Month: April 2017

Being a parent of any child can be both physically and emotionally draining at times. I find myself faced with so many tough decisions and battle with myself all the time about what to do for the best, questioning every decision I make.

As we near the end of our 14 day IV admission (only 2 sleeps left, but who’s counting) I’m left mulling over yet another gut wrenching decision about Chester and his care.

During this recent admission the Doctors have struggled to get Chester’s antibiotics in because his long line and cannulas (all 5 of them up to now and keeping everything crossed his next dose goes in) have failed, there are a number of reasons as to why this has happened; firstly his veins are still very small and are not great for accessing. The antibiotics are harsh and can also cause damage to the veins and the fact he is so active, he could quite easily have knocked the cannula out of position. The majority have tissued; Which is where the fluid being pumped in is no longer in his vein but is goin into the tissue around it and which I’ve been told is quite painful.

Each cannula change causes Chester so much stress and it is frankly getting traumatic for him. Walking him to the treatment room I feel his body almost instantly tense up because he knows where he is going and he knows what is about to happen.

I have to sit on a chair with him straddled on my lap and he fights so hard I find myself squeezing him with all my strength to make sure he keeps still to try and minimise his movement which aids the Doctor in getting a line in with the least attempts possible.

Each time leaves him a sweaty salty mess and following each one he pushes me away, the look on his face is heartbreaking and all the while I’m thinking that I am supposed to be able to protect him from all this pain, but I can’t, and I know that he needs these antibiotics and for them he needs this line in, but it doesn’t stop me feeling immensely guilty about holding him down.

I know that for him, being so young it’s soon forgotten, well, until the next cannula change but it still weighs heavily on my mind.

As a mother I should be able to protect my children and keep them safe, it’s in the job description and it’s just so devastating that in order for me to keep him safe I have to put him through physical pain and distress.

When discussing his care with the CF team, the topic of a ‘Porta-Cath’ or a ‘Port’ came up.  A portacath is a small stainless steel or titanium chamber filled with a rubbery membrane that closes over itself, which is placed under the skin on the chest.

A specially made needle called a gripper needle, is inserted through the skin into the portacath so that treatment can be given through it. The portacath is attached to a rubbery tube that sits in one of the large veins leading to the heart. You cannot see the port only a bump in the skin and in Chester’s case this would be inserted under a general anaesthetic.

There are a number of benefits of having a port, getting stuck with needles a lot less is the big one, the area can be numbed and in some cases when fitting the port the surgeon can remove the nerve endings in the skin so it’s a pain free access point.

It would basically mean no more cannulas for Chester and much easier access while the port is in situ. It’s not permanent and can be removed but the plus is it can last several years.

Now, this was not what I wanted to hear, it has been mentioned before but I was always adamant that I didn’t want Chester having one. I guess for purely selfish reasons, the way I see it at the moment Chester looks no different to any other child, yes he has a few scars but they’re hardly noticeable now unless you’re really looking; but other than this he looks no different to any other child.

Give him a port and he instantly has something different, something physical and noticeable and I didn’t want that. I don’t want to take him swimming and have people staring and talking about it. I don’t want to have to cover him up on holiday so people don’t see it. I just want him to look the same as others.

Plus on top of the way it looks, there is no real guarantee that he will require IVs again anytime soon, he may not need them for years and I would have put him through this procedure for no reason.

As this admission has gone on I have seen the distress and anxiety these cannula changes have caused and I think I have to put my feelings about the port to one side and think about what’s right for him.

It’s such a big decision and I know that neither the decision to have one or not is wrong but it doesn’t make it any easier, I have to do what is right for him and in all honesty I think the port is the right thing for him at this moment in time.

I know that he won’t care about it because he’s too young to understand but I worry what others will say, when really none of that matters at all.

We will be meeting with a surgeon to discuss it and there will further talks with the team but it looks like it may go ahead.

Another gut wrenchingly tough decision which means putting Chester through another surgery causing him more pain, but as always with the best intentions and the fact that it will be much better for him in the long run and it may just mean he’s a little more willing to come back to hospital than this for his IV.

Trying to entertain a toddler in a hospital ward is a nightmare, even more so when another patient with Cystic Fibrosis is admitted and you are confined to your room for most of the day. Time in the playroom is split using a rota system and you can almost guarantee your child will be asleep when it’s his turn to escape to the toy zone.

In the event you manage to make it to the playroom you daren’t risk taking your eyes off your child who is poised in striking distance of the little boy who just stole the Thomas the tank book from him. Watching helplessly as you are too far away to stop the mighty splinted and bandaged boxing glove hand from striking it’s intended target, the Thomas the tank book thief. If you aren’t dealing with that you’re being asked the same question “What’s he in for?” I hate this, I find it rude, how about mind your own business.

Admissions mean getting rinsed of cash firstly so that Chester can watch frozen and other Disney films such as Inside Out whilst having physio (anything for an easy life and sometimes the only things he will lay still for) and those movies don’t come cheap at £15 for 3 days! Secondly paying expensive parking fees, even with a concession it’s a fair bit and lastly but most the most important outlay, copious amounts of coffee! Let’s face it coffee shops in hospitals are never cheap!

I find I have to kiss goodbye to any kind of routine, and being a military mum this does not come easy, we, or should I say I, do not do well without my routine and timings. I run a tightly organised and scheduled ship but that all goes wrong the minute we come in.

Trying to get Chester to eat can prove difficult, he does not appreciate the culinary delights served up in hospital so I often find myself smuggling in McDonalds like I’m trying to smuggle a shank into prison, all just to get those calories into him.

It’s also hard to get Chester to sleep during the day, and if he doesn’t nap he’s a real ratbag, you can pretty much guarantee the minute he finally gives in and nods off someone wants to come in and do his blood pressure or take his temperature, it’s typical. There’s no worse sound than hearing the ward round nearing your room when he’s just fallen asleep, especially when I am so excited that I may get to drink my cup of coffee while it’s still warm.

My days are spent comforting Chester as he screams everytime he sees the cannula in his hand, running after him as he’s running away from nurses and physiotherapists and clinging onto him with all my strength as he practices his crocodile death roll to aid in his escape from my clutches.

Boredom kicks in and fatigue follows, and I can’t even get excited that it will soon be bedtime because not only is the pull out guest bed with the paper thin mattress and plastic cover really unappealing, knowing that the nurse with the flashlight resembling a lighthouse is on duty and will be in soon to do his IVs in the process blinding Chester and waking him up.

Getting out for “day release” as we call it is a godsend, 14 days is a long time to be trapped in hospital so luckily when Chester is well and in for planned IVs we can escape for a few hours in between, which allows for a little bit of family time and normality at a time when everything is less than normal.

I have had to get used to this way of life as has the rest of the family and although it’s tough I am always amazed at how resilient Chester and Oakley are and how well they cope with the disruption.

I am also amazed and humbled at the kindness of others who make it possible for special holidays like Christmas and Easter to be celebrated in hospital.

 

Today was day one of fourteen of our latest two week admission for IV antibiotics to treat Chester’s Pseudomonas. It always sucks, it reminds me of how crap Cystic Fibrosis can be. I am always full of mixed emotions, knowing it is for the right reasons that he gets rid of the bugs but also hard knowing what he has to go through and what I am expected to put him through for that end result.

With a theatre slot booked at 1400hrs this meant getting Chester up early and stuffing him with a huge breakfast before the 0700hrs nil by mouth cut off point.

We arrived at the hospital looking like we are moving in with our own bedding and umpteen bags, Chester isn’t one for travelling light. It can never be a good thing when you’re walking to your room and all the staff are saying hello to Chester and commenting on how much he’s grown since his last admission (only 5 months ago).

We patiently waited for the usual admission routine, weigh in, height, medication list, gown issue and then a visit from our Consultant.

Like the last admission the plan was for Chester to have a long line put in to save cannula changes which is the kinder option. For those unfamiliar with a long line it is a fine plastic tube about 10-15cm long that is threaded into one of the smaller veins, usually in his arm until it reaches a point where the veins are much larger, usually just outside the heart. They don’t always last the full 14 days but last time it did so fingers crossed we have the same luck this time.

When the time to take him up to theatre came, he was rolling around in his cot like a little drunk after being given something to chill him out, despite that he still managed a smile and sat there like Lord muck as he was pushed through the hospital corridors.

Once in theatre it hits you, even though it’s a fairly minor and basic procedure it doesn’t make it any easier handing him over unconscious to a complete stranger. Watching him go under never gets any easier.

Then there’s the silent walk back to his room, seeing the big empty space where his cot should be. The clock watching starts, minutes seem to go backwards and the hour and a bit we waited for that call to say he’s out drags like a seals arse.

But finally we got that call. I literally speed walked to recovery to see my baby snoring in his cot, his chest slightly rattling and arm bandaged heavily to stop him getting to the line. When I see him laid there like that, I have that awful feeling of guilt, I hate that I’ve had to put him through this again.

Safely back in his room I sit next to his cot and watch him sleeping, I could watch him for hours, he looks so peaceful and so well. To look at him you wouldn’t think he was any different to any other toddler.

I start to get angry thinking about CF and what it’s doing to him, my only solace is that I know how incredibly brave and strong Chester is. He is truly remarkable smiling through it all, no matter what comes his way, he keeps me where I need to be, reminding me that no matter what CF throws at him he’s more than capable of dealing with it.

When CF graced us with it’s presence there were lots of things we had to change in order to accommodate it; however, my love of travel was not something I was prepared to compromise on. Don’t get me wrong it’s not as straightforward as it was before CF came along, but it’s not been impossible.

Having travelled a fair bit with my boys, both abroad and also road tripping within the UK, I thought I would share some of the tips I have picked up along the way.  It really doesn’t have to be daunting.

1. The first and most important thing for me is insurance, mainly because CF can be so unpredictable. I suggest always getting a quote before booking! Last thing you need is to get your holiday booked and then get an extortionate quote for insurance that you can’t afford. Also worthy to note that sometimes an annual policy works out cheaper than single trip depending on your plan for the year.

2. Once you are booked you’ll need to kiss goodbye to travelling light. All meds and nebulisers should be carried as hand luggage. My cute hand luggage suitcase now resembles a pharmacy and I travel with that many bags I swear the entire Imelda Marcos shoe collection could fit in the bags we take.

3. Make sure you know the area you are going to. I personally like to carry out a full military recce of the area I am travelling to, googling hospitals and local respiratory centres and I often find myself hunting through the patient comments like I’m reading a review on trip advisor.

4. It is also beneficial to know the place you are going to be staying at, whether it be a hotel or an apartment, a fridge is a must for those still on liquid Meds and kettle pretty important, well for us on advance formula, it’s also good to view any potential hazards such as jacuzzi’s or sandpits. A browse through trip advisor never does any harm to check cleanliness.

5. When travelling abroad with a nappy wearing little one, make room in your baggage for nappies, this will save you getting rinsed of cash in the local supermarket especially with the amount a CFer goes through! I remember once paying 23€ for a pack of nappies.

6. If flying make sure you have your fit to fly from your CF team with all the meds listed and always allow plenty of time at security. It can take a while because they often test all the meds. I have got used to the people behind in the queue impatiently tapping their feet while I take endless bottles of Meds out of the case.

7. Don’t be afraid to ask for assistance at the airport. I ask to be last on and first off the plane to limit the time Chester is confined in the plane, this is always great when your plane arrives at the arrivals terminal and the pilot tells everyone to remain seated to allow you to disembark; cue the looks of death.

8. Don’t forget different countries offer up different complications and risks and I would always speak to my CF team before choosing a holiday destination. Some countries have more risks than are worth taking when it comes to your child’s health, specific bacteria that can cause infection for example. The CF trust website provides details of places to avoid.

9. These things aside the most important thing about travelling is to have fun, take in the culture, relax and make memories and don’t let CF get in your way.