Croup and throat operation
Ever since Gemma came home from hospital in early December 2007, her breathing was very noisy, especially at night time. We didn’t take this too seriously as we thought it may have been a side effect from all the tubes she had down her throat in hospital, and thought with time it may get better.
By February her heavy breathing had just got worse, so we went to see Gemma’s pediatrician. He thought she may have had a lung infection, so sent us off to have chest x-rays. Thank goodness they came back clear, but this left him confused as to what the problem could be. He then gave us an asthma pump to administer a few pumps a day, and some other medicine (singulair granules) to try and clear the breathing. Unfortunately this didn’t help at all, and due to the fact that her lungs were clear we went back to Lesotho, with the doctor and ourselves hoping her breathing would get better in time.
For two days in early March Gemma’s breathing became extremely heavy, with every breath she took we could see she was making a huge effort. We phoned our doctor that evening and he said we should come through to Bloemfontein the next day. That night however, she was making such a loud noise and when we went to check on her, her lips were starting to go blue. Without even thinking about it, we jumped into the car at 10pm, we were able to relax a bit because the upright position in her car seat, allowed her to breath a lot easier. She was diagnosed with croup, and spent a week in hospital while the croup cleared.
She had been vomiting a lot previous to her hospital admission, so while she was in, the doctor advised us to have a ‘milk scan’ to find out if she had reflux. This scan came back clear, so the reason for her vomiting remained unclear. Once the croup was clear, our pediatrician referred us to an Ear, Nose and Throat specialist who did a scope to observe her breathing airways. He found that she has a ‘congenital subglottic stenosis’ (two growths) just underneath her voice box. He said there was nothing he could do about it, unless he inserted a trachea into her throat. This is a very invasive way to help her breathe, but the ENT specialist suggested that we rather wait for her to grow out of it, implying that as her body grows the larynx will grow bigger, giving her more space to breathe. Our pediatrician was very reluctant to let her out of hospital, but knowing there was not much else he could do, Gemma was let out after a week.
We had to get her a nebulizer, so she could breathe in some medication twice a day for about 10 days. The heavy breathing persisted, but I think we just got used to it, so about three weeks later when the croup signs came back we may have misinterpreted them. Once again her breathing got extremely bad and she was vomiting up every meal that she ate. In the preceding weeks, we had taken her to Johannesburg to meet an endocrinologist and a pediatric dietician who have been wonderfully helpful to us. We phoned our endo and asked if it was worth going to Johburg for a second opinion. He insisted we do so, and organized a bed for her at the Donald Gordon Hospital for the following Monday (the day we phoned was Friday). Once again we drove through to Bloem for the weekend, so as to be close to a hospital in case we needed to admit her sooner. Luckily for us (because Gemma has a stomach tube) we were able to keep her on a constant milk feed for the weekend to try and reduce the vomiting. This did help, she didn’t stop vomiting, but it was far less.
During the weekend we kept nebulizing her to keep her breathing as regular as we could. Gemma was entirely unaware that there was something wrong. In between vomits and not being able to breathe she kept up her good nature by giggling, smiling etc. We had to eventually keep her little cousins ( who she adores) away because every time she got excited it aggravated matters.
On Sunday we drove through to Johannesburg, keeping her on her machine feed – the wonders of modern day medicine. By the time we got there her breathing was the worst we had ever heard it. We phoned our Endo who unfortunately could not get her admitted into Donald Gordon until Monday, so on a Sunday night he especially arranged a bed in the ICU at Sunninghill Hospital. We rushed her off, and the nurses immediately treated her once again for croup. There are 4 stages of croup, ranging from mild to extremely bad. She was in stage 4. The friend who we were staying with has friend who is a doctor and he said to her “Mish, put it this way, stage 5 is up with the Angels.”
Once again God was on our side, and Gemma was once again safe in His Hands. She lay in the pediatric ward for about 5 days, waiting for her airways to open up again. It would have been too risky for the ENT specialist to insert a scope into her larynx at that stage. The night before she was due to go into theatre, the doctors needed to put up two drips in case she pulled one out, and it was essential that she needed at least one in all the time. What was meant to be a quick 15 minute procedure, turned out taking 1 and a half hours because the doctors couldn’t find two good veins. After an hour and a half of screaming and pain, she came out sobbing – with a half moon shape of needle pricks on her neck, and other veins on her body, both sides of her head shaved off, with one drip in her head and another in her foot, she saw us waiting for her and in between sobs started smiling and then laughing. The pain was gone from that second, and will be a heart wrenching moment for us forever, knowing what an extremely special soul we have in our hands.
The next day she went into theatre, and unfortunately the ENT surgeon could not do anything as there was still too much swelling in her larynx – it would have been too dangerous. The diagnosis was the same as the one we got in Bloemfontein. However, he found a lot of scabbing and what he called “sluff” in her larynx, possibly from the Nasogastric tubes she had down her throat in her early months. He said he would be able to do some lazer surgery to remove this – but not touching the two growths. Unfortunately, in order to allow the swelling to go down, Gemma had to be intubated – a pipe inserted into her lungs to help her breathe – for 5 days. The machine was basically breathing for her, and being a baby, she had to be sedated for these days. The reason being that she wouldn’t be able to pull the tube out, if this had to have happened there would have been dire consequences.
The 5 days that Gemma was meant to be intubated turned into 10 days. This was because during this time, Gemma picked up Septicemia – an infection that many patients are prone to pick up in ICU conditions, and can be fatal. Her white blood cell count dropped and she therefore needed a blood transfusion. Her lungs also kept on filling up with liquid and mucus that kept having to be suctioned. Eventually the infection cleared and she was able to go into theatre again. By this stage the swelling had gone down and the ENT surgeon was able to go ahead with the lazer surgery. The operation was a huge success. The doctors were concerned that because Gemma had been intubated for so long she may have had a problem breathing on her own when she was extubated, but needless to say Gemma pulled through as strong as ever, and was able to breathe completely on her own with no back up. This hospital experience was an extremely traumatic one for us and the entire family, but one that had a very positive outcome. To this day Gemma’s breathing has been perfect, and we hope it stays this way.
At this stage Gemma's HI had become a way of life for us. She was still on 4 insulin suppressing injections a day with regular blood sugar tests and regular feeds. "The only concern we have now is that Gemma refuses blatantly to eat. We still insist on trying to spoon feed at every feed, but most of her feed goes straight into her stomach via her stomach tube. One of the side effects of the medication she is on is that it suppresses her hunger, so we think this is the reason. We do believe though that with time things will sort themselves out."
(This is what I copied and pasted from a diary entry written in April 2008. Things have not yet sorted themselves out, and Gemma is still not eating).
As traumatic as this experience was for us, an amazing thing happened. Two weeks after we were back home I started feeling nauseous, certain smells were making me feel ill..........need I say more. We found out I was pregnant. Initially it was a huge shock, and my first reaction was how would we cope with another baby, and because Gemma's condition is genetic, the baby would have a 25% chance of having HI. Not a day later though, those feelings changed and we became very excited about our new baby. We decided not to do any genetic testing, and hoped for the best.