Ben's Transplant Journey - Week 4

Week 4

Day 22
20.02.2016

Ben has developed a high temperature today. The nurse has given him some paracetamol to help bring it down. Bens doctors have been informed of this temperature, and they are happy just to treat it with paracetamol, as no new viruses or infections have been detected in Bens blood.
Apart from the spike in temperature, everything else is still ok today. He doesn't seem to be bothered by the temperature and is managing to get up to play every now and then.

Play time

Day 23
21.02.2016

It was a quiet day today, as the weekends usually are in hospitals. Ben is having a pretty good day and is still keeping that big smile on his face.
We skyped our family back home this afternoon. It was really great to see and talk to Bens Great Grandad, Brian, he was thrilled to see Ben and to hear that he was doing well.
There is an incredible 91 years between Ben and his Great Grandad, and they truly are both as inspirational as each other, both in their own special way!!
With Ben having this treatment abroad, its difficult for us not to be able to jump in the car and go home to see our families whenever we like. So moments like today on skype will have to do for now!

Bens temperature still spiking throughout the day, they will review him again tomorrow morning and decide what approach they should take.

A very special Photo - 
Christmas 2015 with his Great Grandad

Day 24
22.02.2016

Niall's Mam, Carol, came over to visit us today. It was absolutely fantastic to see her, Ben brightened up the minute he seen his Nana enter the room.
With Ben being in isolation, the ward is very strict on how many "carers" he can have during his stay in hospital. They only allow four carers to one patient. This is to keep the risk of infection to the patient as low as they possibly can, and it is understandable.

Being a carer means that you can have full access to Ben, just like we do as parents. They can do pretty much everything you would normally do for Ben, except kissing of course... for now!! We asked Ben's two Granny's to be his 3rd and 4th carer while he is here in hospital. We are obviously both his other two carers.
So with Carol arriving over for a couple of days it gave Mammy and Daddy a chance to get out for a meal together, we had peace of mind knowing that Ben would be perfectly fine with his Nana. This was great to get out of the hospital environment for a couple of hours, and feel normal again, if only for a short time!!

Nana and Ben

Day 25
23.02.2016

Ben had a great day yesterday with his Nana, it really did seem to give him a lift seeing a familiar face again. Carol loved spending time with her grandson also.
Unfortunately Niall seems to have got food poisoning from the meal we ate together yesterday. He has been vomiting since yesterday evening. This means that he cannot come into see Ben for at least 48 hours from the time the vomiting stops, in fact he cannot come onto the ward until he is sure its cleared up. Thankfully Carol is still here to keep Orielle and Ben company in the room. Hopefully Niall will get better soon, for everyone's sake!! We certainly wont be dining in that restaurant again I can assure you!

Carol traveled back home to Ireland this evening. Ben had a really good couple of days while she was here, it was great to have an extra pair of hands to help us out, especially because Niall was sick. Saying goodbye to Carol was hard, but she will be over in a few weeks again.

Kisses!!

Day 26
24.02.2016

Bens temperature is spiking every 6 to 8 hours now. The paracetamol is just about keeping it under control and the nurses are keeping a very close eye on him. He gets very unsettled when the paracetamol wears off, he can only have a dose of it every 6 hours. At the moment they are giving this paracetamol orally, but they are considering giving it IV (Intravenous) through his central line if the temperatures persist. This way might have a better effect for Ben.

Ben has totally stopped drinking his bottles now. So that NG tube that he has in from last week has now become very important to him. He is getting a high calorie feed down this tube every 4 hours, it is crucial he maintains his weight. We have been shown how to use this tube and flush it after feeds.

I'm still standing!!

Day 27
25.02.2016

They have started Ben on IV paracetamol this morning, hopefully this helps bring down these persistent temperatures.

Remember one of the previous weeks i told you that we should, and hoped to see a sign of new cells developing around Day +10 (10 days post transplant).
Well today is Day +13, the morning blood results are back from the lab, and we can finally see some movement in Bens cells (Neutrophils to be exact). They have jumped from 0.00 to 0.27, a small increase but a significant one. "Slowly does it", said the doctor, who ensures us that the cells should gradually increase little by little from today on. Great to see the transplant finally starting to work, fingers crossed it continues like this.

Dad was eventually allowed back onto the ward today and back into see Ben. It was a long three days without him for Mammy and Ben, but it was hard on Dad too. The days really felt longer for both of us!
We wont be eating out in any new restaurants for a while, we'll stick to the places that we know!!

Fed up!!

Day 28
26.02.2016

Blood results from this mornings sample have shown another increase in the new cells. This is such positive news for us, and it now feels like we are making some progress.
Today his neutrophils have jumped from 0.27 to 0.63, his little body must be working overtime producing all these cells. This process that is occurring now is called engraphtment. Engraftment is when transplanted stem cells enter the bloodstream, they make their way to the bone marrow and start making new blood cells. Ben has a rash that flares up when he has those spikes a temperature, this is all down to the engraphtment process, and the doctors are happy just to monitor it.

If these new cells stay over 0.5 for three consecutive days, Ben can be moved into "purple isolation". This will mean we can take him out for short walks and finally be able to give him that kiss that we have so badly been wanting to do for a long 5 weeks!


Its an exciting time for us now, waiting for the blood results each morning and hoping we see an increase in the cells.
Ben is just plodding along, getting through each day with a smile on his face. Hes oblivious to the worry and anxiety that Mammy and Daddy are going through, but with that smile of his, he's keeping us all strong and positive!! Because Ben is still so young, thankfully he wont remember any of this!

Slow progress is better than no progress 

Ben's Transplant Journey - Week 3

Click here to read week 2 of Bens Journey

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Week 3

Day 15
13.02.2016

The day after transplant!

After a hectic but monumental day yesterday, we woke this morning feeling relieved that was all behind us. Around 1am this morning Ben had a spike in temperature. His heart rate also increased significantly, even while he was asleep. We thought that this was the start of the reactions to the transplant. The doctor prescribed paracetamol for Ben. The nurse checked his temperature every 30 minutes. Thankfully around 4am his temperature returned to an acceptable level. Ben had a good sleep even though all this was going on. It was a long night for Daddy, who was on hospital duty last night!!
This morning Ben seems ok, he is still very tender from the new line he got yesterday. His body went through a lot in the one day, poor fella!! It is impossible to predict how Ben will react over the coming days to the transplant. The doctors have said, from their experience, no child reacts the same. Each transplant patient writes their own story, post transplant. We will just have to wait and see what story Ben will write, we cant look further then the present. One day at a time!!

Niall's cousin Brigid, very kindly, came to visit us from London this morning. It was really great to see a familiar face on the ward. She couldn't come in contact with Ben unfortunately, again to prevent the risk of infection, but she could sit in a designated visiting area in his room. I think Ben thought she was a doctor at first so he was keeping a close eye on her. He eventually gave her that big smile of his!!

Day 16
14.02.2016

Valentines Day!!

Ben had a really good morning, plenty of smiles from him. He looks to have plenty of energy. The doctor came in to see him and was amazed at how active he still was, this was nice to hear.
Although he isn't really eating any solid foods since Friday, he is still drinking his bottle. This is giving him the calories he needs for now, however the dietitian will look at his meal plan in the morning.
Bens oxygen saturation levels are dropping again at night. It seems to happen when he enters into a deep sleep. They have decided to put the nasal prongs on him for the next week or so and just turn on the flow of oxygen as required. Its not a lot that he requires but still requires it all the same!! Brigid went back to London this evening, it was great to have her visit. The two days flew by while she was here!!

The play specialists, Laura and Paula, made a beautiful Valentines Day card for Mammy and Daddy, from Ben of course!! When they were painting with Ben during the week they managed to sneak some of his painted footprints out of the room without us noticing. They used these to make a lovely card/keepsake for us. They really do think of everything in here, it was so nice of them! Daddy was out done by the nurses, which wasn't hard!!

Cute

Day 17
15.02.2016

Bens morning blood results came back from the lab around 10am. These results showed that he would require a blood transfusion today. This will be his 2nd blood transfusion since his treatment started. They also showed that he would require a transfusion of platelets today too, this was a first for Ben. The doctor explained that this was again perfectly normal at this stage of treatment and it wont be the last of these transfusions. The chemo is obviously doing its job and killing off Bens old cells. As the weeks go on and Bens new cells start to develop we should see less and less of these transfusions.


Day 18
16.02.2016

Nothing much happening today. Ben is doing really well. The only concerns at the moment is his sore bottom and the requirement of oxygen at night. Minor concerns really in the whole scheme of things.
The doctors are happy with his progress to date, which gives us a huge boost when we hear this. It's great to hear good reports from the doctors, it keeps us feeling positive, which is the way we have to feel throughout this journey.

Ben has stopped drinking his bottle and therefore is not receiving the amount of calories he needs to maintain his weight. The dietitian has decided to put him on a high calorie milk to resolve this issue. Because he wont take any fluids orally they had to use a NG (Nasogastric) tube. This small tube is inserted through his nose, which then enters into his stomach.
We have been prepared for this NG tube, as it is common for transplant patients to go off their meals during treatment. Ben also required this tube while his was a patient in Our Ladys Hospital Crumlin, back in March 2015, so its not so daunting for us this time. This will not effect Ben's breathing or swallowing in anyway, and it is not painful for him. After a day or two he will hardy notice the tube at all.

Loves chocolate ice-cream

Day 19
17.02.2016

This morning the doctors received the result of a BAL test, which was carried out when Ben was under general anaesthetic last Friday, while getting the new central line inserted.
They wanted to check for signs of infection in his lungs. A BAL is a procedure in which a bronchoscope is passed through the mouth or nose into the lungs, fluid is squirted into a small part of the lung and then collected for examination. It is commonly used to diagnose infections in people with immune system problems. They decided to take the opportunity to carry out this test as Ben was already under anaesthetic for the removal and the new insertion of the central line.
This test result showed a tiny trace of a common virus in Bens lungs. They said they will have a chat with the team of consultants to see what is the best way to deal with this. They may decide not to intervene as the trace of the virus is so small. We will have to wait and see!!
It is a slight worry for us to hear this, as Ben is still immune compromised.


Day 20
18.02.2016

Bens doctor came into examine him this morning, as he does every morning. His chest sounded clear using the stethoscope. The team have decided to treat the virus that they found in Bens lungs, by putting him on a new anti-viral medication. The only concern for the doctors introducing this new medication, was that this particular medication had a high risk of affecting Bens kidneys. He said they had to weigh up the options and try look for a balance, they feel that this virus needs to be treated incase it develops. They assured us that they will monitor Bens kidneys closely while he is on this medication. He will receive plenty of fluids to help prevent kidney issues arising.
They will also now stop his regular anti-viral medication that he has been on since he was first diagnosed with an immune deficiency. So much medication its hard to keep track of it all.
Over the last couple of weeks we have built up so much trust in the nurses and doctors on this ward. Its very important that we have full confidence in them, and we certainly do!!

Outside the hospital

Day 21
19.02.2016

Post transplant, each day is numbered from the actual transplant day. For example, the day after transplant is "Day +1". There is no such thing as week days or weekends in here, everyday is just a number and one step further to Bens recovery.
So today is Day +7. We have been told that we should see some growth in Bens new cells around Day +10, but obviously this does vary with each patient. These cells are monitored every morning from Bens blood samples. We have a chart on the wall which the nurses update every morning when the blood results come back from the lab. Bens cell count is still on 0.00, as each day passes we are anxiously waiting for this figure to increase.
The consultant over seeing Bens treatment came in for a quick visit today, he said everything is looking good, and the team are happy with Bens progress. He did say his cells may take another week to come show in his blood results but just be patient and give them time.
We are delighted to hear that all is going according to plan, and if the doctors are happy then we are certainly happy!! A nice way to end the week!

Ben's Room

Well that is another week over and thankfully not to many problems to report. Ben has been quite well throughout the week and seems to be responding well to the transplant overall.
We are hoping and praying to see some sign of his new cells developing over the next week or two. Fingers and toes are crossed!! But until then we are just concentrating on keeping Ben well and keeping the risk of infection as low as possible, hand washing, hand washing and more hand washing is the key!!

Stay Positive

Better Days Are On Their Way