Infection better, but transfer to Lewisham

Apologies that it’s been just over a week since our last update on Abigail – it’s been a hectic time with many developments and not a lot of time to write. Our last update was on Saturday 10th just a few days after Abby had been re-admitted to the QE with a chest infection. She’d spent only 48 hours at home with us after her discharge. It was awful seeing Abigail really suffer with the infection: her respiration rate was up to 72 breaths a minute, her heart rate was extremely rapid (almost 200 beats per minute) and Abby was admitted with a temperature of 39.2C (102.5F) which had risen from normal in the ten minutes it had taken Nix to drive to the hospital. She was very sick indeed.

Thankfully she began to respond to antibiotics last Sunday and her respiration, HR and temperature began to calm down. Not only did this mean that Abby was on the mend, but it also cleared up a concern that her chest infection was an MRSA infection. With Abby beginning to respond to conventional antibiotics (and MRSA resistant to those) we knew this wasn’t the case.

As last week drew on and Abby made steady progress in fighting the infection in her lungs, it became clearer just how ill she was on that Friday and Saturday. As we spoke with Abigail’s consultant – who thankfully was the doctor on call when we took Abby back in – it was apparent that Abby had aspirated (inhaled) some of the frothy mucus in her throat. It’d been our suspicion from right after the operation that this was happening because the Nissens surgical procedure to ‘tighten’ up the valve at the top of her stomach was too tight. Although it was effective in stopping Abby’s vomiting, we reckoned that it also prevented anything from travelling down the oesophagus into the stomach. Her secretions (saliva) would therefore simply ‘back up’ and pool in her throat causing her to panic, choke, and eventually aspirate it into her lungs causing an infection. Abby’s consultant agreed that this was exactly what had happened. Abigail had actually suffered from aspirational pneumonia and things had been extremely serious for her until the antibiotics had kicked in. Many months back, we had asked another consultant what it was that Abigail might succumb to in the event of her premature death. He told us that severe epileptic seizures can kill and that infections can also prove fatal – particularly chest infections.

Yet again Abby seems to have fought off another very serious situation. We’ve simply lost count of the number of times that her condition has had the real potential to result in tragic consequences – but she keeps on fighting! The incredible irony of last week was that she had virtually no seizure activity at all during this time – not even with a high temperature.

Towards the end of last week Abby got much better and doctors gradually reduced the levels of oxygen given to help her breathing. With the chest infection all but behind her, doctors now wanted to focus on attempting to correct whatever the problem was with her ‘frothing’ secretions. On Thursday Abby’s consultant spoke with the paediatric surgeons at Lewisham hospital (where Abigail was operated on) to get their take on what might be appropriate. In a very surprising and exceptional case of NHS efficiency Abigail was transferred that same day to Lewisham pending investigative tests. Nix and I were a little anxious about this given our previous poor experience with the care at Lewisham, but we were also pleased that efforts to find a solution to Abby’s problem were moving along quickly. Everybody was concerned that Abigail could very easily aspirate mucus again and suffer another infection unless treated in some way.

Last Friday, Abby was given a barium swallow study which monitors exactly what movement there is through the oesophagus and into the stomach. This showed that there was indeed very little getting into the stomach and also that there was virtually no movement in the oesophagus to ’squeeze’ food and liquid downwards. It’s thought that this natural assistance that the body gives to digestion has been destroyed by Abby’s brain damage.

Tomorrow (Monday) Abigail will go down to theatre once again to undergo an investigative endoscopy and possibly attempt to ‘dilate’ the top of the stomach valve to allow food through. This afternoon we all went to visit Abby. She still has quite a chesty cough but her breathing is almost normal now. She appeared a bit twitchy at times; as though she might be mildly fitting but nothing too serious. We just hope that the procedure tomorrow is a straightforward and successful one. It’ll be another busy and hectic day tomorrow – we need to visit Abby first thing in the morning to see her and give our consent to the procedure, and it’s also Rebekah’s fifth birthday tomorrow with a big party in the afternoon!

Needless to say, any predictions on when Abby might be allowed home again won’t be made until after this next procedure.

Breathing still not good

Nix and I went to visit Abigail in hospital this afternoon and although her temperature and heart rate are now under more control, her respiration remains rapid as she struggles to get decent lungfuls of air with her chest infection. Doctors remain confident that the infection poses no immediate risk to Abigail, and in an attempt to allow her more ‘breathing space’ in her chest they have stopped milk feeds through her gastrostomy and have put her onto an IV drip for the time being.

Despite assurances from the doctors that the infection in Abby’s chest is “not significant” we remain a little concerned that her existing MRSA infection may become more of an issue. This is because the two areas that are currently confirmed as MRSA infected are her gastrostomy site and in her sputum. Anyway, Nix is currently at the hospital this evening and will ask these questions and more during the evening ward round.

Two days at home and then re-admission

I’m sorry to have to tell you that after just two days at home with us, Abigail has this morning been readmitted to the Queen Elizabeth hospital with a chest infection. Last night that she was having difficulty with her secretions and couldn’t seem to cough up the fluids in her oesophagus. Overnight Abby’s breathing became quite laboured – even in her sleep – and this morning her respiration was sounding very ‘bubbly’ indeed.

On the advice of our homecare nurse we took Abigail back to the paediatric ward where she was then examined by her consultant. By that time she’d also got a very high temperature, high heart rate and increased respiration. Ironically, she doesn’t seem to have had any major seizure episodes during this. Our theory of what is going on seems to be shared by the doctors: that the Nissens surgical procedure used to prevent her from vomiting is now preventing anything at all (including saliva secretions) from going down into the stomach. Eventually a ‘pool’ of secretions backs up into her throat whereupon she gags and gets into difficulty. It’s highly likely that at some point she has aspirated (breathed in) some of this mucus into her lungs and this has caused an infection.

Abby has been given paracetamol for the fever which seems to be lessening now. This afternoon Abby will undergo a chest x-ray to determine the full extent of the infection as well as beginning a course of intra-muscular antibiotics by injection to try to fend off the infection more rapidly. Doctors just don't know how long Abigail will remain in hospital, and we were already aware that infections of this type can potentially be very dangerous for a child with Abigail’s problems as it can be difficult for them to fight infections.

Clearly this is a big set-back for Abby and us. Rebekah and Joshua had particularly enjoyed having Abby home and Becky was very unhappy that she had to go back into hospital again. At least we know that we did the right thing by taking her back when we did and that she has brilliant medical staff caring for her who know and love her. We were also fortunate that it was Abby’s actual consultant who happened to be the doctor on call on the ward this morning.

Needless to say we really enjoyed those few days at home with Abby and we seemed to be managing fine caring for her. She was a delight to have in the home with us and Becky and Josh really doted on her. We just hope that Abigail can overcome this new obstacle and get back home to us again soon.

Abigail home at last

After 99 continuous days in three different hospitals, Abigail was finally discharged from the Queen Elizabeth Hospital in Woolwich this afternoon where we all went to meet her and bring her home. Needless to say we’ve also been given a whole box of medicines, medications, creams and other medical equipment, but today is a big day for us as Abby rejoins us once again in the family home. Nix and I are very excited that we can now begin to get on with life as it will be with our three lovely children. Rebekah and Joshua are also thrilled about Abby being home and have wanted cuddles and kisses with her ever since we walked through the door.

Abigail will be seven months old this month and has only spent seven weeks of that time at home. We’re hoping that this current stable phase lasts a good long while – it’s unlikely to be her last stay in hospital, but we plan to enjoy this time with her as a complete family for as long as we can.

Coming home tomorrow

Abigail has had a very settled time at the Queen Elizabeth hospital since she was transferred from Guy’s nearly two weeks ago. In the last week she’s experienced little or no seizure activity and been calm and placid. Swab tests indicate there is still an MRSA infection in her abdominal gastrostomy site and she’s occasionally had a slightly higher temperature thought to be linked with that infection. Generally though, Abigail seems to be in another phase of calmness and stability.

It’s great to see her awake and alert when we visit and she’s often seemed much easier to hold recently. Her spasmodic ‘extensions’ and limb movements appear to have subsided somewhat. Despite her apparent lack of outward expression or interaction, Abby clearly loves her bath times – she goes all wide-eyed and relaxed when in the water!

In terms of her feeding, Abigail has progressed with this too. She’s now off a continuous pump feed and is on 95ml of milk every three hours which is gravity fed through a large syringe into her gastrostomy. It only takes around fifteen minutes to complete. Abby has seven feeds a day which means a six hour break between midnight and 6am. Given that before her operation she could only handle 33mls over an hour, it’s great that her feeding is now almost up to what she should be getting for her age. She’s also finally begun to put some weight on with all that milk and now weighs 13lb 7oz – she’d been static at around 12lb since January.

Given her recent progress and stability, doctors have decided that Abigail will be discharged from the QE to come back home tomorrow (Tuesday 6th). We’re obviously very excited about this and it’s a major milestone for Abby and us. Clearly this is unlikely to be the last spell in hospital for Abigail but we plan to enjoy and make the most of this next phase at home. Becky and Josh are also very excited about Abby coming home. Yesterday Nix and I spent much of the day cleaning and tidying Abby’s room and preparing all the sensory lights, mobiles and toys for her cot side.

Obviously we know that the long-term prognosis for Abigail hasn’t changed. One way to describe her at the moment might be that she’s simply more stable. Her fitting seems to be under as much control as can be expected and her feeding is doing well. We are now at the point where we feel able to care for her at home. It will undoubtedly be tough with three children at home (particularly at the start of the Easter holidays!) but we feel as prepared as we can be. Just as Abby seems to revel in the experience of her bath times, we hope that as a family we are soon able to offer her many more rich and diverse experiences of life for as long as we’re blessed with her.