Day three! Things are going well.
When we brought Little O home, some of his... ahem... presents... were left behind so the lab could run some tests. In the event we had further problems at home and would need to bring Little O back for more IV fluids, the lab would already be one step ahead and we would have a clearer picture of what we were dealing with. Well, it turned out that my son actually DID have something else wrong with him: C. Difficile. AGAIN. Jeysus. C. Difficile lives in your gut normally, but is a superbug that is resistant to most antibiotics. If, like Little O, you have been on antibiotics for some other reason (he'd had bronchitis in January), then that can kill a lot of the good bacteria in your system as well as the bad. Because C. Difficile is resistant, however, and the good bacteria is being removed, it has the opportunity to grow quite rapidly and essentially take over the entire gut south of the stomach. This means the good bacteria cannot get back in once the antibiotic treatment has finished, and you get stomach cramps, diarrhea, a fever, etc. If left untreated you can potentially get very, very ill, and it can even kill you.
So, we had to go back to Little O's regular doc and get ANOTHER presciption... which has been successful and we have seen no further signs of illness or diarrhea. At that appointment he also checked Little O's arm and told me how disgusted he was at how it happened. I told him I had very strong feelings about it, but that I was going to be polite and keep my language clean. He suggested I complain to CHOW's Patient Care line, and I told him I already had... :) In fact, after I brought Little O home from the hospital and made sure all of us got a good night's sleep, it was the first thing I did on Thursday morning. I spoke to a very nice chap who listened carefully to my concerns, and then started apologising and apologising, over and over again. I told him that I needed to know that the staff who had treated my son were going to be spoken to, and that this would not happen to another child, and he promised me that all the staff concerned would indeed be "interviewed". Because this might take a while I might not hear back for several weeks, but I have already had a letter at home telling me the investigation is ongoing and that I will be contacted when it is resolved.
Result! Malpractice lawsuit not withstanding, that's basically the best outcome I could hope for. I wanted someone to take my concern seriously, and for the staff at CHOW to know that their neglect (for that is what it was, essentially) did have consequences. It's not as though I could get my money back, or coupons off my next visit (although that would be SWEET, given the cost of healthcare in this country), so making everyone aware that they need to do a better job listening to parents and paying attention to the cries of tiny children in pain is all that matters. Job done.
Little O's arm is now almost healed, two weeks after the incident. We kept applying that magic stuff, Vaseline, to the sore to create a barrier without using cotton wool or gauze (the threads could have gotten stuck to the wound and caused an infection), and it seems to have worked. The swelling took about three days to go down completely, but the scabs fell off earlier this week and we now only have some pinkish scars in the crook of his arm to remind us of that awful day. We also haven't seen any more diarrhea or signs of other gut problems... but we have been giving him more water than usual to help things heal faster anyway. The only problem we have now is that his ear has been draining what looks like green snot... and that isn't a great surprise, seeing as he has a minor cold and ear tubes helping his ear canals keep clear of infection. But it's still REALLY DISGUSTING, and I do gag when it's my turn to clean things up. I can't help it! Blood, poo, wee and vomit I'm fine with. Bogies from the nose, eyes and ears are HORRIBLE and they make me retch. Gah! I'm turning green just thinking about it.
I need to lie down.
Tina.
Showing posts with label Illness. Show all posts
Showing posts with label Illness. Show all posts
Thursday, March 3, 2011
Wednesday, March 2, 2011
2. B is for Baby Steps
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.
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.
Tuesday, March 1, 2011
1. A is for Announcement
Well! This marks the 100th post on this blog, and with it comes an announcement: for the entire month of March I will attempt to post every single day, so that I get back into the habit of regular updates.
I'm hoping to use each letter of the English alphabet, with perhaps a few Welsh characters thrown in at the end to take me to 31 days. Welsh, or French, or anything else that takes my fancy on the way... I haven't decided yet.
So let's get started.
Since I was last on here, I have had (and now stopped) a full-time job. Little O was in full-time daycare as a result, and in addition to the never-ending guilt I felt about that, it also meant he was exposed to far more germs and beastly beasties than he ever was at home. He got sick so often, and so severely, that by Friday, February 11th, I'd had enough. As I was taking him in to the local ER, and he was being admitted overnight again, I reassessed my priorities and decided I would not be going back to work on Monday. I went in to clear my desk on Sunday and wrote a formal e-mail (gosh, how modern of me) to my boss explaining my decision. She was absolutely wonderful about it and said I'd get a glowing reference if and when I needed one. However, it was a real turning point, and the culmination of five weeks of illness for my little boy. He had been ill with a cough before Christmas which turned into bad asthma... and that then turned into bronchitis in January... which then went back to being bad asthma again... then he got double ear infections... twice... and then in mid-Feb he came down with similar symptoms he'd had last October (remember that?). Not willing to risk more hospital treatments, I took him in to the ER to be proactive and nip whatever it was in the bud, and he was admitted anyway. Sigh.
They ran all manner of tests on him overnight and the results came back Saturday afternoon saying he had Rotavirus. It's something they vaccinate for here in the USA, although my folks back home have never even heard of it. And yes, Little O WAS vaccinated. But his immune system has a hard time making antibodies and keeping him healthy, so his defences against this rather unpleasant virus weren't exactly solid. Anyway, armed with this knowledge we came home on a different feeding schedule with extra fluids, and did our best to keep him hydrated at home. It worked, until I felt he was looking and acting a bit peaky ("peaky" is not an American expression, apparently. Trying to describe your child's status as "a bit peaky" to an American doctor gives you both an education...), and I took him in to CHOW's ER for some more IV fluids. And, of course, they admitted him again. When will I learn? Sigh.
...and because I need something to post about tomorrow, I will leave it on that tantilising note for now. See you tomorrow!
Tina.
I'm hoping to use each letter of the English alphabet, with perhaps a few Welsh characters thrown in at the end to take me to 31 days. Welsh, or French, or anything else that takes my fancy on the way... I haven't decided yet.
So let's get started.
Since I was last on here, I have had (and now stopped) a full-time job. Little O was in full-time daycare as a result, and in addition to the never-ending guilt I felt about that, it also meant he was exposed to far more germs and beastly beasties than he ever was at home. He got sick so often, and so severely, that by Friday, February 11th, I'd had enough. As I was taking him in to the local ER, and he was being admitted overnight again, I reassessed my priorities and decided I would not be going back to work on Monday. I went in to clear my desk on Sunday and wrote a formal e-mail (gosh, how modern of me) to my boss explaining my decision. She was absolutely wonderful about it and said I'd get a glowing reference if and when I needed one. However, it was a real turning point, and the culmination of five weeks of illness for my little boy. He had been ill with a cough before Christmas which turned into bad asthma... and that then turned into bronchitis in January... which then went back to being bad asthma again... then he got double ear infections... twice... and then in mid-Feb he came down with similar symptoms he'd had last October (remember that?). Not willing to risk more hospital treatments, I took him in to the ER to be proactive and nip whatever it was in the bud, and he was admitted anyway. Sigh.
They ran all manner of tests on him overnight and the results came back Saturday afternoon saying he had Rotavirus. It's something they vaccinate for here in the USA, although my folks back home have never even heard of it. And yes, Little O WAS vaccinated. But his immune system has a hard time making antibodies and keeping him healthy, so his defences against this rather unpleasant virus weren't exactly solid. Anyway, armed with this knowledge we came home on a different feeding schedule with extra fluids, and did our best to keep him hydrated at home. It worked, until I felt he was looking and acting a bit peaky ("peaky" is not an American expression, apparently. Trying to describe your child's status as "a bit peaky" to an American doctor gives you both an education...), and I took him in to CHOW's ER for some more IV fluids. And, of course, they admitted him again. When will I learn? Sigh.
...and because I need something to post about tomorrow, I will leave it on that tantilising note for now. See you tomorrow!
Tina.
Sunday, December 5, 2010
Let's catch up, shall we?
Ha! The last post I wrote on here was called My newly insane life, and how apt that turned out to be. My apologies for not having updated recently, but... well... it's been a bit insane.
When I last wrote, my son was still in the hospital, recieving IV fluids for dehydration and the stomach flu. It was a Thursday, if I recall correctly. Well, my own father flew in from the UK to spend time with us that Saturday, and it was the same day Little O was discharged. He came home to see his Grandad, and we were thrilled his doctor thought he was well enough to come home back on a regular feeding schedule. We were all looking forward to getting some sleep, some food, and spending time with my dad.
That night, Little O took a turn for the worse, and we ended up being rushed to CHOW on Sunday afternoon by ambulance so he could be re-admitted up there. It was scary to be told your child was in a worse state than ever, just 24 hours after being discharged. His stomach flu and dehydration had led to a critical inbalance of electrolytes, and everyone was very concerned. It wasn't until later that I finally had time to sit and think about everything, but it scares me now to consider the possibilities of what could have happened if we hadn't taken him in again. It's possible we could have lost him.
The doctors on-call up at CHOW told us they would not be releasing him until they were 100% sure he had fully recovered, which implied they felt the staff at All Saints hadn't done their jobs properly and had fixed the symptoms, not the cause. Little O had blood drawn every hour until he screamed because his veins were so bruised and sore, and his diapers were weighed constantly to see how much fluid he was putting out. The most frightening score I saw was his weight. Before he was ill, Little O had worked hard to get to 25lb; when he was admitted to All Saints, he had dropped to 22lb, and when they took an initial set of measurements at CHOW only a few days later, he was between 18 and 19lb. For a little boy like that, losing 6lb is a scary, scary amount. Most of it was fluid, which he put on again fairly quickly with the IV rehydration, but it's still a significant part of this whole ordeal.
When he started getting better properly, the doctors told me what they thought was going on. Initially they suspected C. Difficile, which Little O had a few months ago, and we all had to wear protective gowns, masks, and gloves when he touched him. (I didn't, because I'm his mother and I thought it was ridiculous to wear protection after changing dirty diapers for over a week with bare hands.) Then those tests came back negative after 48 hours, which meant they settled on a diagnosis of several components:
1. Borderline compromised immune system
2. Catches stomach flu, like anyone else
3. Body can't fight off the flu easily because of the compromised immune system
4. Parents continue to feed liquid nutrition and fluids as instructed by healthcare staff
5. Body tries to absorb fluids but is also fighting off flu still
6. Fluids cannot be absorbed, so get 'washed out' of gut
7. As fluids pass through, they also wash out all the 'good' bacteria and enzymes, which cannot get a good grip because they body is still fighting the flu
8. No enzymes or bactera = no absorbtion = dehydration
9. Dehydration makes the diarrhea worse
10. Diarrhea makes the dehydration worse, which makes the diarrhea worse, which makes the dehydration worse... etc...
So, once Little O was discharged from All Saints and came home on a normal feeding routine again, his body actually couldn't cope and the dehydration got worse. In order to break the cycle, all food and fluids had to be stopped, and Little O had to be maintained on IV fluids only. It worked after 72 hours and we managed to get his body to accept small amounts of Pedialyte and formula again by Wednesday afternoon. He was discharged late on Thursday, after being in the hospital for five days (eight, if you include All Saints). He now has a different feeding plan altogether, and different liquid nutrition. It seems to be working, although it's a shame the new formula is made by Nestle, because Nestle is evil. I'm choosing my battles though, and have accepted this minor inconvenience because it's literally keeping my son alive. Hopefully it's not forever and he can move onto something less annoying as he continues to recover.
So, I went back to work and things pottered along for a bit until Little O got his cast. Remember that? He's wearing a cast for 3-6 months to help improve his scoliosis, and then a brace for another 3-6 months to keep his spine in place as he grows. The cast is incredibly heavy, and bright green. It's also a bitch to keep clean, as it comes down very low on the back - almost to Little O's tailbone. Because Little O has very loose poops anyway (which are further exacerbated by an overgrowth of bacteria in the small intestine, for which he is now on Flagyl for), the diapers cannot contain everything they need to. We've had to actually change diaper brands from Target (cheap, and we've never had a problem with them) to Pampers (horrifically expensive) because they're smaller, lighter, and use a different system of keeping the contents of diapers in its place. It's all very disgusting and technical, and it's such a colossal pain in the neck to deal with. Changing diapers isn't particularly enjoyable at the best of times, but trying to change one that cannot be secured in the usual manner because there's a giant fucking plaster cast in the way just gets ridiculous. Thankfully most of Little O's blowouts happen in the middle of the day, so the daycare staff have to deal with it more than we do. Small mercies, right?
There's more to say but I'm all typed-out for now. I shall endevour to provide another update shortly on the highs and lows of being back at work while juggling more freelance projects than I've ever had at any one time, and sinking further back into a grey depressive state (mmm... meds...), but for now I shall leave it here. Little O is home, and healthy(-ish), and it's nearly Christmas. I am thankful.
Tina.
When I last wrote, my son was still in the hospital, recieving IV fluids for dehydration and the stomach flu. It was a Thursday, if I recall correctly. Well, my own father flew in from the UK to spend time with us that Saturday, and it was the same day Little O was discharged. He came home to see his Grandad, and we were thrilled his doctor thought he was well enough to come home back on a regular feeding schedule. We were all looking forward to getting some sleep, some food, and spending time with my dad.
That night, Little O took a turn for the worse, and we ended up being rushed to CHOW on Sunday afternoon by ambulance so he could be re-admitted up there. It was scary to be told your child was in a worse state than ever, just 24 hours after being discharged. His stomach flu and dehydration had led to a critical inbalance of electrolytes, and everyone was very concerned. It wasn't until later that I finally had time to sit and think about everything, but it scares me now to consider the possibilities of what could have happened if we hadn't taken him in again. It's possible we could have lost him.
The doctors on-call up at CHOW told us they would not be releasing him until they were 100% sure he had fully recovered, which implied they felt the staff at All Saints hadn't done their jobs properly and had fixed the symptoms, not the cause. Little O had blood drawn every hour until he screamed because his veins were so bruised and sore, and his diapers were weighed constantly to see how much fluid he was putting out. The most frightening score I saw was his weight. Before he was ill, Little O had worked hard to get to 25lb; when he was admitted to All Saints, he had dropped to 22lb, and when they took an initial set of measurements at CHOW only a few days later, he was between 18 and 19lb. For a little boy like that, losing 6lb is a scary, scary amount. Most of it was fluid, which he put on again fairly quickly with the IV rehydration, but it's still a significant part of this whole ordeal.
When he started getting better properly, the doctors told me what they thought was going on. Initially they suspected C. Difficile, which Little O had a few months ago, and we all had to wear protective gowns, masks, and gloves when he touched him. (I didn't, because I'm his mother and I thought it was ridiculous to wear protection after changing dirty diapers for over a week with bare hands.) Then those tests came back negative after 48 hours, which meant they settled on a diagnosis of several components:
1. Borderline compromised immune system
2. Catches stomach flu, like anyone else
3. Body can't fight off the flu easily because of the compromised immune system
4. Parents continue to feed liquid nutrition and fluids as instructed by healthcare staff
5. Body tries to absorb fluids but is also fighting off flu still
6. Fluids cannot be absorbed, so get 'washed out' of gut
7. As fluids pass through, they also wash out all the 'good' bacteria and enzymes, which cannot get a good grip because they body is still fighting the flu
8. No enzymes or bactera = no absorbtion = dehydration
9. Dehydration makes the diarrhea worse
10. Diarrhea makes the dehydration worse, which makes the diarrhea worse, which makes the dehydration worse... etc...
So, once Little O was discharged from All Saints and came home on a normal feeding routine again, his body actually couldn't cope and the dehydration got worse. In order to break the cycle, all food and fluids had to be stopped, and Little O had to be maintained on IV fluids only. It worked after 72 hours and we managed to get his body to accept small amounts of Pedialyte and formula again by Wednesday afternoon. He was discharged late on Thursday, after being in the hospital for five days (eight, if you include All Saints). He now has a different feeding plan altogether, and different liquid nutrition. It seems to be working, although it's a shame the new formula is made by Nestle, because Nestle is evil. I'm choosing my battles though, and have accepted this minor inconvenience because it's literally keeping my son alive. Hopefully it's not forever and he can move onto something less annoying as he continues to recover.
So, I went back to work and things pottered along for a bit until Little O got his cast. Remember that? He's wearing a cast for 3-6 months to help improve his scoliosis, and then a brace for another 3-6 months to keep his spine in place as he grows. The cast is incredibly heavy, and bright green. It's also a bitch to keep clean, as it comes down very low on the back - almost to Little O's tailbone. Because Little O has very loose poops anyway (which are further exacerbated by an overgrowth of bacteria in the small intestine, for which he is now on Flagyl for), the diapers cannot contain everything they need to. We've had to actually change diaper brands from Target (cheap, and we've never had a problem with them) to Pampers (horrifically expensive) because they're smaller, lighter, and use a different system of keeping the contents of diapers in its place. It's all very disgusting and technical, and it's such a colossal pain in the neck to deal with. Changing diapers isn't particularly enjoyable at the best of times, but trying to change one that cannot be secured in the usual manner because there's a giant fucking plaster cast in the way just gets ridiculous. Thankfully most of Little O's blowouts happen in the middle of the day, so the daycare staff have to deal with it more than we do. Small mercies, right?
There's more to say but I'm all typed-out for now. I shall endevour to provide another update shortly on the highs and lows of being back at work while juggling more freelance projects than I've ever had at any one time, and sinking further back into a grey depressive state (mmm... meds...), but for now I shall leave it here. Little O is home, and healthy(-ish), and it's nearly Christmas. I am thankful.
Tina.
Thursday, October 21, 2010
My newly insane life
Wow. My life in the last few weeks has taken such a dramatic turnabout that I'm exhausted just sitting here typing it out. And I'm not complaining, either... it's just... different.
So, I got the job I wanted, and I organised my life around a brand new routine. I organised it. Me. Not my husband; not my friends or family. Me. I, and I alone, set up Little O's new daycare arrangements; I called my mother-in-law to come out for two weeks to help us transition everything; I got the job and bought new work clothes; I researched the best route for avoiding traffic; and I typed up the daily instruction sheets for Little O's carers to follow. It has been a bit of a marathon, to be honest, but I felt as though life was slowly coming together this weekend when my mother-in-law returned home and my husband and I were facing our first week of full-time employment and daycare simultaneously.
Then Little O got sick.
Saturday morning he came down with the most unpleasant stomach flu I've ever seen, and by Sunday he had a raging fever and kindly donated his germs to his parents. My husband and I therefore came down with the same stomach flu, which crippled us entirely and made the entire house stink of illness, poo, vomit, and stale laundry. We both took Monday off, which would normally have been something to celebrate, but instead we just rolled around the living room carpet in a state of helpless misery. It was like being pregnant again, but this time my husband felt just as bad and was no help whatsoever. Incidentally... my husband is NOT good at being ill. Our cat developed a limp over the weekend, to add further insult to injury, so seeing as we had taken the day off, I sucked up my stale, sickly breath, and took him to the vet. I also ran to get some groceries and made soup for lunch... all before 12pm and while having stomach cramps from the flu bug. I returned home to find my husband laying pathetically on the couch, a quivering hand extended in my direction to pass him a sip of water for his parched throat. He hadn't done a single thing in my absence.
That man got no sympathy. He also got no sympathy when I got a phone call telling me Little O's glasses had arrived and we needed to take him down to the opticians the same day to get them fitted correctly. My husband did not want to come, but there was no way in hell I was doing ALL the chores by myself so he grumpily accompanied me.
So, bearing all this unpleasantness in mind, Monday evening came around with a significant improvement in mine and my husband's health, but none in Little O's. In fact, he seemed worse than on Saturday. We gave him a nice warm bath and attempted to put him into bed for an early night, but he seemed so fitful and restless that I decided to take him into Prompt Care. My husband was extremely reluctant, but I had a niggling feeling that all wasn't right, so I got my way and off we set. When we arrived we were seen by a nurse and then a doctor, who both agreed Little O needed some blood tests and possibly IV fluids to get him feeling better. We don't like the ER attached to our local Prompt Care (been there before and they look at Little O like he's a fuckin' unicorn), so we told the nice doctor we'd take him up to CHOW to their children's ER instead.
WELL!! On the way home, my husband said he didn't want to go all the way to Milwaukee (a good 40 min drive away) only to sit in an ER all night and be told nothing was wrong, so he turned the car into our house. I understood. He felt unwell. I felt unwell. Little O needed fluids, which we could give him at home via his feeding pump. After all, one of the advantages to having to feed a child with a pump is that you can keep them hydrated even when they're refusing to eat or drink. I understood. I strongly disagreed, but I understood. I pointed out that I've never once been wrong about taking Little O in to be seen, and I've never created an emergency where there hasn't been one. I've always trusted my instincts, and they've always been right.
But I understood. And I let it slide. I agreed, against my better judgement, against my Mama-instincts, against everything my heart and head were telling me, to keep Little O at home in his own bed and to allow my husband's body time to fully recover. (Never mind the fact I was also still feeling shit - I'd sorta forgotten about that in all the fuss over my baby's health.) We spent the night at home and I took Tuesday off work to give Little O some extra care and love. By this point, I must have changed over 100 diapers in about 72 hours, and they were still coming strong. My baby's bottom was red and raw and he was so fussy and irritable that he was almost inconsolable non-stop.
By Wednesday morning I decided to take him into daycare and go back to work myself. I felt miserable having to choose work over him, but I've just started a new job! What else was I supposed to do? It also isn't helped my the fact my husband leaves for work at 5.30am, two whole hours before I do. If Little O is sick, he won't know about it until he's already been at work for several hours... so I have to make the decision. Anyway, I told the daycare to call my husband with any concerns as he was 'on duty', and drove in.
Around 3pm I got a call saying Little O had a fever. The daycare called my husband but he wasn't answering either his cell phone or his work number, and they really felt Little O needed to be seen by a doctor immediately. I was SO angry! I'd been fretting and worrying all day about my baby; why hadn't my husband?! Why wasn't his cell phone glued to his head? Why wasn't he chewing his nails to the quick every time his work phone rang? I was so mad I had him paged. The last time I did that I was in premature labor, so he knew something was up when I finally got him on the phone. And he left work. Immediately. Because he had no other choice.
Little O was admitted to hospital Wednesday night for severe dehydration and dangerously high sodium levels. I'm typing this out on my laptop in a hospital room while he naps peacefully, comfortable for the first time in nearly a week. It's Thursday afternoon and he's hopefully coming home tomorrow. I feel three things: 1) Anger towards my husband for not taking Little O to CHOW on Monday night; 2) Guilt at my own decision to keep him at home, despite my instincts telling me otherwise; and 3) Happiness that Little O is finally getting the help and comfort that he needs to feel better. But mainly anger and guilt.
I spent the night here; my husband went home. I took today and tomorrow off; my husband plans on working a full shift both days. I am proactive in seeking out support and assistance; my husband won't even speak to his HR team about FMLA law. It's deeply, deeply upsetting that I am still expected to carry the burden of Little O's care while also holding down (or not) a full-time job. Right now I'm seriously considering quitting work. I don't want to, but I also don't want to be 'that' employee who always has to take time off for her child. I don't want to get fired. I don't want that on my record. I don't want to let my new employers down, who have been wonderful and kind and generous, but whose patience will not last forever.
I was so invigorated starting a new job. Today I feel utterly exhausted again, and back in the same place I was a month ago.
Tina.
(I wish this were a happier post, but it isn't. So I'll round it off with a happy ending instead: Happy Anniversary, Anthea and Husband! Four years of marriage, and ten years together. Well done you.)
So, I got the job I wanted, and I organised my life around a brand new routine. I organised it. Me. Not my husband; not my friends or family. Me. I, and I alone, set up Little O's new daycare arrangements; I called my mother-in-law to come out for two weeks to help us transition everything; I got the job and bought new work clothes; I researched the best route for avoiding traffic; and I typed up the daily instruction sheets for Little O's carers to follow. It has been a bit of a marathon, to be honest, but I felt as though life was slowly coming together this weekend when my mother-in-law returned home and my husband and I were facing our first week of full-time employment and daycare simultaneously.
Then Little O got sick.
Saturday morning he came down with the most unpleasant stomach flu I've ever seen, and by Sunday he had a raging fever and kindly donated his germs to his parents. My husband and I therefore came down with the same stomach flu, which crippled us entirely and made the entire house stink of illness, poo, vomit, and stale laundry. We both took Monday off, which would normally have been something to celebrate, but instead we just rolled around the living room carpet in a state of helpless misery. It was like being pregnant again, but this time my husband felt just as bad and was no help whatsoever. Incidentally... my husband is NOT good at being ill. Our cat developed a limp over the weekend, to add further insult to injury, so seeing as we had taken the day off, I sucked up my stale, sickly breath, and took him to the vet. I also ran to get some groceries and made soup for lunch... all before 12pm and while having stomach cramps from the flu bug. I returned home to find my husband laying pathetically on the couch, a quivering hand extended in my direction to pass him a sip of water for his parched throat. He hadn't done a single thing in my absence.
That man got no sympathy. He also got no sympathy when I got a phone call telling me Little O's glasses had arrived and we needed to take him down to the opticians the same day to get them fitted correctly. My husband did not want to come, but there was no way in hell I was doing ALL the chores by myself so he grumpily accompanied me.
So, bearing all this unpleasantness in mind, Monday evening came around with a significant improvement in mine and my husband's health, but none in Little O's. In fact, he seemed worse than on Saturday. We gave him a nice warm bath and attempted to put him into bed for an early night, but he seemed so fitful and restless that I decided to take him into Prompt Care. My husband was extremely reluctant, but I had a niggling feeling that all wasn't right, so I got my way and off we set. When we arrived we were seen by a nurse and then a doctor, who both agreed Little O needed some blood tests and possibly IV fluids to get him feeling better. We don't like the ER attached to our local Prompt Care (been there before and they look at Little O like he's a fuckin' unicorn), so we told the nice doctor we'd take him up to CHOW to their children's ER instead.
WELL!! On the way home, my husband said he didn't want to go all the way to Milwaukee (a good 40 min drive away) only to sit in an ER all night and be told nothing was wrong, so he turned the car into our house. I understood. He felt unwell. I felt unwell. Little O needed fluids, which we could give him at home via his feeding pump. After all, one of the advantages to having to feed a child with a pump is that you can keep them hydrated even when they're refusing to eat or drink. I understood. I strongly disagreed, but I understood. I pointed out that I've never once been wrong about taking Little O in to be seen, and I've never created an emergency where there hasn't been one. I've always trusted my instincts, and they've always been right.
But I understood. And I let it slide. I agreed, against my better judgement, against my Mama-instincts, against everything my heart and head were telling me, to keep Little O at home in his own bed and to allow my husband's body time to fully recover. (Never mind the fact I was also still feeling shit - I'd sorta forgotten about that in all the fuss over my baby's health.) We spent the night at home and I took Tuesday off work to give Little O some extra care and love. By this point, I must have changed over 100 diapers in about 72 hours, and they were still coming strong. My baby's bottom was red and raw and he was so fussy and irritable that he was almost inconsolable non-stop.
By Wednesday morning I decided to take him into daycare and go back to work myself. I felt miserable having to choose work over him, but I've just started a new job! What else was I supposed to do? It also isn't helped my the fact my husband leaves for work at 5.30am, two whole hours before I do. If Little O is sick, he won't know about it until he's already been at work for several hours... so I have to make the decision. Anyway, I told the daycare to call my husband with any concerns as he was 'on duty', and drove in.
Around 3pm I got a call saying Little O had a fever. The daycare called my husband but he wasn't answering either his cell phone or his work number, and they really felt Little O needed to be seen by a doctor immediately. I was SO angry! I'd been fretting and worrying all day about my baby; why hadn't my husband?! Why wasn't his cell phone glued to his head? Why wasn't he chewing his nails to the quick every time his work phone rang? I was so mad I had him paged. The last time I did that I was in premature labor, so he knew something was up when I finally got him on the phone. And he left work. Immediately. Because he had no other choice.
Little O was admitted to hospital Wednesday night for severe dehydration and dangerously high sodium levels. I'm typing this out on my laptop in a hospital room while he naps peacefully, comfortable for the first time in nearly a week. It's Thursday afternoon and he's hopefully coming home tomorrow. I feel three things: 1) Anger towards my husband for not taking Little O to CHOW on Monday night; 2) Guilt at my own decision to keep him at home, despite my instincts telling me otherwise; and 3) Happiness that Little O is finally getting the help and comfort that he needs to feel better. But mainly anger and guilt.
I spent the night here; my husband went home. I took today and tomorrow off; my husband plans on working a full shift both days. I am proactive in seeking out support and assistance; my husband won't even speak to his HR team about FMLA law. It's deeply, deeply upsetting that I am still expected to carry the burden of Little O's care while also holding down (or not) a full-time job. Right now I'm seriously considering quitting work. I don't want to, but I also don't want to be 'that' employee who always has to take time off for her child. I don't want to get fired. I don't want that on my record. I don't want to let my new employers down, who have been wonderful and kind and generous, but whose patience will not last forever.
I was so invigorated starting a new job. Today I feel utterly exhausted again, and back in the same place I was a month ago.
Tina.
(I wish this were a happier post, but it isn't. So I'll round it off with a happy ending instead: Happy Anniversary, Anthea and Husband! Four years of marriage, and ten years together. Well done you.)
Friday, May 28, 2010
Bigger blog
Since Owen's birthday on May 17th, things have been a bit of a whirlwind. He has had a birthday party, some professional photos taken, surgery and a stay in hospital overnight, a change in formula, and a pretty nasty stomach bug.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
Tuesday, May 4, 2010
Seattle and other stuff
Since I last updated, Owen and I took a short break to Seattle to see some friends who moved out there last year. I was pregnant when they moved so they've never met Owen, and it was really nice to travel out there and do some catching-up. They have a two-year-old who is completely off the wall, and it was hilarious watching her interact with Owen, wondering on earth they were making of each other.
I'm pretty impressed with myself for managing this trip alone to be honest, as there was a four hour flight out there, and (once you calculate in all the frickin' delays and shit) an even longer one home. And not only that, but on the Wednesday before we left Owen woke up with a cough, which slowly became an absolutely horrendous sinus infection, complete with five minute cycles in the middle of the night of falling asleep, coughing, waking up and then throwing up. I'm not kidding or exaggerating - every. single. five. minutes. We left home Thursday morning after me seriously considering not going, and that night was possibly one of the worst I've ever endured with my son. The last time things were so bad was in September, when he was not only recoving from hernia surgery, but also had pneumonia AND a 48-hour EEG monitor stuck to his head. Yup, that was pretty bad, but at least Mike and I were in it together and we were in our own home. This time I was by myself in someone else's flat. I felt absolutely miserable and exhausted the next day, which really put a dampner on the entire trip. He did improve slightly over the next few days, but he was still very poorly on Sunday during the flight home, so Mike took Monday off work to help me get some rest and to take Owen to the doctor. You know things are bad when Mike takes time off work.
Little O is now responding to antibiotics and seems basically back to himself again, other than being a bit more sleepy and cuddly than usual - which I am in no way complaining about! He's back on the nebulizer for a bit and the antibiotics are making his poo purple, but other than that things are getting back to normal.
I'm so glad I went to Seattle, even if it was incredibly tiring. Now I can REALLY put up an argument when people humm and harr about flying with small children. Get over it! Heavens; if I can fly solo across a continent with a very poorly, tube-fed, refluxing 11-month-old, then you can fly with your very normal, healthy child, fully supported by a spouse!
Removed content for editing
But Seattle was nice!
Tina.
I'm pretty impressed with myself for managing this trip alone to be honest, as there was a four hour flight out there, and (once you calculate in all the frickin' delays and shit) an even longer one home. And not only that, but on the Wednesday before we left Owen woke up with a cough, which slowly became an absolutely horrendous sinus infection, complete with five minute cycles in the middle of the night of falling asleep, coughing, waking up and then throwing up. I'm not kidding or exaggerating - every. single. five. minutes. We left home Thursday morning after me seriously considering not going, and that night was possibly one of the worst I've ever endured with my son. The last time things were so bad was in September, when he was not only recoving from hernia surgery, but also had pneumonia AND a 48-hour EEG monitor stuck to his head. Yup, that was pretty bad, but at least Mike and I were in it together and we were in our own home. This time I was by myself in someone else's flat. I felt absolutely miserable and exhausted the next day, which really put a dampner on the entire trip. He did improve slightly over the next few days, but he was still very poorly on Sunday during the flight home, so Mike took Monday off work to help me get some rest and to take Owen to the doctor. You know things are bad when Mike takes time off work.
Little O is now responding to antibiotics and seems basically back to himself again, other than being a bit more sleepy and cuddly than usual - which I am in no way complaining about! He's back on the nebulizer for a bit and the antibiotics are making his poo purple, but other than that things are getting back to normal.
I'm so glad I went to Seattle, even if it was incredibly tiring. Now I can REALLY put up an argument when people humm and harr about flying with small children. Get over it! Heavens; if I can fly solo across a continent with a very poorly, tube-fed, refluxing 11-month-old, then you can fly with your very normal, healthy child, fully supported by a spouse!
But Seattle was nice!
Tina.
Monday, January 18, 2010
It's been a while.
Sorry it's taken me so long to update, but the day after we got back from the UK Owen's cough got really nasty, and by Thursday it had developed into full-blown pneumonia. Again. Sigh.
He's just about getting over it now, although it's taken nearly two weeks for the antibiotics to have any real effect. Owen seems to need stronger and stronger stuff to kill his bugs, because we went through the same thing last time he had pneumonia in September. It's a shame too, because the stronger the antibiotic, the worse his nappy rash gets (don't ask me why, but antibiotics and pneumonia often give babies horrible diarrhea and that then gives them painful, red cracked bottoms). Anyway, we've got drugs to fix that too, so providing he gets the full course of antibiotics, steroids, nebuliser treatments and butt gel, he should be healthy enough for his eye surgery in February. Fingers crossed.
Oh... and we have a new cat. :) His name is Robert BartholeMEW Turner, but he's known as Bob. He's seven months old and all black with a single white dollop on his chest. He's the snuggliest, most playful cat I've ever owned and he keeps me company during the day. We like him A LOT.
He's just about getting over it now, although it's taken nearly two weeks for the antibiotics to have any real effect. Owen seems to need stronger and stronger stuff to kill his bugs, because we went through the same thing last time he had pneumonia in September. It's a shame too, because the stronger the antibiotic, the worse his nappy rash gets (don't ask me why, but antibiotics and pneumonia often give babies horrible diarrhea and that then gives them painful, red cracked bottoms). Anyway, we've got drugs to fix that too, so providing he gets the full course of antibiotics, steroids, nebuliser treatments and butt gel, he should be healthy enough for his eye surgery in February. Fingers crossed.
Oh... and we have a new cat. :) His name is Robert BartholeMEW Turner, but he's known as Bob. He's seven months old and all black with a single white dollop on his chest. He's the snuggliest, most playful cat I've ever owned and he keeps me company during the day. We like him A LOT.
Wednesday, January 6, 2010
A post-holiday update
Well, we're back! Mike, Owen and I got back late last night after our two week visit to the UK over Christmas and the New Year. It was fantastic, and just the right length. I'm so glad we made it over there with the babba, even if the travel itself was a complete nightmare. For future reference, flying for eight hours with a ratty, tube-fed baby with GERD is NOT recommended. On the way there he screamed for about six straight hours, and I'm not exaggerating an ounce. He was so much better on the way back, but I think that's because the timing of the flight was more suitable and he's a little under the weather (meaning he's sleepier than usual).
I think he's caught some nasty bug from me, because while we were over there I came down with some vile throat thing that made swallowing almost an impossibility and I completely lost my voice. I also had a cough, which is the single most irritating symptom of any illness in the world ever. And that's the truth. You can quote me on it. Now Owen has the cough and if it's no better by tomorrow when his nurse comes to visit then it's off to the doctor we go. Sigh.
ANYWAY, back to the UK. Some interesting stuff happened, including noticing the formula we'd packed so carfeully was an astonishing three months out of date and we'd been using it since the start of December. As we get it shipped directly to us by our insurance agent it was their fault - they'd sent us cans with September's date on and we don't get through it slowly enough for it to have been some stuffy cans I'd let fester at the back of the cupboard. Plus, having worked in retail, I'm really, really careful about rotating our "stock", for this very reason. Oh, and ALL of the 14 cans were out of date, so their entire shipment was old and crusty. I contacted them from the UK and threatened them with legal action if they didn't get us replacement stuff, to which they rightfully shat themselves and fell over each other to help us. In the end we got a good enough replacement to last us the rest of the visit and my insurance agents are footing the bill. Quite right, for making me feed my son potentially dangerous milk.
Owen got spoilt rotten over Christmas, which was absolutely fantastic. An award for Outstanding Contribution to the Turner Family goes to his Grandad (my dad) for being the ONLY member of my family to be proactive and learn how to feed Owen by himself. My mum did one feed supervised, and then always found an excuse to bugger off when it needed doing again. Oh well. Owen also discovered the art of grabbing the mouth and cheeks of whomever is holding him, which has caused endless amusement for me and a few scratches near my ear lobes. I think he's so funny, but I always have done. He just has to raise his eyebrows when I ask him a question, or punch me in the face so he can grab my chin flab and I crack up.
So yes, a marvellous time was had by all. We went all over the shop, despite the "horrific" weather the UK is having at the moment. "Horrific", my arse. My driveway is "horrific"! And we're expecting another 10" overnight, so you can feck off if you think I'm shovelling my way out of the house at all for the next week. Owen and I are going to hunker down, watch movies and eat Cadbury's chocolate until winter buggers off. Then we'll reminisce about visiting Oswestry, Shrewsbury, Wrexham, Aberystwyth, Rhyll, Blackpool, Isleworth, Hounslow and Richmond and how much fun we had at my nephew Stanley's Christening where Owen also got blessed. My only regret is that the suitcases weren't big enough for more chocolate.
So now it's back to reality. Back to medical appointments, battling reflux and being alone with Owen during the week. Back to the depression, I suppose, because for a while there I seemed to be recovering. With all the activity and celebrations I felt better than I had in months, but now I'm back home I can feel the dark shadows hovering outside the door again. I suppose I'll just have to suck it up and get on with it, because I don't really have any other choice. And speaking of medical conditions, I think I MUST be anaemic again because I've started getting very odd bruising on my legs. Really big, dark, painful ones too, but I don't remember ever banging my legs into something. And even if I have, it's certainly not with the frequency with which the bruises have been appearing. I know I ought to get to a doctor and have a blood test done, but I'm beginning to loathe all the paperwork. Also... I researched leg bruises and fatigue online and one of the scarier explanations is leukemia, which I am really not prepared to even contemplate at this point. So I'm going to bury my head in the sand a little longer, see if things improve and up my iron intake. Fingers crossed.
Even though I loved being away, and even though coming home means facing Owen's upcoming surgery, it's so GOOD to be home!
I think he's caught some nasty bug from me, because while we were over there I came down with some vile throat thing that made swallowing almost an impossibility and I completely lost my voice. I also had a cough, which is the single most irritating symptom of any illness in the world ever. And that's the truth. You can quote me on it. Now Owen has the cough and if it's no better by tomorrow when his nurse comes to visit then it's off to the doctor we go. Sigh.
ANYWAY, back to the UK. Some interesting stuff happened, including noticing the formula we'd packed so carfeully was an astonishing three months out of date and we'd been using it since the start of December. As we get it shipped directly to us by our insurance agent it was their fault - they'd sent us cans with September's date on and we don't get through it slowly enough for it to have been some stuffy cans I'd let fester at the back of the cupboard. Plus, having worked in retail, I'm really, really careful about rotating our "stock", for this very reason. Oh, and ALL of the 14 cans were out of date, so their entire shipment was old and crusty. I contacted them from the UK and threatened them with legal action if they didn't get us replacement stuff, to which they rightfully shat themselves and fell over each other to help us. In the end we got a good enough replacement to last us the rest of the visit and my insurance agents are footing the bill. Quite right, for making me feed my son potentially dangerous milk.
Owen got spoilt rotten over Christmas, which was absolutely fantastic. An award for Outstanding Contribution to the Turner Family goes to his Grandad (my dad) for being the ONLY member of my family to be proactive and learn how to feed Owen by himself. My mum did one feed supervised, and then always found an excuse to bugger off when it needed doing again. Oh well. Owen also discovered the art of grabbing the mouth and cheeks of whomever is holding him, which has caused endless amusement for me and a few scratches near my ear lobes. I think he's so funny, but I always have done. He just has to raise his eyebrows when I ask him a question, or punch me in the face so he can grab my chin flab and I crack up.
So yes, a marvellous time was had by all. We went all over the shop, despite the "horrific" weather the UK is having at the moment. "Horrific", my arse. My driveway is "horrific"! And we're expecting another 10" overnight, so you can feck off if you think I'm shovelling my way out of the house at all for the next week. Owen and I are going to hunker down, watch movies and eat Cadbury's chocolate until winter buggers off. Then we'll reminisce about visiting Oswestry, Shrewsbury, Wrexham, Aberystwyth, Rhyll, Blackpool, Isleworth, Hounslow and Richmond and how much fun we had at my nephew Stanley's Christening where Owen also got blessed. My only regret is that the suitcases weren't big enough for more chocolate.
So now it's back to reality. Back to medical appointments, battling reflux and being alone with Owen during the week. Back to the depression, I suppose, because for a while there I seemed to be recovering. With all the activity and celebrations I felt better than I had in months, but now I'm back home I can feel the dark shadows hovering outside the door again. I suppose I'll just have to suck it up and get on with it, because I don't really have any other choice. And speaking of medical conditions, I think I MUST be anaemic again because I've started getting very odd bruising on my legs. Really big, dark, painful ones too, but I don't remember ever banging my legs into something. And even if I have, it's certainly not with the frequency with which the bruises have been appearing. I know I ought to get to a doctor and have a blood test done, but I'm beginning to loathe all the paperwork. Also... I researched leg bruises and fatigue online and one of the scarier explanations is leukemia, which I am really not prepared to even contemplate at this point. So I'm going to bury my head in the sand a little longer, see if things improve and up my iron intake. Fingers crossed.
Even though I loved being away, and even though coming home means facing Owen's upcoming surgery, it's so GOOD to be home!
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