Click here to read week 5 of Bens Journey
Week 6
Day 36
05.03.2016
Ben had another good night last night, he drank a full bottle over night and was looking for more of his bottle again this morning, if he keeps this drinking up we might not need the feeding tube anymore. We will leave the feeding tube in place for now, and use it only as required. Bens respiratory rate has slowed down again to a normal pace, which is good news.
The result of the CT scan, of Bens lungs came back this morning, and just like the previous x-ray the result has came back normal. This is obviously a positive result for us, but we are, like the doctors baffled as to why Ben requires the trickle of oxygen while he sleeps. The doctor is happy to keep trying to ween Ben off the oxygen, and maybe push him a little to see how his oxygen saturation levels react.
Thankfully Ben has not spiked a temperature today, this is the first day in a couple of weeks that he has had no temperature. Hopefully this continues!
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| Happy Chappy!! |
Day 37
06.03.2016
Mothers Day!!
Ben has no temperature during the night, he has been drinking his bottles fine since yesterday morning, he also had half a bowl of porridge this morning and we managed to reduce the oxygen requirement down to 0.1 of a litre over night. What a great way to start Mothers Day!!
Just like Valentines Day, the play nurse Laura, helped Ben make a special Mothers Day card for his Mammy, she also made a key ring with beautiful pictures of Ben inside it. As i said before, the staff here are so thoughtful, even though everyday things are slightly different for us at the moment, they really go out of their way to try make it all feel as "normal" as they possibly can!
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| For a very special Mammy!! |
Day 38
07.03.2016
Another good night last night. Ben is taking plenty of fluids now and is easily meeting his daily fluid target. He ate a good portion of his Porridge again this morning. This is all positive news, but it is crucial that Ben continues like this, for him to get through this stage of treatment and move onto the next stage.
Bens blood results from this morning show that his potassium level is slightly low. It is common for patients to require a top up of potassium during treatment. The nurse gave Ben a small amount of potassium this afternoon through his central line.
No temperatures again today and therefore they have stopped the IV paracetamol.
Day 39
08.03.2016
Bens Granny Gillian, came to over to visit us today. Gillian is also a named carer for Ben during his stay in hospital, which means that she can cross the air filtered line in Bens room and have full contact with Ben like we have. She was absolutely thrilled to see Ben again, it must have been a long 6 weeks for her too. She was the first one from our families to be able to give him a big kiss, because he is now in purple isolation. We all went out for our usual walk this afternoon, but it was colder than we first thought outside, so it was a very short walk this time.
Mammy and Daddy took the opportunity to get out together for a meal this evening, while Gillian was here. Ben was delighted to have his Granny to play with him and he didn't even look twice when we left the room. We had a lovely meal and had a nice break away from the hospital environment, it gave us a chance to recharge our batteries. (No food poisoning this time!!)
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| Selfie with Granny! |
Day 40
09.03.2016
Ben pulled out the feeding tube from his nose this morning. It is common for young children to do this, as the tube might be irritating them, but he hasn't been bothered at all by this tube for the last few weeks. But today he got a hold of it while I was changing his nappy and out it came!! It is just held in place by some clear film taped onto his cheek so it didn't take much force to pull it out.
We let Bens nurse know what had happened and she decided to leave the tube out for a while to see how he manages with his oral feeds and oral medication. The last couple of days this tube hasn't been really used so maybe Ben can do without it. Time will tell.
Granny Gillian went home today. It was really great to have her over, and great to have an extra pair of hands to help us out.
Day 41
10.03.2016
We turned off the trickle oxygen that Ben was requiring last night around 10pm while Ben was asleep. The nurse wanted to see how he would cope without it. His oxygen saturation level dropped to 93/94% straight away but then steadied at that percentage level. A normal saturation level is 100% but the doctors are happy with anything above 90% for Ben. If it drops below 90% the oxygen will have to be turned on again immediately. He seemed to be managing very well, his respiratory rate was normal which is a good sign.
This morning arrived and the nurse told us that his level was fine all night, therefore no oxygen, he held his own. This was great news to wake up to.
The doctor came around to visit and was also delighted with this progress. He wants him to stay of the oxygen for at least three consecutive nights before he can be confident that he is not dependent on the oxygen.
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| Daddies Boy!! |
Day 42
11.03.2016
No oxygen required again last night!!
Saturation levels still holding at 94% while he sleeps this increases to 98% when Ben is awake. The doctor has stopped two of the IV prescription medications that Ben was receiving regularly. One of which has been changed to an oral form.
Today Bens doctor mentioned that we might be going to the "halfway house" within a week if Ben keeps progressing like he has been. This is amazing news for us to hear. It is the next step on the road to recovery and another step closer to home!!
The Halfway House a house, funded by The Bubble Foundation UK, that the hospital provides for each family who goes through the transplant treatment. The houses are located within walking distance of the hospital, so if there is any issues with the patient, expert help is not far. You remain in this house as a family for a minimum of 6 weeks, while the immune systems grows and matures.
For us that means Ben having a strong enough immune system so that he can fly on a passenger plane, where bugs and infections are sure to be rampant.
We see the halfway house as a significant mark on Bens journey, hopefully it will mean that we are "halfway home". So you can see why the doctor even mentioning this next stage to us has giving us such a lift and made us feel so happy.
Good things come to those who Believe,
Better things come to those who are Patient,
Great things come to those who
Don't Give Up
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