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| Aleds early days |
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| Written by Neale | ||||||||||||||||
| Monday, 28 January 2008 | ||||||||||||||||
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When Gaile was pregnant with Aled we had no idea that he was to have loads of problems. Gaile had gestational diabetes which meant that the hospital was carrying out extra ultrasound scans to make sure that things were okay.
Aled was born on a Monday by caesarean section weighing 2.162 Kg (4lb 12oz), He was in the breeched position and had the cord wrapped around his neck 7 times, so Aled was really lucky to be alive. The doctors immediately noted that he had an imperforate anus which needed to be sorted.
Aled had his first trip in an ambulance on Tuesday morning when he was transferred to Southampton general hospital so that they could look at his heart and (more importantly at the time) sort out the problem with his bowel by having a stoma formed to allow a colostomy bag to be fitted, and then at least he could start eating.
Neale went with Aled to Southampton but Gaile had to stay behind in Plymouth because there were no beds available for her. Up until then we only knew about the problems with Aleds bottom, heart and hands as further investigations where to take place.
On Tuesday afternoon Aled had another scan, this time on his kidneys, they found that he had one kidney that was Cystic which would possibly die off on its own and that the second was enlarged which hopefully would sort itself out in due time.
On Wednesday Neale was told that the only way for Gaile to come to Southampton would be for her to be discharged from hospital (2 days after a Caesarean). She was discharged and transferred to Southampton on Wednesday morning.
Aled had the operation to form a stoma on the Wednesday afternoon and while he was in theatre Gaile arrived at the hospital which (as you can imagine) was really emotional for both Neale and Gaile. The rest of that week was a nightmare for them as they were given the full rundown of what problems Aled had.
Since he was born he was not fed real food until a day or two after the stoma operation, then when he was allowed food he was given 1ml of milk every couple of hours, then two ml and so on for about a week until they where sure that his bowel and stomach could cope with the food as well as the discharge from his stoma.
During this time the full extent of Aleds problems came to light, and they are:
We stayed in Southampton general hospital and Princess Anne hospital (also in Southampton) for the next 6 weeks as Aleds weight had dropped to 4lb 5oz (because of his stoma operation) and the surgeons wanted him to be a bit heavier. Aled was then discharged home for a couple of weeks to allow him to put on some more weight as they needed him to weigh 3 Kg for the heart operation.
The next 10 -14 days where really good for the three of us, it meant that we could have a little bit of normal life. The downside was that all the home visits would start, so we had a visit or two just about every day which was a nuisance at times but it meant that the support that we would need would at least be in place.
We returned to Southampton General on the 27 October 2003 ready for the heart operation on Tuesday 28 October. All the nurses made a big fuss of Aled when we returned, and they couldn't believe how much he had changed in less than two weeks.
The operation went well even though the hole in Aleds heart was larger and more complicated than expected. The doctors were hoping to take him off the ventilator first thing on the Wednesday as all had gone well during the operation and during the first part of Tuesday night, but things went wrong and Aleds heart seemed to struggle quite a lot, to the point that the relatives were contacted and told to be prepared for the worst news possible. After making the call to the family Neale and Gaile returned to PICU and within a short time Aled turned a corner and started on the road to a quick recovery.
Eventually Aled came off the ventilator on Friday morning, and left the Intensive care unit to go back to Ocean ward to recover. From then on he did really well, so well in-fact that he was discharged home on Tuesday afternoon (7 days after the operation).
We got home from Southampton at 8:30 pm, at 11:00 pm we received a phone call from Southampton saying that Aleds blood results had shown an infection and that he was to be rushed to Derriford hospital for treatment.
While Aled was being admitted into hospital he had to have blood taken again for tests, but because he had had a lot done lately there was no where for his blood to be taken from. So the doctors decided to shave part of his hair away and placed a Venflon into the top of his head. This upset Neale and Gaile but it was probably the best place for it to go. Aled stayed in hospital for a couple of days but luckily they found that there was no infection and the results where probably due to the heart bypass machine which sometimes causes the blood to show an infection even if it doesn't have one.
Aleds next operation was in March 2004 which was the first part of the Pull-thru operation (operation to make him an anus). This was a fairly straight forward operation and the only bit that was upsetting was using Dilators to increase the size of the anus as Aled grew up.
His next operation was in August 2004 and this was to reverse the stoma and therefore allow the bowel to discharge normally into a nappy. Before the operation the doctors gave Aled a drink to clear his bowels this stuff was incredibly efficient. The time for the operation drew near and then we were told that it was postponed for 24 hours but he was not allowed to eat.
When Aled did have the operation it went well. Aled was not allowed to eat for a further 4 days, which was a bad time, but luckily Aled came through it and was finally allowed to eat 6 days after the initial clear out.
The next few weeks were very hard as no amount of preparation was enough to stop the onslaught of nappy rash. It took a very long time to get it under control, but luckily once under control it disappeared fairly quickly.
Aleds next operation was his Pollicization; this moves the index finger into the thumb position. This would then allow him to have a pincher on his left hand. This has worked really well and we are really pleased with the use Aled gets from his new thumb.
Aleds last major operation was to release a tethered spinal cord. This was a hard time as we had to keep Aled flat on his back for 5 days after the operation. The first few days were okay as Aled was in no fit state to move but then he wanted to move and was getting really bored. This was quite stressful as he is a very active child and could not understand the word “no”.
We are still awaiting operations for Aleds hand but all going well they will be the last that he will have. He has lots of multi disciplinary support, but he is definitely a strong minded child with plenty of attitude which will hopefully help him through the rough times.
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