Our New Addition

This afternoon, we returned from hospital complete with new G-tube and a bundle of "goodies" (enteral syringes, gauze and antibiotics mainly) . I would like to say we blazed in on a trail of glory, problems fixed and like two new revitalised people, but in reality we were both absolutely zonked and it showed as the afternoon dragged.

The infamous operation (placement of PEG, bronchoscopy and endoscopy) went pretty smoothly. After a minor hiccup with heating, we went up to theatre and I held a terrified Wriggles as she was given gas to send her to sleep. I thought I was prepared for seeing it, but only doors down from PICU I was completely out of my depth seeing her flop, so still and "asleep". Our kind nurse lead me out, tears streaming down my face with nightmares of PICU flashing through my head at high speed like we were there yesterday. My senses were on high alert and it felt like we had never left. Once Costa Coffee had helped calm me down, I sat by our bed and drew Wriggles some pictures to try and help explain her new wiggly worm (48 hours on and this is still not happening. How DO you explain to a tiny girl why her tummy has been perforated and hurts?) and just under an hour later was called to go up to recovery. My goodness, I couldn't get there quick enough! The poor mite was obviously in a fair amount of pain and very disoriented. As always, I have only high praise for the paediatric who were dealing with us; they let me pick her up straight away and rock her to try and make her feel better. Oceans away from having to argue about the benefits of kangaroo care!

Back on our ward, the first 24 hours were what I can only describe as rough. Wriggles barely left my lap apart from two occasions for me to go to the bathroom, and bedtime took hours to transfer her to the cot without her screaming. We had worked our way through a nice selection box of pain relief by now, both IV and through the tube which was now tolerating water feeds. She was still requiring oxygen and constant monitoring, so was a mass of wires. Over night (finally settled) she had her first milk feed at an excruciatingly low rate, which thankfully stayed down.

Thursday was better; with pain relief prescribed on the dot, she was not too bad. Her tube length had a snip as it was far too long for her  and I was ran through the basics of caring for it. Obviously still very sore and very much confined to the bed, the object of the day was slowly increasing milk feeds which were all tolerated. She even lunged at a Quaver and perked up when her baby friend from signing came to visit (with her mummy). Today, discharge day, was a little more trying. The PEG site was showing some signs of infection which have become more pronounced as the day has gone on, and the vast majority of what has gone IN had come back up OUT. Not the plan at all. I knew a G-Tube was not going to be a magic instant fix or reflux cure and that the first few days are bound to be full of teething trouble especially with an infection brewing, but it is so disheartening to see so soon and mop up. I am slowly coming to accept that there are no magic fixes or golden words or therapies or medications and that our road is a long one that no one can forecast, but accepting this is not easy at all and going to bed I felt very low, on both our behalves. Not for the first time, I thought how unfair it should be that some children experience so much so young, and also not for the first time, wondered how things might have been different if medical research and innovation had bought me a few more weeks of pregnancy to aid Wriggles' development.

The bronchoscopy has revealed no startling revelations thankfully, but has shown that Wriggles has a small jaw meaning that her bits and bobs are set further back than they should be. She had a larger than average mass of adenoid tissue and her epiglottis and larynx are a litte too near the airway for someone with known breathing problems. We are being booked in for just one more test, a sleep study, to determine if she presents with sleep apnoea as she is a noisy and restless sleeper and can be quite hyperactive in the day, with previous noting of poor growth. If this is positive, she may need more treatment in some form. The endoscopy noted a slight laxity between stomach and gullet, but nothing significant. Relief yet also a strange disappointment that there is nothing obvious that is "fix-able". 

I am nervous about the weekend. I would feel a lot more comfortable knowing that the community nursing team, gastro nurse and dieticians were on call, which of course they are not, but we have open access at the hospital if we need. I know we will get though, like everything, but in what state who knows. I trust things will get better and we will both be more at ease and more confident as the weeks progress, but right now I have incredibly mixed feelings about the new addition to our family and how we got to this point in the first place.

The Op

Today, Tuesday 28th August, we are going into hospital again. The PEG insertion: take 3. Third time, lucky right? It may well be put back again, but if all goes to plan then on Wednesday morning the surgery will take place and after that we will be kept in a minimum of 48 hours to check that the tube is working, Wriggles is as comfortable as can be and that the stoma site is healing well.

Thank you all so much for your ongoing support, incredibly kind comments and keeping us in your thoughts. Compared to so many, our experience is but a drop in the ocean though to us it feels huge. Knowing people, many of whom we will never meet to thank, are rooting for my beautiful girl really is such an amazing thing. I leave you with some pictures from our messy afternoon and hope to be back by the weekend on the next part of our little journey!

Much love, x

Stop Start

After a week of feeling on tenterhooks, this week draws to a close feeling a little....well I can't put my finger on it. Even without the scheduled PEG insertion, we had a full diary including a repeat video fluoroscopy and development review.

Monday afternoon, we trundled up to our favourite place (hospital) to have a review with the respiratory SHO to confirm whether or not the scheduled operation to insert a feeding tube and perform a respiratory and endoscopic review, would go ahead as planned. We had had no infections, no hiccups, and Wriggles was so full of beans since getting home she would not sit still for a minute. The consultant was delighted and flabbergasted at her immediate recovery as she tried to empty the nurses' trolley, and went off to tell the anaesthetist the good news. The anaesthetist had news of his own. And a mind of his own. He apologised but was not happy to go ahead as planned. Her chest may be (relatively) as clear as a bell and her energy levels enough for an Olympic team of athletes, but it had only been a week of no oxygen requirements and technically she could still be carrying the final dregs of infections. Sorry, but this week a PEG had to wait or he felt we would be having a reunion even if brief, with the staff on PICU on unpleasant terms. I don't regret his decision; I trust his skill and knowledge. It just felt a little deflating after mentally gearing up, packing a little hospital bag, trying to explain to Wriggles about nose-wiggly-worms and tummy-taps. 

It is now rescheduled for next week on the understanding that the whole thing may be cancelled again.

Tuesday morning, we had our first alarm-clock call since hospital for a repeat fluoroscopy. Wriggles had one last October which appeared clear, that dismantled plans laid 9 months previous for NG feeding prior to a PEG placement, that have now of course come up again and stayed. Barium, a radioactive substance, is added to fluids and food to show the swallow process in a moving X-Ray captured on film to be able to slow down and enlarge to get an accurate and in-depth picture. I packed a little tub of Quavers, a fromage frais and a bottle of milk. Wriggles had been nil by mouth for three weeks-surely this would be an exciting moment for her, albeit confusing? No. It was like the early days of her oral aversion again. She shrank away, clamped her mouth and cried in fear, confusion and revulsion. She held her arms out and shook her head. No amount of cajoling did anything. The girl was not drinking or eating. Apart from one Quaver with barely any barium on. Results: inconclusive. Apart from that everyone is now quite clear that feeding has been very complicated.

Today, was our development review that had been arranged for months. It was the appointment I was most relaxed about. As we have community and out-patient support that is ongoing and a fantastic and open team, I thought I was fairly clued up, at peace and relaxed. Important lesson: you don't know really how you feel about something until you hear it from a consultant. Much of the review was positive and complimentary. Funny how they are never the bits you take away. The bits that stay with me and linger in my mind and that will not go away are: 

Wriggles' developmental age is put at 14 months (she is 2 in three weeks, 21 months corrected).

That possible Cerebal Palsy diagnosis is becoming far more real and much more likely. It is not prevalent enough to diagnose here and now, but she is showing enough things to lead them to suspect it is present in a mild form, affecting three limbs.

Of course, both things are very black and white and there is so much in between. The development age does not take into account the various different areas and groups of skills, some of which she displays at a higher level. It doesn't take into account HER and her funny ways, her brilliant smile, her love of colouring, her new game of cuddling everything and her mad laugh which sounds like a manic sheep. It doesn't acknowledge in a breath her history, her bravery, her brilliance, her resilience...it is just a number. But it is a number that hurts, which is silly because it changes nothing and it is a snapshot of where she is now. She is not so affected that it is forever or for the next year, and even if it was, it means so little compared to the way she lights everything up.

And the CP thing. It's something that has been floating around as a possibility in varying degrees for ages; over a year. Just until recently, it could have been something that might have been a phase, something that might resolve. The muscle tone and core reflexes, which are the giveaways in our case, are showing less sign of going now. We have been working our way through things to help, some which are, but it is becoming apparent that they lessen symptoms for time periods, not resolve the central issue like was hoped initially. Partly, the issue has been partly masked by her amazing progress which has so delighted both me, family and the medical team she knows. She has achieved so much that it really is by the way. Our consultant has put us on the waiting list for an MRI and the plan for now is to press on with physio work. Both legs and her left arm have spasticity; her left leg more pronounced than her arm and right leg which are mild and unless you were a doctor with a keen eye and a tappy-stick, you would be none the wiser.

And so the waiting game goes on. Stop start stop start. Questions followed by answers, but not always the right ones. Followed by more questions. Some said out loud, many debated internally. Who knew it was possible to feel so proud yet so sad and confused.

The Letter

Plop.

A thick white envelope plopped through my letterbox this lunchtime. I rightly suspected it was from the hospital and would have the contents of Wriggles' upcoming operation in it. 

Dear Parents or Guardians,

Please bring Wriggles to be admitted to Ward 1a, new Victoria Wing as an in-patient on:

DAY: Tuesday

DATE: 21st August 2012

TIME: 12:00PM

**WRIGGLES WILL BE ADMITTED FOR AN ANAESTHETIC/RESPIRATORY REVIEW AND WILL HAVE PEG INSERTION AND BRONCHOSCOPY ON THE MORNING OF WEDNESDAY 22.8.12. SHE WILL NEED TO STAY IN HOSPITAL FOR A FEW DAYS FOLLOWING THE PROCEDURE**

Please make sure your child has had a bath the evening before and that finger and toe nails are short and clean. Please arrange transport home BEFORE admission. It is not suitable to take public transport. 

Yours sincerely,

Paediatric Gastroenterology

Accompanying was a thick booklet describing about anaesthetics. Most of it I knew anyway from having gone through the finer points with consultants and nurses. It sent a chill through me though.

THIS IS REAL.

This is happening.

Although I am a little daunted by the PEG and tube-feeding for the forseeable future, I am mostly at peace (or at least too exhausted to argue) about that. I have suspected we would end up with one type of tube or another due to the ongoing oral aversion and reflux, so although it was a surprise to receive one on respiratory and neurological grounds, the end is the same. So that bit is as ok as it is ever going to be with a parent. I know a tube will help massively with chest problems and also hopefully decrease vomiting and gagging and importantly give us a ton more freedom to approach feeding from a truly more relaxed angle. I am fine about the bronchoscopy and endoscopy bit, as I have felt for a while that it is high time someone paid more than 5 minutes attention to the state of her airways, lungs and oesophagus.

The bit I am a bit less fine about in the anaesthetic.

Obviously, it HAS to be done. Obviously I want Wriggles 110% comfortable and blissfully ignorant to what is being done and investigated. But it terrifies the living daylights out of me.

I am confident in the skill of all those involved and I know that general anaesthetics are very low-risk and that thousands of people a year receive them, from neonatal to the elderly, and that it is incredibly rare complications happen. I know that people every year in acute states of illness are operated on successfully and laugh in the face of anaesthetics. I am also just hyper aware that we have already been warned that the risk has increased from this recent admission, putting us in an area where in an ideal world, the surgeons would rather wait quite a while. I know provisionally a space is being reserved for us in PICU in case either something happens under anaesthetic (mostly likely a respiratory arrest) or Wriggles becomes rather too friendly with the ventilator once the anaesthetic wears off. I am so scared that we might end up in PICU again and that once more, my baby girl might be tested to her limits. I have spent nearly three weeks with her in a sedated state, and I have no wish to do so again. More to the point, I have no wish for her to be in that state as long as she lives.

Next week, is not going to be a walk in the park.