A few weeks ago, I noticed that Kye was really straining when attempting to have a bowel movement. I thought he was constipated and tried to massage his stomach and lift his legs to make it easier for him. He was in real agony and this was at about 3 o'clock in the morning. He produced a little "chicken tikka masala"
(I call it that because of it's colour and consistency) but it was a real effort.
A few hours later Michelle and I were outside the paediatrician's office waiting for it to open. We had to return to the same hospital I've been complaining about because it would have taken too long to get to the other one during rush hour traffic. This was the same paediatrician that was there at his birth and he was the one person that showed any compassion during what happened afterwards, so I felt comfortable taking Kye back to him.
Kye's stomach was really distended, and the poor little guy had to suffer the indignity and pain of having an adult finger inserted in him. After that, the whole lot of poo came out, with a little blood from the stretching of that little hole. I hate having to be present during these things, but he has to know that I'm there. If it makes it slightly more bearable for him, then it's worth it. We then had to go for more blood tests and return to the paediatrician later in the week for a follow up.
At the follow up, were learnt that he is allergic to the protein in cow's milk. I must mention at this point, that we had introduced formula to supplement the breast milk a couple of weeks before. He was put on to a special formula that was extensively hydrolysed. This is where the greed of hospitals comes into play again. We went downstairs to their in house pharmacy to purchase the medication we required. The bill came to R432.84. Twenty seven percent of that bill was a "dispensing fee". The only thing that they had to mix was one item. Which means that they charged R45.14 for taking a R125.40 can of formula off the shelf, and R19.50 for taking a R54.17 bottle off the shelf! It is disgusting. The effort it must take to lift a can off the shelf behind you!
Later in the day I got a phone call from the paediatrician, asking us to return the following morning, as he had been thinking about Kye and was concerned about his breathing. (his breathing had been rapid at times at the previous appointment)
He checked him out again and said we have to book him into the hospital's paediatric ward that very morning. I had to stop myself from bursting into tears, it seemed like deja vu. The paediatrician said, given his
history and the fact that they were not really sure as to what caused his initial bout in NICU, that he wanted to conduct some tests on him. We decided to return home first and give him a bath and change of clothes, and then booked in shortly thereafter.
I gathered they were trying to determine if he had Hirshsprungs disease, which is a congenital disease of the large intestine, where the nerves cells are not properly developed, leading to a blockage. Once again Kye went through an array of tests, stool, blood, urine and ultrasound. Fortunately Michelle had a room to herself with him, but without a bed. That, one has to hire separately, and my dad kindly paid for the three nights that it was needed. (thanks dad). The paediatric ward was much better than the maternity ward, the staff being far more friendlier and professional.
One again, information regarding the timing of tests and the reasons therefore was not forthcoming. This seems to be a general thing amongst the medical fraternity. Apart from more painful procedures, the stay was uneventful, except for the same sort of cramping that Kye had experienced before. I was happy that the paediatrician was covering all bases and it looked like we might leave a day early. He said his colleague would be covering him on the Sunday and would be able to give a second opinion. It looked like they were considering a final test, which involved tracing the route of irradiated milk through his system.
There had always been security at the door to the ward, but I noticed over the weekend that there wasn't always someone there. On the Saturday night, after hours, I walked into the hospital, up the stairs, to the ward. No-one questioned my being there. There was no security guard at the entrance to the ward. I pressed the bell, it opened, and I walked through. There was no-one at the reception desk either, so I had basically got through unnoticed. I packed a large bag, more than adequate to fit a baby in, with some dirty clothes that needed washing and walked out the ward again, still unnoticed. I went down the stairs, past the security guard stationed at the trauma entrance (who wasn't there before). She looked at me, and at the bag, with a quizzical look, and then proceeded to carry on with the conversation she was having. I could have walked out with someone's baby and they would have been none the wiser. The next morning I asked the security guard why they think that people don't steal babies over weekends. She said that they are only stationed there when there are more than seven babies in the ward. How reassuring that the most babies anyone could steal at any one time remains at the minimal amount of seven.
It turned out Kye and Michelle would have to spend another night there. He was now on a even more specialised formula and Michelle had to cut out all dairy products from her diet. The paediatrician had said this formula was very expensive but I was yet to find out just how much. On the Monday we found that all the tests had come back positively, but he wanted us to take Kye to see a Professor that same week to get another opinion. In the meantime he had to have various medications as well as suppositories. Never in my life would I have imagined having to put a suppository in anyone, let alone my own child. But if you have to, then you just got to do it. The formula at the hospital's pharmacy came to R710 for a 400 gram tin, including their "dispensing fee". We got the same stuff at another pharmacy, where we could simply take it off the shelf ourselves, for R460. Obscene!
This professor came highly recommended by the nurse we had seen at the clinic for his injections. I asked her about the pharmacy downstairs and she said they themselves
were forced to use it because of their medical plan, and also charged the same dispensing fees.
The professor was a huge, old man, with an entire wall of certificates. He managed to elicit more smiles from my child in five minutes than I had in five weeks. He looked at the x-ray we had taken to him and he said that he did not have the disease I mentioned before. What a relief. He said it was probably a case of severe colic combined with a sphincter that hadn't learnt how to relax, for which he prescribed a cream. (more relief-no more suppositories) If it was still bad in a couple of weeks he said he would need to take a biopsy.
Since then, Kye has gone back to the less expensive formula. (thank goodness, as he was going through a can every 2 to 3 days) He still has the cramps, they occur at about 3 every morning, but are not as severe as they were. Sometimes one of us has to sleep with him on our chest when it gets really bad. He loves his food. The neighbour's child is seven months old, Kye is two months old today, and weighs a kilogram less. He is like a human balloon, or a mini Marlon Brando (the latter years version) I didn't realise babies could be so expensive. Michelle will have to cut short her maternity leave by two months and return to work. I'm going to have to be a stay at home dad for a while, which will be interesting and very fulfilling I'm sure. I don't know how we'll manage, but I know we will somehow, we just have to. My family has helped a lot and I don't know what we'd do without them. So thanks to my old man and his wife, and my mom, and my aunt and sister for all they have done.
Kye is groaning in his sleep as I write this at 4 in the morning, so I'm going to leave this for now and sing him Simon and Garfunkel songs.
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