Unsettled post-surgery

Abigail had quite an unsettled night after her operation yesterday. She fitted quite a lot overnight and continued to have problems getting back up to a normal temperature. This morning she’d calmed down quite a bit and her body temperature was beginning to show signs of recovering. Abby was in a very deep sleep when we saw her today – this is almost certainly due to two doses of Lorazapam which were needed overnight to control her fitting. Doctors are not overly concerned about either her temperature or her fitting. They take the view that, with all her problems, Abigail had any number of reasons to have her seizures triggered after the trauma of surgery and they’re expecting the fits to subside again in time.

After having her overnight meds administered through it, Abby finally had her naso-gastric feeding tube removed this morning which feels like a big psychological step forward for us as much as for her. Of course she has the gastrostomy tube instead, but that’s more discreet and Abby can now look forward to a ‘clearer’ face without the tubes and surgical dressings of the last few months. It will also give her skin a chance to recover properly from the soreness brought on from the dressings.

Staff on the Paediatric Intensive Care Unit – where Abby is currently enjoying one-to-one nursing – say that Abby might move back down to the surgical ward to continue her recovery at some stage today, although there is the possibility that she may stay another night up on PICU. Much of that depends on how her body temperature recovers. One nurse told us that each hospital has a different ethos on paediatric care after surgery. She said that some hospitals would put a patient like Abigail straight back on to the ward to recover, but Lewisham felt that Abby needed closer attention given her history.

Abigail has her operation

Today’s good news is that Abigail successfully endured a three hour operation this afternoon to correct her reflux problem and to insert a gastrostomy feeding tube into her stomach. This evening she is recovering up on the Paediatric Intensive Care Unit at Lewisham hospital.

After a quick visit to the doctor’s surgery this morning with Josh (croup and a heavy cold), Nix and I went to the hospital for about 10am and spent time with Abigail as she was given her final glucose feeds and medication before surgery. She slept soundly most of the morning but thankfully she did wake up and play with us for a bit before she went down to theatre. Abby had actually been sick twice in the night from reflux and had only slept for four hours so it was little wonder she was tired.

At around 12.45pm we unhooked Abby from her monitors and feeding pump, got her changed into a very small and brightly coloured surgical gown and then carried her down to theatre where we spoke with her anaesthetist. She explained how they would administer her pain control and also warned us that Abby may well experience quite a bit of pain for two days after the operation. We both found it very difficult to say goodbye to Abigail as a nurse carried her into the theatre. She went in at 1pm and although we knew there was some pre-operative procedures to go through first, we’d been told that the operation would last 90 minutes and expected her out at around 3.30pm.

The afternoon seemed to drag and became increasingly more tense and stressful as time went on. At 4pm we asked a nurse to enquire after Abby. She could only tell us that she was still in theatre and that in some very young children the operation can take longer because it’s that much more fiddly. At 5pm we asked them to phone up again and we were finally told that she would be moved up to PICU shortly. Having already been given a tour of the facility earlier in the day we went up to meet her. At this point we still had no idea of the success or otherwise of the operation, or why it seemed to have taken more than twice as long as it should have. A surgical registrar then came to see us to explain that the operation had gone smoothly and that it had taken a longer because Abby is so small and the procedure was quite delicate. In fact, Abby was still down in the recovery room near the operating theatres so we went to meet her. Once there we learned that administering the correct anaesthetic and setting up the epidural and taken some time. Abby’s operation had not actually started until 2.15pm.

We were astonished to see her awake and blinking at us as we met her. She was being given oxygen and was quite cold but otherwise she was recovering well. She had two IV lines in – one in each arm – but generally looked in good shape. She did look a bit scared and a little pale but this was probably a potent mixture of anaesthesia, drugs and shock. Nix and I helped to wheel her up to PICU where she was transferred to her bed. She is expected to remain in intensive care overnight tonight and for some of tomorrow, depending on how she recovers. Nix is staying at the hospital tonight but as I left at around 8.30pm, she was suffering from quite a low temperature and attempts were being made to warm her up with heaters. This is probably just her reaction to the drugs and anaesthetic. Doctors have said they will abandon a round of two of her anti-convulsant drugs tonight: both Piracetam and Topiramate cannot be given intravenously and doctors want to give Abby’s stomach time to recover from her operation.

We will speak at length with Abigail’s surgeon on Wednesday but in the short term we’re expecting her to be moved back down to the ward sometime tomorrow and for feeds through her new gastrostomy tube to begin after about three days. In theory, there is a 7-10 day recovery period after which she’ll be allowed home but given her other problems, doctors may opt to keep her in for a longer period to confirm that she is able to feed properly and gain weight again.

Pre-op update

Just a very quick update to say that Abby has been quite settled over the weekend and enjoyed lots of visitors! She’s still on her full 30ml/hr continuous feed and although her reflux seems to be making her uncomfortable at times, she has not been sick at all. We spoke with Abigail’s surgeon on Saturday and Nix spoke with a registrar last night who again talked through the details of the procedures. Nix and I are going into the hospital shortly to spend most of the day there – Abby’s operation is still scheduled for 1.30pm and should take around 90 minutes. Nix will be staying at the hospital with Abigail tonight, but as soon as we know anything after the operation and I am back home I will update you all.

Abby is five months old

Our little Abigail was five months old on Monday and what a five months it’s been! Here’s the latest on Abby from the last few days.

We’ve continued to experience frustration with some of the care and bedside manner of staff at Lewisham hospital, but things have improved somewhat over the last week or so since we’ve gently put our foot down over several matters. One positive is that there is an excellent play specialist on Abby’s ward who has been visiting her and stimulating her with various lights, fibre-optic devices, music therapy and touch.

This week doctors ordered that Abigail’s continuous feeds be increased from 20ml to 30ml per hour. This large increase caused us quite a bit of concern which we asked nurses to document in her notes. The Queen Elizabeth hospital had abandoned continuous pump feeding at 23ml per hour as milk was beginning to pool in Abby’s throat and choke her. Thankfully, the very small amount of weight she has put on since January seems to have negated this as she does just seem to be coping on 30ml per hour now. Nurses are weighing Abby every day and today she has maintained her weight from yesterday at the heaviest she’s ever been! Having said that, she is still technically underweight and a good four or five pounds short of what she should be. Doctors are simply trying to fatten her up for surgery on Monday.

Another minor frustration this week was the news that Lewisham have simply run out of Topiramate – Abigail’s main anti-convulsive drug. They claim that there is only one supplier in the UK and that a new order would take two weeks to arrive, by which time Abby will be home. This is a rather different story from what we were told in our local village chemist, who said that they could order the drug for us but that it might take “three or four days to arrive”. We’re not quite sure what the real story is, but in the meantime the Lewisham pharmacy are having to crush tablets for Abigail so that they can be fed down her NG tube.

Today, Nix and I spoke with Abigail’s surgeon ahead of her operation. She will undergo a Nissens Fundoplication (to correct her reflux) and a gastrostomy (to insert a feeding tube directly into the stomach) on Monday 23rd at 1.30pm. The procedure will take approximately ninety minutes. There is the possibility that Abby will need to spend a night in the Paediatric Intensive Care Unit on Monday after which she will continue to have her drugs administered, but all other fluids will be by IV line. After three days she will begin feeding again. Recovery time is expected to be around a week and we’re hoping that once Abby is stable she can be moved back to the QE hospital, although whether this happens remains to be seen. Other minor points:

• In the end, Lewisham didn’t repeat any of the tests that the QE had done as they said they would.
• Abigail’s fits still seem under good control. She’s had no visible fits for several weeks now, although in the last few days she has become noticeably more restless and uncomfortable. We think this is because she is up to the limit on her feed intake and that her reflux is troubling her.
• In her spare time, Abby enjoys watching her mobile and fibre-optic lights, listening to classical music, and being cuddled and hearing the voices of those she knows!

Poor care at Lewisham

It’s been a frustrating and confusing time since Wednesday when Abigail was transferred to Lewisham hospital for surgery to correct her gastric reflux problem. We have felt quite disillusioned and disappointed as the superb care and attention to detail of the Queen Elizabeth hospital seems to have been replaced by misunderstanding and poor care at Lewisham.

Prior to transfer, the QE told us they expected Abby to be moved specifically for surgery at Lewisham since all other avenues of controlling her reflux had been explored. They even mentioned this Monday 16th as a possible date for surgery. But once Abby had been moved, Nix spoke to an associate specialist who seemed to give the impression that surgery was not at all inevitable and that some of the tests already done at the QE would have to be repeated. Abby would also be put through some alternative feeding regimes despite the fact that these had already been tried and had failed at the QE. Later, Nix spoke to Abby’s consultant who seemed more positive but said that surgery would be more likely the following week (23rd onwards). Already there seemed some confusion or miscommunication between us and/or the hospitals about Abigail’s care plan.

Nix visited Abby again at 10.30am last Thursday where she found her curtains closed, she had not been bathed or had her skin creams applied and she was wearing the same clothes that Nix had dressed her in 24 hours previously. The following day Nix visited again at 10.30am and Abby was again not dressed for the day and her daily bath and skin cream regime had also not been done. When questioned about this, nurses said that they had presumed that Nix “did all that”. Clearly no one knew of our social and home life circumstances that mean that we are not always able to be there to do these jobs. Thankfully, the nursing staff were very apologetic and helpful once the situation had been explained.

Abigail was put straight onto a continuous feeding regime via pump. Nix expressed her concerns about this as it was the first thing that the QE tried when Abby was admitted with feeding problems in late December. It was abandoned a short time later as milk was pooling in Abigail’s throat causing her to choke. Again, Lewisham seemed intent on maintaining this plan and still do. Nix asked to speak with a consultant and was told to be at the hospital for 9am on Saturday for the morning ward round.

Nix and I both went in yesterday for 9 o’clock and were told that the ward round didn’t actually begin until 10am. When they eventually got to us, the doctors took Abby’s notes and discussed her case outside the room without seeing Abby or us and then moved on. All this despite a verbal request from a nurse that “the parents would like to speak to you” and a written comment to that effect in her notes. We were not at all pleased. When the doctors were bleeped at our request to return to the ward and speak with us they were unable to. We’ve also had some problems with dressings that Abby is allergic to being used on her face despite written and verbal requests not to use it. Hopefully we’ve now resolved that situation.

All in all we feel that much of the care at the QE has been disregarded in favour of Lewisham’s own agenda without any consultation with us or regard for our opinion or situation.

Today (Sunday) I spent the whole morning with Abigail who was very settled and sleepy. Some good news is that her anti-convulsant medication really seems to be working well now – she doesn’t appear to have fitted at all recently. I finally managed to speak to an on-call consultant this morning who cleared up a few of the queries and concerns we’ve had. She said that it’s not that they don’t trust the opinion or care from other hospitals but that they must be absolutely sure of the reasons for surgery before operating. Although we were told that at least one of the tests for reflux would be repeated, it hasn’t been done yet and doctors seem to be concentrating on her feeding regime at the moment. The consultant admitted that current attempts to work through options other than surgery seem to be failing and that surgery was now almost certainly going to happen soon. She said she expected a date to be set for some time within the next two weeks.

Although all our worries about Abby’s care have yet to be answered, we are now a little more confident that she will get the surgery she appears to require very soon. We are just hoping that once it’s completed and she’s stable, Abby can be moved back to the QE hospital to recuperate where the staff know her and where we can visit her much more easily. We are hoping to catch Abby’s consultant surgeon on his round tomorrow for more details.

Transferred to Lewisham for surgery

Abigail was transferred yesterday from the Queen Elizabeth hospital in Woolwich to Lewisham hospital in preparation for surgery to correct her reflux and feeding problems. Although it’s highly likely that Abby will return to the QE in the future – even if it’s just for recuperation from the surgery – it was difficult to say goodbye to the nursing staff yesterday. They have been absolutely fantastic in their care for Abby and have often told us of how they all ‘fight’ to look after her at the beginning of shifts!

Nix spent most of yesterday afternoon at Lewisham settling Abby in. Initially she was on an open ward but a consultant later said that we’d spent enough time in hospitals in the last five months and so she was moved to a large private room. Nix had a confusing conversation with a registrar who seemed to imply that the surgery was not definite, citing other ‘medication options’. This was a bit discouraging given that many other options have been tried and none have worked.

Once Nix spoke to the consultant in charge of Abby he seemed more encouraging, saying that he thought surgery would be required. Unfortunately, Lewisham hospital have decided they want to repeat some of the tests to check for reflux that have already been performed at the QE. This means that Abby will not now undergo surgery until a week on Monday (23rd). This is quite frustrating as most of the necessary tests to check for severe reflux have already been performed and they all pointed decisively to the need for surgery. Also, it means another week spent at a different hospital that’s more difficult for us to get to.

Recommendations for surgery

Overall, Abigail’s long-term prognosis remains the same but recently her fitting does seem to have subsided significantly after a reassessment of her medication. She continues to be cared for in hospital.

Back on 13th January, Nix and Abby attended a clinic run by the regional paediatric epilepsy specialist from Guy’s hospital. Generally the consultant seemed quite positive and proactive and made some significant changes to Abigail’s medication in an effort to get her fitting under more control. Many of the drug alterations have to be made over a period of time and these are still continuing now. One change is that Abby will not now be offered Diazepam as ‘quick-release’ anti-convulsant for her more prolonged fits simply because it seemed to be having little or no effect. Thankfully, she seems not to have needed it anyway for the last two weeks or so.

There has still been the problem that nurses are unable to increase the volume of Abigail’s feeds for fear of her vomiting them up. Instead they are having to give smaller concentrated feeds with added calories more often. Despite this, in the last month or so Abby has either fractionally gained or fractionally lost weight each week. So on 26th January, Nix travelled with Abby up to Guy’s in London to go to a feeding clinic. This was a useful meeting attended by a neurologist, a speech and language therapist and a dietician. They examined Abby and concentrated particularly on what has become quite a marked oral sensitivity around her mouth caused by being fed by tube rather than orally. The results were some practical advice on feeding suggestions and simple exercises to help desensitise her mouth. The neurologist also commented on the possibility that much of what is currently interpreted as ‘fitting’ may well be simply evidence of discomfort due to reflux. He said it’s possible that much of Abby’s apparent stiffness and ‘abnormal movements’ may just be a reaction to her severe reflux problem. In light of this and other evidence, the specialists at the feeding clinic were very happy to add their support for a recommendation to operate on Abigail at the earliest opportunity to correct the reflux and put a stop to her vomiting.

Although referral for surgery was initially slow to get going, things seem more definite this week. Abby will be transferred to Lewisham hospital this Wednesday 11th for some more tests before hopefully undergoing two surgical procedures sometime the following week (16th onwards). The main operation will be a Nissens Fundoplication which essentially corrects the weak valve at the top of her stomach which currently allows food back up into the oesophagus. This procedure, although not complex, does rely quite heavily on the skill of the surgeon – if he tightens the passageway too much Abigail will be unable to burp or vomit at all. Too loose, and her reflux will not be fully cured.

The secondary procedure will be a gastrostomy which will insert a more permanent feeding tube directly into the stomach through the abdomen wall. This will mean that Abby will not have a naso-gastric tube down her nose which will be more comfortable and more discreet. Long term, it’s hoped that these two procedures will enable her reflux to be corrected and for her to feed more normally and to begin to thrive and gain weight. If and when Abby moves back to oral feeding again the gastrostomy tube can be removed. Abigail is expected to remain at Lewisham hospital for 7-10 days recuperating. We don’t know whether she’ll then be moved back to the QE, but it’s expected that if the operation proves a success and Abby begins to feed properly she’ll then come home once again.

Lastly, let’s give you some other minor news in brief!

• As mentioned, Abby’s weight has fluctuated up and down a little but has essentially remained the same since she was admitted on 29th December. This week she’s lost a tiny amount again and currently weighs 11lb 2oz – Joshua and Rebekah weighed around 15 or 16lb at the same age.
• You may remember that her skin had been quite bad recently – she has suffered from fungal infections and reactions to many of the dressings and tapes used on her face to keep her feeding tube in place. It’s good to report that this seems to have cleared up completely in the last two weeks. A nursing regime of creams and daily baths has meant that her skin now looks as beautiful as it should! Also, a dermatologist who examined Abigail suggested a trial milk-free diet for a month which is still in effect, but her skin complaints may well have been due to other reasons.
• Although Abigail does still fit from time to time, she has seemed a lot more settled this week with few instances of sickness. Abby has been very relaxed when being held and has even made a fuss when put back in her cot or when being changed – these all seem like small steps forward. At the moment, nurses are trying to sit Abby up in a baby chair during the day to aid her digestion and to offer a better view!