went off continuously and he was in great pain and nauseous. Eventually they pulled out 30cc of air from his stomach through the gastrointestinal (PEG tube) and from 01.30h he seemed in deep sleep and moan less in his sleep. Marieke who slept beside him slept fairly well too after that.Yesterday they have removed the long line from his neck and arterial line from the wrist. Today they are going to reduce the morphine. We know from previous surgery three and a half years ago that he had significant withdrawal symptoms so we hope that this time will be better. Fortunately he is currently getting less and had it for less time.

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Messages 1 up to and including 3 out of a total of 3

Evert from Hong Kong

Fri, 24-02-17 01:43

Yesterday I thought about what I was like myself when I was 4. My respect for Gideon increases by the day. But also for you, who-however difficult it is-give him so much strength and confidence.

Gerrie Colenbrander from Amersfoort

Thursday, 23-02-17 13:12

Very nice of you to keep us informed,much strength to you God's rich blessing. A big hug from us, love

Inge

Thursday, 23-02-17 12:21

Always happy to read an update, thank you so much for always keeping us up to date; fantastic, hats off! and appreciation! for that. A big hug!