Today: T+11

  

International Nurses Day today, and we as a family appreciate the nurses of the world.

We appreciate them spending 2 hours to change the dressing on Seth’s hands because it is too painful to rush.

We appreciate them taking the time to explain what they are doing and why.

We appreciate them taking the time to make sure we, the parents, are ok. (even though that is not their job).

We appreciate them dealing with traumatic events and then coming to our child and putting on a brave face.

We appreciate that if they are worried, or panicking, we don’t know about it.

We appreciate them making Seth laugh playing with him and building his trust so he is happy for them to do their work. Making this all that bit less stressful for him.

We appreciate them working constantly hard for their 12 hour shift to make sure Seth gets the drugs he needs. Seth is currently require 12 intravenous medicines per day. One of these is 24 hours a day, another 20 hours a day and quite a few are more than once a day. The shortest is half an hour but the rest are all an hour – and that is without a flush. All this with only 2 lines and a child that often needs little extras such at blood, platelets, magnesium, potassium and the like.

We appreciate them answering our seemingly never-ending questions;  going away and getting us an answer they’re unsure of, and not telling us what we want to hear because that would give us false hope.

We appreciate them taking a later break because Seth’s in pain

We appreciate them taking the time to learn about a child with complex health needs and adapt their practices to keep them safe.

So thanks to all the nurses in the world. You’re doing alright!

Today we returned to our bubble – as a BMT parent it is the place you feel most safe. But mainly it is nice that we were able to come back as planned. The trial Seth was on is a 4 day trial so was always planned to end today, however, if Seth had needed intensive care he would have stayed there. It’s always nice not to need it.

The numbers in his blood (liver, kidneys, inflammation etc) are all good. They are not perfect and won’t be for a long time, but for Seth on day 11, they’re not getting worse and that is a good thing.

The hair is gone now. It starts falling out slowly and then just falls out in clumps. When it began falling out more it was long and patchy so we asked the play specialist to come and shave it off…..Seth though she had taken all his hair and made him bald! Haha – until I reminded him that the medicine would do that and i got a sigh and “o yeah”. Today we showed him what his head now looks like and he says he quite likes it! Hopefully he will also be happy when it comes back!

His skin is starting to setting, it is quite flaky at the moment and his ankles, toes, heels, armpits and neck are still sore to touch but slowly getting a little less angry each day.

His hands are still so sore and the patches where the skin had become raw have now joined up. However, we had someone from Burns and Plastics come and see him yesterday and they have recommended a non stick dressing which has some silver in it that will help prevent infection. Unfortunately there is nothing more that we can do until the graft starts taking and he starts growing back the skin. In order to help him with the pain when we took the bandages off yesterday he was given some Ketamine and Midazalam. The really helped and he was not screaming in pain like he has been the last few times. But he had to have a bit extra Ketamine, which made me a bit sad because he must have been in complete agony the previous times for him to need so much medication to help him cope. Hopefully it will start healing soon. At the moment all we can do is try to keep it clean and infection free whilst managing his pain. Luckily when it is bandaged the pain is manageable with Fentanyl which runs 24 hourly.

Over the weekend we have been having Lymphocytes showing in his white cell count. This has been analysed and shows that Seth has 1500 T cells (Gamma Delta) in his blood. These could be the cells they gave from Nik as they only gave Gamma Delta cells. Also the Neutrophils have been coming in, but then going down again (0.03 then 0.01 then 0.3 today). Were waiting now with baited breath. Lymphocytes coming in before Neutrophils could be a sign that the previous graft has come back – therefore evidencing rejection of the new cells. Or they could be Nik’s cells floating around in the blood attempting to fix the things that are inflamed in Seth’s body. We just have to wait and see what happens and keep taking it day by day

Today: T+9

So since my post yesterday there have been a few changes…….

Seth was on the CPAP machine again for 12 hours over night as part of the SCARF research.

He had the most settled night he has had in a while, and today has been maintaining his oxygen level WITHOUT the need for additional oxygen! He has been breathing a lot easier and his chest sounds better. Hooray! Towards the end of the day he did start to breathe a bit harder and needed additional oxygen when asleep. But its an improvement.

His cheeky little character is also coming back a bit and we sat on the floor to play paw patrol again today, although he again tired very quickly. He is just so determined not to be sick!

His hands remain sore but we are now only going to change the dressing every other day, and they have doubled the amount of pain relief he gets when he has a bolus. So that should help him a little with the pain. In addition he has been referred back to the tissue viability team who will know how best to dress the hands and ensure he is getting pain relief.

Fluid wise Seth is still retaining fluids, his genitals are less swollen, but he is puffy on his face and legs, and his belly is very distended at the moment. The doctors are continuing to monitor this closely and treating it with diuretics when necessary as well as giving him the minimal amount of fluid.

Being on the intensive care ward is stressful for Nik and I, and is creating some frustration and conflicting feeling (it may be that we are crazy BMT parents scared at leaving our safe little bubble!). Seth is doing well with the CPAP support and it seems to be helping him to improve. But we also feel like we may be compromising his safety in terms of infection. The nursing staff on intensive care are not BMT nurses and so work differently and have a different understanding to isolation nursing. So having Seth on the ward is a learning curve for them, but he is still not receiving the protective care he would receive on his normal ward. The strict isolation rules seem to not apply as much here, but if he needs it he needs it right? This may be fine and not an issue, but 9 days post transplant Seth is as vulnerable as it gets and we are worried.

Tomorrow we are going to speak with the relevant people to confirm what is absolutely necessary to protect Seth so that we can ensure that is happening. It may be that we are more cautious than needs be and he is already getting the level of protective nursing that he requires. At the minute Nik and I are feeling more stressed than we have throughout this process so we need to clarify and understand and then consider our options. As removing him from the research and back to his ward may be detrimental to his breathing and could lead him to need to be in intensive care, which would not change anything anyway.

Now….about that magic…….

It looks like engraftment has begun, he has some lymphocyte numbers coming up in his blood. At the moment that means nothing as they need to check further to see what is going on. But hopefully it is the sign that the magic is home and beginning to settle. This is good – it what he needs, but it may cause him to go backwards again before he starts improving. The new cells might go to all the areas we have problems at the moment and cause further inflammation trying to fix things.

So today was a good day…..tomorrow who knows were still taking it day by day.

Today: T+8

So a few more days have passed and I don’t know if I am saying things are better or worse. It’s such a confusing time at the moment. Somethings are looking better, but then again he seems to be struggling in other ways.

His hair has started to fall out. We’ve talked to him about that and he really doesn’t care. Which to be honest neither do we. Obviously you don’t want your child’s hair to fall out. But we know why it is and it is the least of our worries. It will grow back!!

Seth’s skin is a bit better, a Treosulfan rash is like REALLY BAD sunburn, the skin swells, goes bright red and is hot to touch and incredibly sore, then as it gets better it starts peeling. Ignoring his hands of the moment we appear to have gone through the worst of it and although his legs are stills red and swollen, they are starting to peel and are looking a lot better than they were.

However his hands are still agonizingly painful. He is able to rest when they are bandaged up. However, the minute we take off the bandage to change it the air hits them and he screams in pain. I have started giving him bolus’ of Fentanyl every 20 minutes for an hour before we change his dressing, but it does not seem to help him when the air hits his hands. The sores appear to have got bigger, but they are dry and not weeping. It is the chemo attacking his already damaged hands and unfortunately we have to wait for the effects to go away. We just have to try to keep him as comfortable as possible and infection free until then.

His mouth and tongue are covered in ulcers, but they are bleeding a lot less and 4 times a day mouth cares appears to be enough to keep his mouth clean and free of mucus build up.

As his skin and mouth appear to be getting better, his breathing has slowly been getting worse. His oxygen requirement has been increasing and he is clearly working harder to breathe. Chest X-rays have shown some changes, but only very slight. However, this was enough for him to be suitable for SCARF research being conducted here and at Great Ormond Street Hospital. It is fairly common for children with immune problems to develop breathing difficulties. Sometimes these get so severe that the child needs assistance via intrusive ventilation. There has been some research recently that has evidenced that non intrusive early intervention reduces the likelihood of the patient going on to need intrusive breathing support later on (i think about 60% of the time). The non intrusive ventilation is via CPAP (Continuous Positive Airway Pressure). We were asked if we wanted to take part in the study, which we thought about and decided to go ahead as the CPAP will give Seth rest to be able to recover and not have to put as much effort into every breath. Once our consent Seth’s name was put into a computer which chose whether he would be part of the control or test group. Seth was in the test group. This means that he has been transferred to the Paediatric Intensive Care Unit and for 12 hours a day is on CPAP ventilation. It’s a four-day trial so as long as during that time he does not get to the point where he needs intensive care he will return to his normal room.

Infection wise we still do not know what is causing the high inflammation markers or the high temperatures. However, the marked in his blood have been going down for the last couple of days – fingers crossed they keep going!

In himself Seth is coming back slowly. Yesterday he insisted he was playing Paw Patrol and that he was getting down off his bed to do so. He managed to make it down there and get all the pups in the lookout, however, then was tired and I suggested he got back in bed. It is heart breaking watching him desperate to just play and it be such a struggle for him.

Still no sign of the new cells, but that’s not expected just yet. We could see them anytime from today onwards so – BLOOD RESULT WATCHING is on!!!!

The past two days have been better – starting to go in the right direction. But things could change back very quickly, and might do so when the new cells really start to engraft. We just have to wait and see and take it day by day.

having a nap during time off the CPAP. this is just a normal mask with hudrated oxygen going through it.