Okay... day two!
So, we left off with Little O being admitted to CHOW for dehydration following a Rotavirus diagnosis at a different hospital. Well, we finally got settled in our room at about 8pm, which is usually Little O's bedtime, but, as anyone who's ever been admitted to hospital knows, getting through the barrage of tests, questions, medical history and other assorted interruptions, means that it's another several hours before you're left in peace. Finally at around midnight we were left alone for a while, and I managed to get the pull-out couch set up so I could also sleep. However, during the night we were constantly being woken up by nurses and other medical professionals who needed more blood drawn, or vitals taken, or even just medical students 'taking a look' at 4am. It was absolutely absurd, and by 5am I'd given up and got up for the day. I'd had about three hours of sleep, and Little O had had about five.
Because he was so tired and ill, my son was also GRUMPY! I therefore made an executive decision to instruct all medical staff and other busy-bodies to leave us the hell alone after 12pm so we could both nap. Little O was getting sleepy around 12.30pm, but he was finding it hard to drop off and just wanted to roll around and tug on the number of tubes and devices attached to his body. At 1pm he finally succeeded in ripping off the splint that was keeping his arm straight so the IV would stay put, and before I could run over to his bed and stop him, he'd already begun playing with the IV itself. Convinced he'd done some more damage than I could see (with my medically-untrained eyes), I pushed the call button for the nurse and held Little O's hands still until we could fix the bandages, splint and IV. After about 20 mins a different nurse came in from our usual one, took a cursory look at the IV, and announced that she saw nothing wrong with it. I protested, and explained that Little O had definitely been playing with it, but she flushed it a few times and stuck to her guns. Then she wrapped the splint back on his arm so tightly I couldn't see any skin from armpit to fingertip.
Feeling unsure but relieved, I tried to get Little O to sleep again, but he started cycling through patterns of sleeping for about 15 mins, then waking up screaming and being restless. Then he'd tire himself out from screaming so hard he'd fall asleep, and 15 mins later the pattern would start all over again. I was really upset. I was so, so tired, and getting frustrated and worried. I called a nurse in (our usual one, this time) to look at him and she said she'd get a doctor, who never came. Then twice I called for a doctor myself, even going out into the hallway to physically bring one back with me. Doctors are not gods, and no matter how much respect I have for their knowledge, profession, or time, I felt as though I needed to start making a fuss so someone would help me with my son.
At about 2pm I called my husband away from his work and he arrived just after 3pm. The first thing he said when he entered the room was: "Little O is in pain". At around 4.30pm we managed to get some more doctors and med students in to take another look, and both my husband and I told them explicitly that we felt Little O's IV was bothering him, and that he was in pain. Finally one of them agreed to give him Tylenol (paracetamol) and a nurse was sent off to complete the order. At 5pm she came back in to administer the meds, and while she was in the room she checked his IV, for the first time since 1pm. Immediately she said, "This has to come out" and pulled off the gauze, tape and splint to reveal a very swollen little arm. She ripped out the IV and ran out of the room to get some help.
I approached the bed to see what the problem was, and to my horror Little O's arm was so swollen that he could not physically move his fingers. His arm was about three times the size it normally is, and he was SCREAMING in agony. His whole arm, from fingertip to shoulderblade, was absolutely massive. It looked like someone had inflated it with a bicycle pump. When the nurse had taken off the adhesive, the skin underneath had been stretched so thin that the tape had taken several layers off with it and left a gaping, weeping wound in the crook of his arm. There were also blisters and burns, and the whole thing was very painful to touch. The IV must have infiltrated about four hours prior, when he'd been playing with it, and the fluid meant to rehydrate him had instead been slowly pooling under the skin, swelling the arm and causing a lot of pain.
Well, I just lost it. I scooped Little O up and started sobbing and sobbing. I disconnected his feeding pump and took him over to the couch for cuddles and kisses, while both us got drenched in tears. My husband began the practical stuff, by getting us pillows and blankets, and applying the warm compresses the nurse had brought in to soothe the pain and start to relieve the swelling. I was able to calm down enough to tell my husband I wanted to take Little O home, because I felt he was being harmed more than healed under CHOW's care, and he immediately agreed with me. We told the nurse our intentions and she got a doctor in to try and talk us out of it. We didn't listen, and prepared to go home.
Before we left, Little O's regular GI doctor stopped by to see us, and recommended getting some stool samples to test on while we were heading home. As it was non-invasive (Little O kindly prepared a "sample" during the discussion), we said it was okay and then left at about 7.30pm.
More on the results of those tests tomorrow... But just one last thought for today: I called this post "Baby Steps" for a reason. One, because Little O is finally learning to walk, and two, because learning how to be an advocate for your child can take you to places you never thought you'd go. Having a nurse ignore your pleas for four hours, and for medical professionals to cause harm by thinking they know your child's patterns of behaviour better than you do, well, it really made me take a few baby steps in a new direction. I have been forced to face up to the fact that I may be seen (or unseen) to be invisible, and for my instincts to be ignored. This has never happened to me before, because most doctors my son sees defer to me on how to take care of him in the best way. However, I am certain, more than ever, that I am the best advocate for my son, and I am certain that I will not take no for an answer next time. I will do better and will be stronger, so that there is never, ever, a "next time" anyway.
Baby steps, baby steps.
Tina.
Showing posts with label Crying. Show all posts
Showing posts with label Crying. Show all posts
Wednesday, March 2, 2011
Monday, August 23, 2010
My Pookie Bear II
(First section is here)
So, Little O was born on Sunday, 17th May 2010. After we got settled in that night and I'd been escorted to my post-partum room (no wheelchair for ME! I am a big brave warrior and wobbled my way there on my own two feet), I allowed my brother-in-law and his girlfriend to come in to my room and discuss in some detail how the birth had gone and what we were expecting to happen next. After they left I learnt how to express milk for my new baby (WHAT a palaver) and spent the night visiting him in his special care nursery, using the breast pump, and trying to get some sleep - which wasn't easy, given I was incredibly hyper, overtired, and sleeping on the hardest bed known to mankind.
Anyway, the next day I got up and toddled down to the nursery again, only to find there was a middle-aged woman with grey hair peering at my son over spectacles. She introduced herself as Dr. B, a geneticist, and talked my husband and I through her 'findings'. Seeing as I'd never even heard of a geneticist, much less asked for one to analyse my beautiful baby, I was a little surprised and offended by her assumptions that Little O had a genetic condition. She discussed the fact he kept his fists closed, had an ear tag, inguinal hernias, a grade-II intraventricular haemorrhage, funny little feet, very small eye openings (and didn't open his eyes until he was a week old, although we didn't know that yet), a small mouth, cleft palate, wasn't coping very well with feedings on his own, and the fact he was five weeks premature. Slowly my husband and I took all this in, but the more she talked and the more I thought about my own family's history, the more I came to understand that she might be right. We agreed to have our own blood tested to compare to Little O's once I was discharged, and returned to a flurry of excited visitors and concerned phone calls from far-flung family members. I also got to hold him that evening for the first time since the birth.
The next day I went down to the special care nursery to drop off that morning's expressed milk, and found a number of doctors and nurses surrounding Little O's incubator. Someone pointed out that I was the mother, and someone else (a doctor, I think, although I can't remember who) told me to sit down. They told me something about Little O having seizures, and all I can remember is looking at this tiny creature I was no longer allowed to touch (that nurse bitch Debbie - I'll never, ever forgive her for denying me this basic human right when I was so distressed) and praying to God that I wouldn't lose him. I went back to my room when they ordered some tests for Little O and I called my husband, bawling down the phone. He legged it up there, and we spent the rest of the day talking to specialists, nurses, and the hospital chaplain about our son's condition. I will forever be indebted to the kindness of that chaplain. Her name was Beth and she was the most wonderful creature to the two distraught parents in her care; patient, kind, not pushy with her faith, and she spent time every morning for the next week visiting Little O and praying at his bedside.
I was discharged on that Tuesday as I was healing very well. I'd only had one really wobbly moment: the day before. I was showing some friends our new baby in the special care nursery, and had been standing up for far too long and trying to do too much. I had to call out for a chair before I fainted, which was rather dramatic at the time, but I lost very little blood overall and felt well enough to walk out when I was released from hospital. After kissing my baby's hand over and over again before we left, I think a nurse took pity on us and arranged for a separate room to be available opposite the nursery that we could use as a 'base' while we waited for developments. We could sleep overnight there if we wanted to (which we did, only once) and it was a private and peaceful place for us to eat, recuperate, and for me to express milk and put my now-hugely-swollen ankles up.
The next week was a complete and utter blur. We went to the geneticist's office to have blood samples taken and were told the results would take a little time; and we spent many, many hours meeting with new doctors and talking to family about Little O's condition. My husband had to go back to work on Thursday, so I spent the rest of the time expressing milk (an arduous process, and one it pains me to remember), demanding to hold my baby, putting my ankles up, and watching Nancy Grace on daytime-TV (eugh). By Sunday morning things were looking up, and people were telling me Little O could probably go home by Wednesday or Thursday; however, that evening his seizures got worse. He would spend over an hour just shaking and jumping at a time, and for a tiny premature body that's incredibly wearing. The doctors looked very serious and ordered more tests, and the nurse in charge suggested we stay the night in case things got worse.
You can imagine the effect a statement like that had on us. We COMPLETELY freaked out, thinking we were about to lose this perfect-looking person we'd only known for a week, and we spent the whole night either in tears or waiting for news. At 3am a nurse knocked on our room door and told us Little O's oxygen levels had dropped dramatically, and that they'd had to put him on a nasal canular. By 8am they'd given him so much phenobarbital (an anti-seizure medication) that he was woozy and not very responsive, and by 10am it was decided that he should be transferred to another, more capable, hospital.
They sent for a specialist paediatric ambulance to transfer a week-old-baby to the new unit, and while we waited for it to arrive I just sat there by his tiny bed, rocking him and singing to him and crying my fucking eyes out. I was absolutely terrified. The nurses were incredibly supportive (except Debbie, bitch) and allowed me to spend as much time with him as I needed to, but when the ambulance crew arrived with their horrific-looking portable incubator I just lost it. I cried like you'd never heard a woman cry before, and I refused to let my baby go. He was so tiny, and so beautiful, and giving him away to strangers felt absolutely barbaric. I'm normally very capable and very calm under pressure, but they say you don't know love until you look your first child in the eye, and they're right. My heart just broke. The new hospital, St Joseph's, had sent over a senior nurse to accompany Little O, and she must have seen how distressed I was because she began to mother me herself. She became very calm and comforting, and yet she also took charge enough of the situation to allow me to feel secure in putting Little O into that yellow machine. (Later on, when my husband and I arrived at St Joe's, the same nurse told me she thought I hated her for taking my baby away. She wasn't far off the truth...)
I hate the fact that my child's first experience of being in the outside world was being driven to another hospital in an ambulance. I hate it, but there wasn't a lot that could be done. He needed more intensive care, and the only way to achieve that was to trust strangers to drive carefully while they moved him. I still shudder and give myself nightmares thinking about if there'd been an accident on the way; I would never, ever have forgiven myself.
Regardless of the how, why, or when, Little O's new home was at the St Joseph's Hopital NICU. He transferred there on Monday, 24th May 2010, and would stay there for the next two and a half weeks.
More to come...
Tina.
So, Little O was born on Sunday, 17th May 2010. After we got settled in that night and I'd been escorted to my post-partum room (no wheelchair for ME! I am a big brave warrior and wobbled my way there on my own two feet), I allowed my brother-in-law and his girlfriend to come in to my room and discuss in some detail how the birth had gone and what we were expecting to happen next. After they left I learnt how to express milk for my new baby (WHAT a palaver) and spent the night visiting him in his special care nursery, using the breast pump, and trying to get some sleep - which wasn't easy, given I was incredibly hyper, overtired, and sleeping on the hardest bed known to mankind.
Anyway, the next day I got up and toddled down to the nursery again, only to find there was a middle-aged woman with grey hair peering at my son over spectacles. She introduced herself as Dr. B, a geneticist, and talked my husband and I through her 'findings'. Seeing as I'd never even heard of a geneticist, much less asked for one to analyse my beautiful baby, I was a little surprised and offended by her assumptions that Little O had a genetic condition. She discussed the fact he kept his fists closed, had an ear tag, inguinal hernias, a grade-II intraventricular haemorrhage, funny little feet, very small eye openings (and didn't open his eyes until he was a week old, although we didn't know that yet), a small mouth, cleft palate, wasn't coping very well with feedings on his own, and the fact he was five weeks premature. Slowly my husband and I took all this in, but the more she talked and the more I thought about my own family's history, the more I came to understand that she might be right. We agreed to have our own blood tested to compare to Little O's once I was discharged, and returned to a flurry of excited visitors and concerned phone calls from far-flung family members. I also got to hold him that evening for the first time since the birth.
The next day I went down to the special care nursery to drop off that morning's expressed milk, and found a number of doctors and nurses surrounding Little O's incubator. Someone pointed out that I was the mother, and someone else (a doctor, I think, although I can't remember who) told me to sit down. They told me something about Little O having seizures, and all I can remember is looking at this tiny creature I was no longer allowed to touch (that nurse bitch Debbie - I'll never, ever forgive her for denying me this basic human right when I was so distressed) and praying to God that I wouldn't lose him. I went back to my room when they ordered some tests for Little O and I called my husband, bawling down the phone. He legged it up there, and we spent the rest of the day talking to specialists, nurses, and the hospital chaplain about our son's condition. I will forever be indebted to the kindness of that chaplain. Her name was Beth and she was the most wonderful creature to the two distraught parents in her care; patient, kind, not pushy with her faith, and she spent time every morning for the next week visiting Little O and praying at his bedside.
I was discharged on that Tuesday as I was healing very well. I'd only had one really wobbly moment: the day before. I was showing some friends our new baby in the special care nursery, and had been standing up for far too long and trying to do too much. I had to call out for a chair before I fainted, which was rather dramatic at the time, but I lost very little blood overall and felt well enough to walk out when I was released from hospital. After kissing my baby's hand over and over again before we left, I think a nurse took pity on us and arranged for a separate room to be available opposite the nursery that we could use as a 'base' while we waited for developments. We could sleep overnight there if we wanted to (which we did, only once) and it was a private and peaceful place for us to eat, recuperate, and for me to express milk and put my now-hugely-swollen ankles up.
The next week was a complete and utter blur. We went to the geneticist's office to have blood samples taken and were told the results would take a little time; and we spent many, many hours meeting with new doctors and talking to family about Little O's condition. My husband had to go back to work on Thursday, so I spent the rest of the time expressing milk (an arduous process, and one it pains me to remember), demanding to hold my baby, putting my ankles up, and watching Nancy Grace on daytime-TV (eugh). By Sunday morning things were looking up, and people were telling me Little O could probably go home by Wednesday or Thursday; however, that evening his seizures got worse. He would spend over an hour just shaking and jumping at a time, and for a tiny premature body that's incredibly wearing. The doctors looked very serious and ordered more tests, and the nurse in charge suggested we stay the night in case things got worse.
You can imagine the effect a statement like that had on us. We COMPLETELY freaked out, thinking we were about to lose this perfect-looking person we'd only known for a week, and we spent the whole night either in tears or waiting for news. At 3am a nurse knocked on our room door and told us Little O's oxygen levels had dropped dramatically, and that they'd had to put him on a nasal canular. By 8am they'd given him so much phenobarbital (an anti-seizure medication) that he was woozy and not very responsive, and by 10am it was decided that he should be transferred to another, more capable, hospital.
They sent for a specialist paediatric ambulance to transfer a week-old-baby to the new unit, and while we waited for it to arrive I just sat there by his tiny bed, rocking him and singing to him and crying my fucking eyes out. I was absolutely terrified. The nurses were incredibly supportive (except Debbie, bitch) and allowed me to spend as much time with him as I needed to, but when the ambulance crew arrived with their horrific-looking portable incubator I just lost it. I cried like you'd never heard a woman cry before, and I refused to let my baby go. He was so tiny, and so beautiful, and giving him away to strangers felt absolutely barbaric. I'm normally very capable and very calm under pressure, but they say you don't know love until you look your first child in the eye, and they're right. My heart just broke. The new hospital, St Joseph's, had sent over a senior nurse to accompany Little O, and she must have seen how distressed I was because she began to mother me herself. She became very calm and comforting, and yet she also took charge enough of the situation to allow me to feel secure in putting Little O into that yellow machine. (Later on, when my husband and I arrived at St Joe's, the same nurse told me she thought I hated her for taking my baby away. She wasn't far off the truth...)
I hate the fact that my child's first experience of being in the outside world was being driven to another hospital in an ambulance. I hate it, but there wasn't a lot that could be done. He needed more intensive care, and the only way to achieve that was to trust strangers to drive carefully while they moved him. I still shudder and give myself nightmares thinking about if there'd been an accident on the way; I would never, ever have forgiven myself.
Regardless of the how, why, or when, Little O's new home was at the St Joseph's Hopital NICU. He transferred there on Monday, 24th May 2010, and would stay there for the next two and a half weeks.
More to come...
Tina.
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