Abby underweight and re-admitted to hospital

Apologies that we didn’t manage to update you on Abigail’s condition before Christmas. Things were pretty hectic as you can imagine.

Our Christmas wasn’t too bad. Abby has seemed more settled in the last week or so and we enjoyed a good family time with the three children although this was slightly marred by some more bad news just before Christmas. We received the results of the eye test performed at King’s which showed that Abby is almost certainly cortically blind. This means that despite the eyes and optic nerves being perfectly operational, there are some problems with the way the brain interprets the visual information. Practically, this means that Abby may only see areas of light and dark or colour, and may also only see intermittently or very close up. Both we and the doctors are of the view that Abigail is definitely able to see from time to time as she often appears to ‘lock on’ to an object or face momentarily, only to blink or look away soon afterwards – this is a classic sign of cortical blindness and is a direct result of her brain injury. Although very disappointing, we had fully expected this result given her development. On the more positive side, research has found that babies with this form of blindness can have their sight greatly improved over time with the correct stimulation and visual encouragement.

The problem of Abby’s feeding has continued – she regularly vomits up feeds and occasionally blood as well. Recently, the homecare nurses switched Abigail onto pump feeding. This was an effort to feed her milk by naso-gastric tube via a timed pump which would allow her feeds to be given over a longer period of time. This has meant that we are a little more free during feeding than we were, but it’s made no appreciable difference to her vomiting. Since Christmas Abby has lost yet more weight and is now medically underweight.

Abigail’s medication was also changed shortly before Christmas. The Phenytoin anti-convulsant drug (thought to be a possible reason for her vomiting) is being phased out over several weeks whilst another drug is brought in over the same period. Unfortunately, with Abby continuing to lose weight and the Phenytoin not due to be withdrawn completely until the middle of February, doctors yesterday took the decision to re-admit Abigail to hospital again in an effort to find out once and for all the cause of the vomiting. After going in yesterday afternoon, they tried Abigail on a continuous slow feed, but Abby continued to vomit despite this. A pH test will be done next week (possibly at another hospital) to determine whether there is a mechanical reflux problem. If there is, it’s likely that Abby will be fast-tracked for surgery to correct that and to fit a more permanent feeding tube directly into the stomach. Doctors still believe that the Phenytoin medication is the most likely cause of the vomiting (it’s the primary side-effect) but with Abby’s weight dwindling, they simply cannot wait until February to see if her vomiting subsides once the drug is fully withdrawn. Surgery will be a difficult decision for the doctors because they’ll be reluctant to operate on an underweight baby, but will be caught in a vicious circle of trying to correct the reason for her lack of weight gain.

Although the re-admission of Abby for a second time is yet another setback, we are much more accepting of it this time. We are hoping that the medical staff can correct the reflux problem and hospital is clearly the best place for that. This next week or so also provides us with a period of respite care – we are both physically exhausted from the feeding and 24-hour care that Abby requires. Of course (as you may recall from previous updates), having Abby in hospital brings it’s own pressures and tiredness.

Not parenting, but nursing care

Life at home caring for Abby has remained difficult these two weeks since our last update. There’s been no improvement in Abigail’s condition at all and we are feeling very low and inadequate in our ability to cope with the current situation or any that may face us in the future. Last week Rebekah finished nursery and will move up to primary school in January which leaves a five week gap for Nix at home with three children all day. This, coupled with Abby’s condition and the level of care required plus the fact the Becky and Josh seem to be quite a handful at the moment makes for an exhausting home life. Matt's work at ITN, though still incredibly satisfying, seems to pale when compared with the eighteen-hour days Nix is putting in to her ‘work’ at home. And it seems unrelenting.

Abby is continuing to vomit many of her feeds up and has lost weight again. She’s now back down to 10lb from 10lb 9oz three weeks ago. Although her medication is staggered so that it’s administered between milk feeds, it remains difficult to know how much of these drugs she is actually getting. She has recently been put on to three anti-sickness drugs (bringing her total drug count up to seven) but these seem to have little effect so far. Just yesterday, Nix spoke on the phone to Abby’s consultant who instructed us to double the dose of one of her anti-sickness medicines.

There is also the distinct possibility that Abby’s Phenytoin medication may be stopped altogether. This is the drug that is proving very difficult to get up to the right levels in her body and could well be the cause of much of the sickness. We don’t yet know if this will definitely happen, or whether it will be replaced by another anti-convulsant drug.

The results of Abigail’s recent VEP eye test at King’s are still to come through but her second EEG scan results have. They seem to indicate that many of the smaller abnormal movements and limb-stiffening that had been assumed to be minor seizures do not in fact appear to be so. This is good news in that Abby may well be fitting somewhat less than we’d previously though, but bad news in that it raises concerns about what the abnormal movements might now be. They could be very early signs of one form of cerebral palsy. What is worrying is that Abigail often gets distressed during these periods – she simply doesn’t like what’s happening to her, so it’s not as though she is unaware of her problems.

One of our prime concerns at the moment is that we are not really parenting Abigail at all – we are merely providing a necessary level of 24 hour nursing care, and this obviously has implications for the other two children. Having said that, they both seem to be coping OK with Abby at the moment. It’s just the day-to-day challenge of home life with two very energetic toddlers and one very dependent and very sick baby.

Care at home not easy

Since Abigail was discharged on Thursday, caring for her and coping with ‘normal’ family life has been quite difficult. Abby has had to return to hospital every day since she came home except today. On Friday she went to King’s in London for an EEG scan. Although the full results are not available yet, Nix felt that it may have been difficult for any effective conclusions to be drawn because Abby was so wriggly. Doctors will try to compare the brain scan results with those of her previous EEG some weeks ago.

On Saturday Abby had to return to hospital because her naso-gastric tube had come adrift and had to be re-inserted. On Sunday she went back once again because the sticky dressing attaching the NG tube to her cheek had come off completely. The skin on her cheek had become very sore and was weeping quite a bit. Nurses therefore re-inserted the tube once more into the other nostril and attached her tube to the other cheek. Yesterday Abby had a routine weekly visit to hospital yet again to check the levels of anti-convulsant drugs in her blood and doctors will use these regular tests to determine whether her dosage is correct.

Today Abby has not had to go to hospital for anything! She is sleeping quite well at night and her overt fitting does seem manageable now, but the main problem we’re dealing with is her feeding. Towards the end of her recent stay in hospital, Abigail had begun to vomit occasionally and although this wasn’t a specific concern with regard to her feeds (she is putting on weight quite well) is was obviously a concern given that her medication is administered orally.

Since coming home, Abby has been vomiting (or refluxing) her feeds up regularly. In the last two days she has been sick after almost every feed. As well as being tiring, messy and time-consuming, it’s also quite demoralising. Doctors are undecided on the possible cause of the sickness but are not overly worried at the moment. It could be drug side-effects, a reaction to mild fitting, an inability to cope with her feeds, or most likely a consequence of having a naso-gastric tube. This gives the need to get Abby back onto bottle feeding more urgency, especially as her tube feeds often take over an hour to give!

In the short term, the hospital speech and language therapist is liaising with us at the moment – they get involved at a very early stage to assist with oral problems including feeding issues. Abby will return to King’s on Friday for her vision test after which it should be possible to tell whether the link from her optic nerve to her brain is functioning correctly. Our next outpatient appointment with Abby’s consultant is not for another two weeks or so but we may have to liaise before then if Abigail’s vomiting continues as it currently is.

With regards our home life, we’re finding things quite difficult at the moment. It is difficult not to devote a large proportion of our time to Abby, and Rebekah (4) and Joshua (2) are both proving quite a handful for Nix during the day. It may simply be their age, but Nix is also limited in going out and maintaining their routines and finds that she is constantly on the go the whole day.