Abby back at the QE

The last update on Abigail was 9 days ago. At that stage she was back on the neurological ward at Guy’s hospital in London after a spell in the Paediatric Intensive Care Unit. After that the severity of her seizures seemed more under control and Guy’s even talked of transferring her back to our local hospital (the Queen Elizabeth in Woolwich) the following Monday 22nd.

Unfortunately, Abby had quite a bad time the day after my update and was fitting and restless for much of the day. Needless to say, any plans for a quick transfer were put on hold. Some of Abby’s medication was again adjusted and she had another peaceful day on the Sunday. After some good days with little or no seizures Abby was finally transferred back to the QE last Wednesday 24th. Staff on the children’s ward there were really pleased to be able to care for her again and although we’d obviously rather have her at home, we knew that Abigail was amongst ‘friends’ again.

This week Abby has generally been well with few seizures although she was a little restless yesterday. Swab results from Guy’s and the QE have both confirmed that Abby still has the MRSA hospital 'superbug' and that it’s now infected her gastrostomy site quite heavily. She’s had an intermittently high temperature for the last two days and is on paracetamol – this is likely to be linked to the MRSA infection. In practice this is still unlikely to affect Abby too much, although there is clearly the risk that the infection can spread and cause other complications. The QE are much, much more strict on MRSA infection control than either Lewisham or Guy’s ever were. Abby is in a separate room with the door shut and all persons (staff or visitors) must use gloves and gowns and wash hands thoroughly when entering or leaving the room. Clearly this is mainly for the protection of other patients, but illustrates the proper working practices being put into place.

Abby’s heart rate is often high even when she doesn’t appear to be fitting. This could be due to her infection, her ‘frothing’ secretions problem or simply due to wriggling! Generally she certainly seems more settled. She’s still on a continuous 20 hour feed with two 2 hour breaks a day and the care plan is simply to get her medication, seizure control and feeding to a stage when it’s manageable for us at home. Doctors did initially think that Abby may not spend too long at the QE, but we may have to wait and see how much of a problem the MRSA is first. Also:

• One of Abby’s main anti-convulsant drugs – Phenobarbitone – has now been withdrawn and another of her original drugs Phenytoin will shortly be reduced too. Other more appropriate medication is now being offered since the nature of the fitting seems to have changed.
• The ‘pooling’ of secretions in Abby’s throat which often leads to a short period of choking seems to have subsided a bit. A surgeon at Guy’s who examined Abby felt that it was simply wind that was finding it difficult to escape from the stomach post-operation. Abigail now has her gastrostomy ‘winded’ regularly!

The photo shows Abby back at the QE hospital having reached six months old!

A better few days

Things have improved with Abby quite a bit since I last updated you. After being admitted to Paediatric Intensive Care again on Sunday, Abigail spent two days there whilst being closely monitored on very high doses of drugs. Thankfully, she didn’t have to be completely put to sleep or ventilated in order to stop her major fitting. She was started on a new steroid medication to help with her seizures and also given an IV infusion of Midazalam – another new temporary drug designed to stop the convulsions. Whilst on the PICU ward on Monday, Abby was given another EEG scan which seemed to conclude that not all of her abnormal movements may necessarily correlate with actual fitting. Whilst this seems good news, it makes the job of interpreting what is fitting and what is not more difficult for nursing staff!

After a bad day on Sunday, Monday and Tuesday morning, things seemed to be calm down a bit and Abby was taken back up to the neuro ward. It was felt that she didn’t require intensive care because she was maintaining her airway and vital observations on the medication given to her. Once up on the ward, the Midazalam infusion has been gradually decreased and last night was stopped altogether. Another major change in her drug regime was taken whilst on PICU. Abigail will be weaned off her long-term anti-convulsant drugs Phenobarbitone and Phenytoin. It was decided that whilst these drugs have worked in the past for Abby, they’re now proving ineffective against the severity of her current seizures. Instead she’ll be given Epilim, another anti-convulsant that is thought to be more appropriate for the sort of seizures Abby has had recently.

The good news is that the combination of all these changes has meant that Abigail has had a really settled time for the last few days. In fact, there hasn’t been one major seizure since Wednesday and no intervention required. She’s been awake and alert and we’ve been able to pick her up and cuddle her quite a bit. On Thursday Abby was taken down for an ERG eyesight test, the results of which are yet to be confirmed, but the technician there seemed to be making positive noises. All in all, Abigail once again seems like a different child to the one of the last two weeks. Other brief news:

• Abby was weighed yesterday and she has remained static at the weight she was when admitted to Guy's a week and a half ago. This is not really a surprise given that her feeding has had to be cut and she has been fitting so much. Abby is now back on reduced feeds with no IV fluids.
• A CT scan of her skull will not now be undertaken – an examining radiologist felt that there was not enough justification for a scan and that any abnormality in the shape of Abigail’s head was explained by the brain damage sustained before birth.
• On Tuesday Nix spoke at length with Dr Hughes, the senior Paediatric Neurologist in charge of Abby. The consultant was encouraged by the difference in Abigail since she last saw her in January, despite her current problems.
• Abby is still having problems with saliva pooling in her throat which leads to choking and the need to be suctioned. This appears to be a direct result of her operation, and this will be proactively investigated by a surgeon to see what might be done about it.

At the moment it looks as though the rollercoaster is trundling along in Abby’s favour! We’re just hoping that she gets a good rest from the constant seizures of the last few weeks.

Seizures increasing - Abby moved to PICU

I last updated you on Tuesday when Abigail was transferred from Lewisham to Guy’s hospital in London. The first half of the week was reasonably quiet for Abby but her fitting has spiralled out of control again these last few days. On Wednesday she had another EEG brain scan which will be repeated again tomorrow (Monday) because her fitting movements meant that readings were difficult to gauge for any length of time. What was noted was abnormal activity on the left side of the brain during seizures. In addition there were some occasions where Abby had some ‘abnormal’ physical movements that did not correspond with any abnormal brain activity. This seems to suggest that some movements may not necessarily indicate epileptic fitting in themselves. Having said that, the overt physical manifestation of Abby’s seizures has increased and become much more obvious over the last three days or so.

It’s been clear to see that Abigail has become more and more acclimatised to her seizure intervention drugs over the last few weeks. Whereas a month ago a dose of Lorazapam would leave Abby settled for a good 24 hours, it has gradually become less effective. These last two days have seen Abby fit a lot more and respond very little to many of the drugs that used to work for her. Both Paraldehyde and Lorazapam have been administered without much effect and doctors don’t want to continue with a care plan that no longer seems to adequately control Abigail’s seizures.

Nix and I went to visit on Saturday and were with her during a one hour episode. She would seize for 10 minutes before coming out of the fit for a minute or two and then regressing back into a seizure. Abby’s feeds have been increased again this week to the highest level they’ve ever been, but virtually all her energy is being spent on the relentless fitting and so there’s still very little chance of her gaining weight soon.

Abigail fitted almost continuously from late Saturday evening all the way through to this morning (Sunday) and we were called by the hospital to be told that Abby would be moved from the neurological ward down to the Paediatric Intensive Care Unit at lunchtime today. This was because Abby really needed to have much higher loading doses of drugs which required constant one-to-one nursing. With doctors running out of options to control the seizures, a last resort would be to deeply sedate Abby to stop the fitting and allow her a day or two asleep to rest. The drug doses required to achieve this need constant supervision and can often have an effect on the respiratory system. In fact, if Abigail is put into a very deep sleep to stop the fitting it’s likely that she will be intubated with a ventilator to breathe for her. This could cause other complications later on but may be the only short-term option.

Earlier this evening Abby was given yet more loading doses of Phenytoin to try to increase the levels of the drug in her blood and an IV infusion of another sedative was also increased. We have just rung the hospital (at 11pm) and thankfully Abby has been asleep, settled and not fitting since 8pm tonight. So far she is maintaining her own airway and is breathing without any assistance.

Other brief news:

• Abby is a separate cubicle in PICU because of her MRSA virus – more swabs have been taken to see if she still has it and results are expected in the next few days.
• Once Abby’s fitting has subsided a bit more, a CT scan of her skull will be undertaken. Nix and I have expressed concern at the abnormal shape of the back of Abby’s head – doctors have agreed that it’s not quite right and this will be checked out to examine whether it might be a contributing or causal factor in her fitting or brain damage.
• Despite Abby’s feed being increased this week she’s now back on intravenous saline fluids whilst the stronger sedative drugs are being used.
• We hope to meet and talk with the senior paediatric neurological consultants at Guy’s on their ward rounds either tomorrow or Tuesday.

Abigail now at Guy's hospital

Abigail wasn’t transferred to Guy’s hospital in the end yesterday. A bed didn’t become available until very late in the day by which time transport was unavailable. Instead Abby stayed at Lewisham where she has had a settled time without any major fits and no significant drug intervention. She had a good night last night and was transported with a doctor and nurse by ambulance to Guy’s hospital first thing this morning. Nix has gone up to visit and settle her in and reports she’s doing well and that there’s a great view from from Abby’s 10th floor room overlooking the landmarks of central London! So far the journey doesn’t appear to have affected Abby too much.

Other brief news is that doctors have increased her milk to 23ml/hr continuous feed and that the IV line in her head has come out, so yet another one will have to be put in to her pin cushioned little body! Some disappointing news that I forgot to mention in the last few days is that Abigail is confirmed as having contracted the MRSA hospital 'superbug' at Lewisham. Despite the inflammatory bad press this virus receives, doctors are certain that it will not affect Abby in any overt way and will not make her feel any more ill. It’s also true that given the time she has spent in hospital and the fact that she’s had surgery, it’s not a surprise that she’s got it. Abby is being barrier-nursed (gloves and aprons for all patient contact) but this is more so that the virus is not passed on to other patients.

Imminent transfer to Guy's

As you may have gathered, last week was a very difficult time for Abigail and us. Things seem to have improved a little since then; Abby’s care has been reviewed and plans have been changed since my last update.

Thursday was very difficult. I last updated you for the second time that day when Abigail was having another major seizure in the afternoon. Such was the ferocity of these fits that when Nix and I visited at 8pm Abigail had already had as much Lorazapam as she was allowed for that day. This is one of her most effective anti-convulsant drugs. Doctors told us that if Abigail fitted badly at any stage before midnight then she could not have Lorazapam administered. With the frequency of fitting seemingly at about eight hours, we felt sure that Abby was due for a major episode by about 9pm whilst we were there. That evening we were also told that a transfer back to the Queen Elizabeth hospital was definitely on for the next day, Friday.

Thankfully, Abby didn’t fit for the rest of the night. She woke at around 7am on Friday with mild spasms but nothing significant and doctors administered Lorazapam as a preventative measure to stop her going into her a full-blown seizure. Despite that, Abigail had a major seizure at 10am whilst Nix was visiting. It lasted about ninety minutes and was difficult to bring under control, so nurses and doctors decided that Abby’s transfer to the QE should be cancelled for that day – she was simply too unstable to be moved. Later in the day, the paediatric neurologists at Guy’s hospital in London were consulted about the fitting and medication. They recommended that Abby stay on the ward but be given one-to-one nursing and loading doses of Phenetoin. This is the anti-convulsant that Abby had been on from birth and only weaned off very recently because it seemed to have very little effect!

On Saturday Abby was finally moved downstairs to the children’s medical ward where she was unsettled for a while but generally OK. As the last major fit up to this point was 24 hours previously, doctors began to wonder whether the Phenetoin was indeed working this time around. Also on Saturday a major review of Abby’s care was undertaken. In hindsight it was felt that not moving her to the QE had been the right decision, and that she would simply have had similar problems there. A significant factor was that the QE do not have any dedicated paediatric anaesthetists whereas Lewisham do. This becomes important if you have to sedate a child and intubate them with a ventilator and doctors wanted to have the safety net of that option. So the decision was taken to plan for a transfer to Guy’s hospital in central London for today (Monday). This is the specialist paediatric feeding and neurological centre for London and the south-east. Consultants at Guy’s had also been advising on medication and care during last week and Abby’s neurological consultant is based there too. It really is the best possible place for her to be, and although the fitting over the weekend seemed to have lessened a lot in severity, doctors were keen for the fitting to be dealt with by the best people.

Yesterday (Sunday) Abby had another better day. Like Saturday she had some small episodes, some of which were self-resolving and another which required a shot of Paraldehyde to stop. Nurses have been trying to avoid giving Lorazapam simply because Abby has had so much of it. Yesterday evening Nix and I were able to see Abby awake and alert – something we haven’t seen for some days now. We were even able to get her out of her cot and cuddle her and she certainly seemed a lot better in herself. Her eyes were particularly good with very little abnormal movement and she definitely seemed to lock on to our faces occasionally. Abigail is currently on half milk feed and half IV fluids, and the only slight disappointment was that another IV line had to be inserted – this time into her head!

As I write, Nix has just called the hospital to find out the latest. Guy’s certainly want to have Abigail but don’t currently have a bed available. They were expecting to have one for today, but need to see if anyone can be discharged before Abby gets transferred. The upshot is that we still don’t know whether she’ll move today but as soon as a bed becomes available at Guy’s she will transfer there.

A second major seizure today

Apologies for a second update in one day, but we have just received a phone call from the ward to say that Abigail has had another major fit this afternoon lasting 45 minutes to an hour. She was again given high doses of anti-convulsants to bring the seizure under control. Moves are definitely now afoot to transfer Abby to the Queen Elizabeth hospital in Woolwich where she has been based for much of her life. Staff there are much more aware of her history, fitting and medication regime than Lewisham. Clearly though, Abby cannot be moved until relatively stable. This evening she is very likely to be moved up to the Paediatric Intensive Care Unit where she will receive one-to-one nursing and monitoring. Later today doctors will decide on the next course of action for Abby’s care.

Fitting much worse

Since Abigail’s unexpected major seizure on Tuesday morning her condition seems to have worsened. She was reasonably settled for most of Wednesday but that will almost certainly be due to the large amounts of sedative she received the day before. Nix visited yesterday morning and continued to have some concerns about Abby’s breathing. It still seemed to be quite laboured and her heart rate was generally much higher than usual, even at rest. There were also some more instances of Abby vomiting up frothy saliva secretions and the amounts seem to have increased again. There’s still no real explanation of why this might be, although we do fear that the Nissens surgical procedure has resulted in the oesophagus tube to her stomach now being too tight.

Yesterday evening I went in to visit Abby to the sight of around eight doctors and nurses surrounding Abby’s cot working away to try and stop another fit. During the day, the long central-venous line that had been put into her neck had begun to come out and so that was removed. Although Abigail no longer needs IV fluids to supplement her feeds, doctors felt that she needed the more rapid response that an intravenous anti-convulsant drug could offer. So yet another IV line was inserted and thankfully this time a vein was quickly found in Abby’s foot.

All in all, Abigail fitted for two hours last evening and was status epilepticus – in other words she was essentially fitting continually for that whole time. Earlier in the day her temperature had been a bit high and so overall she had been given Paracetamol, rectal Diazepam and two doses of IV Lorazapam. Extremely concerned at Abby’s condition, I called Nix to the hospital to join me whilst friends came to baby-sit our other children. Only after the second dose of Lorazapam (a particularly strong anti-convulsant) did Abigail settle and come out from her fit. Heavily sedated, she slept soundly for most of last night.

I am on nights this week at work so I rang the ward at around 6.30am today to find out how Abby’s night had been. Unfortunately I was put on hold for a minute or so – I was told that doctors were with Abby and that she was fitting again. In the past when Abby has been given Lorazapam she has normally slept very deeply for a good 18 to 24 hours afterwards. It’s very worrying then, that Abigail should fit so heavily less than 12 hours after two doses.

After speaking to a doctor I managed to leave work early and drive back home. We rang in for another update at about 7.30am this morning and Abigail was sleeping after very large does of anti-convulsants. Her fit this morning had lasted an hour. Initially, another anti-convulsant was tried with no effect, before she was given ‘loading doses’ of Phenobarbitone. This is one of her regular medications but it was felt she should be given a booster. At one point the consultant paediatrician was bleeped to come in and there was also talk of Abby being given some sort of surgical anaesthetic to act as an anti-convulsant. Nurses have also begun to offer IV fluids once again since Abby’s feeds are stopped during seizure episodes. It’s possible that Abigail will be moved back to the Paediatric Intensive Care Unit today for closer monitoring.

Today there is also a chance that Abigail will undergo a chest x-ray as well as receive the results of a blood test from yesterday. These are both to try and ascertain whether Abby has some sort of infection, possibly in her chest. An infection would be bad news for Abigail as she might well develop pneumonia because of her immobility. We also spoke to a registrar last night about setting the wheels in motion for Abigail to be transferred back to the QE where medical staff can more properly care for her epilepsy. Clearly, until she is stable this won’t be possible.

Secretions, IV lines and seizures

It’s a week since I last updated you and eight days since Abigail had surgery to correct her reflux and fit a gastrostomy feeding tube. In the days after her operation last week, her fitting certainly subsided and it was generally felt that Abby’s threshold for triggering seizures had been temporarily lowered by the trauma of surgery. She was moved back down to the surgical ward on Wednesday last week.

The days after the operation did see a new symptom develop. Abby occasionally experienced gagging and vomited up what I can only describe as ‘froth’. Initially it was thought this might be a seizure episode but it was later reckoned that this frothing effect was not due to a fit but something to do with the operation on her stomach. Abby’s surgeon felt that although he wasn’t sure of the specific reasons, the symptom would subside as time went on. Generally though, Abigail looked really good: her facial skin has cleared up tremendously and she’s been alert and responsive.

Thursday was not a good day, though. Doctors decided that Abby was not absorbing as much fluid as she needed through her gastrostomy and that she was in danger of dehydrating. To this end, Abby was taken back down to theatre and given her second general anaesthetic in a week so that doctors could put a more substantial intravenous line in. This would pump fluids directly into Abby’s bloodstream. It took two hours to fit a line and in the end doctors opted for the last resort of a long line into her neck which required a stitch to keep it in. Evidently, Abigail is so small that doctors had considerable trouble finding a vein thick enough to accept an IV line. The next morning Nix counted over thirty attempts to get a line in all over Abby’s body. They had even tried to put one into her head!

It was also Thursday that nurses began to offer Abby some milk feeds via continuous pump into her gastrostomy. These feeds were in addition to IV fluids. Gradually her milk feeds have been increased such that she is now on 30ml/hr – the same level she was on before surgery. At the weekend, Abby’s milk feeds had reached a level such that she didn’t require additional IV fluids and she was put onto continuous milk-only feeds. Despite this, her main IV line remained in place after all the difficulty doctors had in getting it in – they wanted to be sure that Abby was happy on milk before taking it out! Again, Abby has seemed very alert and well in herself throughout the last week or so and despite the trauma she’s been through.

This morning, though, there was bad news. Abigail had quite a severe epileptic fit that lasted around fifteen minutes. It was the first fit since the two days after her operation and like those episodes, she had the quick-release anti-convulsant drug Lorazapam administered. Abby was also given oxygen and doctors were bleeped to her bedside to assess the situation. There seems to be no apparent reason why she should have such a large fit again. As a result of the drugs, Abby slept very deeply for much of the rest of today.

This evening, Nix went in again to visit. Doctors were once again called to Abby as she seemed to be experiencing difficulty in breathing. This is not something she’s had a problem with before. All other vital observations appeared normal, but tonight Abigail is on oxygen and under close observation. She also vomited up some more froth this evening. One theory is that she may have accidentally inhaled a small amount of mucus which may go on to develop into a chest infection. Tomorrow, Abby is likely to have a chest x-ray.

Despite her large seizure this morning, surgical consultants are quite keen to discharge Abigail home! We are clearly not happy with her progress at the moment – she is fitting again, seems to have some sort of respiratory problem and it’s yet to be proved that she can adequately put on weight and feed correctly. Our health visitor has already begun to put the wheels in motion for her to be readmitted to the Queen Elizabeth Hospital in Woolwich (where she had been) for the remainder of her recuperation.