About 2 weeks after we were discharged from FMC, Lachlan continued to be very unwell, grumpy, irritable, constantly vomiting (40-60 times a day) and to add fuel to the fire his weight was up and down like a yoyo but still not gaining and he decided that now was the time to resist solids and my once amazing eater because extremely fussy and difficult to feed.
I was sooo exhausted. Sick of being worried and the unknown of what going on with my gorgeous little man, sick of waiting for a call from the WCH referral, sick of being covered in vomit, sick of the house smelling like vomit and sick of the massive piles of washing thanks to all the excessive vomiting and our choice to use Modern Cloth Nappies while we are at home. I wanted answers and I wanted them now. I just couldn’t understand how nobody seemed concerned about this unexplained vomiting that had been going on for almost 2 months by this stage.
I get a letter in the mail advising us of our first outpatients appointment with the WCH paediatric gastroenterology team after receiving the referral from FMC and our first appointment was in a weeks time. So off I go to this appointment arms with a book full or records of Lachlan’s daily weight, his food/formula intake, wet/dirty nappies and again a record of all his daily vomiting/spilling – which at this stage is still about 40 times a day. The registrar we saw completely dismissed the Coeliac Syndrome diagnosis and immediately diagnoses Lachlan with reflux. This is despite the fact that he had not showed any symptoms of reflux until he hit the 9 month mark and we landed in FMC. We were sent home with a script for Losec and to come back to outpatients for a review in a fortnights time.
Losec for us was a terrible awful horrible experience. Also instantly Lachlan had an adverse reaction to it, he became ever more irritable than he already was and everytime he laid down he would just scream and scream so it was obviously causing him some kind of pain. I rang the doctor after 3 days of constant screaming, he asked how his weight and vomiting was going and if there was any improvement. At this stage he had lost 100g since we had been at inpatients and the vomiting showed no signs of improvement. We were told to instantly stop the Losec, as it was obviously giving him a side effect of a residual pain and we were put onto a script of Zantax instead and advised in the next couple of days we were going to get a call for Lachlan to be admitted for observations to determine what was actually going on. After 4 days of liquid Zantax twice daily we were still looking at no sign of improvement to weight or vomiting I got a phone call from the admission team saying that they wanted us to be at the hospital within an hour for admission to the ward for review. Needless to say I was not quiet organised for such a limited warning for admission so I ran around like a headless chook chucking in a bag random things for both Lachlan and I for to cover us for a couple night as inpatients (just in case we were there for a couple days) drove to Jamie’s work to tell him that we were being admitted and then within 1 hour and 20 minutes we were at the admission desk of WCH. Once again we were inpatients, however I was determined to get an answer and move towards a resoultion of the constant vomiting.
Once again I had the same issues dealing with the doctors that I did with FMC for the first couple of days. The medical teams were not listening to me in regards to his mood – once again they were judging on the happy baby that they were seeing and not listening to the fact that this was in fact the grumpy version of his normal mood and they were not listening in regards to his constant vomiting and weight variance, despite my having daily documented evidence of it all.
Initially we were there for 3 days with him under constant observation with no alterations and continuing on the Zantax – and much to my cynical pissed off amusement nothing had changed from all the documentation that I had provided to them, and that third morning Lachlan’s weight had once again plummet and was 420g less than his admission weight. At this stage I started to get some response and action from the staff that perhaps we had better to do some further investigation in regards to what is actually going on. I finally got them to agree with me in that we needed to find the source of the vomiting as the vomiting was causing the weight loss as opposed to their previous opinion that vomiting was a “symptom” of the problem. I was feeling very deflated that we had wasted 3 days to get to this point which is what I was saying from the beginning, I hated the fact that once again I was made to feel like an idiot over reacting mother who had no idea about anything.
From this stage dietary alterations were made to Lachlan’s diet. Firstly all dairy was removed from his diet and he was put on soy milk and soy solids. Once again after several days of this once again, no signs of improvement.
So we had been inpatients for a week by this stage. The next alteration was to remove all dairy and soy protein from his diet – he was to go onto a special protein free formula called Neo-cate, which I was warned tastes revolting to anyone over 6 months old and they aren’t used to it before hand. Well the first bottle of Neo-cate was an epic failure! Lachlan had one sip of Neo-cate and then screamed at me, I tried to get him to have some more and he just smacked the bottle out of my hands and launched it about a metre across the room. Sadly because he would not drink the Neo-cate and because his weight had dropped another 60g (so totalling 480g since admission) we were not given any other option but to administer a Nasal-Gastric Tube (NGT) to try and build up his calorie intake. Lachlan was to have solid food (dairy and soy protein free) and water during the day and then for a 10 hour period over night while he was asleep, he was to have 400ml of high calorie formula pumped through the NGT. It broke my heart into a million pieces seeing my little man with his NGT on his gorgeous little face.
Lachlan’s mood depleted even more with the tube being in his nose and tape constantly on his face and all over his back and to make things worse we were still in a solitary little room which we weren’t allowed to leave as we will still considered a gastro case. At this stage I had to resort to the mind numbing entertainment of TV….Yo Gabba Gabba was constantly on whenever Lachlan was awake as it was the only thing that would pacify him from grizzling, screaming, crying and most importantly trying to rip the tube out of his face.
After the Neo-Cate experience of no dairy-soy protein for another 4 days and once again no sign of improvements in lessening the vomiting and his weight had still not shown any sign of improvement. The decision was made that no dietary alteration was showing any sign of improvement. Therefore all dietary restrictions were removed and he was to go onto a standard high calorie diet and to continue the NGT overnight feeds for additional calories as he slept.
As we were coming up to the mark of being in hospital for 2 weeks, I was so exhausted, frustrated from being here this long and still not even remotely close to a resolution and not to mention my body was feeling about 110 years old after sleeping on a crappy fold out bed every night. The highlight of both Lachlan and my day was when Jamie came in to visit us every night after work.
So we were now up to Week 3 as inpatients. The doctors at this stage decided that more intensive and rigorous testing need to be completed. Lachlan had about 4 tubes of blood sent off for a whole heap of blood, hormone and genetic testing to be done. He has an ultrasound done to check that all the valves in his oesophagus and stomach were working correctly and he was schedule to have a Ph probe inserted for a 24 hour period to review what was happening with the Ph level in his stomach. The Ph probe was inserted in the same side as the NGT, so he had one very busy nostril and he wore a little backpack while awake to hold the little computer that was recording the information.
Once the probe was in, Lachlan was under constant 24 hour observation from a nurse, everytime he coughed, sneezed, ate, drank, sit up, laid down etc, the exact time that was on the recording computer was to be recorded. The probe was removed on a Friday afternoon and we were to stay in over the weekend to continue monitoring his weight, diet, and output (both ends) and by Monday the ph probe study results should come back. Over the weekend Lachlan was delighted to have his big cousin Max come and visit him.
Monday came around and the results of the Ph probe study came in and if provided a definitive diagnosis of GERD reflux, he had a recorded 65 episodes of reflux over the 24 hour period, they advised that the cut off for the severe diagnosis was 70 episode. So he has moderate to severe GERD. Now that the diagnosis came in we were now working towards an ongoing management plan, specifically in regards to the weight loss as Lachlan’s weight was still up and down like a yo-yo. So over the next few days I had countless sessions with the Gastro Dietary team working out food plans to monitor his calorie intake. I was given lessons from the Home Care Nursing Equipment Team on how to set up, operate, pack down and clean the NGT pump and other equipment, I was given lessons on how to change the tape on his face to keep it fresh. We had learnt the hard way while in hospital that if he had the tinest little corner free from tape that he would rip the whole thing out and it had to be inserted.
After just under 4 very long weeks as inpatients, Lachlan and I were on our way home once again to be back home with Jamie where we all belong! We had a formal diagnosis of GERD, a management plan for his weight and in regards to the constant vomited – we just had to wait until he outgrew it. We did not go home with any medication for relieve the GERD symptoms as the Losec did not agree with him and the Zantax and Mylanta did not demonstrate any signs of improving his symptoms. We had an outpatients appointment scheduled the following week to review the progress.
Once again, homeward bound….damn I was looking forward to a decent nights sleep in a real bed, a long hot shower and a beautiful home cooked meal!