Category Archives: Medical

An open letter to my pediatrician pt 2

Let's take a minute to reflect on how well our day started (park trip)

Let’s take a minute to reflect on how well our day started (park trip)

A letter to my pediatrician after his explosive diagnosis:

Part 2: Getting the diagnosis

Dear Dr “I”;

Edit: If this tl;dr then know this: you effed up Dr. I, and I am not happy.

Dr I, Hopefully you read part 1, and so now you know that you walked into the room to face a very tired, over stimulated, cranky toddler (who was doing quite well for this) and his increasingly stressed, nervous mother. Strangely when you came in, you also looked quite distracted and worried, and not your usual ‘I have all the time in the world, your child is everything to me’ chilled self, although I appreciate that latter is a façade put on for the benefit of your patients.

With a distracted look, you turned your screen to me and started the usual litany of statistics: “Growth charts… Sam started here, and as you can see, he is still way off the chart. We’re looking at 6ft 4” still”.

I hate this part.

This is the part of the well-child check where you announce my child will be 6 ft 4 (AT LEAST!) when he grows up and wait for some reaction from me. Firstly: I don’t believe you, but time will tell. Secondly: what reaction do you want? Height is achieved, plainly through no skill of mine, my husband’s or my child’s. It’s not difficult as a middle class Ameri-Brit family to provide adequate nutrition to allow my kiddo to fulfil his genetic potential and so I really don’t feel I can take credit for this. Nor am I actually particularly over-joyed: I try not to focus on global beauty standards with my child because I would rather the world, as a whole, did not set general standards of beauty and hold people up to them: I’d much rather we more openly acknowledged that beauty is in the eye of the beholder and celebrated tall, short, fat, thin, middle, blonde, brunette, curly, straight… whatever. Sometimes, in response to my slightly panicked look you say “He’ll be a basketball player!” and while I appreciate that Sam is too young to be affected by these things now, I also am not into pushing him in any one life direction. So, while it is not particularly harmful, it doesn’t come easily to me to say ‘Yes! Because of his genetically determined height at 24 months old, I have decided exactly what will make him happy in his 20s”. Anyway… I am an over thinker and these are the things I think in the deafly awkward silence following exclamations about my son’s projected height.

He's a cutie

He’s a cutie

One day I’ll get it right. One day I’ll say something brilliant like “6ft 4? Fabulous, his life span will be shorter than if he were not tall”. Or maybe “That tall? Excellent, if medicine advances very quickly, and he is able to gestate his own children, he’ll be more likely to have twins“. And we’ll move on from this awkward conversation.

Sam's height 0-24 months

Sam’s height 0-24 months

But today, you barely paused at his 99th percentile + height. Or his weight (29.5 lbs), or how excellent his weight-for-height percentile is (70th). You looked haunted. You said “and that’s done”. And I said “No vaccines?” and you said “not this visit”, and when I saw ‘flu vaccine on your screen, you gave a long pause and said “maybe the ‘flu… if you want it…”.

And this is where we started to mentally part ways.

“Ummm… do I want it?” I aksed. Despite being militantly pro-vaccination, I was now alarmed by your hesitancy. “What do you recommend?”. You looked uncomfortable…

“It’s up to you”. Up to me? Aren’t doctors supposed to be full of the joys of vaccination? My damn OB would barely let me get out the door without a ‘flu fax (OB! What is obstetrical about that?!?). One of my performance criteria at work is having the ‘flu vaccination BEFORE Nov 1st (I work in a clinical environment – doctors everywhere). And here you were, hesitating…

Your hesitation threw me and I said “Ummm… I guess we won’t get it?”

“Good” you said and brusquely moved on.

I WOULD LIKE TO POINT OUT THAT YOU, MR ANTI-FLU VACCINATIONS, WHO TREATS HUNDREDS OF CHILDREN A WEEK, ARE CURENTLY OFF WORK WITH THE ‘FLU. Think about that.

He's pretty interactive

He’s pretty interactive

Back to my topic. You turned to Sam. “Can I have a hug?”. Sam paused. He looked at you. He thought about it. “Hug Dr I…” I gamely said (although I also don’t especially support making children be affectionate to people they don’t want to [bodily autonomy and all that] or to strangers [far scarier reasons]). Sam, dutifully, blessedly, went in for a hug and as he did he saw a jar of sticks about your head. He looked at me and pointed, but you deposited him on the ground and shook your head.

He can love cuddles

He can love cuddles

You asked Sam how he was. You asked him what he had been up to. Actually, so that I could take a ‘phone call about how my MRI showed that my brain is inflamed (don’t even go there Dr. I) and my sinuses all screwed up, he had been watching an episode of Thomas Train. So, he told you about it “Thomas got stuck on the bridge!” he said (although it sounds more like ‘Tos stuck on the widge” – that’s what you might remember). You didn’t reply. I imagine this was perplexing to Sam, who repeated it. You didn’t reply. He said it again, and then Sam supplied the answer you are supposed to give “Oh dear!” he said ‘What happened?”. Your response?

“Sam, can I look in your eyes?”.

How is this even appropriate?? Acknowledge the damn Thomas story. Lawd knows I do it at least 100 times a day.

You seemed to want to put him on the bed, and I gestured that that was fine, but something was up, I don’t know what, and you took hm off the bed and plunked him on my lap. You shone your little light thing at him and looked in one ear, then said ‘Sam, look at me’ and when he didn’t, moved the light to his other ear.

And then you were done. And you were packing up and mumbling something about his language not being very good for his age. And secretly? I was almost a little pleased because I have been saying for over a year that Sam is not very good at langauage – he learns it, eventually, but way slower than other kids. He got his first word quite early, but then he never had the ‘explosion’ other kids go through. He knows his alphabet, the knows his numbers, he can communicate what he wants, but his language is not great. I have been pointing this out, for over 12 months, and everyone has been shushing me. And honestly, in that moment, all I could think was ‘HA! Now I can tell Wes that I was right and we need to work a little more at Sam’s speech’.

Daddy cuddles

Daddy cuddles

You left the room.

I started the laborious task of packing up 26 alphabet cards that Sam really wanted to call out both the letter and a word starting with that letter for each one. Sigh. Half way through this, you came back in the room.

“I don’t think I was clear with you”

“Ummm… OK?”

“Your child’s language is not as it should be”

“Yes, I know, I have been saying this for a while… I am wondering what we can do to help it come along” I said.

“No, you are not listening to me… your son has a problem…”

and while I remember nearly all of the visit up to this point with crystal clarity, everything became a blur from here. Here are the snatches of conversation I do remember. You saying “His speech is repetitive, and it is out of place” and ‘We call it echolalia”.

You said “I can’t get him to look me in the eye” and I remember saying that I was pretty sure he looked me in the eye and you – you who sees my son for 5 minutes every 6 months – had the audacity to shake your head.

And then you broke my heart a little bit when you said:

“The things you think are cute – are a problem”.

Not "a problem" - he is actually cute

Not “a problem” – he is actually cute

I remember you repeatedly saying to me, in this stupid grave voice “I need to be clear here”.  I remember you getting frustrated that I wasn’t doing – I don’t know what – throwing my hands up in the air and weeping? Because honestly I was thinking “OK, so Sam has some language delay, Sam has some social problems, that’s fine, we’re all different – I love my son! If he needs help, we’ll get it, and if this is just him, this is him, and we’ll love him! We are so blessed to have him”. This is what I was thinking as you started saying, in a voice I would personally reserve for a potentially fatal illness:

“I want to refer him to the autism clinic” and I was trying to get some calm here, and some perspective. And I told you that I was fully aware that Sam had some language delays and that this converstaion was not a huge shock to me, because I am a trained Developmental Psychologist, and I knew langauage delay was a sign of ASD and so I had looked out for this for months, and I really didn’t see it (ME! HIS MOTHER – yes, mothers can be wrong, but please give my feelings / intutition / experience some credibility, or some acknowledgment). And you said “No, he is on the spectrum. He is clearly high-functioning, but on the spectrum”. And I immediately thought ‘well… we are all on the spectrum – that’s why it is a damn spectrum, but OK, I don’t really believe you, but if this the case then fine, we love our kiddo and I see no reason to think that he won’t always be as great as he is now…”

He's an insanely happy kid - that's all that really matters to us

He’s an insanely happy kid – that’s all that really matters to us

And when I conveyed this to you, it clearly bothered you (or maybe you were grumpy because you had the ‘start of the flu) because you started to talk about ‘regressions’ and ‘not using language at all’ and his words ‘disappearing’ and then I got scared. I love my son as he is now – I am not prepared for him to change. I do remember clearly trying to back you up. I remember saying “hang on, he has a father who is a self-confessed loner and a mother with intense, almost pathological social anxiety – I am a behavior geneticist, he has not had a great start!”. And that is when you took all my suggestions, all my reasons, all my attempts to calm everything the F down and you looked me straight in the eye and you said:

“Let me be clear. Your son is atypical”.

And I was shocked. And upset. And confused. And disbelieving. And you said “I am not using the big A word yet, but he IS on the spectrum, and he will regress”.

Funnily enough, at this point Sam decided to run up and hug your leg and you looked at me and said “He is a really sweet boy though” and I was thinking ‘Though? THOUGH? He is a really sweet boy, end of’.  I said “OK, so what can we do?” and we mentally really parted ways when you said:

“Look for the regression and call me”.

And then you left. I went to the car. And I texted my friend Sheryl to see if I could go and see her, and I cried. And cried. And cried.

Let’s be clear – my son is pretty behind in his language development. We are getting him a formal assessment – and would be delighted to particiate in any prescribed intervention. Or just delighted to let Sam be Sam and focus more on his other strengths. BUT, given that he is 24 months old, that he has a more limited environment than most other toddlers, that you remarked on his broad vocabulary, and that he is very slowly starting to put words together [‘car is white’ or ‘ladybug on nose’], I suspect it is too early to know if this is truly a developmental delay, or if he is just the tail end of normal. However, even if my son was showing early signs of ASD (he was not) or not, this is what I really want to tell you.

Here are the ways you momumentally messed up (and let’s not even go into being hesitant to give my son a vaccine that could save his life):

(1) You never, once, asked if I was the primary caregiver, or how much time I spent with my child;

(2) You mistook a screener for a diagnostic tool;

(3) You didn’t administer the screener properly, in that you never checked I understood the questions (I didn’t);

(4) You made the classic error of forming an opinion before seeing the child, and going for confirmation, rather than taking an open view, and being as objective as possible; You would do well to read and understand Rosenhan’s classic 1973 article “On Being Sane in Insane Places” (or tl;dr? Here is the wiki link which explains the problem of assessing someone you have already labelled);

(5) You made no attempt to get to know the child and get him comfortable in his environment before performing an assessment of his normal behavior;

(6) You didn’t listen to his mother / father – the main informants with diagnoses at this age;

(7) You mistook ‘at increased risk’ for ‘definitely on the spectrum’;

(8) You were utterly reactive [‘just wait for the regression and call me’] and not proactive [hey – how about some language intervention? Social stimulation? Let’s see what we can do)]

(9) Most egregious of all (I think, it’s a toss-up with 8) you treated ASD like it was the worst thing in the world – I couldn’t understand why I was so upset in the car, I kept saying ‘pull youself together Lekki, it’s not like he has pediatric cancer ffs’ but it was your tone, your gravity, your attitude that it was all downhill from here. Your lack of reassurance, your “he is a sweet boy though”. I am not naive – as a class teacher in a special needs school I have worked with the full spectrum of ASD. Children with ASD are still children, they still have a lot of offer, they can still be a joy. When you said “what you think is cute, is a problem” is NOT the case. What I think is cute in Sam, is cute. He is a darn cute kid. It may also signal a developmental difference – but he is still cute.

family

Why am I making such a big deal of this? Soon, I will get around to writing part 3: the aftermath. But it has been a really a hard week. It is really hard to have someone tell you there is something wrong with your child. It is really hard to have someone imply blame, and to tell you that there is nothing that can be done. It is harder still to be told that things will change – that you will lose the child you love so much to a ‘regression’. My friend Craig put it best: “There are some things you can’t unhear”. Whatever I think of your (mis)diagnosis you have cast a shadow over the next year. We are constantly questioning ourselves, questioning Sam, wondering what will happen. I am questioning my whole parenting philosophy (probably best summed up as ‘unparenting with lots of cuddles’). Wes is questioning his ability to look after his son. We are both genuinely quite shocked that anyone thinks of Sam as anything less than wonderful. Different – sure. But different isn’t bad. I feel so protective over my son.

This could all have been so different. You could have said “Hey, there are some things I would like to keep an eye on. Let’s get someone out to check Sam is hitting all the targets we expect. He could be a little more sociable, and better at language at this stage, and I just want to make sure we are giving him the chance to fulfil his potential”. Or whatever. We can discuss what should have been done in part 3, when kind people actually did things properly.

Ugh. I am still so up and down about all this.

 

Advertisements

And iiiiiiiitttttt’sssss…..

…. Von Willebrand’s Disease. Type 1.

IMG_0547

Rewind. I was sitting in a hematologist’s office hearing the words ‘You’ve been dicing with death your whole life’. Wait. More information needed. Rewind further.

Birth did not go quite as planned. Actually the birth did – the postpartum period did not. My amazingly skilled OB (we still love Dr. Dryden to pieces, even if she isn’t Dr. Boswell) was torn, she wanted to be believe it was ‘just bad luck’ but could not believe that such extensive loss of blood could not be pathological, so sent me for a battery of tests. ‘On the off chance’. ‘Just In Case’. ‘To tick every box’.  8 vials of blood later (chance of a false positive anyone?) the results were in: they were suggestive of Von Willebrands, a condition where you either don’t produce enough Von Willebrand factor (a factor than carries factor 8, which is necessary for effective clotting) or where you don’t have any (I had some), or where you Von Willebrand’s was there, but it was’t very effective and so can’t recruit platelets into the clotting site.

ICU machines

Dear Tecas Children’s: Thanks for the blood. Love Lekki x

I now know far more about how blood clots than I am comfortable with.

So, off I went to Dr. Kelty Baker, who has an amazing reputation. And indeed – she was wonderful. Smart, funny, fascinated by hematological conditions and motivated to cure me. Unfortunately, her nurse wasn’t. This was the nurse who walked into the exam room where I was waiting, took my blood pressure and shoved a thermometer in my mouth, took reading and walked out, all without a single word. Lovely. Just lovely.

Dr. Baker felt it was Von Willebrand’s and asked if I minded having a genetic test to confirm. Me? A geneticist – mind? I’m positively enthusiastic. So we made a plan – I would have a genetic test done. This had to be done in Wisconsin for some reason (even though Baylor, just across the road, does this test). I would also (because we don’t know the full mutations contributing to Von Willebrand’s) have had some tests done which looked at whether the little Von Willebrand factor that I did have actually worked (the blood tests were borderline). Aaaaand, because of the fact that regardless of the cause, we would have to treat the fact that I did not have enough Von Willebrands, we would do a challenge to see if I responded to a drug (DDAVP) designed to increase Von Willebrand factor. All good. I agreed. She said that these non-genetic tests were only done in a field by a fairy under the full moon & I even agreed to this. OK, they were only done heinously early in Methodist hospital on Tuesdays and Fridays but that is basically the same thing.

Guinea pig at the ready

Guinea pig at the ready

Then we entered the vagaries of the American Healthcare System.

My insurance company said that Wisconsin was ‘out of network’ so I would in essence be responsible for the full cost, minus a teeny-tiny co-pay. Knowing that genetic tests can run into 1000s, I HAD to find out the cost. My insurance company also said that I should find out the name of the tests done at Methodist, to check that they were covered – or again, I’d be liable for the full cost as Methodist is not quite in network but some facilities are. It was complicated, but I called Dr. Baker’s office to get the name of all the tests – genetic and otherwise – to report back to my insurance company. And there I encountered the lovely nurse again. And problems ensued.

The nurse told me that Dr. Baker had ordered the following tests:

Platelet aggregation Panel ($256)

Risocetin co-factor ($184) and

Von Willebrand’s Antigen ($178)

I told the nurse that these were not genetic tests so at least one was missing, and furthermore that I had had already had these tests done for free in-network at Texas Children’s Hospital, so would she explain why they now had to go out-of-network. All she would say is ‘shall I tell Dr. Baker you won’t pay for these tests?’ over and over. Whatever I asked, she came back to that.

Me: ‘Are you sure these are the tests?’ Evil-face: ‘Are you going to pay for these tests?’.

Me: ‘ICould you ask Dr. Baker if I could have the tests done in network?’ Evil-face ‘You have to have these tests where we say. Can I tell Dr. Baker you will pay for these tests or not?’.

Me: ‘There is not a genetic test here – why not?’ Evil-face: ‘Look, are you going to pay for these tests or not?’.

Me: ‘I have test results for these. TWICE! I can read them to you’. Evil-face: ‘You have to have these tests. Can I tell Dr. Baker you will pay for these tests or not?’.

Eventually I had to say ‘well, no, I won’t pay for tests where the cost can’t be justified’ and she hung up and I never heard from the clinic again, until they wrote to my OB and sent me a copy saying that I couldn’t afford medical care and that they would help me when I came to give birth next, if needed.

NOT AWESOME.

So, I transferred care to Dr. Mark Udden. First up: his nurse treated me like a human – you know: told me her name, warned me before jabbing things into my mouth… things of that nature. The junior doctor was nice – he had a daughter born 5 days before Sam and had lived in Lewisham (the site of my London flat). OK, so not medical-care necessities, but a good sign nonetheless.

Dr Udden wears bright bow-ties. Awesome.

Dr Udden wears bright bow-ties. Awesome.

Dr. Udden was the best of all – he was practical and smart. He laid it down: I don’t have enough Von Willebrand factor. Although Type 0 blood naturally has less Von Willebrand factor, he would expect Type 0 to have levels at about 50-60% less than non-Type O, and I was at 32-34%. He suspected that my Von Willebrand’s was working fine, the borderline reduced activity in my tests was just indicative of not having enough. Genetics were fun, he said, but we were still going to have to treat the lack of Von Willebrands so why spend the money? So, I am off for a DDAVP challenge test to see if I respond to DVAPP by making more Von Willebrand’s factor. We assume I will. So from there on, they will check my Von Willebrand levels before giving birth next time, and give me an infusion of the factor while pushing. If I go for minor surgery, I will take DDAVP. If I go into hospital for an emergency: more DDAVP, infusions of the factor if extensive surgery is needed, or I am smashed to bits in a car accident or something.

I objected to all this drug talk. I pointed out that I had got this far and been just fine. Turns out hormonal contraceptive artificially increases Von Willebrand and I have been on those since I was 13 (due to heavy periods – another sign of Von Willebrand) so it had been masking any symptoms. Plus I had avoided any surgery except while pregnant (when I had dental surgery), and pregnancy is a time when you also produce more Von Willebrand, so I made it out without crazy bleeding. Lots of lucky co-incidences have got me thus far in life without incidence. Hence my ‘I am not sure I really need to do anything about this’ was met with ‘You’ve basically been dicing with death your whole life’.

Fair enough.

Unfortunately it is a heritable condition, and so we have to get Sam tested. But, my case is so mild, it is likely I am a heterozygote, meaning that Sam only has a 50% chance of contracting the disorder. And if he is not blood type O, he probably will be OK.

And I have to have my IUD out. The extra bleeding that goes with IUD and non-clotting blood is just a bad combo. It is true that things are pretty bad on that front, like today is Day 6 of my period and I still can’t get through the night without a horror show, but as I am allergic to latex and have a bad reaction to hormones, I was sticking it out. I am a bit stuck about what we will do now. Sam no. 2 anyone? 😉

A little bit o’ surgery to brighten my day…

blog3

Beh. That’s for when ‘meh’ doesn’t quite cut it. Like for the following story.

About 2 weeks ago I made my nightly 3 am trip to the kitchen to drop off some post-feed expressed milk (<—- pumping at 3 am after being up for breast feeding is the definition of a labor of love I think). I am, as you may expect, not at my sharpest at this particular point of the day. So, when I looked down and saw a little whitehead on my hip, and thought it was an ingrowing hair, when I popped it and it didn’t seem quite ‘right’ you’ll understand why I promptly forgot about it and moved on.

The pesky thing formed a lump. A fairly painful lump, tiz true, but I paid scant more attention to it. Until at a point this week, when I noticed the lump was about the size of a lemon. ‘Hmmmm’, I thought, ‘that’s not good’ and made an appointment with the doctor.

That was Tuesday and the first appointment they could give me was Thursday afternoon, which seemed fine to me.

On Wednesday, I started antibiotics and noticed that the lump had cellulitis (hot, inflamed skin) for a handspan’s width around it, and the pain was enough to bring me to tears. It was also making me limp as the little act of stepping caused vibrations that added to the pain. ‘Hmmmmm’ I thought, ‘very not good’. I called the doctor and asked for an appointment that day, but it wasn’t possible. So, I carried on my work day and tried my best to ignore it. The drive home was horrendous. The seatbelt was placed right on the lump and I entered the house crying my eyes out. Wes looked after me that night, and 1/3 a bottle of wine later I managed to get some sleep (I pumped FIRST, people).

Now that I write it out, it seems crazy-bad. But at the time of going to doctors on Thursday, I was still concerned they would think I was being a hypocondriac, roll their eyes and reluctantly write me a prescription for antibiotics (I think this is a hangover from my days in the hands of the skeptical NHS). It was not the case. As soon as the nurse saw it she said “Oh, that is bad, bad, bad” and went and got Dr. Goodpastor.

I actually had several things to tell Dr. Goodpastor about, but as soon as she saw the lump, any mention of my sciatica and potential yeast (er… sorry…) went out of her head. She gently looked at it, while I yelled in agony. She was super concerned with how deep into my flesh it was, and how close to my hip bone. She was pretty sure it was MRSA and although she mentioned antibiotics, she felt it needed to be opened to drain. The problem was that it was so deep that she couldn’t get the local anesthetic in to really numb it. She was reluctant, but to mess with it, but with my encouragment (I REALLY wanted relief) a very sympathetic Dr. Goodpastor got lidocaine into the top layer (no stranger to pain, I swear that was as painful as anything that happened with the birth of Sam), while I yelled and sweated so much the bed was drenched. But, it didn’t numb the darn thing. As she lightly cut the top with a scalpel, all the inflamed bottom layers felt like someone was holding a burning cigarette relentlessly to my skin.

I figured she would send me home with anti biotics and try again later, but as she looked at it closely she noticed grey, purple and black patches and said ‘I am sending you to a surgeon’.

I was dumbfounded. I needed several rounds of ‘really?’ and ‘yes’ before it sunk in. The surgeon was closed right then (more rounds of ‘really? It is that urgent?’ and ‘yes’) and Dr Goodpastor was tempted to send me to ER. I persuaded her to give me one more night to see if the super antibiotics and anti inflammatories would work, so she booked me in for 10 the next day.

The saddest part of the whole thing was that I can’t breastfeed for a whole 2 weeks 😦 The drugs are not good for Sam. It’s not so much the formula (although with MRSA around, I really would like Sam to be getting breast milk), but it is that 4-7 am stretch where Sam and I curl up together and he feeds from me on and off, which is so special to me. It is my absolute favorite time, and I know Sam will find it a hard adjustment losing that, and I hate that for him. He always wakes me with the biggest smile and I hate that we’ll miss it for a while. Plus, I HATE that to keep my supply up, I’ll have to pump and dump for a while. Pumping is the worst, but it keeps me going as it allows me to do those night feeds. Boo to all that wasted effort!

So sad to pump and dump this. SO SAD.

So sad to pump and dump this. SO SAD.

Sad to say that one very painful night later, it all looked just the same in the morning. So, off to Dr. Appel, a surgeon, I went. When he saw it, he too pulled a face and said that basically, the infection was drilling down and down (not working its way up and out) and killing tissue on the way, so that no antibiotics could reach it. Gross. He had to remove the infection and the dead fat all around it. Double gross.

On the plus side, he fast tracked me to St. Luke’s Hospital, where I immediately had a minor surgery (just over an hour) that went well. I did have a minor freak out about the procedure – not because I didn’t recognize that this was the most minor of operations, but because everything spiraled so crazily from a routine induction with Sam, the memory still haunts me a bit. I remember wanting to fight the anesthetic because they didn’t know if I would wake up, and that time (a split second really) thinking about Sam being left without a Mum, and how I wouldn’t know he had been, or see him, or be able to help him, and that deep sadness it made me feel remains with me. So, I wasn’t best pleased for a general. But, on the plus side, I think I am now over my fear of hospitals and procedures because this one went so well! I have been reminded that everything can go swimmingly! Although it still hurts, the pain is somehow less upsetting. It’s as if my body knew the last pain was a bad pain, and this is a healing pain, if that makes sense? I don’t fight this pain (although, they did also give me some pretty gnarly drugs, so we’ll see how I feel when those wear off 😉  ).

Workin' that hospital gown

Workin’ that hospital gown

St. Luke’s were super sweet. They let Sam sit on the gurney with me while I was wheeled from the prep room to the OR waiting room 1 floor up. He loved it! Everyone waved at him, and he was looking around, quite fascinated by the experience. It was like taking a little fairground ride with him. And of course, when they wheeled me to the recovery room, Sam was waiting for me with Wes, and both had huge smiles.

Sam loving his gurney ride

Sam loving his gurney ride

It’s all good now. I am in a fair amount of pain, which I guess you would expect when doctors dig out lumps of you for an hour or so, but in good spirits. I go for a check-up on Monday, and am optimistic that that will be the end of this whole sorry tale!

Thanks to everyone for their kind words and wishes 🙂

 

Post-partum complication reflections

Sam’s birth really comes in three stages to me: the ‘last day‘, the induction and birth, and the post-partum aftermath. Although I was happy to share, in glorious details (too glorious for some?) the first two parts, I have decided not to blog in detail about the last bit. This is because:

(1) I don’t want to be another internet scare story;

(2) It is incredibly painful for my family, and some of my friends, to think about and thus they do not need a permanent reminder to pour over;

(3) I don’t think I have fully processed everything – for example, I still see pictures that haunt me or feel funny when someone writes ‘you nearly died in childbirth’, it’s as if it didn’t actually happen in my mind, at least, it still seems like a story someone told me.

So, in the spirit of positivity, I am not going to rehash the sorry tale (although any curious peeps are perfectly welcome to email me about it – I have a fairly blow-by-blow account I can forward on with no problem), but instead leave you with the thoughts that are in head, as I process the whole sorry tale:

(1) Dear God, I am glad I did not give birth in a birth center after all. Quite simply, I would not be here now. I now do not know where I stand on home / birth center births.

ICU machines

Not available at a birth center…

(2) Wes’ Aunt is a nurse, and is fairly sure that many hospitals in the US would not have been able to cope with the demands of a 10-unit blood transfusion. I ended up at Texas Children’s utterly by chance: they were about the only people who would take me as I moved state mid-pregnancy. I wonder if God was looking out for me at that time.

(3) I am ridiculously grateful I am a health nut. When we went in for the cervadil, as is standard procedure, I was monitored overnight. My temperature is 1 full degree lower than average, my reflexes are (literally) kick ass, and my heart rate drops so low in my sleep that the machines kept sounding alarms for the nurse to come as I had dropped into a Brady (below 50 beats per minute). These are all indicators of good health and our nurse commented “Why, you’re just going to live forever” [words that would later haunt Wes]. I suspect the speed of my recovery, and possibly my recovery itself, was due to a long relationship with weight-lifting, healthy eating and running. I really would urge all my readers to care for their health.

(4) I am amazed at how much humans can rebuild a body. I was left as a kind of shell and it blows my mind how much blood, plasma, fluid etc the doctors could pump into me, and how much they could do to keep my body going: it was for a brief while, almost like I was a vessel and the ‘life’ was just happening artificially outside of me with machines and so on doing all the work. The gifts that Science has given us are incredible.

Body not really functioning outside of the machines here…

(5) That being said, I am also amazed at all the things Science / Medicine couldn’t do. After rebuilding as much as possible, and troubleshooting, the doctors just had to wait to see if my ‘body would take over’. Of course it did, but it took time. It was interesting to me to watch certain systems start working again and reminded me what an amazingly complex and phenomenal thing the human body is.

Body working again

(6) I am clearly not at all used to ‘giving in’ to my body, when it wants to be weak. Every physical and mental challenge, I have just pushed through at taken my body to limits people did not think I was capable of: Tough Mudder? I’ll do it all. Grant due? I’ll work until 2 am every night and STILL train twice a day… I’ll recoup and recover later. This gave me a feeling of invincibility, and it has been hard learning I am not. The recovery was / is difficult… when I pushed it too hard (with ooooh, a trip to the grocery store), I got two infections. My anemia is bad enough that my heart is skipping beats / fluttering as it works extra heard to get oxygen around. Nothing to worry about, but serious signs that I have to be careful. I literally have had to bow down to my body holding me back, or watch it fail. It sucks to be reminded of my limitations, frailty, and human-ness.

Recovering at home – finally.

Writing this out made me realise something hidden deep inside: I used to love my body, because it was so strong. Now I hate it because its weakness betrayed me, and still does, every day. I’ll get over it.

(7) The hardest thing of all – of all – is that Sam’s coming into this world was not met with joy. I still cry when I think of how he – as an innocent little baby – got his start. I came across a picture Wesley took of himself right after he was handed Sam:

 

It breaks my heart that there is no joy here, just sadness that no one could tell him if he would see his wife again. When he called my parents when I was out of OR he said “Well… you have a grandson” but because it was followed up with “but we don’t know if you’ll have a daughter” my parents did not celebrate. In fact, they did not tell anyone about Sam for a couple of days when I was in the clear.

Possibly what breaks my heart the most is that when I was out of the OR and regained consciousness, I was in a lot of pain. I literally yelled and writhed my way through the first night. The nurses asked if Sam should be taken to the nursery and although ‘no separation’ was drummed into me, I was so consumed by my own pain, and so inward looking, I just said “yes. Take him”. I hate that I did that. My head says it was necessary… my heart says I was not a good mother.

Sam watching his Mum in ICU the next day

I also hate that I couldn’t really care for him initially. Sam was placed in my arms and I just held him passively – Wes did feeds and diaper changes, cuddled him, brought him to me. Wes placed him in my arms and I just held him passively. When most people are going home with their babies, I was considered too ill to be allowed to be alone with Sam and had to call a nurse to take him to the nursery if Wes went out (to get food or something). When I was out of ICU, we had a family photo shoot. Usually the Mum holds the baby and the Dad sits behind. I couldn’t really do this, as I could not get close enough to the camera while attached to IV lines, so the photographer said “OK, Dad come to the front, Mum can be in the background”. I wanted to cry as I felt this summed up Sam’s start in life: Mum a useless figure in the background. I worry that there is vital bonding time we’ll never get back.

Not ideal conditions for being a Mum…

Ultimately, the physical recovery was (and still is) tough. I have no immune system and still not enough red blood cells. I get infections easily, and I don’t beat them well. I have an extra layer to my tiredness, and my heart has an irregular beat (this will sort itself out!). But, though I hate that, and hate that I can’t just beat my body into submission, I get better and better every day and soon will be left with no visible traces of the ordeal. Emotionally, I think the wounds will take a bit longer to heal. That is where the scars will be.

On a happier note, it was of course all worth it, and if the Frazier-Wood’s can get through this OK, they can get through anything! Wes was amazing, and this was a bonding experience for us. There were happy times even in that first week, and there will be many more.

Now… back to blogging about happy topics. It’s advent, which means I have a whole lot of decorating and crafts to tell you about 🙂

A plea to all my readers…

EDIT: Apologies for all the very many typos. My keyboard battery was dying.

So, here is what happened to me today (NO FRETTING, it has a good ending):

2 months ago, my friend Clio noticed a fairly prominent mole just above my bikini line had got bigger while I was pregnant, and if I was concerned. I had kind of noticed it too, but more in an ‘ewwww… gross’ kinda way, that a ‘what is wrong with this?’ kinda way. But, Clio noticing it was enough for me to mention it to my OB.

My OB took a look, and said “it doesn’t look too bad, and we don’t deal with things like that while in pregnancy, but I’d like you to get it checked out 6 weeks after birth by a dermatologist, just to be sure”. I agreed, but really, I wasn’t sure how likely that was to happen.

Fast forward 2 months, and my OB says to me “Hey, I was at lunch with a dermatologist and I mentioned your case. She said they *do* check people out in pregnancy – so here is her card”. She made me agree to call. Knowing I would be ‘checked up on’, I called, and got an appointment in a week’s time: today.

Ugh, the dermatologist was an hour late, at an extremely busy time for me. Honestly? I nearly just walked out claiming another appointment, and honestly? It was because I really don’t worry about my moles. Sure, I know the warning signs, and I look out for them, but it just didn’t seem like a likely, or an urgent, health concern. Anyway, as I was about to high tail it, they called me in.

The dermatologist looked at my mole. Her verdict? “Eh… doesn’t look worrying to me. It is the size we routinely remove, but not in pregnancy. Although the procedure is safe for pregnancy, we really don’t like to mess around with the body at that time, so I’m happy to leave this one”. As I was about to get dressed, I said “Oh, my husband noticed a mole on my upper back had changed – could you take a look?”. She did, and said there were no moles to worry about. She noticed (but was kind enough not to say!) that I a very mole-y person, and said “you know, there are some moles that could be checked on. But we really don’t mess with pregnant women’s bodies, if we can help it. Come back after the baby is born, say December… no rush… whenever… and I’ll do a full skin map for you. We can then just have a baseline for any future changes”.

Sounded good. I doubted whether I would really, actually make it back. Pressures of work and all, you know? I mean, she had given me a few months’ pass… whatever. Not a health concern. Then she suddenly said “Stop”. She bent over my lower back and said “Yes, this one comes off. Now”. Slightly dumbstruck I looked at her and said “Right, in December? When I am not pregnant, yeah?”. “No. Now. Today. It goes to pathology”.

A quick sharp intake of breath (lidocaine injection), a scalpel (100% painless) and a band aid later – the mole was removed and apparently I’ll have a fairly unattractive scar.

So… I am not really worried about this mole and the results. I mean – no one likes waiting for such results, but I am not especially concerned. But, it was a wake up call.  I take my health very seriously. I always have. I was less than 5 when I informed my parents I wasn’t getting enough Vitamin C and there might be too much fat in my food (for the record, my parents are pretty healthy eaters, all things considered). I was under 12 when I banned all artificial sweeteners. I exercise regularly, I watch my BMI, I stick to a reasonably healthy diet, I try to get my 8 hours of sleep, on average. I do love Diet Coke, but I restrict it and I drink it with guilt when I do 🙂

To me: health is a personal responsibility thing. With the upcoming election, I hear the Republicans talk about this a lot: when it concerns finances. How people on welfare are just not taking responsibility for their lives, and it costs others. In fact, an old tape of Romney’s has just been released in which he says exactly that:

“”There are 47 percent of the people [those who do not pay income tax] who will vote for the president no matter what. … who believe that they are victims,  These are people who pay no income tax. … [M]y job is not to worry about those people. I’ll never convince them they should take personal responsibility and care for their lives.

Whether you agree with Rommers or not, I do feel the same health wise (although I sorta think my ‘job’ is to help people take responsibility for their health, not to give up on them). In my opinion: We all have a personal responsibility to take good care of our health, or it costs others: be it costing $$ to those on your insurance plan, $$ to those who contribute to your welfare, or more worryingly to me: be it a huge emotional cost to your friends and family.

Do you have children you have a duty to be there for? Do you have a partner you promised to look after? Then you have a responsibility to look after your health, in my mind. Do you feel a responsibility to your parents – to be around for them? Again: then a responsibility to look after your health to your best ability.

I really feel that strongly about it. It enters into the quasi-religious to me as well: God gave me this body, and I am grateful, and so I should look after it. Yet, yet, I have had “get moles checked” on my list for years. YEARS. And done nothing about it. Why? I don’t know: apathy? fear? ‘it won’t happen to me’-ness?  All of the above. Ignorance about who to go to and when? Sure. Reluctance to dole out a $35 co-pay when I moved to the US and it was no longer ‘free’ [prepaid]? Yup. The feeling that I know enough about health care to know if something was really wrong? Bingo.

And what happened? A mole got to the stage where a dermatologist who is clearly very against any interference in pregnancy wouldn’t wait 2 months to deal with it. A very cautious specialist believed it needed action: NOW. Not in another 3-4 years when I finally bothered, not even in 2 months. Now.

I maintain: I am not especially worried, but I also maintain it should not have got to this stage. I am annoyed at myself for not taking responsibility for my health.

So: please, look after your health. Get outside, eat well, wear sunscreen and do all that. But also: go and see your healthcare professional. Get a mole map, get your pap smears, do your breast / testicle examination. All of those time consuming, money eating (if you are in the US… although perhaps not so much now, after ObamaCare), slightly boring, probably embarrassing, and quite awkward things.  Learn the warning signs of stroke and diabetes. Get to healthcare provider if you are at risk of any of them.

Look at it this way: we KNOW preventative care is cheaper and more effective than emergency troubleshooting (why do you think Romey practically invented ObamaCare? It wasn’t out of love for the health of people of Massachusetts…). We know it is financially more cost efficient, and emotionally too. We know it saves lives. And we are so lucky to be able to access it. Lucky to have it open to us (if in the US without adequate –  or any – insurance then my heart goes out you), and lucky to position to perhaps prevent an illness others have thrust upon them. Not all cancers are preventable (as an example) – some people have no choice but to battle it. You may be lucky enough to be able to prevent that.

So please, please use the best  preventative care offered to you at the moment, in every way that you can.

I’ll keep you posted on the mole results, but know that I am sleeping well 🙂

Allergy update

Allergy problems may well be solved. How you ask? Well, strangely enough… by doing what the doctor said.

If it was not for my stubborness, I would have all but given up hiking in Alabama now. 80% Deet all over me, the rest of the party bug free, and I am consistently the only person who gets bitten. 5 times out of 6 it swells out of control, and we head down the IV fluid, steroids and anti histamines route. I went to see my PCP and he asked why I was not using my Epipen. Well, mainly because I thought these were to be used in the ‘we have 5 seconds between life and death’ type situations, not my own body’s lackadaisical ‘well… I’ll swell up big really quick, and make you look all red and sunburned and itch like crazy, but then I’ll just hang around in this annoying state for some 24-48 hours, slowly the swelling… You can go take some anti histamine shots, but I won’t respond… I will, however, probably let it spread to other parts of your body… might not though…but eventually you’ll probably lose enough fluid to go into shock … depends on how much effort I make…”.

I am sure we all remember that my doctor warned me that if I wait until the 5-sec life or death moment, it may be a little late. Which was a wise point.

So, I got bitten on Saturday, but what ever was in David and Beth’s yard clearly didn’t trouble my old histamine receptors. Then I got bitten on Sunday on a hike (no, NO ONE else got bitten either time). I watched the area go bright red and start to quickly swell. I still hesitated, yes I did! I don’t know, fear of the unknown I guess. Using an epipen seemed so… dramatic somehow.

But… I am writing this in case anyone else is in the same situation. I jabbed it into my leg… none of the other hikers even noticed. I had a brief (and intense) sweat -lovely- and boom: zero reaction. All redness, all swelling, most itch just gone. Instantly.

Way less drama and fuss than the other option. So, people, anyone googling for allergy advice and unsure about using the epipen: use it. It is about as difficult as taking a Benadryl. I had almost no side effects. I understand that the more extreme your reaction, the less the side effects, but still – even if you were not having a reaction I am pretty sure you would have a fairly minor effect of racing heart and suchlike. I finished my hike and have been troubled no more.

Good times.

My allergy story (thus far)

I was in two minds whether to write this, because I normally like non moany posts about frivolous topics like dieting and exercise and naughty pets and baking. Occasionally, I *might* touch on some Science. Occasionally. But having spent about 3 hours trawling the net readings people’s stories, and being enormously helped by them, I thought I ought to share mine.

I was a sort of allergic-response kid. Many things would bring me out in an itchy rash: pine needles, sun, sand, fake whipped cream, grass, blah blah blah. It required nothing more than an occasional piriton (chlorphenamine maleate) – rarely even that. It didn’t stop me doing anything, except occasionally, and rather conveniently high school sports lessons (me? Roll around in the grass to get out of it? Scratch my arms for no reason so they came up in a rash that would last exactly 2 sports periods? Why yes. Yes I would).

Then, one day in my early-20s I was up a mountain in Romania and got some sort of sting. It blew up, itched like mad, but I ignored it. I had kids to teach dammit! Over the next 12-24 hours, it all got worse and worse: the welt got bigger, spread to other welts and my breathing got harder and harder and I coughed more and more. Until I blacked out. I got to the Dr, she infused me with liquid anti-histamines and steroids (shots and IVs), replacement IV fluids and told me to take it easy. It was terrifying. We were a long way from a hospital and the facilities were limited. My tourniquet was a broken hair band… my IV stand a scared pupil. But, it was 100% clean, new needles and all, and I was better… for about 24 hours, when it came back, so she repeated the process. And repeated it again. Until she was worried my veins would collapse and sent out for medications that arrived up the mountain the next day.  Kudos for good care in a remote part of a challenged country: This did keep a lid on it. And eventually my fear about it dissipated, and by the time I got home to the UK all tanned and jolly and full of Romanian Pizza, I had all but forgotten about it. I never followed it up, and wasn’t bothered by it for about 5 years.

Then I was in my mid- 20s when I was in the shower one morning and noticed few red, itchy welts on my forearm. “Odd”, I thought. I meant to take an anti-histamine but forgot. However, it was gone by lunch (maybe sooner) and I forgot about it until the next day when it arrived a few mins earlier, covered a larger area and stayed about an hour later. But again, it disappeared completely. This happened repeatedly over 10 days, starting earlier and earlier and staying longer and longer, and getting bigger and bigger welts, until it was really quite debilitating, as I couldn’t sleep. I should have seen a Dr, true, but I have seen them for allergies before and not had much joy.

Lovely hue of red my whole skin turned from the inflammation. Like a giant tomato 🙂

Eventually, when it was full body, and the welts were getting bigger and bigger, I made a routine Drs appointment for 3 days time. 2 days later… things did not go so well.

I was at a friend’s house for dinner, and the rash was all over my face, neck, everything. Everything was swollen and I felt RUBBISH. His mother offered me a sleeping pill + anti histamine pill, but she couldn’t find them and I didn’t want to make her drive all the way to a 24h pharmacy. You will soon see why this was the Best. Move. Of. My. Life. When we got home, I looked like this:

Also a delicious look. Especially the splotches on my face 🙂

and can felt what I have only (very accurately) heard of as an ‘impending sense of doom’. I didn’t care that is was after midnight and we didn’t have a car. All I know was that night bus or not, we had to get to ER now. In fact, the night bus would be too slow. We had to get a taxi.

By the time I arrived at hospital I was fading fast. They took my blood pressure and my oedema had gotten so bad, I had lost enough fluid to be dropping my blood pressure and in a serious danger zone. Luckily, one IV steroid shot, 2 bags of IV fluid (phew, talk about wanting to HURL) and 1 piriton shot later I was OK. I was sent home with steroids (on a schedule), lots of piriton (to take ‘like tic-tacs’) and the knowledge that had a taken a sleeping pill, given my slow descent into unconsciousness I probably would not have woken up. Lovely.

And all was sort of OK. The allergy bubbled under all summer.. I was on and off steroids and in and out of ER. Eventually I tried a low histamine diet, emoving all the allergens from my house (dust, flees everything) and fexofendadine (recently re-released in the UK. Allegra to US peeps) and that combo + regualr low level steroids kept me out of hospital. No allergy panel could fix it… everyone was at a loss. Then one day (while on holiday in Greece actually) I realised that it has just cleared up. Gone. And I didn’t see it again.

Bad hair? Check. Bad sunglasses? Check. Rash? Nay! Just the remnants 🙂

Until my 30s (ouch). Actually, I realise now that is only a couple of years later. I moved to Alabama and was fine for over 2 years. I got one bite (one in a long line)… and it blew up. I got a Benadryl shot, felt like rubbish, but thought no more of it, until I realised that breathing was not quite the ‘given’ it had been that morning. Yup, off to hospital and back on the anti histamine / steroid rounds. Tough break. And that has been my summer of 2011… get bitten, watch it swell up to bigger than my hand span, watch the swelling spread to legs… back… face (ick!)… sometimes have trouble breathing, sometimes watch my blood pressure fall. Take lots of steroids, take lots of anti histamines… get better, for about 2-3 weeks.

So… I thought I would share my story. I don’t know why. Because, I guess, googling other people going through this helped me in a Benadryl induced haze. Because sometimes when modern medicine has no answer it is nice to know you are not alone, and not making it up (I still half think I am being a drama queen, and hence am not very good at acting upon the problem and getting to hospital).

And the good news? My awesome PCP Dr. Kynerd came up with a plan to get off this steroid cycle: as soon as I am bitten, I use my epipen. No question. I thought it was dramatic, but he pointed out that 5/6 bites have landed me in hospital and the other one still had to be remedied with steroids. He said the time had come to go preventative, not curative and epipen when I am bitten. I said that I thought epipens were just for anapylaxis, but he said that I was getting closer and closer to that, and soon it would be too late (!) It would stop any reaction in its tracks, even hives and odema so must be done. So – if it helps anyone out there take to your PCP / GP about trying it. It might work.

In other good news, it also doesn’t really affect my life. I still hike, bike, run, work, chill have fun, love life 🙂 I lose a day or two of work here and there (but I also getting more and more up to date with Gossip Girl) because I feel so lousy on the drugs, and man… am I swelling up on the steroids. But, if you are going through this, or your child is, and you are scared: don’t be 🙂 And don’t think you are making a fuss about nothing, just react and deal with it and you’ll be fine 🙂

Stay well 🙂

Ahhhh... Greece. A little sunburn to hide the rash on my face 🙂