There were issues the doctors could never have prepared us for prior to Orla’s transplant as every child is different and every transplant is too. Orla continues to do well in terms of her blood results from the transplant perspective. The daily challenge is related to the balancing act of her feeds, medication, preventing her from vomiting and trying to get her to eat!!
Her gut is still recovering and thus we are not able to increase the rate of her nasogastric feeds to allow her any time off. She still appears to be experiencing some nausea and is also becoming quite anxious regarding her medications, in particular the immunosuppressant, Cyclosporin. This is of course the most important medication and the only which must be taken orally and can’t go down her nasogastric tube. It tastes revolting, despite us disguisng it with a chaser of an antifungal full of sugar, and the side effects of it are why she requires all the other meds…So the daily challenge is to manage the administration of her medications so she doesn’t vomit them up while making sure she gets enough feeds. At her hospital appointment last week, she had lost a small amount of weight, so we were losing the weight battle a little, due to her not receiving enough feeds. This is partly due to the need to put the feeds on hold or slow the infusion rate around the administration of her medications to try to prevent her vomiting. If her feed rate is too high while she sleeps, she wakes up nauseated. We can’t dial the rate of her feeds up to catch up, as this will also cause her to vomit or lead to her persistent diarrhoea becoming worse and more frequent. Amongst all this, Orla has zero interest in eating still and I possibly wouldn’t either!! As you can see, from the photo below, there are a number of medications (this is her morning lot) she must have and this picture doesn’t include the Cyclosporin (nor the accompanying chaser) which is given at a different time in case she vomits.
Last Tuesday night, Orla started to vomit as we put her in her cot – not long following her cyclosporin. When this happens she becomes quite upset but it passes relatively quickly. This time it was different. She was gasping for air and a bit flat following the vomit followed by drowsy and just not herself….After deliberation, Ed initially ringing the ward at RCH, we made the decision to call an ambulance – after everything she and we have been through we are not prepared to take any chances. The paramedics were very nice, but, of course when they arrived and we told them about Orla’s condition and that she recently had had a bone marrow transplant, the only advice they could give us was to head to the Royal Children’s Hospital!! We asked them if they would mind checking the level of oxygen in her blood and heart rate, which thankfully were both ok. We waited for a bit and then Orla seemed to return to herself and as a bonus got to sleep with Mum that night! Although the paramedics suggested it would be a good idea to take her to RCH they were however happy for us to make the call. We watched and waited and then felt it would be more risky to take her into the emergency department full of bugs. When speaking with the transplant coordinator the next day, she suggested from our description, Orla choked and the energy she used to protect her airway exhausted her and made her drowsy. The experience however did make her even more sceptical of her medication for a few days. We have since devised a few strategies and she is doing ok for the moment although we are using anti nausea medication regularly which the doctors would prefer us not to!
Tomorrow, Orla will have a needle inserted into one of her hip bones to aspirate some of her bone marrow so it can be examined closely under the microscope. This will hopefully confirm the great results we have received a little while ago which measured how much of her blood cells are male (from the donor) compared to female (her own which survived or regenerated following the chemotherapy). Looking at the marrow itself will give an even clearer indication at what is going on. As the bone marrow aspirate involves a general anesthetic, we thought we would take the opportunity to do a few extra things, it would be a waste of an anaesthetic otherwise! So tomorrow Orla will have her Hickmans line removed and her nasogastric tube replaced. Removing the Hickman line is a big milestone. This has been decided with careful consideration by the BMT doctors as if she needs an IV infusion, more than likely blood transfusion or immunoglobulin, now she will need a line inserted into one of her veins to do so. The doctors and I agree that the risk of infection is greater with the Hickamans line in than her needing intravenous access for anything else. It will be a great relief for Orla to have a bath without the concern of the Hickman site getting wet and not having to wrap it in glad wrap and tape it at bath time time. We decided to replace the nasogastric tube as it seems she may need it for a few months yet and 4 or 5 months is the lifespan of a nasogastric tube normally. Usually, both the Hickman removal and replacing nasogastric tube would not be performed under anaesthetic but Orla would thanks us if she knew I’m sure. Finally, the ear nose and throat doctors are going to have a look in her ears while she is asleep to check her grommets, again an easier task while she is unaware!