(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.
Showing posts with label Doctors. Show all posts
Showing posts with label Doctors. Show all posts
Monday, August 23, 2010
Monday, February 15, 2010
Part 2
Right, where was I?
At about 12.00pm I asked to get back into the bath. (Midwife: "That's a good idea, it can really help to speed things along". So why aren't there rows of baths instead of beds on maternity wards then?) I had actually wanted a water birth but, as I say, I don't think anyone bothered to look at my birth plan, and I was too frightened to speak up. Anyway, I got into the bath, dragging my Entonox cylinder with me, and promptly relaxed and calmed down. I continued to doze off between contractions, with the Entonox mouthpiece falling out of my mouth! Before long, though, I thought, "this baby's coming." I gesiculated wildly at the midwife's pull-cord to get my husband to summon her, but he didn't know what I was pointing at and thought I wanted something from my pile of clothes on the windowsill! I finally gasped "midwife!" and he got her.
I was taken back to my bed to be examined, whereupon my waters broke. I was 7cm dilated and preparations were made to take me down to the labour ward. At this point the 'show' appeared (the mucus plug in the cervix which keeps everything sealed up for 9 months). I spotted it on the bed and asked what it was (I wanted to be sure). "Oh, that's the show," said the midwife, and threw a sheet over it. "You weren't supposed to see that." Why the hell not? "It's ok, I made it," I managed to say. The staff commented that I still had a sense of humour - which was true but that wasn't the point. It had been inside me for all that time and I wanted to see it, to be aware of everything that had and was still happening to me. Why did they feel the need to keep it hidden? Is there honestly still a belief that these natural female bodily functions and secretions are shameful and dirty? I was put in a wheelchair and taken to the labour ward - but not before a little wait because there was a hospital tour for expectant mothers taking place and, the state I was in, I don't think they wanted me to frighten them! I'm not sure what I think about this. I mean, I was about to give birth, surely my needs should have been top of the list, but it is good that they wanted to give the expectant mothers a positive impression of what they're about to endure (however misleading that may be).
So then. Onto the second stage, or 'active labour'. I had originally decided not to have an epidural as I didn't fancy the side-effects (loss of bladder control, lasting numbness that would have to wear off, etc) but at this stage I changed my mind and decided I wanted one. However, the staff said that I was doing so well and things were moving on at such a pace that I would probably get on without one. I began pushing with the contractions, and stopped taking the Entonox (no pain relief at all! I am a hardass.). This carried on for nearly two hours, during which time I repeatedly requested an epidural and was repeatedly told (very nicely, though) that it would probably not be worth it. However, before long I was shouting "I don't care if you have to keep your quotas down or whatever, I wanted an epidural and YOU wouldn't give me one!" In retrospect, I'm pleased that I made it through without one, but it's myself I'm pleased with, not the staff. They should have given me what I wanted. I was given fluids in an IV in my left hand, and I remember informng them that I give blood from my right, and that they might have more luck finding a vein there!
What nobody knew at this stage was that the baby's cord was wrapped three times around the neck, which was why the baby wasn't making progress down the birth canal. A (male) obsetrician appeared at this point (to be honest, plenty of people were in and out of that room over those few hours, and I could not tell you how many or who the majority of them were. My mind was elsewhere) and he said that they were going to 'give the baby a hand' getting out, since progress had stalled and the baby's heartbeat had slowed. Whatever my feelings on interventions during birth were prior to this, this was brilliant news. As I was moaning and complaining about the pain, a midwife said, "it's 3.00pm. Your baby will be born by 10 past". The best thing I had heard all day.
The end of the bed came away, my head went back, the stirrups appeared and up went my legs. I was given four injections of local anaesthetic and an episiotomy (cut thorught the perenium) was perfomed. Yes, it's an absolute cariacature of childbirth, and it was quite a bloodbath (and have I mentioned the shit yet? Yes, I shat myself while I was pushing. And couldn't care less). A suction cup (ventouse) was attached to the baby's head, and with a few more pushes and contractions, the head was out. I asked why I couldn't hear the baby. I still don't understand why babies don't cry as soon as their head's born! A couple more contractions and pushes and my husband cried "It's a boy! Oh, it's S------!" and my brand new son was born.
He was a huge baby - 9lb 4oz, I shortly learned - and he had shat himself too, and was grey from the birth goo and the effect of the birth on his circulation. They plonked him on my tummy and the first thing I saw was this enormous, round, grey baby bum with a brown anus! Nice! I didn't even see his face until minutes later, when the cord had been cut and he'd been wrapped in a blanket. Next time, I'm going to insist that all that can wait until I've seen my baby's face and kissed it. Nor did I see the placenta, which I really wanted a look at (see 'the show', above). In all honesty, my prevailing feeling at that point was relief and gladness at the pregnancy, labour and birth being over, rather than joy or excitement at meeting S. That sounds awful, but in my defence, I had had virtually no sleep, there was no food in my system, I had never experienced pain like it, and I was rather out of it from the Entonox. And I doubt I'm the first new mother to have felt like that! giving birth was simultaneously the best and worst experience of my life, although I would not come to see it as the best for little while. Predictably, the first thing I said was, "I'm never doing that again!" The midwives all laughed and said, "they all say that," so I pointed to my husband and said, "well, you're having the next one then!" And I meant it.
Apparently I only swore once and only told my husband to shut up once - less than on a normal day!
I've been writing this as much for me as for anyone else to read it. While women the world over give birth every minute, I have done it but once, and it was the experience of my life. Nothing else comes close. Every woman's birth story is unique and I'm glad I've now got mine on record. Having said that, it's true that nature causes you to forget the pain, so despite this being a pretty accurate account, I know something is missing. We all know that if any mother had an accurate memory of giving birth, she would never put herself through it again! I've got a lot more to tell about the first days and months of S's life, and hope I can continue to write on here a little more often. But now it's teatime.
Anthea
At about 12.00pm I asked to get back into the bath. (Midwife: "That's a good idea, it can really help to speed things along". So why aren't there rows of baths instead of beds on maternity wards then?) I had actually wanted a water birth but, as I say, I don't think anyone bothered to look at my birth plan, and I was too frightened to speak up. Anyway, I got into the bath, dragging my Entonox cylinder with me, and promptly relaxed and calmed down. I continued to doze off between contractions, with the Entonox mouthpiece falling out of my mouth! Before long, though, I thought, "this baby's coming." I gesiculated wildly at the midwife's pull-cord to get my husband to summon her, but he didn't know what I was pointing at and thought I wanted something from my pile of clothes on the windowsill! I finally gasped "midwife!" and he got her.
I was taken back to my bed to be examined, whereupon my waters broke. I was 7cm dilated and preparations were made to take me down to the labour ward. At this point the 'show' appeared (the mucus plug in the cervix which keeps everything sealed up for 9 months). I spotted it on the bed and asked what it was (I wanted to be sure). "Oh, that's the show," said the midwife, and threw a sheet over it. "You weren't supposed to see that." Why the hell not? "It's ok, I made it," I managed to say. The staff commented that I still had a sense of humour - which was true but that wasn't the point. It had been inside me for all that time and I wanted to see it, to be aware of everything that had and was still happening to me. Why did they feel the need to keep it hidden? Is there honestly still a belief that these natural female bodily functions and secretions are shameful and dirty? I was put in a wheelchair and taken to the labour ward - but not before a little wait because there was a hospital tour for expectant mothers taking place and, the state I was in, I don't think they wanted me to frighten them! I'm not sure what I think about this. I mean, I was about to give birth, surely my needs should have been top of the list, but it is good that they wanted to give the expectant mothers a positive impression of what they're about to endure (however misleading that may be).
So then. Onto the second stage, or 'active labour'. I had originally decided not to have an epidural as I didn't fancy the side-effects (loss of bladder control, lasting numbness that would have to wear off, etc) but at this stage I changed my mind and decided I wanted one. However, the staff said that I was doing so well and things were moving on at such a pace that I would probably get on without one. I began pushing with the contractions, and stopped taking the Entonox (no pain relief at all! I am a hardass.). This carried on for nearly two hours, during which time I repeatedly requested an epidural and was repeatedly told (very nicely, though) that it would probably not be worth it. However, before long I was shouting "I don't care if you have to keep your quotas down or whatever, I wanted an epidural and YOU wouldn't give me one!" In retrospect, I'm pleased that I made it through without one, but it's myself I'm pleased with, not the staff. They should have given me what I wanted. I was given fluids in an IV in my left hand, and I remember informng them that I give blood from my right, and that they might have more luck finding a vein there!
What nobody knew at this stage was that the baby's cord was wrapped three times around the neck, which was why the baby wasn't making progress down the birth canal. A (male) obsetrician appeared at this point (to be honest, plenty of people were in and out of that room over those few hours, and I could not tell you how many or who the majority of them were. My mind was elsewhere) and he said that they were going to 'give the baby a hand' getting out, since progress had stalled and the baby's heartbeat had slowed. Whatever my feelings on interventions during birth were prior to this, this was brilliant news. As I was moaning and complaining about the pain, a midwife said, "it's 3.00pm. Your baby will be born by 10 past". The best thing I had heard all day.
The end of the bed came away, my head went back, the stirrups appeared and up went my legs. I was given four injections of local anaesthetic and an episiotomy (cut thorught the perenium) was perfomed. Yes, it's an absolute cariacature of childbirth, and it was quite a bloodbath (and have I mentioned the shit yet? Yes, I shat myself while I was pushing. And couldn't care less). A suction cup (ventouse) was attached to the baby's head, and with a few more pushes and contractions, the head was out. I asked why I couldn't hear the baby. I still don't understand why babies don't cry as soon as their head's born! A couple more contractions and pushes and my husband cried "It's a boy! Oh, it's S------!" and my brand new son was born.
He was a huge baby - 9lb 4oz, I shortly learned - and he had shat himself too, and was grey from the birth goo and the effect of the birth on his circulation. They plonked him on my tummy and the first thing I saw was this enormous, round, grey baby bum with a brown anus! Nice! I didn't even see his face until minutes later, when the cord had been cut and he'd been wrapped in a blanket. Next time, I'm going to insist that all that can wait until I've seen my baby's face and kissed it. Nor did I see the placenta, which I really wanted a look at (see 'the show', above). In all honesty, my prevailing feeling at that point was relief and gladness at the pregnancy, labour and birth being over, rather than joy or excitement at meeting S. That sounds awful, but in my defence, I had had virtually no sleep, there was no food in my system, I had never experienced pain like it, and I was rather out of it from the Entonox. And I doubt I'm the first new mother to have felt like that! giving birth was simultaneously the best and worst experience of my life, although I would not come to see it as the best for little while. Predictably, the first thing I said was, "I'm never doing that again!" The midwives all laughed and said, "they all say that," so I pointed to my husband and said, "well, you're having the next one then!" And I meant it.
Apparently I only swore once and only told my husband to shut up once - less than on a normal day!
I've been writing this as much for me as for anyone else to read it. While women the world over give birth every minute, I have done it but once, and it was the experience of my life. Nothing else comes close. Every woman's birth story is unique and I'm glad I've now got mine on record. Having said that, it's true that nature causes you to forget the pain, so despite this being a pretty accurate account, I know something is missing. We all know that if any mother had an accurate memory of giving birth, she would never put herself through it again! I've got a lot more to tell about the first days and months of S's life, and hope I can continue to write on here a little more often. But now it's teatime.
Anthea
Sunday, February 14, 2010
Part 1 of many
OK, I've finally found 5 minutes to sit down and write something on here for the first time in about 8 months!
The birth of my baby seems like as good a place to start as any.
After two weeks of curries, 'romantic nights', long walks, membrane sweeps (if you have to ask...) and abject boredom, baby was showing no signs of making an appearance. In fact, the head was partly engaged and then went back up again! I had to be induced. I walked to the hospital on the Friday night and had prostoglandins (synthetic hormones) injected up me - nice. Normally, this method of induction takes about 6 hours to work and is not successful first time round for first time mothers, so the plan was that I would have it done at bedtime, sleep, and then they'd have another go in the morning which was much more likely to work.
So. My husband stayed with me while the induction took place, then got me settled and went home to get some sleep himself. Unbeknownst to him, the hormones took effect very quickly and my labour began at about 1.00am. It felt like back pain, but after a while a midwife confirmed that the pains were settling into fairly regular contractions. I was alone on the ward, in the dark, with a skeleton weekend staff whom I barely saw. Not how I'd pictured my labour. No-one asked me about my birth plan, I was too intimidated to ask for help with my TENS machine (so didn't use it in the end) and had no-one to rub my back or coach me through the pains. At 3.00am I decided I wanted to phone my husband and get him to come in so approached the front desk and informed the woman (don't know if she was a midwife, nurse or receptionist) that there would soon be a man arriving and she would need to let him in. "Why?" she asked (!!!???!) "Because I'm in pain and I want my husband to help me through it," I replied (!!!!!!!) "I'm afraid visiting hours are between 8.00am and 8.00pm," she informed me. Fucking hell. So I spent the rest of the night without pain relief (I wanted massage and the TENS machine), labouring alone in the dark, and fairly scared since this was my first time. I do plan to have another baby, and if the same thing happens again, I shall shout and scream and stamp my foot until I am allowed to have my husband with me. I mean, if we'd turned up at midnight with me having gone into labour spontaneously, would they have sent him away and told him to come back at 8.00am? I think not. The more I look back on this, the more outraged I am. I'm thinking of officially complaining. Any thoughts?
Anyway. I did take a bath after this in a huge double tub. I found it highly effective - in fact, although I'm usually happier on dry land and a bit scared of water, I had really enjoyed baths and swimming throughout my pregnancy - in terms of pain relief and calming me down. At 7.00am I rang my husband. He answered the phone and apparently I sounded really down (not surprising, considering the night I'd had!). He took this to mean that I was annoyed that the induction hadn't worked, when it was quite the opposite! "See you in an hour," I said, but 15 minutes later I the pains were getting worse so I rang him and told him to come straight there, to hell with their visiting hours. At 7.30 he arrived and was again informed of the visiting hours. "Is that going to be a problem?" he demanded, and they grudgingly let him in.
From then until about lunchtime is a bit hazy now. I walked around for pain relief and vomited on another bed ("You must really stay near your bed!" I was curtly told - minutes before another midwife recommended I try walking around!). I used Entonox (gas and air) for pain relief, which I loved. My husband massaged my back for what seemed to him like hours on end. I can't really remember much more than this as I was quite high on Entonox and had had virtually no sleep during the night so kept dozing off between contractions.
Right, baby is now demanding milk so I will return shortly with the next instalment!
Anthea
The birth of my baby seems like as good a place to start as any.
After two weeks of curries, 'romantic nights', long walks, membrane sweeps (if you have to ask...) and abject boredom, baby was showing no signs of making an appearance. In fact, the head was partly engaged and then went back up again! I had to be induced. I walked to the hospital on the Friday night and had prostoglandins (synthetic hormones) injected up me - nice. Normally, this method of induction takes about 6 hours to work and is not successful first time round for first time mothers, so the plan was that I would have it done at bedtime, sleep, and then they'd have another go in the morning which was much more likely to work.
So. My husband stayed with me while the induction took place, then got me settled and went home to get some sleep himself. Unbeknownst to him, the hormones took effect very quickly and my labour began at about 1.00am. It felt like back pain, but after a while a midwife confirmed that the pains were settling into fairly regular contractions. I was alone on the ward, in the dark, with a skeleton weekend staff whom I barely saw. Not how I'd pictured my labour. No-one asked me about my birth plan, I was too intimidated to ask for help with my TENS machine (so didn't use it in the end) and had no-one to rub my back or coach me through the pains. At 3.00am I decided I wanted to phone my husband and get him to come in so approached the front desk and informed the woman (don't know if she was a midwife, nurse or receptionist) that there would soon be a man arriving and she would need to let him in. "Why?" she asked (!!!???!) "Because I'm in pain and I want my husband to help me through it," I replied (!!!!!!!) "I'm afraid visiting hours are between 8.00am and 8.00pm," she informed me. Fucking hell. So I spent the rest of the night without pain relief (I wanted massage and the TENS machine), labouring alone in the dark, and fairly scared since this was my first time. I do plan to have another baby, and if the same thing happens again, I shall shout and scream and stamp my foot until I am allowed to have my husband with me. I mean, if we'd turned up at midnight with me having gone into labour spontaneously, would they have sent him away and told him to come back at 8.00am? I think not. The more I look back on this, the more outraged I am. I'm thinking of officially complaining. Any thoughts?
Anyway. I did take a bath after this in a huge double tub. I found it highly effective - in fact, although I'm usually happier on dry land and a bit scared of water, I had really enjoyed baths and swimming throughout my pregnancy - in terms of pain relief and calming me down. At 7.00am I rang my husband. He answered the phone and apparently I sounded really down (not surprising, considering the night I'd had!). He took this to mean that I was annoyed that the induction hadn't worked, when it was quite the opposite! "See you in an hour," I said, but 15 minutes later I the pains were getting worse so I rang him and told him to come straight there, to hell with their visiting hours. At 7.30 he arrived and was again informed of the visiting hours. "Is that going to be a problem?" he demanded, and they grudgingly let him in.
From then until about lunchtime is a bit hazy now. I walked around for pain relief and vomited on another bed ("You must really stay near your bed!" I was curtly told - minutes before another midwife recommended I try walking around!). I used Entonox (gas and air) for pain relief, which I loved. My husband massaged my back for what seemed to him like hours on end. I can't really remember much more than this as I was quite high on Entonox and had had virtually no sleep during the night so kept dozing off between contractions.
Right, baby is now demanding milk so I will return shortly with the next instalment!
Anthea
Friday, December 4, 2009
So tired... so very, very tired...
Well, it seems as though life is out to bite me in my abundantly-sized buttocks, because we've had some more bad news about Owen's eyes and brain.
Ok, so here goes:
Owen's eyesight is actually okay. He's long-sighted but apparently that's common at this age and he'll outgrow it. No, the problem is a little more difficult than that. Firstly, his eyes only open a tiny amount because the muscles in his eyelids are underdeveloped. He's now learnt to compensate for this by tipping his chin up, which is very bad for his neck, back and shoulders, and if we don't sort out his eyelids he may develop a permanent disability because of it. He needs corrective surgery between now and May to insert silicone tubing into the upper eyelids to strengthen them and help open the eye up further.
In addition to this, the doctor carried out a refraction on his pupils and found something very, very scary. The optic nerves in both his eyes are so inflamed that if we ignore the problem it could become an emergency. Owen's skull is fusing prematurely, which means it has essentially stopped growing and expanding. His brain seems to still want to expand though, which is putting an extraordinary amount of pressure on the skull and the backs of his eyes (hence the inflamation of the optic nerves). Now, normally I would just sigh and think, "Oh, yet another hurdle to get over", but today the doctor frightened me by the stress and importance she was putting on his condition. She seemed frightened herself.
Owen will almost definitely need surgery to open up the spaces in the skull he's supposed to still have, but he may also need a shunt put in to the brain cavity itself to drain excess fluid and relieve pressure in between surgeries (he will need several over the course of his life, until his head is adult-szed). If we do nothing and the pressure continues to grow he could either lose his sight, experience brain damage, or in some severe cases, even lose his life.
So it was not a pleasant way to spend my morning and I got very upset about everything. This poor little boy is experiencing headaches as a result of all this, which makes me want to just pull him into my arms and cuddle him very tightly forever. I'm not even sure I'm allowed to give him any pain relievers as they don't routinely recommend giving them if there's no cause. Sigh. What on earth am I supposed to do?
Thankfully we have managed to get his CT scan moved up a week, so if they find anything on Tuesday that's serious enough to need action immediately, we'll be ahead a week. Today I've been making phone calls left, right and centre to push appointments up, get reports faxed to new specialists and generally try to make life easier for Owen sooner. I think it's going to be a bumpy road, folks...
Oh, and I think I'm anaemic again. Booooooooo.
Tina.
Ok, so here goes:
Owen's eyesight is actually okay. He's long-sighted but apparently that's common at this age and he'll outgrow it. No, the problem is a little more difficult than that. Firstly, his eyes only open a tiny amount because the muscles in his eyelids are underdeveloped. He's now learnt to compensate for this by tipping his chin up, which is very bad for his neck, back and shoulders, and if we don't sort out his eyelids he may develop a permanent disability because of it. He needs corrective surgery between now and May to insert silicone tubing into the upper eyelids to strengthen them and help open the eye up further.
In addition to this, the doctor carried out a refraction on his pupils and found something very, very scary. The optic nerves in both his eyes are so inflamed that if we ignore the problem it could become an emergency. Owen's skull is fusing prematurely, which means it has essentially stopped growing and expanding. His brain seems to still want to expand though, which is putting an extraordinary amount of pressure on the skull and the backs of his eyes (hence the inflamation of the optic nerves). Now, normally I would just sigh and think, "Oh, yet another hurdle to get over", but today the doctor frightened me by the stress and importance she was putting on his condition. She seemed frightened herself.
Owen will almost definitely need surgery to open up the spaces in the skull he's supposed to still have, but he may also need a shunt put in to the brain cavity itself to drain excess fluid and relieve pressure in between surgeries (he will need several over the course of his life, until his head is adult-szed). If we do nothing and the pressure continues to grow he could either lose his sight, experience brain damage, or in some severe cases, even lose his life.
So it was not a pleasant way to spend my morning and I got very upset about everything. This poor little boy is experiencing headaches as a result of all this, which makes me want to just pull him into my arms and cuddle him very tightly forever. I'm not even sure I'm allowed to give him any pain relievers as they don't routinely recommend giving them if there's no cause. Sigh. What on earth am I supposed to do?
Thankfully we have managed to get his CT scan moved up a week, so if they find anything on Tuesday that's serious enough to need action immediately, we'll be ahead a week. Today I've been making phone calls left, right and centre to push appointments up, get reports faxed to new specialists and generally try to make life easier for Owen sooner. I think it's going to be a bumpy road, folks...
Oh, and I think I'm anaemic again. Booooooooo.
Tina.
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