Musings Expanded

I promise I will get round to the post on the lovely week we had last week!

I have had loads of bits and pieces spinning around in my head about the trachy and Alfie and all it has meant to us. When it first happened we thought it was the worst thing imaginable and we were never going to sleep again or go out and about. As it turns out although I still hate it and what it means to Alfie in many ways it has been a blessing. It has meant that Alfie's wonderful loving father has been able to watch his beautiful son grow and develop (albeit from the dining room office station he now has!). I have had my partner by my side for many more months than so many people. It has made us so much stronger.

Knowing that we were only having one child I felt the early months were stolen from us by the hospital stay and that we would never get that back. Everybody told me that in the grand scheme of things it wasn't important. I felt such resentment when they said this, those that had not lost this time and would do it it again with other babies. Now I look at my peachy boy and I see that they are right. I have lost nothing, it is all part of Alfie's life and therefore so important.

We have become so strong (most of the time!) The last week in the hospital when the nurses made us live in Alfie's room and do all his cares seemed so scary at first and I resented them for insisting on doing it but am now so glad they did. We then got used to it and shut the door on the rest of the world and took care of our son. We had been doing all his feeds etc. on our own anyway but now we were bathing him and tape changing him without nurses in the room. We knew they were there if we yelled but we had our boy back. He was also taken off the monitors so we used our senses and our eyes to tell if there was anything wrong rather than unreliable equipment. The only thing we had to still use them for was meds and to get his food from the fridge, health and safety regs as always. The nurses 'babysat' for us on a couple of nights so we could go to our room to eat a meal and mum did a couple of stints so we could go out into Oxford for lunch and shopping. Such a treat after weeks of only seeing the four walls of the hospital. Mind you it was somewhat overwhelming, all those people and no little person with us.

They kindly got us a bed in the room as well as the sofa bed thing so we could sleep together. I have to say the first nights we hardly slept but we did it on our own. We were both exhausted after the trauma of the few weeks we had spent in hospital but didn't dare both sleep to start with. We got up and suctioned him and fed him and changed him all with the door firmly closed. All this seems so normal to most parents but we were starting from scratch, trying to get to know our baby again. The mini retraining session that ward made us do really helped at home. We did sleep in the end but we had to relearn how to pick up on the little sounds and signs that warn you of an awakening. This is bearing in mind he can't cry so you have to be even more attuned to these little sounds. We had unlearnt picking him up and cuddling him in the same way for fear of blocking the tube or knocking it. Cuddles were draped across your lap not snuggled in. We really did have a baptism of fire as he had his first cold with a trachy that week and his grotty tummy because of the antibiotics. The cold meant extra nasty secretions, plugs of grot that block the trachy and thicken it up. (Sorry if any of this is repetitive, bear with me!)I have to say we now all sleep really well just getting up a couple of times a night when you hear that tell tale noise in the tube that says there is a problem on the way.

At first the lack of nursing care at home seemed iniquitous, 9-5 at the end of the phone and the odd weekly pop in to drop off supplies, spare trachys, suction catheters, tapes to hold the tube in and all the cleaning and dressing bits. Bearing in mind that these supplies ostensibly help keep him alive, we can't even totally rely on them to get those for us. They have never fully let us down but we felt we have had to nag on a regular basis. They wouldn't even look at his granuloma! We were also offered continuing care (3 hours a week) which took until this month to come through, we thought this would be a godsend but in the end turned it down! He is my baby and I will care for him, he has a day a week with my mum and Kate baby sitting so Stuart and I go out like any normal parents (as normal as we will ever be), he just needs 2 babysitters that know CPR :-).

The other thing we learnt was not to do too much research as everywhere has its own way of dealing with trachys. The level and type of care, the type of support and advice, the equipment et al. so I stay away from the computer (kind of) and don't compare notes, too frustrating. Also you have to listen to the useful little snippets and you have to filter things. With the monitors it took a long time to realise that they can measure accurately through one tiny pad the oxygen levels in the whole baby but not that he is moving or even in one case that it is now attached to a babies giraffe! The monitors only really work properly when the baby is immobile. The other thing is that 'normal' babies aren't attached to monitors and therefore you don't see that they probably desaturate when they are crying, i.e. only breathing the oxygen out. One of the older more experienced nurses told me this and it made such a difference. Also when you suction a baby you are removing a lot of the air in their lungs and so it goes the oxygen particularly if you are have a hard time with thick secretions. This is why they say to suction for no more than 6-10 seconds at a time and to rest in between. Obviously with a blockage you can't stop until it is gone, but the good thing about no monitors you don't panic so much and rely on yours eyes and ears to see if they are OK. It is all such a steep learning curve and in so many ways we have to be grateful with Alfie that it 'only' the trachy and no other issues.

In so many ways I am happy that we have so little support at home, it means we have our son to ourselves. We rely on the great support that the team at Oxford give us, on hand via the phone, email and if we go up with any troubles. It is hard in so many ways but he is an easy baby (for now) and the end is in sight. Another little set back in the shape of a tummy upset and teething. I have to say that Alfie is also very bright but quite lazy. It is easy to breathe through the tube and not via his nose. if you catch him unawares he does really well but the minute he susses you out he stops breathing until you stop occluding, little love!

Although I am used to the trachy now I have to say I can't wait for it to go, hopefully before the worst of the winter. The cold air down the tube and infections being 2 big problems. We have all had out flu jabs now so that will help I hope. We won't rush anything as we want him to be as safe as possible but we have hit a bit of a disorientating state of limbo for now, half way there but unable to jump that final hurdle. We will all get there, just need patience which I am not renowned for.


He is currently laying on his mat in all his chubby nakedness after yet another yucky nappy (the joys of motherhood) grinning at me whilst experimenting with the odd new sound via his leak and probably thinking of his next feed. He is also trying his latest trick of lifting his legs and slamming them down as hard as he can. This is hard, he has caught my toes before now and it blooming well hurts! Tough lad that he is. We are awaiting his Grams to babysit us both as Dad has gone into the office today.
A little while later and Grams and I have tape changed and he is in the travel cot having been asleep but now grinning madly and swinging it back and forth. Legs lifting in the air and farting for England he and we are quite happy.

The other big thing about the Grams babysitting stint is me having bathroom privileges! Sounds daft I know but once a week I get to try and relax in a long shower or bath and wash my hair and paint my toenails, pluck and primp and preen. So I now have clean hair, two eyebrows rather than one, painted toe nails, fingernails filed (very important to keep them short in order to change his tapes safely and put creams on)legs etc. shaved or plucked with the evil machine. As I say this sounds rather silly to need special time for. Its the noise and distraction that are the problem, my hair takes more than 20 minutes to wash and I can't hear him in that time and you can't see him like you can in the bath. Mind you I try and relax and to enjoy the 'me' time, but I can't switch off. I always have one ear on the door in case there is a problem.

He is also a long way to sitting on his own, the weight of his chubby bum holding him down no doubt. Again sorry for any repetition and I will be back shortly with the big week, pics and all.

Yet another scare!

Well last night he did it again! I was giving him his late night feed ready for bed (sensing a pattern here?) and he startled, then started to cry and cry and cry all the while only taking breath in. He went deep red and then onto purple and almost black and went rigid and disorientated. I had already checked his tube which was fine. I couldn't do anything to make him breath, I cleared his mouth, blew in his face (nurses advice for breath holding) and finally called for his dad when I reached full panic mode.



I couldn't believe he had done it again in the same week. By the time his dad got downstairs, almost head first he was ok again and ready to finish his bottle! I was terrified, I rang and left a message for Dr Hull and then emailed him to see if it was possible to meet him when we came in for Alfies renal scan today to discuss what had happened. He mailed me back as soon as he got in and said that I had done everything right and that it would appear to be his breath holding tendancy rearing its head again. (google 'blue baby breath holding'). I was so worried that it would put his decannulation on hold but apparently again it is nothing to do with the trachy and he is quite happy to go ahead with the plan. We of course don't want it to come out too soon and make things worse.

Yet again Alfie had proven to be quite unusual in that he can occlude even with the tube.

By the way, just to clarify he has to go for regular renal scan to check for tumors on his kidneys, a potential side effect of the Beckwiths. He will have to have these scans every 3-4 months until he is 7 years old. We also have to palpate his belly to make sure nothing is apparent in there.

So we have had the 'big blue' that landed him in PICU, a number of little ones, the trachy, the nights of suctioning and panicking that you have blocked the tube with solid secretions where you have dragged them up from the end and us having to make judgement calls at 4am on our own about how to manage it potentially blocking again. whether just to keep suctioning or use saline or to change the tube. Then he chokes in the cafe and has the crash team out again and to top it off he has reatarted the breath holding to put the wind up us. If nothing else he is making us resourceful!

I seem to have put alot in in one go, but with everything else I don't have huge amount of time to update the blog so when I do you get it all in one hit! I still have to post all the other things we have been up to this week.

Decannulation

We have a date for a dry run to taking the tube out. He will be taken in to the ward and they will cover the tube and observe what happens. They will do this both awake and possibly distressed as this is a time he had problems. Then they will do a sleep study to see how he gets on. If he does well they will take tube out.

In the mean time we have to block the tube every so often to test the waters. I have to say this is having limited success so far.

If it doesn't work this time we will revisit the situation in 3 months.

Please keep your fingers crossed for us all.

Good news, bad news, good news!

The Beast realaxing with his baby.

This post was supposed to just be able to give good news from our appointment in Oxford yesterday.

We went to see Dr Hull who is the respiratory paediatric consultant that was involved with giving Alfie his trachy, at one stage he was known as 'he who cannot be named' after one particularly horrible day. Then we realised he must have been having a bad day too (not an excuse) and since then he has been really good. He hadn't seen The Beast since just after we left the hospital to go home and was impressed with his size (isn't everyone?)! We were hoping it was going to be a positive meeting, but not anywhere near to the extent it was.

We told him about the fact that Alfie wasn't having the blue episodes anymore and that his large tongue looks normal now. Also the key point that turned out to be his ability to eat! The fact that he has taken to solids with no problems from his tongue was a huge step forward. So much to our surprise he started talking decanulation (removing the tube).

Alfie doing what he does best.

This was to start with us downsizing the tube to give him more of a leak so he can start trying to breath through his nose again and then us blocking it off for a very short time periodically to see what happened. If this goes well he will then go in for a sleep study with the tube blocked and then possibly removed. We knew all of this as a protocol but had no idea of timescales. Then the big one, we were to downsize the tube at his next tube change!!!!! So he could be without the trachy before Christmas if it goes according to plan.

The gorgeous neck I may see naked soon for the first time in months.

This was amazing news and we were both thrilled to bits and headed down to the cafe to give him his fruit and juice and have a coffee to celebrate. Since he had the style of his trachy changed a few weeks ago he has had a lot more secretions that were beginning to make him cough a lot and really distress him. The Kapitex tube had an outside diameter of 5mm but the Shiley had one of 5.2mm and amazingly that was enough to cause huge problems. I do have to say though that the Shiley was much better now in many other ways.

So Stuart started to give him juice then the fruit and he started coughing really badly so we suctioned him as we have been having to do so often recently particularly when he is eating. He then started crying and as I watched he started to change colour. He was going blue and couldn't catch his breath.

Holding him I could see his colour changing by the second, I could feel the panic rising as I was thinking, no, not now things seem to be going so well. My brain finally kicked back in as I tried to clear what seemed to be the problem.

Stuart tried to clear his mouth but nothing happened, he just kept going more blue. All I could focus on was that there were patches of red on his face so some oxygen was getting through although very little. Next came suctioning again and that had no effect and it dawned on us that we were going to have to do an emergency tube change. So out came the little kit that we have obsessively carried with us since he had the trachy put in. It contains a 3.5 tube (his normal size), a 3.0 tube in case you can't get that in, a suction catheter to use as a tube if you have to, a pair a scissors to cut the tapes off, a syringe and saline to wash it out if you need to and an adapter to be able to administer breaths if necessary.

Stuart managed to get tapes open and I, who cannot do the normal tube change and close my eyes when Stuart bravely does it, took out his tube and put in the new one, this didn't work so I changed it again (afterwards I wasn't sure why as I had no problem inserting the 3.5). When I did this I could feel air moving in and out but his colour wasn't coming back up so something was still causing a blockage (in retrospect it could have been his sheer panic). I then tried clearing his mouth again while Stuart held onto him for dear life. By this time somebody was trying to get help and Naomi a physio who happened to treat him in PICU came past on her way out to go home. She took over suctioning while I secured the tapes and a crash call went out again. The poor girl, it was the second situation she had been involved in like that that day! After we realised we weren't going to lose him (which felt like a very distinct possibility) all I could think was this was adding months to the trachy and that he would get kept in and we wouldn't be allowed home.

The strangest thing throughout all of this was the lack of any big event to indicate that the problem had cleared. Whenever you see someone choking on TV there is always a monumental explosion of air as the blockage.....usually an olive....why is that?? clears and the person starts to breath again. As far as I can recall in Alfie's case he just seemed to be ok'ish and start to breath regularly again.

The team were very reassuring and praised our quick thinking and the way we dealt with the emergency tube change. By the time they had all arrived in the coffee shop Alfie was sat on Stuarts lap looking a little pale but grinning like a loon at all these people there just to see him! His father however was sat shaking like a leaf and his mother was obsessively tidying up the mess we had made (it's a control thing!). They put a bit of oxygen on him but he didn't really need it and then they said the dreaded words, 'we will take you up to the ward for observation'! I panicked but they promised we wouldn't be in more than a couple of hours. While we were sat with him on yet another ward Dr Hull walked past looking quizzical, on his way home. We explained what had happened and that it had never happened before so he said to go home. He also noticed that Alfie already sounded clearer with the smaller tube which was reassuring.

The grin bestowed on the crash team.

The general conclusion from all the doctors was that is was unfortunate but a standard (if there is any such thing) choking incident. It felt anything but standard to us, we thought, again that we were going to lose our little boy. It seemed to have nothing to do with his condition or the trachy, apart from that making him cough so much he choked. It did test our CPR skills and our nerve. It was almost as though he thought, I have done the blue bit to Mummy so I will try Daddy out for size! It was truly terrifying to see and experience and in many ways thank goodness he did it in the hospital if only for the reassurance they gave us.

Next time he chooses to share his experiences, I'll be having a quiet word. Well be fair, only his Mum gave birth, so I'm more than happy being an experience or two down. Flipancy aside it was a terrifying experience that I hope never to go through again, however if the worst does happen I know that we can cope.

The big positive that came out of it that he is downsized! And coping well and needing far less suctioning too. The big change is that he can scream (in his own particular but very audible way). We are still very shaken and I am certainly having moments of sheer panic and seeing blue where it isn't. Stuart valiantly 'went to work' when all he wanted to do was protect me and his boy after nearly losing him again and I do hope that he is appreciated in the circumstances as much as he appreciates what they have done for him.

The hand that holds my heart in its palm.

So in conclusion he is fine and we may be looking at weeks rather than months to have our little man whole again. So exciting but now doubly terrifying. We keep being tested and I hope are passing with flying colours. But please whomever and whatever controls these things, enough now!

My boys the day after our big trauma.

Love

I don't want this to be all about Alfie's medical condition although it is, through necessity a huge part of our lives. We can't avoid it as we have to give him the fullest care in our powers to keep him safe.

It is about a very special, much loved and very much wanted little (OK not so little, really quite large) boy. The love that I feel when he smiles that gummy grin at me is indescribable, it almost hurts. This feeling was slow coming, none of the huge wave all the books say you feel at birth. There was a deep recognition when I heard him cry for the first time, it was MY baby but not that all encompassing thing I was led to believe.

The Bump that became the Beast!

It does have to be said that this could have been the 20 hours of labour, the excruciating pain, the huge number of times I threw up, even when they were lifting him out of me, the numbness (literally from the spinal block), the concern that he had his own birthday and not sharing it with my mum! I know, I always think of the oh so important things at crucial times!

It slowly started to dawn on me how important this little being was to me. It was so odd, all this time to get him and the delays through one thing or another and my great desire to have a baby and his dad only really going through it all for me and he gets the big rush and I get the slow trickle. Not that I resented this, he deserved it and loves our boy more than life itself and I love him all the more for it.

Coming home.

We have been together for nearly twenty years and I think it worried both of us what having a child would do to us as a couple, we had been so focused on the getting pregnant that we didn't really consider that. It was only when we started the IVF that I started to get a bit of a reality check. By this stage Mr Reluctant was so positive and I was full of negativity, totally convinced it was not going to work and if it did what would i do with a baby and would be a hopeless mother. We were going to travel the world when it didn't work (now we will do it with the best piece of luggage in the world), had it all planned I was that sure it would be a failure.

We were due to test on the Saturday, but on the Tuesday I found a test in the cupboard. it had come free with some ovulation tests. I didn't even know it was there, honestly! It just yelled at me all day and in the end i had to give in and there were two lines! On that one and the ...... more I did after because I still couldn't trust the result. I didn't feel the excitement I had the first time, before the miscarriage. We both had to hold back on that, for Stuart until the 20 week scan and for me, well I don't think I ever did. There was so much fear until then and then the pain kicked in.

There were perfect moments it has to be said, Christmas night when Stuart felt our future rugby player for the first time, oh boy could he kick (and still was all the way though labour!). Then the less than perfect, I even have to confess disappointment when we found out it was a boy (that has changed since, I couldn't be happier than with my little boy).

Nothing really went according to the fictional plan I had in my head. It was not going to work, then it was going to be exciting, then a good scan, then it was a girl (thank goodness not, imagine me with a teenage girl!), the nausea was going to stop, it did finally on about the day the agonising pain in my ribs started! I was going to get hugely fat, so upset that one didn't work out :-). I was going to nap and sleep for England, instead of which I stopped sleeping at 20 weeks and found I don't do napping. we were going to have a last holiday in the sun but the pain meant I couldn't fly so Cornwall in the rain it was. I was going to be a complete wimp in labour and swear like a trouper. I was brave, not pain relief for 14 hours and not one naughty word passed my lips, I know miracles can happen!

Stuart was going to be a bit useless, but no even that didn't happen. He couldn't have been more supportive, he cooked all the meals as I felt too ill at the idea of cooking. He rubbed cream into my belly to ease the discomfort and stop stretch marks, he laid 2 floors and friends helped us decorate 3 rooms. He even (reluctantly) gave up on bike trips due to bad timing.

Motherhood was going to be so hard and I was never going to cope, instead thanks to my gorgeous little pumpkin I slept more after he was born and felt better than I had for ages. The worst bits were the over nights in hospital without Stuart at my side but after that it was wonderful. We had our moments, forgetting to make bottles and me loosing the plot thinking I was the worlds worst mother if I couldn't even manage that when Stuart could. Things settled down but then the awful time you have already read about kicked in.

My heroes.

That was when the full impact of how I felt about this little man and the big man that had helped me create him kicked in. The thought of loosing him was unbearable and now in all his plumpness his smile fills my heart and his cries, that that they are break it in two until I can whatever I can to fix it. He is beyond special, he has his wonderful dads laid back nature with just hint (maybe a little more than a hint) of my temper. He is so loved and cared for, he had people thinking of him and praying for and anything else that may work all over the world. I had no idea how much and how many people cared for him and about him and us.

Thank you all for caring about this miracle that is my son.

And Stuart, I couldn't love you more than I do and I pray that I never have to face the world without you at my side as you have always been. Now we have the third point to our triangle of life.

Perfection!

Getting ready for the day ahead.

This is how we start every day, obviously once the Beast has been fed and rested. We have it pretty much down pat now, all part of the daily routine along with bottles, washing etc.

Post bath, pre tapes.

The kit all laid out ready to go for a tape change.

Not quite what we envisaged using the coffee table for.

Alfie all laid out and ready to for a tape change!

Start of a hard day,

End of a hard day!

p.s. please feel free to post comments on any of our posts, it would be lovely to have feedback on here as well as your emails. Thank you Catherine for yours :-).

Back to work we go

Figured that a lot of the blogs about babies and children are naturally enough frequently penned by the Mums. So I thought I'd take the chance to redress the balance and give a Dad's eye view.


Sarah and I spent a lot of time putting off trying for a family, this was for a number of reasons, multiple redundancies meant that circumstance conspired against us so that it "wasn't the right time" a refrain that I'm sure many couples are familiar with. Also life was good with just the two of us and at the time I saw no reason to alter that balance.


If I'd have known quite how long it would take to achieve our little miracle then I may not have been quite so complacent for quite so long, but hey hindsight is a wonderful thing and who wants an easy life.....where's the fun in that.


“May you have the hindsight to know where you've been, The foresight to know where you are going, And the insight to know when you have gone too far” - Irish Blessing


Throughout the fertility treatment, Sarah's pregnancy and all the difficulties we've faced with Alfie's hospitalisation my boss has been brilliant and on the whole the company have been very generous too. I've been lucky enough to be able to be with both Alfie and Sarah for the entire nearly two months we were in hospital. Thanks Craig


So now I'm back at work, albeit working from home. This fortunate arrangement allows me to be available to help look after Alfie, be that tube changes, tape changes, suctioning and believe it or not..............even the odd dirty nappy!


I'll post more as things occur to me or as the urge takes me so please excuse the inevitably rambling nature of my posts....