Update on Callum
Hi, not been on in about 2 or 3 months as I've felt so low I just wanted to cut myself off from everything in the vain hope I could make Callum's illness go away by not talking about it. It didn't work.
Callum was scheduled to have a nissen in June or July time but we didn't like the surgeon in the end. He basically wanted us to leave Callum in hospital with a bunch of strangers 2 hours from our home. We weren't even allowed to make his bottles up ourself or feed him. We were allowed to change his nappy and have cuddles. Needless to say, we got the hell outta there!!!
Since then, Callum has gotten progressively worse. He is still on Omeprazole suspension (6mgs morning and 6mgs night) (yes this more than max - what do we know though eh?) Domperidone 3.4mls 4xdaily, Erythromycin 1ml 4x daily and Ranitidine 2.3mls 2x daily. He is almost 9 months and weighs a whopping 9.54 kgs!! (he was FTT only a few months ago)
Callum has recently had an MRI scan to check for abnormalities in the brain which could cause vomiting. This showed a subdural cystic hygroma (small one) which they think is too small to cause ANY symptoms. He has also had a repeat PH study ON medication this time which showed significant severe reflux. Not much better to the PH study he had a few months ago OFF meds.
So basically, he is almost 9 months, still vomits up to 20 times a day, albeit smaller vomits than he used to have. He still sometimes refuses feeds and back arches a lot. He cries all the time still and has developed a chronic nocturnal cough. He is scheduled to have the Nissen surgery on 1st November and hopefully this will be the end to our problems.
We are moving house a week on Monday and my husband is away with work. I HATE THE RAF!!! He will be away when we move house so I've gotta do it on my own. I am 7 months pregnant with our 3rd child and still have Callum to contend with. Life is good! I don't even have family nearby and our new house is 150 miles away. To top it of, it looks like we are moving to downtown beirut. My new house is a pre-fab and an absolute dive.
This is a slight insight into my bloody hectic life at the moment!!! We will get through it in the end though, we have got this far!
Jen x
Callum was scheduled to have a nissen in June or July time but we didn't like the surgeon in the end. He basically wanted us to leave Callum in hospital with a bunch of strangers 2 hours from our home. We weren't even allowed to make his bottles up ourself or feed him. We were allowed to change his nappy and have cuddles. Needless to say, we got the hell outta there!!!
Since then, Callum has gotten progressively worse. He is still on Omeprazole suspension (6mgs morning and 6mgs night) (yes this more than max - what do we know though eh?) Domperidone 3.4mls 4xdaily, Erythromycin 1ml 4x daily and Ranitidine 2.3mls 2x daily. He is almost 9 months and weighs a whopping 9.54 kgs!! (he was FTT only a few months ago)
Callum has recently had an MRI scan to check for abnormalities in the brain which could cause vomiting. This showed a subdural cystic hygroma (small one) which they think is too small to cause ANY symptoms. He has also had a repeat PH study ON medication this time which showed significant severe reflux. Not much better to the PH study he had a few months ago OFF meds.
So basically, he is almost 9 months, still vomits up to 20 times a day, albeit smaller vomits than he used to have. He still sometimes refuses feeds and back arches a lot. He cries all the time still and has developed a chronic nocturnal cough. He is scheduled to have the Nissen surgery on 1st November and hopefully this will be the end to our problems.
We are moving house a week on Monday and my husband is away with work. I HATE THE RAF!!! He will be away when we move house so I've gotta do it on my own. I am 7 months pregnant with our 3rd child and still have Callum to contend with. Life is good! I don't even have family nearby and our new house is 150 miles away. To top it of, it looks like we are moving to downtown beirut. My new house is a pre-fab and an absolute dive.
This is a slight insight into my bloody hectic life at the moment!!! We will get through it in the end though, we have got this far!
Jen x
Views: 0
Replies to This Discussion
-
Permalink Reply by Lisa on -
Hi Jen
I'm really sorry things didn't work out for Callum and you with Dr Thomson. I hope that when Callum does have the Nissen in November that it goes well. It must seem like one problem after another. I hope your move gets sorted out and you settle in ok. Good luck with the rest of your pregnancy.
-
Permalink Reply by DONNA CHURCHES on -
Hi Jen, I really feel for you, you poor thing. Ellis had the Nissen on 1st Sept,( on my page I have done a blog Ellis's story). Honestly there is light at the end of the tunnel, Ellis is a different child now. If you need any advice or help please don't hesitate to contact me as I know just how scary the thought of surgery is and the whole experience is very daunting but any questions just ask. Have they mentioned whether or not Callum will have a mic.key button placed in his stomach? I really hope youre ok, you and everyone on this site are amazing people , you have got this far I promise you you will get through this, just think it's one of your last hurdles to get Callum well again.
chat soon
Donna x
-
Permalink Reply by Jennifer on -
Yes you are right, I put 6 mgs, I meant 6mls. It's 2mg per ml. Haven't got a clue what I'm doing at the moment! He is actually on 24mgs. 12mg morning and 12mg night.
-
Permalink Reply by Jennifer on
-
What a coincidence, we are only 20 miles down the road from you! My friend lives at Scampton near the Spar. I've been in her drafty house loads of times! We are at Cranwell in an officer's quarter at the moment and I thought it was rubbish until we saw our new one at Brize! It's not too bad on the inside (hubby managed to convince the painters to let him have a quick look today). Where were you before Scampton? We were at Leuchars for 3 years then we have been here for 2. We are already looking for another base!
-
Permalink Reply by Jennifer on
-
Wow what a small world!! We are being seen at QMC too. Who is your consultant? We are under Dr Kirkham. We were under Dr Babu at Lincoln but he is an absolute idiot so we binned him!!! We just see Dr Kirkham now.
-
Permalink Reply by Jennifer on
-
Yeah we saw Dr Scammell when Callum was on the Neonatal ward there, we thought he was an idiot too! If you read my huge long post called 'worst day ever' you will see what I mean about Dr Babu. He is not a gastroeterologist by the way. He tells everybody he is but he only has an 'interest' in gastroenterology. He is just a general paed. He is also set to retire very shortly.
I think Dr Charlton is ok. He is the most senior gastro at QMC. We have met him a few times but he hasn't made any decisions about Callum. Dr Mary Weston is the 3rd person in the team at QMC. She is absolutely fantastic but she is most junior. Charlton and Kirkham are consultants and Weston is a registrar. I think Dr Kirkham is really good. It took us a while to trust her but she knows quite a bit. You do have to push her to get things done as she takes her time. She probably won't have very much to do with Sam on the 17th. For the PH study, you go in in the morning and go to Bastow lab to see a lady called Nichola. Take her with a pinch of salt. She will put the probe in and take you to X-ray then back to the ward. She will then come and remove it the next day. Dr Kirkham then will probably see you before you go on the 18th and say she will get back to you within 3 weeks when Nichola does the PH report.
Cot Wedge Guide
Baby Reflux Library
Chat to the Founders of Little Refluxers!!
Wedges and Positioners
Photos
Top Content
| 1 |
Hester |
| 2 |
Beth |
| 3 |
Jenny Rawling |
| 4 |
Galina Mosers |
| 5 |
Sarah B |
| 6 |
Helen Solomon |
| 7 |
Rebecca Mordecai |
| 8 |
Helen |
| 9 |
Tasha Jones |
| 10 |
Lindsay Uglow |
Badge
© 2012 Created by Admin.
Powered by
