There was a time when I used to know only a handful of nursery rhymes but now I can bet on at least fifty which I sing on repeat for my daughter to satiate her thirst for music. Maybe she likes music so much because I used to sing her to sleep. The sleep lullaby was the one, most famous ‘ABCDEFG’ ! There is a lot of debate at my end of the world whether a child should be sung to (read spoken to) in English or the native language. Regardless of what the others think, my point of view is it doesn’t really matter, it’s just something in the head. Children are very keen learners, as long as they understand their parents there shouldn’t be a problem. I’m not going to elaborate on this point now, lets leave it for a later post. For now lets just say I sing nursery rhymes to my kids because that’s what they watch on t.v., that’s what they understand and that’s what they like to hear!
Lying unconscious on the hospital bed crying with pain the only soothing sound providing some relief to Yusra was me humming the ABC song. I can’t say whether it was my voice telling her that her mother was there to look after her or she had some sort of a connection with the rhyme but she would stop whining and would go back to sleep. For the next two days after surgery, Yusra didn’t give any sort of response. She would look at us blankly, wouldn’t smile and respond like she used to. Alan was getting anxious by her lack of response. We started playing Quranic verses by her side along with a Hamd ‘Hasbi Rabbi’ by Sami Yusuf. It was Sami Yusuf’s hamd which brought my daughter back to life since it was her other favorite. That sparkle in her eyes came back and we heaved a big sigh of relief!
Two positive changes in her life were :
- The tongue which used to stick out most of the times -which we figured later on was due to the feeling of being full upto the gullet all the time- no longer stuck out.
2. Yusra finally started eating without putting up a fight. This was the change that brought great relief!
The downside of the surgery was me being unable to breast feed my baby. It was like learning to take care of my first born all over again. I was so scared in Yusra’s handling because I didnt want to cause her any pain and that’s the sole reason why Yusra sensing my discomfort, was having trouble latching on to me.
The new normal for me had become the stoma oozing poop 24/7! I tried Desitin ‘original’ (a wonder rash cream for bottoms), Sudocreme (another wonder product for ordinary rashes), I tried Zinc Oxide paste provided by the hospital, I even tried cornflour paste in an effort to somehow stop and protect the big red nasty rash that was
developing around her stoma but nothing seemed to work. To be effective, the ointments need to stick to the skin which was becoming impossible with each passing day. In less than a month post surgery, Yusra’s peristomal skin had damaged beyond repair. We took her to her surgeon who said the skin would become accustomed to this rash. To call it a rash is to insult the blood oozing wound that it had become. Yusra was in pain all the time especially during gauze pad change which was like every 15minutes to half hour depending on the stool output. She would cringe away from me and each gauze pad change would be a big hassle. It was a nightmare!
Then Alan started searching the net like crazy and we came to know about the ostomy bags. There are numerous intestinal diseases due to which a person may undergo temporary ileostomy/ colostomy so the ostomy supplies are not uncommon. The challenge, however, was to find the infant sized ileostomy bags in Pakistan. It took us around four months to dig out a suitable ileostomy supplies provider. Hollister. Fate has a nasty habit of playing games with us though! Hollister Incorporated was wrapping up their business from Pakistan so we were only lucky enough to get the last few pieces. Having no prior knowledge of using the ostomy bags we read the instructions on the web and pasted the pouching system on Yusra’s tummy. It leaked within the next hour! Leakages cause more destruction if not catered to immediately. We once again took our daughter alongwith the new found ostomy supplies to AKUH where the PG on duty very nonchalantly cut a big round hole in the middle of the base-plate, a size bigger than Yusra’s stoma, and showed us how to paste it and that it was good to go for the next two or three days. By the time we reached home it had leaked. After her surgery, I’ve never had a beneficial advice regarding stoma care from AKUH. I really wonder how on earth did that hospital earn such a big name and reputation. Had I taken Yusra to any other local hospital I would’ve gotten better advice. All we came to know was that the surgeon’s job is just to do the surgery and handle other surgery related issues and what happens to the peristomal skin doesn’t come under his jurisdiction. We were not told about the ostomy bags because they are pretty expensive and people normally can’t afford them. What a lame excuse! Who asked your opinion about whether a parent can or cannot afford a particular medicine? Anyway, it was the surgeon, yes a Pakistan Air Force Surgeon, who showed us how to cut a stoma sized hole on the base-plate, how to apply the paste and in which quantity around the opening and how to paste it on the tummy. Hats off to you sir!
The journey from that day onwards has been a bumpy one. As long as the Hollister bags were there, we were able to cure Yusra’s skin. The bags were really good! They would stick well and stay put without a leakage for atleast three days. That gave time for Yusra’s skin to heal. Together Alan and I had learned how to apply the pouching system effectively. The moments of bliss came to an end too soon when the Hollister’s ostomy bags came to an end. No alternative was available in Pakistan for infants! This time Alan emailed Convatec, another ostomy supplies company working in Pakistan. He told them about the non-availabilty of ostomy bags for infants in Pakistan and the Convatec team took immediate measures. We are grateful to Convatec from the depths of our hearts. Their supplier in Pakistan is Muller & Phipps. In which ever city we are posted the Convatec ostomy bags are made available for us especially at that city’s M & P depot. Its a big thing for us! But sometimes the supply falls short of demand and those are the toughest situations where we have to look frantically for alternatives and sometimes have to cope with wrong sized bags just to fill in the gaps. There is a host of ostomy care supplies in the West which is making the lives of people easier out there but none is available here in Pakistan. There is no room for experiment! It gets so frustrating knowing there’s stuff in this world which can make my daughter’s life much more better but not having access to it. I did get some supplies from abroad but not everyone is fortunate enough or aware enough to do so. Again I emphasize on the need to raise HD awareness.
Food was another area of continuos concern. Right after surgery I was supposed to give her a relatively thick semi-solid food because the output had to be collected on the gauze pad, the thicker the better! After introduction of the ostomy bags in Yusra’s life I had to constantly manage the consistency of her food, it should be neither too thick and nor too thin. Both extremes are a cause for leakage which means trouble!! The major problem was Yusra’s inability to chew. She was delayed in all milestones so it came as no surprise that she couldn’t chew; her oral muscles are still weak. She used to gulp down anything given in the name of food. Every time I tried to introduce some solid food like a biscuit or french fries etc., she would choke on it. Bringing her from breast-feed to bottle-feed was another fiat.
So much has happened in only a few years that it’s not possible to rant about every small detail. I’ll just try my best to stick to the major issues in my future posts. Food and stoma-care are two separate topics for discussion. In the end I would just like to say that there are countless kids suffering from innumerable diseases most of which are unheard of. As a parent it is our duty to raise awareness regarding our kids specific issues instead of hiding them from the world!!