This really has turned into a saga I apologise but I guess putting it down on here I hope that maybe I can help others even if just one other mother going through this stress but also helping people understand a bit more !
So back to it !
We arrived at the Childrens Hospital around 10am & were finally seen around 11am. We went through everything with the lovely doctor but as always we got someone who just sat there perplexed by what we were saying. She got the lucky chance to witness one of his poo's as well as seeing him feed which helped her see that he did need to see the GI. He was also weighed to find that he no longer weighed 9kgs like he did in Jan but 8.7kgs. We were asked to wait back in the waiting room until she worked out with her team leader what our plan of action would be but hopefully she could get an earlier appt for us with the GI.
Approx 5mins later she was back out asking whether we made the appt for Dr Jackson through his private rooms which we had. I knew then she assumed that was through the Outpatients Clinic which had a longer waiting list but no that was his private rooms sadly. She then asked whether our Paed ( no longer our Paed btw ! ) had another number because being Good Friday he wasn't going to be in his rooms & whether he really wanted us to present here at this hospital. We didn't have one of course, thank God & I had to tell a white lie about presenting at this hospital .... I was desperate & by this stage I just didn't care !!!
The Paed had given me a letter on the Wed after me breaking down yet again ( only 2 - 3hrs sleep a nite does that ! ) it stated that G was to be admitted for observation. Now I know he meant our local hospital but that wasn't written on the letter nor did he state that to me .... Simple really.
So off she went again to return to say they had just spoken with Dr Jackson who wanted us admitted immediately. My heart jumped for joy but came crashing down in the next breath because the reality of it hit. I was then advised he would be put straight onto an Nasal Gastric tube with continuous feeds. My heart sank & I felt sick. We were asked to wait till they were ready to do the procedure.
I was shaking when they took us through & when they laid him down to start I could hardly breathe. Then they started & he screamed so loud & in so much pain I wanted them to stop but just started sobbing myself. He wouldn't swallow for them so it was taking longer than expected & he was freaking out. Heck so was I. They ended up having to calm me down afterwards.
He cried for 2hrs non-stop after. I felt like the worst possible mother. What made matters worse was that we had to go back out to the waiting room to wait on his bed. So I paced that room with so many watching us both crying our hearts out. I wanted to rip that darn thing out & run for my life. I wanted to protect him in any way I could. I felt like I was inflicting so much on him & that he would hate me forever. DP tried to take him off me to calm him down so many times but there was no way in hell anyone was taking my baby away from me.
With us both being upset they took us through to another area which had a cot we could have used for him to sleep but he was still too distraught to be away from me so he finally dozed on & off in my arms.
15mins later we were taken to the ward & his bed. The nurses were amazing & just lovely ! They showed us around as we had a parents room, kitchen, toilets & showers as well as a kitchen area for the kids food etc & a play room. G was then put onto the continuous feed with the pump at 45mls an hour. We were started on Neocate LCP as it was though he was reacting to the Elecare & he was ! By the evening he was happier. I got a little sleep, more than I'd had in weeks. I was also shown how to look after the milk pump & how to refill etc. This freaked me out a little I have to say but it became like second nature in the end !
I was really starting to doubt myself by the morning because while G was still unhappy etc he hadn't vomitted since having the tube & hadn't even done a poo for them to see what I was talking about !!! I kept thinking they are going to tell me I've wasted their time then send me packing !!!!
Then the gorgeous wonderful Dr Jackson walked in ( can you tell I love this man ! ) I was in shock as he wasn't oncall that weekend & being a holiday weekend I was told we wouldn't see him till Tuesday but he came in specifically to see us ... Bless
He asked me to be patient because he knew I wanted to run for my life & let him show me that this will work & that no I wasn't imagining it & that he wasn't a happy chappy etc. Basically he had a large blockage in his bowel which was then leading to diarrhea because it would overflow around it etc. He was so sore from the GORD ( Gastro-Oesphageal Reflux Disease ) which is why he hated the tube going down but with meds we would get it under control & stop the acid & pain allowing things to heal. He heard his congestion also which told him that yes he had intolerances & possibly allergies but the main sign was his poo ! Which I have for all that time said was wrong wrong wrong !!!! It was showing that he was reacting etc but still no-one did anything !!!! But he advised we needed the next few days to truly see what was going on.
I didn't say a word he recited off all his symptoms & knew exactly how I felt without me saying a thing. I burst into tears & he told me to never give up & to always trust my instincts because I am always right ... Again can you see why I love this man !!!!
He then said he wouldn't see me again till Tues because he wasn't even meant to be there but would go through it all then & was hoping we would have good result by then. He was to start back on Zantac & Losec ( liquid this time ! ) along with suppositories & Movicol which would help clear his bowel. All being administered twice a day.
G was perking up & all was going well. He would still gag from time to time but still no vomitting but he had started to move his bowels again & his poo was still vile. We then were able to start sending stool samples off & told they would take blood come Tues for testing also. Early that nite his temp lowered to 34 which was a stress because it showed he was dehydrating so an IV was administered but by 7am he was back to 36 which had us all happy !
By Sunday he was a different baby ! He was happy & lively full of colour, playing with us & smiling at all the nurses .... Who of were all there to visit him of course ! I was so freaking happy & totally over the moon ! He was still in some pain & his tummy was still funny but I thought heck we have come so far that's fine by me ! I thought we would be out once Dr Jackson saw us on Tues !
Tues came & we saw Dr Jackson in the afternoon who was happy the blockage was finally moving but he still saw that his gut wasn't reacting like it should. Not much else was gone over as he wanted to make sure Mr Ooo & I were both together so we understood more. We were to trial an oral feed in the evening then again in the morning. That nite he managed a temp of 38 only for a few hours though cheeky bugger !!!! Think he liked keeping them on their feet !
On Wed he was soooo unhappy about feeding again it was quite distressing at times so I refused to push it onto him as I didn't want to cause a bigger aversion. When he did take some he kept it down which had me jumping for joy, so the IV was removed as we decided things were going so well ! We then saw Dr Jackson again that afternoon where he explained more of what was happening & what would happen from here on in. His poo was showing his bowels were still inflamed & reacting ( Allergic Colitis ) & True Lactose Intolerance this explained why he was always sweating & hot along with vomitting like a trooper ! He also had the start of Aspiration Pneumonia. He explained that had he been left any longer things would have become very very serious for him. He also has slow motility & that his colon is extra long which is why his bowel doesn't clear normally this along with his intolerances were causing major havoc. His gut also wasn't emptying like it should & he was aspirating into his lungs so he was started on Erythromycin. This is commonly used as an antibiotic & most will know it as this but it was originally made for this job in allowing the gut to drain. So I had a little freak about the antibiotic issue but being that we are using like 1/8 of what is normally needed to activate it as an antibiotic its all good. His liver function was a little low they think because of all the time that was spent on so many various 'normal' formulas & breastfeeding his system just became totally overloaded. Normally babies quite happily handle breastmilk as its the ovbious food source but for Master G this isn't the case his system simply can't handle it !
We also talked about it being a good chance that Boof has the same issue obviously not as extreme but similar. He asked to see him on Thurs but sadly it never happened cause Boof was at his Gran's but when we visit later he will see him then ! We are just to cut out a lot in his diet to at least give him a break for now.
G also should never have been given the oral vax for Rotavirus as it's something that can be a big cause of problems with kids who have GORD & other bowel &/or gut problems !
Thurs saw him taking his oral feeds much better but only 60mls or so & still made him unhappy. The continuous feeds were taken down to 20mls an hour but when we saw Dr Jackson again he was still concerned about how he was coping so he was given a break overnite with just being on continuous feeds at 45mls an hour again. He also wanted solids started but was happy for them to wait till Fri when seeing the Dietician. We were to start rice cereal again even with what happened as he believed that it was the GORD & bowel issues causing this reaction not the FPIES as standard Farex showed the true reaction. G poo'ed while he was there & was very happy because finally he was doing the right stuff LOL !
Its all about poo now my life !
I missed the dietician coming in on Fri !!! Dr Jackson came in that afternoon & advised we would now go hardcore over the weekend so we could leave Monday or Tuesday ... I was over the moon ! It meant leaving the NG tube in while trialling as well as allowing him one last nite to rest before stopping the continuous feeds through the day & giving 130mls every 3hrs. The idea of doing this was to see as to whether he could tolerate what he needed this way orally or whether we would be going home with the NG & pump ! We had to start solids on Sat as this would help the GORD as well as his weight issues. They figured it was best we trial it while there because if anything went drastically wrong help was at hand ! So I actually went out & bought stuff to do so myself.
Dr Jackson advised he was away at a conference till Tues but would be sending his team member who we also saw daily to check on us Mon with another great GI looking after us over the weekend. He would definitely see us in 4wks though for our review.
Sat saw us start solids & they have been a complete nightmare with him being hysterical over them & he didn't use his mouth properly so we had to see a Speech Therapist in the end which took many months to see him take anything. He didn't even like to touch the food & freaked out but the oral feeds were going great guns & he was taking 130mls each feed with no vomitting. He would still gag etc but all was staying down !!!! The meds were working yippppeeeeee !!!!
Later that nite the bugger pulled his NG tube out !!!! I couldnt believe it !!! I had been so watchful over him because he would get irritated & that was the first thing he would grab for & this moment i turned my back he did it ! We decided not to put it back in because it was to be removed Sun evening if all continued as it was going anyways so unless things went wrong from here on he wouldnt need it.
Sun wasn't really eventful but knowing the light was at the end of the tunnel & we were nearly going home had me happy ( 10 days in hospital was enough for me ! ). The other GI came in & laughed saying that G obviously knew it was time for the NG to go & that it was our sign heh !
I finally got to see the Dietician on Mon !!!! She was lovely & very helpful with a huge list of foods that G can eat as well as recipes ! Obviously we had to be watchful of anything else that would cause an issue but taking things slow would stop any issues before they became a real problem. She also asked for him to be re-weighed so we could see how that was running as she could give me details of what we needed to do otherwise.
Dr Jacksons team member came in & was happy with our progress. We spoke about his reluctance still about taking solids & that we would try our best to get him to eat. He was to be kept at the 130mls 6 times a day every 3hrs because this allows his gut to drain properly & also keeps his bowel moving. I also made it known that he still seemed to become cranky after the rice cereal like it made him crampy so was advised to keep trying for a week to see how it goes otherwise to try some other foods that he would take. I was given all the details for his meds etc then advised when all of that was ready we would be going home .... Yipeeeeee !
G was re-weighed before we left .... To find he had gone from 8.7kgs to 8.3kgs in a week & a half & this was even after being on continuous feeds !!!! So the dietician was contacted again so she got some details organised & came back down to us. We had to give him extra formula to up his calorie intake because this was the only way his system would take on enough for him to gain weight. It was a hard slog for awhile but we got him up to 9kgs where he seemed to stall again for a number of months as we trialled him off the extra calories.
We also think the reason for his stalling was the few dairy & soy trials that were done during this period which left him a complete wreck for weeks after. So we stopped the trials & at 12mths we went to Neocate Advance which has the extra calories being for the older child & this saw him hit 10kgs at 15mths & 11kgs at 18mths .... He is now classified as 'average' LOL !
At later dates we spoke about all signs pointing to somethin like FPIES ( Food Protein Induced Enterocolitis Syndrome ) this was later ruled out but he does react in a similar way ( read more HERE & if you have the stomach THIS video shows how cruel it really can be ! ).
We are now just off being 22mths & whilst he again has stopped gaining we are happy with where he is at because 11kgs is excellent !
We have trialled dairy & soy again with horrible results as before so I have put my foot down & refused any more being that if all goes well in the coming months he will leave the Neocate behind & exist on Rice Milk ... Not so bad really when dairy isn't as great in terms of dietary needs as it's made out to be ;) It will be a case of seeing how his system copes without the Neocate as a back up. We also find that Gluten can have a similar effect but I wouldn't say it's anything like Celiacs !
THIS BLOG belongs to the mum of the little boy in the above video & so many of her posts have me nodding along especially THIS & THIS because I relate to them so easily ! I often think that our reflux problems are over only to find when I reduce the medication we go backwards so quickly & then the problem of finding doctors who 'get it' is so terrifying as many just don't !
So whilst a lot seem to think that food allergies & intolerances aren't anything major because they see friends who may get a little rash or the likes this isn't the case with many others !
For some it means they stop breathing etc, for others their system shuts down which means these are life threatening issues ... Not something mild & not something to be taken lightly !
Norma Jean Juniors
4 months ago