Click here to read week 4 of Bens Journey
Week 5
Day 29
27.02.2016
Bens neutrophil count, from this mornings blood sample, is now 1.24. This is quite a big jump from yesterdays 0.63. This news has really given us a lift, as its great to see Ben making some real progress. The high temperatures are still persisting, the IV paracetamol is just about keeping them under control and manageable. The doctors are certain that these temperatures are being caused by the engraphtment, so they are still satisfied to just monitor it closely. Thankfully Ben doesn't seem too bothered by these temperatures, and is still quite happy in himself.
Bens Auntie, Orla, came to visit today. Again it was nice for us all to see family, and it really helps shorten the week when we have visitors. Orla could only see Ben from behind that line, which distinguishes the filtered clean air from the unfiltered air. Ben reacted very well to seeing her, seeing familiar faces seems to give him a bit of a lift. He is probably getting tired of looking at his Mammy and Daddy 24/7.
Day 30
28.02.2016
We were anxiously waiting for the daily blood results to come back from the lab this morning, to see if Bens neutrophil count stayed over 0.5 for the third consecutive day. Just before midday the nurse brought us in the results with a big smile on her face. She happily informed us that Bens neutrophil count had increased again, and Bens doctor has agreed to reduce the isolation boundaries, therefore moving us into "purple isolation".
This means that we can give our little boy that long awaited kiss, that we have been so badly wanting to do for 5 long weeks now. It felt amazing to kiss our son again, its a simple thing that we all take for granted, and we certainly wont anymore!! We are also allowed to bring Ben out for short walks around the hospital grounds and to a nearby park. Making sure that we keep him well clear of crowds and busy places.
He still has the high temperatures, so we are in no rush to bring him out just yet. We have waited this long, so no point in rushing it now. We will see how he is tomorrow!
Day 31
29.02.2016
Ben still requires oxygen only at night while he sleeps. It is still a very tiny amount that he needs, but the doctors are keen to find out the reason behind it. They have requested a chest x-ray to be done on Ben today. A mobile x-ray machine arrived up to Bens room this morning and they took the x-ray of his chest, while he lay on his cot. This x-ray may show some sign of infection on the lungs, we will have to wait for the x-ray report.
Today we got to bring Ben out for a little walk. The weather was mild, and Bens temperatures were less frequent. The nurse encouraged us to bring him out, if only for 30 minutes.
It was so strange to finally be able to take Ben out of his room, it was pretty daunting to be honest. What if he became unwell?? What if his central line leaked?? All these questions going through our mind, but we were reassured by the nurse that he was ready to get out of his room for the first time in 5 weeks.
We had to keep the rain cover over his buggy, while we walked through the hospital to reach the exit. When outside in open spaces the nurse said we could remove the rain cover, but we were happy to leave it on for now, maybe in a few days we might remove the cover!!
We walked to a nearby park, and back again to the hospital. The walk only lasted 30 minutes, but we cant describe how happy we felt to bring Ben out into the fresh air again. It is a massive step forward for us on this journey.
The x-ray result came back this evening and the result was normal. Which means his chest/lung area looks to be ok. The doctor is happy with this result for now and has advised to keep trying to reduce his oxygen requirement at night.
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| Delighted to be going outside! |
Day 32
01.03.2016
Bens Grandad Tony came over to visit today. We were delighted to see him, and he was even more delighted to see us and especially his grandson Ben. Unfortunately Tony could not cross the air filtered barrier in Bens room either, but because Ben is now in purple isolation, we could all go out for a walk together this afternoon.
It was another nice day and thankfully the rain held off again. We went to the same park as yesterday, but this time we ventured further to a small lake located in the park. It was lovely to catch up with Tony and fill him in on Bens progress, he was obviously delighted to hear all the positive news we had for him.
We didn't hang around to long and we went back to the hospital after 45 minutes, as Ben was due his evening medications through his central line.
Today was without a doubt Bens best day since his transplant. He had lots of energy all day and plenty of smiles for his Grandad. It was great to see him like this again!!
The temperatures are still on the high side so that is still a slight concern, he develops a rash when he has a spike in temperature. This rash clears up once the paracetamol has kicked in.
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| Proud Grandad |
Day 33
02.03.2016
Grandad went home today, he definitely gave Ben a huge lift yesterday from the minute he walked into Bens room. It is always hard to say goodbye to family members when they have to return home, as we would all love to be going home with them, but that will all happen when the time is right!!
Bens respiratory rate (number of breaths per minute) has increased this afternoon, its now in the high fifties. The nurse is going to check this every hour to see if it gets worse. The doctor has mentioned that he might request a CT scan of Bens lungs, this would give a much clearer picture then the previous x-ray could show, and therefore they could see if his lungs are still affected by an infection. This CT scan might hopefully give them more answers as to why Ben still requires oxygen while sleeping. They will let us know the plan as soon as the team makes a decision.
Day 34
03.03.2016
Ben had a slight increase in his oxygen requirements overnight. His weight has increased significantly and he looks quiet puffy. The doctor reviewed him this morning and prescribed him a dose of furosemide. This helps to clear any extra fluid that his body is holding onto, the doctor reckons that is why Ben required more oxygen through the night. Hopefully he is right!!
Ben still has the feeding tube inserted through his nostril and into his stomach, which has been the only way we have been able to give him the fluids and the nutrients that he needs. He has not taken anything orally for a couple of weeks now. Throughout each day we offer him his bottle, but he has always refused it, probably due to the effects that the chemo has had on his gut.
Today Ben drank some milk from his bottle again, this is another big step forward on his road to recovery. By this evening he had drank nearly 200ml, which is a great start. He is nibbling at some solid foods again also. We just have to persevere and try get him interested in his food again.
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| Trying a biscuit! |
Day 35
04.03.2016
Today is Day +21 (21 days post transplant). Bens neutrophils are now at 3.43 today, they have been making steady increases each day. The time has gone so quickly since transplant, as it has just been so busy each day on the ward. Doctors are in more frequently checking on how Ben is doing, we are now more involved in his day to day care, as we are learning how to give his oral medications and also learning how to change and clean his central line dressing, among other things. All of which makes our day go by really fast, which is a great thing.
Ben had a CT scan this afternoon. We had to bring him to the ultrasound unit, where they performed the scan. It only lasted 5 minutes but it was important that Ben stayed as still as possible, which thankfully he did. The results of this scan wont be available to Bens doctors till tomorrow morning. Hopefully everything will come back ok regarding his lungs, and its nothing to serious.
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| Visiting the ducks!! |
This week has proven to be a pretty good week. Getting out into the fresh air is a big step in the right direction for us. Ben is no doubt making great progress overall. Obviously the oxygen requirement while he sleeps is a concern, hopefully they can get to the bottom of that issue next week. The team are pleased with his progress to this point. "Ben is definitely on the right track" the words used by the consultant today.
We are both happy with Bens progress, we feel he is improving and getting stronger with each day.
True strength is when you have a lot to cry about,
but you choose to smile and take another step forward instead
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