The year started as we thought it would. We all enjoyed Michael’s time off during the Christmas holidays; we all got some new bikes & had been enjoying our time without running around for the kids activities. Just as we were getting geared up to get back to our normal term-time activities, life threw us a huge lightning bolt.
On Monday the 10th of January 2011, I took the kids to the library before lunch time. They love going to the library when all the kids go back to school, as the shelves are usually full. While there I noticed that Kieran was just sitting down barely looking at a book. I felt the back of his neck and realised he had a fairly high temperature. We decided to leave & go home and have some lunch. I decided that as the temp did not come down with Calpol, to call Michael and have him come home to bring Hazel to Irish dance class.
Kieran maintained a temperature of 38degC to 40deg C (100.4 to 104) for the week. Nothing would bring it below that level. He had no other symptoms, but gradually stopped eating with his usual gusto at the start of the second week. By the following week on the Wednesday when he was covered in a rash I was convinced the GP’s would finally do something. What is the verdict? He has a viral infection that is working its way out of his system & he’ll be right as rain in a few days. Back again on the Friday & still nothing is done. By this time, I’d been up every night with Kieran for two weeks trying to keep an eye on his temp and to make him comfortable.
On Monday the 24th of January we had a few anxious hours early in the morning with Kieran struggling occasionally to get his breathing under control. I really thought he had bronchitis at this stage, so kept an eye on him, got everyone up early to shower & dress and we went to the GP as soon as they opened. Within minutes of being seen by a new GP, an ambulance is called. Kieran’s breathing was quite laboured and his oxygen was about 18 points below normal. I was told that it could be an infection, or “a possible underlying heart or lung condition”. Talk about having the wind knocked out of you.
Kieran and I get in the ambulance & Michael and Hazel follow over in the car. Saying goodbye to Hazel at that time was heart-breaking, she was so scared for Kieran. While in the ambulance Kieran was put on oxygen and given some more paracetamol. Kieran was really quiet and was fairly spaced out the whole time, which scared me to no end. I tried not to panic while talking to the paramedic & trying to distract Kieran. All this was going on while we were being filmed by a camera-woman for BBC’s Real Rescues, who just happened to be with the ambulance crew that day.
When we got to the hospital the 1st thing they did was give Kieran a chest x-ray. Minutes later we’re told he had a severe case of pneumonia, with tons of fluid on his right lung. (I have to be honest, when I heard that I was slightly relieved-as surely that meant his heart & lungs were generally OK & pneumonia was fixable.) The paediatric consultant comes & tells us that Kieran (who is still dazed, but breathing OK on the oxygen) is going to need his lung drained & that they would have to transfer him to another hospital as “we can’t do this procedure here”. I’m a little rattled at the prospect of going to any of the other hospitals as they were all so much further from home, and of course the fear of waiting any longer than we needed to get him some help. As soon as the consultant left, the A & E doctor came back to us to say she overheard what the consultant said, and that I wasn’t too worry because if it did need to be done quickly, someone in the hospital could do it. That helped a bit, but not much.
We are told that Oxford (our 1st choice of the 3 we were given) was going to be able to take him that afternoon, but would have to arrange transport. Great. Michael & I decided that as he & Hazel would have to drive to Oxford, she might as well go to flute & then to her dancing class as the dance class was on the way to the other hospital. They left & the doctors decided that Kieran (and I) would be more comfortable waiting up in paediatrics than in the emergency room while transport was being arranged.
An orderly and a couple of nurses come to bring Kieran up to the ward. I swear, within minutes of being on the ward my world started to collapse. They decided to switch Kieran from a full oxygen mask to a nasal mask. Within seconds his breathing gets worse. The next thing I know we are in the midst of a full blown emergency. The full mask is put back on, but his breathing doesn’t get back. The consultants are running around & talking to another consultant and everyone’s telling me it’ll be OK and I’m just trying to keep calm so I can keep Kieran calm. The other consultant is from the ICU—he’s the one they were waiting to get ready. Then I’m told exactly what’s about to happen.
The first consultant, who told me that the lung drainage couldn’t be done in this hospital, is about to perform this said procedure on my son, and he would be guided over the phone by the specialist in Oxford. My son wasn’t to be given any pain relief; there was no time for it. The ICU consultant was going to be here, fully prepared with all his gear to incubate Kieran if the procedure went wrong. Michael wasn’t there. I was numb with fright, trying to be calm. Kieran was just bewildered, and possibly frightened, though he never said.
One of the nurses decides I must call Michael quickly. I get in touch with him just before he was going to drive to dancing, which was good as he wasn’t too far from the hospital. I told them I was staying for the procedure to hold Kieran’s hand and talk to him. Just before the doctor starts, the nurse asks me if I was the fainting type. I said I didn’t think so, but I was sure we’d find out soon enough. They put a chair right behind me, just in case.
They literally just put Kieran lying on his left side and they plunged the largest needle I’ve ever seen into his side. He was given absolutely nothing for the pain & had to stay frozen in this position. I could have cried with how brave he was, not a single tear, not a single whimper passed his lips. But I could see the terror in eyes. I talked to him the whole time & even encouraged him to watch a bit of what was going on. He saw the fluid as well. They extracted about 310mls of fluid from the lung. The procedure was considered a success.
Kieran was still burning up, was put on a huge dose of intravenous antibiotics and kept in the paediatric ICU. Michael & Hazel got there just a few minutes after the procedure. I was trying not to scream at the world for putting my little guy through all this. I just kept thinking how could my otherwise healthy son, who didn’t have any cold symptoms be in an ICU unit with pneumonia?? Michael and Hazel stay till the evening with us, and then I sat up by Kieran for the night.
The next morning, Kieran was just lying in the bed staring at the ceiling, fighting back the tears that I knew he wanted to shed. It just broke my heart. We have never, ever said ‘don’t cry’ to our kids & I have no idea why he didn’t, but he just seemed resolved not to. I have to say, it was the one moment I thought I was going to lose it.
Michael and Hazel come & I go to the parents’ room with Hazel so I can spend some time with her & get myself freshened up. It wasn’t until about the 3rd day that I actually went and rested for a little bit while Michael was with Kieran.
On the fifth day Kieran is moved to a ward. Things are looking OK. He was still on full oxygen, still burning up but feeling a bit better. I’m going for little walks with Hazel & notice she is getting a cold. She starts to panic that she is getting ill, and I reassure her that this isn’t anything like what Kieran has.
From about the 2nd day in the hospital, I told every doctor and nurse that Kieran was having trouble hearing us. Everyone tells me it’s just the oxygen, it’s running past his ears and it’s loud. I didn’t think it was that loud & continue to tell them all he’s having trouble hearing. As the week progresses we try to get Kieran up and about. He couldn’t walk very far, but we wheeled him to the bathroom to do a wash down & to the playroom. On the following Sunday (30th) they decide he can shower & go for a ride to the cafeteria, with oxygen and our mobiles on. Great!
We take Kieran to the showers & get him cleaned. We are just back at his bed, he’s dressed (shorts & t-shirt as he was still burning up) & I was just going to blow dry his hair when all hell breaks loose. I noticed that his heart-rate was going up to well over 270 beats, and Kieran starts to scream and grabbed his left chest area. I’m convinced I’m watching my son having a heart-attack. I’m ringing the bell & trying to find out what hurts him, when we notice blood coming from his ears. Kieran had had a double ear infection & the pressure from the water in the shower made him burst not one, but both ear drums. How I didn’t strangle every single member of staff is something I’ll never understand. My poor boy!
This meant that he was started on two more courses of antibiotics. Honestly, I can’t imagine how Kieran must have felt during this time. He was poked left and right by doctors and nurses. He had to have a new port every few days as his veins collapsed. He had countless blood tests. Every student doctor was brought to see the child with pneumonia. He had to have a physical therapist pummel him every day. No wonder it was over a week before I saw a glimmer of a smile from him. He was delighted by all the cards and gifts he received.
Meanwhile, the separation from Hazel during the second week is starting to kill me. Poor Hazel’s cold had gotten much worse. It broke my heart not to be with both of them when they were ill. But sadly, we still had to struggle to get Hazel the right help. The same head GP who authorized the ambulance for Kieran sent Michael away with Hazel when he took her, as “she just had a cold”. Poor Michael was beside himself and knew she wasn’t OK, so took her back a few days later and was finally given some antibiotics just to ‘appease’ Michael.
Sadly, Hazel wasn’t the exemplary patient that her brother was. Getting the medicine into her was rather difficult, and most of it was ‘sicked-up’ right away.
Kieran was still in hospital & was slowly coming off the oxygen, which was turned off completely on the 2nd of February. He did well over the next 24hrs that they decided he could have a 48hr home pass on the 4th of February. When Kieran was discharged he still had a temp over 39deg C. I think they knew we could handle him, administer his medicine and would know to get him back ASAP if needed.
Hazel by now was too sick to come pick Kieran up, and I can’t explain how much it hurt to see her again. I don’t think we let go of each other for the first 2 hours I was home. Sadly, our stay at home was only to be 24hrs. Poor Kieran, who was still burning up, threw up the most horrid neon-green colour goo I’d ever seen. We called the neighbours who came to sit with Hazel & we took him back to the hospital. We were put in a private room and after they did all his vitals they left us to it. For the 1st time in a month I slept for a solid two hours. When the nurse came in about 3am, we realized his temp was just below 37degC. Honestly, that suddenly gave me a desire for sleep, and I got a full 4 hrs! Kieran slept like a babe throughout the night and seemed almost normal in the morning. We were discharged after lunch on another 48hr pass. Kieran wasn’t re-admitted.
Hazel by now is getting worse. Her cough and the amount of stuff she was getting up was bad, but I thought that as she was getting things up it was good as it wasn’t settling in her lungs. But by Thursday morning we realize the antibiotics (well, what we could get into her!) just wasn’t working. I get an appointment with the one GP I like & Michael & Hazel go over. Michael is getting a cough at this point too, so the GP decides chest x-rays are needed all round. I’m still telling Hazel not to worry.
About 2:30pm that afternoon the GP calls me. I could have lost it at that point. Hazel also had pneumonia. How could this happen to both of them???
Back we go to the hospital, but I have to leave Kieran with the neighbours and it was still at a point when I wasn’t ready to let him out of my sight. We have a consultation with the doctors, who all decided an inpatient status and a strong dose of IV antibiotics is needed. They said it would be for 48hrs tops. OK, we can handle that. They prep her & she and I go to the ward while Michael gets back to Kieran. Poor Hazel—though Kieran’s ward was actually quite pleasant-Hazel had a very different ward. The ward was filled with children all with chesty infections—they were coughing, getting ill & crying the whole time. She didn’t get an hours sleep. But, once the medicine started, so did her temperatures. They were right up to 39-40deg C. So no sleep & she was actually feeling worse as she had a fever now. Kieran on the other hand was enjoying being the visitor and was happy he could repay Hazel some of her kindness when he was in hospital. Hazel was a marvel that first week. To be honest, I know it was Hazel that got Michael through that first week & she didn’t forget a single thing Kieran and I needed and did so much to boost our spirits. She has a heart of gold.
Meanwhile, her temps are getting worse and they were thinking of keeping her. I convinced the consultant that her temp would probably go down when the IV antibiotics stopped. She agreed and finally gave us a 48hr pass on the 13th of February. Hazel was under strict instructions to take her medicine properly. I think the noisy ward taught her that lesson!
Home we go. We weren’t hospital free completely. I had to administer daily physical therapy for the kids, we had to go see the therapists, many appointments with the ear doctor for Kieran, hearing tests, monthly consultant reviews and follow-up chest x-rays. Hazel was given the all clear in July 2011. Kieran was not given an all clear until November of 2011.
It has been almost two years since this all began. Just writing this & going over it again makes me want to well up. I do know that things could have been so much worse. Hand on heart; I was never so terrified in all my life as that 1st day in the hospital with Kieran. I haven’t had the ‘melt-down’ I thought I would. Neither has he. I can also say I have never stopped worrying about him. That first comment about it being a possible underlying heart or lung condition plays on my mind every day. They have no idea how either children came down with this. Neither child tested positive for any bug or illness, and the hospital tested them for everything they could think of. They had such completely different symptoms, bringing home just how hard it is for a doctor to diagnosis an illness.
We are ever so thankful to all those who helped. We are ever so pissed off with having to convince doctors that something was wrong, with both children. We are hoping that we can go the next 100 years and never face anything on this scale again.
And if you remember all the way back to the beginning of this tale I mentioned that a camera-woman for Real Rescues was in the ambulance with us. The kids had never heard of the show, but wanted to know if Kieran would be on TV. I told them that there was no chance they’d put it on TV as there was no blood or gore. How wrong I was! They called about eight weeks later to ask if they could use the footage as they wanted to do a clip to tell people what to watch for in children with pneumonia. The production coordinator that called got very excited when I mentioned Hazel had been hospitalized for pneumonia as well. That prompted them to decide to actually interview the kids and do more than the clip from the ambulance.
It was arranged that a camerawoman would come to the house and interview the kids here. About 15 minutes after she left, I got another call from the coordinator to say they would love if the kids came to the actual rescue centre where the filming will be done & to be interviewed then. The kids were thrilled!
My kids weren’t nervous. I was a wreck! I don’t do public talking & I realized the world would see a video of me prattling away while I was feeling absolutely terrified in the ambulance. In May we went to the filming and I have to admit we had a great time. I can barely watch the programme as it just hurts to see Kieran that way. But if it helped any other parent, it was worth it.
I would love to say that things have been easy going ever since. Kieran has been hampered by cough and cold symptoms ever since. For over the past month he’s had a very bad chesty cough, though no sign of infection. This month he was put on an inhaler to help with his breathing. The cough comes and goes and is not constant-which is the real worry for me. As I said, that initial comment about his heart & lungs plagues me every second of every day. We have a decent GP that I have access to, and I’m sure she’ll refer him to anyone he needs. I guess I’m just hoping it all just disappears and I can have my healthy boy back for ever.