Today: T+68

Sorry it has been a little while! I started writing this post, and then my laptop had a falling out with the wifi. However, they are now communicating again so i can continue!!

In the last couple of weeks we have had one brilliant change……we have been allocated a halfway house. Hugo and I are now living at the house. Seth is allowed to be at the house all day, unless he needs medication or a transfusion. However, he must stay at the hospital at night because he still has to have TPN (intravenous nutrition). He is still not eating any food. He is showing interest in food which is an improvement so hopefully as each day passes we will get another day closer to him eating again. He is tolerating milk better now so we are able to increase it 1 ml every other day which means he is getting better nutrition through his gut.


  
In himself Seth is OK. His mood is good, however, it is subdued. When we first got the halfway house, Seth lost a bit of his sparkle. It was a little like it was a bit too much for him. He also found Hugo difficult to fathom. He isnot the peaceful little newborn Seth remembers. He now takes Seth’s toys, and does not understand the rules of sharing. Hugo also demands a lot of attention, he has to be watched. Seth isn’t used to that. He has not had the opportunity to grown with Hugo. So we make a big effort everyday to make sure we spend quality time giving Seth attention alone and with Hugo.


His skin is brilliant at the moment!!! The GVHD rash seems under control, we have been able to reduce the steroids so he is on 5mg one day and 0mg the next. This is still IV at this time, but will change to oral when we drop next time which will be to 2.5mg one day 0mg the next.

The Adeno virus is back, but only at a low level. The HHV6 is still at the same level. But neither are affecting him. So at the moment we are not very worried about them – they are managed and hopefully as we reduce the suppression his immune system should come up more and be able to deal with the virus’.

So things seem to be going well at the moment. Things are just taking time. We have worries, but they could be worse.

Today: Turning 5 in hospital…..

Yesterday was Seth’s 5th birthday. He is in the Great North Children’s hospital in isolation. So at best he  was allowed into a room on the ward to be with his dad, baby brother, grandma and me to have a little birthday celebration. I had ordered a cake for his birthday party (which he now won’t be having) so brought it with me along with ALL his gifts from family and friends.

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Decoration by the play team in the hospital.

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Waiting for the main man to arrive – his brother clearly overly excited :/

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Opening presents

Happy with his Madagascar DVD

Happy with his Madagascar DVD

A fireman sam DVD - one that he actually doesn't have!

A fireman sam DVD – one that he actually doesn’t have!

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Thats a green dog…..called Stevie after our dog at home

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Caaake! The thing he was most excited about for his party – Paw Patrol Cake….even though he doesn’t like cake!

Dressed in his finest mis-matching joggers and t-shirt with toothpaste round his mouth, Seth managed to open his gifts, cut his cake, and identify that he had indeed received “loads” (how people found so many things this child doesn’t already have I don’t know!), before he began to go a little quiet and tired. He asked to go back to his room. This instantly made me concerned and not long after he spiked a temperature of 38.3 and spent the rest of the day in bed. His respiratory rate, blood pressure and heart rate where very high which is consistent with a high temperature. Despite burning up Seth was complaining of feeling cold.  The birthday was over (for now).

Staff were in and out of his room most of the day and it was noted that the infection in his lungs may be fungal infection – which is very hard to treat in someone who is neutrophenic (no white cells, therefore no ability to fight infection). So they began antibiotics to treat this whilst they awaited the results of a BAL (Bronchoalveolar lavage) from Friday last week.

Seth made efforts to play with some of his presents and watch a DVD, but he was feeling so poorly he didn’t manage much. The doctor was concerned about his presentation and suggested that if his oxygen level began to drop they would need to consult the intensive care unit for early intervention. Luckily his oxygen level was the only thing that stayed good.

Although him going into the room to open his presents did not trigger his temperature, we decided that we will no longer bring him out of his room. It is too dangerous. The ward staff agreed and Seth is now in total isolation. This means that only Nik, me and one other named person are allowed in his room and we have to wear a gown to cover our clothes at all times. We have to check our temperature and if it is increased we are not allowed contact with Seth.

What is going to be hardest for Seth though is no contact at all with his baby brother. Seth’s always asks to see Hugo before anyone else when he comes in from school. Now they have chats and conspire via FaceTime.

Brotherly love

Brotherly love

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Seth and Hugo having a wee chat

The next day (17/02/14) – Seth had improved a lot. His temperature had come down and appeared to be consistently staying down. He was also much more himself, still quiet, but he managed to play today and eat a bit of food (which is good as he has gone from 11.5kg to 11.2kg in less than a week).

Today we have had a meeting with Seth’s main consultant. Dr Andy Gennery (click here to see a clip of Andy talking about BMT). Andy confirmed what we thought and the only option for us now is a second bone marrow transplant, this time it will follow 8 days of chemotherapy. But Seth is too ill at the minute to survive a transplant, therefore we need him to get better and then a transplant will be arranged as soon as possible. The marrow will come from either Nik or I because advancements in medicine mean that they can manipulate the bone marrow taking out what will cause harm and leave in cells that he needs and that will help him fight infection. This means that there is a longer period where he is at risk, but if it works we should not have issues with Graft Versus Host Disease

So the next 8 weeks couldn’t be more crucial.