Daniel Back In Hospital
The boys arrived home on Monday morning, exactly 8 weeks after they were born. The first two days were wonderfully chaotic as we tried to figure out how to manage the breastfeeding, bottle feeding, expressing, sterilising and a little bit of sleeping. It was exhausting, but we were happy! Then on the morning of the third day, everything went wrong. Lachlan had woken to feed so I got him up and had taken him into our bedroom so Richard could look after him while I got Daniel up. I went in to Daniel, who was just waking up, and leant over his cot. He got a fright, startled and then arched right back, eyes wide with white stuff coming out of his mouth. He had stopped breathing right in front of my eyes! I called out to Richard, who came racing in, picked him up and started CPR. He was breathing again very quickly, and he never lost consciousness or anything, but he was so lethargic and his breathing so shallow that we decided we needed to go to the hospital. (The alternative was to wait for the midwife who was on her way.) I thought he had had a seizure, while Richard thought he had choked. Either way, we knew that we weren’t going to pack him into the car, so we called an ambulance. They came pretty quickly, and gave Dan oxygen on the way to the hospital. Richard packed up Lachlan and followed in the car.
When we arrived at the hospital, we were seen quickly by the paediatrician on call, and our paediatrician came down from the wards to see us. He thought it was a choking incident, where some food starts to enter the lungs and the body reacts by closing the vocal chords to protect the lungs (Laringus Spasm). We were admitted to the Children’s Hospital so that tests could be run to make sure that nothing else was wrong. This was when we learnt that while the Women’s And Children’s Hospital sounds like one unit, it’s really two hospitals. We had been on the Women’s side before and were now being admitted to the Children’s side. Therefore, we couldn’t have our chosen paediatrician who had been with the boys since they were born. Anyway, while we were waiting for a bed to become available on the Children’s Ward, Daniel started to come around from his lethargy. It was wonderful to see and we started to feel a little better. I finally found the time to feed Lachlan, who had waited so patiently, and we were able to feed Daniel a little as well
After a couple of hours, a bed finally became available and we all traipsed up to the Baby Ward. We almost made it to Daniel’s room when the whole thing happened again. I was sitting on the trolley with Daniel being wheeled into the room, when he suddenly arched back and stopped breathing again. I started saying, “He’s doing it again!, He’s doing it again!”, and one of the nurses actually said, “Do you want me to take him?”! I couldn’t believe it! Of course, I wanted her to take him! I wanted her to save him! They took him into the room and suctioned his mouth and throat, and I just collapsed into a sobbing mess. Richard and the doctor hadn’t seen what happened so were confused at first as to what was going on. The crash team got him breathing again, but decided that he was high enough risk to send him to the Paediatric Intensive Care Unit while they figured out what was happening. So after a stay of only about half an hour, we were moved again to another ward. For the next 24 hours, Daniel was monitored closely, with a nurse constantly by his bed. Thankfully, he had no more incidents and was back in the Baby Ward the next day.
I can’t say that our experience over the next week was at all pleasant. Dan had no more problems, which was a blessing, but everything else pretty much went wrong. The ward was old and ugly, and Dan was in this enormous cot that was cold and rattly. The only test we were able to get, occurred on the Thursday (after he was admitted on the Wednesday) and the nurse stuffed up where he was supposed to go. She thought it was an ECG, when it was an EEG. I questioned her at the time, but she thought she knew better. We were continually told we had to delay feeding the boys until after some event (be it a test, room change or examination) and then we had to wait sometimes for over an hour for that event to occur, while the boys got hungrier and hungrier. In the end we made the decision to tell THEM to wait for us to feed!
We also had a really hard time getting anybody to listen to us about Daniel’s thrush. We had been treating him at home and tried to get them to continue the treatment in the hospital, but every time we went in to see him, the request had disappeared and the new nurse didn’t know anything about it. They all assured us that they would talk to the doctor and get the medication, but it never happened.
After finding out from the EEG that it wasn’t a seizure, the most important test was the gastro test to see if reflux had caused the problem. We were originally told that he’d have the test on the Friday, but that didn’t happen. We were then told the test would happen on the Tuesday after the long weekend. I have to say that it was a really horrible weekend. We hated the ward and felt that we weren’t treated very well and that we were ignored most of the time. We had never been shown around or told how things work, and everything was so cold and grey and open to the public. The boys hadn’t been immunised and we were really worried that they’d pick something up from all the sick kids or their relatives. Plus, I really felt that I was neglecting Daniel, because Lachlan took up so much of my time and other mothers were staying on the ward with their babies while I was going home every night. I did stay one night and it was a complete disaster. I had Lachlan with me, and I was so busy and tired that I couldn’t do anything for Daniel anyway. I decided that I wasn’t going to stay again. By the time Tuesday came around, we were so tired and frustrated and we really wanted to take Daniel home. We were just going to wait for this test. We waited until Tuesday afternoon before chasing up with a nurse to find out about the test, only to find out that it wasn’t going to happen, and it wasn’t likely to happen for another two weeks. We were stunned! We couldn’t believe that we had waited for four days for a test that wasn’t going to happen, and nobody bothered to tell us!
In the end, we volunteered Daniel for a trial so that we could get the test done quicker (in a week rather than two). So we stayed in the hospital until Wednesday so the team who were running the trial could see Daniel and come and talk to us about what was going to happen. Then we were able to pack him up and finally, take him home – with a full blown case of thrush!
One thing they were able to organise (partly) was to get Daniel immunised while he was in hospital. We tried to get Lachlan done at the same time, but of course, that was too difficult and we had to organise that for another time.
The trial that we had volunteered Daniel for required that he have a full-on examination to see the severity of his reflux. Then, if he qualified and his reflux was bad enough, we would take part in a drug trial for the reflux. Our paediatrician, Chad, was wonderful throughout all this, and organised for the overnight study to take place back in the Special Care Nursery. So I took Daniel in a week after we got out of the Children’s Hospital, and he spent 24 hours with tubes and monitors checking his every move both internally and externally. The results of the test were good and bad – good in that we discovered he did have reflux but it wasn’t bad enough to qualify for the trial; and bad in that we were told that Dan was having multiple apnoeas while he was sleeping. This was quite worrying but we were assured that it wasn’t terribly dangerous. It had probably been happening the entire time. The next step was to treat the reflux and then book him in for a sleep study to see what was causing the apnoeas.
A couple of weeks later, we packed up both boys and took them into the hospital so that the doctors could watch Daniel sleep. We weren’t very confident they would see much because the boys weren’t sleeping very much at night. Nevertheless, they wired him up with every monitor under the sun, and we settled him to sleep. The night was a tough one for Richard and I, as we got very little sleep. We had to run back and forth between Daniel and Lachlan’s rooms to feed and settle each of them. The technician was pretty impressed with how much work we had to do! The tandem feeding we did at home was so much quicker!
We got the initial results of the sleep study straight away and the more comprehensive results later on. Basically, Daniel was observed to stop breathing a number of times every hour, and it was reducing his blood oxygen saturation levels. They determined that it was caused by some obstruction in his respiratory system, rather than by a central nervous system problem, which was the best option. As it turned out, it wasn’t quite severe enough to warrant immediate attention, so the doctors decided that we could wait to see if he’d grow out of it. We did another sleep study at home in late September, which showed that he had improved, but was still having small episodes. We still don’t know the exact cause and Dan will require further tests in the New Year (2008).
Meanwhile, both Daniel and Lachlan were prescribed drugs to help with their reflux. First we were given tablets (Losec) which we couldn’t figure out how to administer, before we tried Zantac, which came as a liquid. Both boys responded at first and things settled down for a while, but then after a few weeks we found we were having all sorts of problems settling Lachlan at night. We thought at first he was just being difficult, but then we figured out he was in pain and that the screaming wasn’t without reason. We went back to the doctor and went back onto the Losec, which changed Lachlan within days. It was such a relief! We had been tearing our hair out trying to settle the poor boy and he was screaming in pain! Daniel took a little longer before he outgrew the Zantac and needed to go back onto the Losec. Life was so much easier for quite a while. Then in December, Lachlan decided that he didn’t like his Losec and he figured out how to spit it out and to wrestle with us when we tried to give it to him. At the same time, Daniel decided to start throwing his up, along with all his dinner. We’re now trialling life without Losec, and it seems to be going okay. Fingers crossed.
