At the moment Minnie is having blood transfusions every 8 weeks. She needs them because her Pyruvate Kinase Deficiency causes haemolytic anaemia, which at the moment can only be relieved in her by regular transfusions. This is now a very normal process for us, but we know that blood transfusions are a serious procedure and can sound like a bit of a mystery to most people.
We arrive on Husky Ward at the Evelina Children's Hospital (behind St Thomas') at about 8:30, where we are greeted by lots of friendly familiar faces. The nurses and doctors we see are all great, and they make the ward a much jollier place to spend time.
We then get settled into our bed (and we hope that we get a bed with one of the comfy recliner chairs). Until recently Min had a cot, but the bed is much more comfortable for everybody. There are 6 beds on the ward, most of which are used for day patients who need transfusions, usually for sickle cell or Thalassemia.
Then the nurses take their observations, blood pressure, pulse rate, blood oxygen saturation, to make sure Min is in good shape for having a transfusion, along with taking her height and weight so they can calculate how much blood she will need.
By then I have usually asked what Min's Hb levels are, as we will have been in for a blood test the previous day. As she is usually somewhere between 7-8 at the moment, this is usually neither good nor bad news. Though she did go down to 6.6 in the phase after her cochlear implant operation, and she was 6 at her recent transfusion at the end of Oct after an 8 week interval, very low ...
The doctor then comes along to listen to her chest, ask about her general health, and confirm that it is ok to transfuse. It sometimes takes a little wait for the doctor to come round, and then the blood order can be confirmed.
Minnie has a portacath (or port) which means we avoid a painful cannula insertion on transfusion day. Magic cream is put on the port so putting the needle in doesn't hurt, but Min still cries and yells as she doesn't like being held still. But it is infinitely better than the endless failed cannula insertions we had to go through when Min was a baby, before the port was fitted. Once it took 8 attempts by experts ... that was very hard.
So once the port has been accessed and the blood has arrived, the transfusion can start. At the moment it takes around 5/6 hours for the pump to slowly get the blood in, at her recent Sept transfusion 325ml of blood took 5 hours and 5 minutes to transfuse. They take observations again after 15 mins to make sure there is not an adverse reaction to the blood, and again if they switch to an additional bag of blood.
So it is a long day, and if Min wants to wander around, or do some colouring or sticking at the table in the middle, I have to be right with her with her blood on the wheely stand. There is a play specialist who helps the kids to be entertained during a long day in hospital, and helps to distract them during procedures. It is easy to put the tv on, but not great to have it on for most of the day.
Usually I have grabbed lunch and a drink from AMT on the way up to the ward, and Minnie will have a lunchbox 'snack pack'. And Minnie usually has a nap.
Normally we are finished just before rush hour starts, so it is not too chaotic to get home. The needle is removed and we are then free to go. We also pick up her Exjade medication, which helps her to eliminate the excess iron she accumulates fro her transfusions.
So normal to us, and it is a great that it is only a day procedure. Sure we would rather not do it, but whenever we are in hospital we see kids who have to manage much more serious medical interventions, and we are always grateful for the (relatively) normal lives we lead.
We arrive on Husky Ward at the Evelina Children's Hospital (behind St Thomas') at about 8:30, where we are greeted by lots of friendly familiar faces. The nurses and doctors we see are all great, and they make the ward a much jollier place to spend time.
We then get settled into our bed (and we hope that we get a bed with one of the comfy recliner chairs). Until recently Min had a cot, but the bed is much more comfortable for everybody. There are 6 beds on the ward, most of which are used for day patients who need transfusions, usually for sickle cell or Thalassemia.
Then the nurses take their observations, blood pressure, pulse rate, blood oxygen saturation, to make sure Min is in good shape for having a transfusion, along with taking her height and weight so they can calculate how much blood she will need.
By then I have usually asked what Min's Hb levels are, as we will have been in for a blood test the previous day. As she is usually somewhere between 7-8 at the moment, this is usually neither good nor bad news. Though she did go down to 6.6 in the phase after her cochlear implant operation, and she was 6 at her recent transfusion at the end of Oct after an 8 week interval, very low ...
The doctor then comes along to listen to her chest, ask about her general health, and confirm that it is ok to transfuse. It sometimes takes a little wait for the doctor to come round, and then the blood order can be confirmed.
So once the port has been accessed and the blood has arrived, the transfusion can start. At the moment it takes around 5/6 hours for the pump to slowly get the blood in, at her recent Sept transfusion 325ml of blood took 5 hours and 5 minutes to transfuse. They take observations again after 15 mins to make sure there is not an adverse reaction to the blood, and again if they switch to an additional bag of blood.
So it is a long day, and if Min wants to wander around, or do some colouring or sticking at the table in the middle, I have to be right with her with her blood on the wheely stand. There is a play specialist who helps the kids to be entertained during a long day in hospital, and helps to distract them during procedures. It is easy to put the tv on, but not great to have it on for most of the day.
Usually I have grabbed lunch and a drink from AMT on the way up to the ward, and Minnie will have a lunchbox 'snack pack'. And Minnie usually has a nap.
Normally we are finished just before rush hour starts, so it is not too chaotic to get home. The needle is removed and we are then free to go. We also pick up her Exjade medication, which helps her to eliminate the excess iron she accumulates fro her transfusions.
So normal to us, and it is a great that it is only a day procedure. Sure we would rather not do it, but whenever we are in hospital we see kids who have to manage much more serious medical interventions, and we are always grateful for the (relatively) normal lives we lead.
No comments:
Post a Comment