Help Harriet

Today we returned to the QMC in Nottingham with Harriet to see the consultant of neurology Mr. William White House. 

We initially arrived just after  11.30 am and parked directly outside the hospital and got all Harriet`s medical and essential equipment together, including her suction machine, emergency Tracheostomy case, feeding and oxygen machines.

The letter we received stated that we may be at the hospital for a few hours and at the time we arrived, Harriet was already late for her second feed of the day and therefore we had to find somewhere to feed her in a very busy corridor in the hospital .  One of the nurses weighed and measured Harriet and then let us into a side room that was no larger than a small garden shed, where we were able to feed Harriet .

Harriet managed to finish her feed just before we were called through to see Mr. White House, he was pleased to see us and asked us if it was alright for one of his colleagues to sit in with us during the meeting, which we were more than happy with  as  we just wanted to find out whether there was any news as to why Harriet was the way she was.

Mr. White House asked us whether we had had any results back from Great Ormond street, to which we both replied that we were still waiting for them and were told that we should have these around the middle of December, but the anxiety of not knowing was incredibly stressful. 

In our last meeting with Mr. Whitehouse at the beginning of September, he said that he felt Harriet had a White matter disease and showed us why this was on the MRI scan, there are about 40 different white matter diseases that  all  seem to be either severely debilitating or life threatening .  I asked Mr. White House whether he still felt that Harriet was suffering from a white matter disease, to this he replied yes, but until the results come back I have no idea which one it is and it could even be a new White matter disease that has never been seen before.

We were both upset by what Mr. Whitehouse had said to us but kept things together for Harriet.

Harriet was then examined for her head size and overall development, all of which were following the normal growth development axis.

After Harriet`s examination Mr. Whitehouse said that he would chase up the results at the QMC as he needed to try and put all the pieces of the jigsaw puzzle together in order to give Harriet a label or prognosis, whether this be good or bad.

We left the QMC under no illusion that the news that would come within the next few weeks could be devastating for Harriet and ourselves, but all we can do is wait.

Mum and Dad

Time seems to go so fast yet some instances so slow..Harriet is now six months old and we are awaiting the long awaited results from both Great Ormond Street Hospital and also the Queens Medical Centre and the Royal Derby City Hospital which now should be in the next few weeks. We are hoping that we may have some good news which would be the most wonderful Christmas present any family could have.  In the meantime Rachael and I have been learning how to look after Harriet including suctioning and trachy changes to enable Lesley and Jason to have a few hours respite out together for a couple of hours. 

That time has come and we arrived around 7pm a little on the nervous side but with the help and confidence we have gained over the months we felt we were ready to put are skills into action (hoping we would not need to)  Lesley  and Jason were going to the pictures but decided to go more local for just a meal in case they may have been needed.  It was the first  time  since little Harriet was born they had been out on their own together and although we reassured them we would be  alright you could see in their eyes they were still worried..I would have been the same so once we were settled in the bedroom with all the medical equipment around us and of course Jon (Harriet’s older brother) was at hand to give support as he was also trained up to look after Harriet..What a team ! 

We sat watching television whilst Harriet was watching her own DVD’s.  We had only to suction once whilst we sat and before long Jason and Lesley were back.  They had been out barley two hours .

Grandma

We returned to the Derby City Hospital today to see the Physiotherapist to try and move forward with a programme for Harriet as her back was getting worse which was having an effect on her breathing .

The physiotherapist started the session slowly as Harriet secretions were quite bad  and required regular suction for the first 20 minutes .

Once Harriet had settled the physiotherapist was able to show us new positions that we could work with at home using the squiggle mat .

After the session had finished we had to see Harriet consultant ,  Dr Shiva Shankar, he asked us how Harriet’s was getting on at home and whether we had been experiencing any problems .  

The consultant was very pleased that Harriet had put on some weight and was now starting to catch up in terms of her overall size for her age .  Mr Shankar examined Harriet as he normally does and also checked her for a suck or swallow reflex and found that something had changed, but he told us to not get to excited as her was unable to determine what had changed if anything .

Mum and Dad

 

Harriet was booked in to see the physiotherapist as the Derby City Hospital, she had been suffering from a lot of secretions over the last few days as her antibiotics had been changed and therefore we were dubious about how she would react to physiotherapy.

We arrived at the Hospital in the morning and Harriet went straight into her physiotherapy session, it was aimed at being a light programme as the therapist was aware how Harriet struggled with her secretions and breathing last time we went .

Harriet started off with a few slight exercises and straight away secretions started to pool from her mouth and the therapist had to stop to allow Lesley to use the suction machine .  We also had the oxygen ready in the event that Harriet started to struggle with her breathing .

The physiotherapist showed us several light exercises that could be performed on Harriet to help straighten out her curved back that had been caused by months of sleeping on her side .  

After the first 20 minutes Harriet settled down well, her secretions started to slow down and her saturation levels got better which allowed her to breathe easier.

 

The therapist wanted to introduce Harriet to some exercises that required a system called the Squiggles, which were some Velcro shapes that could be pushed together to create a moulded shape to help Harriet with her positioning .

In the first position Harriet was lay down on the squiggle mat with a headrest and had the system attached round the mat .

We were then shown  a second position that would keep Harriet aligned on her side when sleeping or feeding, this was a great position for Harriet and she looked really comfortable and calm

The last exercise of the day required a Swiss ball, Harriet was placed on the ball during some stretching exercises .

Mum and Dad

I went to see Harriet today..And now she’s at home she does look a lot more comfortable. She was snuggled down in her cot when I got there after her feed she seemed so peaceful. Jason had been looking after her whilst Lesley took Eve to gymnastics for a few hours. When Lesley got back she got Harriet up and gave her some physiotherapy on her little hands and legs..I don’t   think Harriet enjoyed it very much but unfortunately it has to be done. Tomorrow is Myles’s 11^th birthday so Jason, Myles and me went  to Toys R Us to find something ..I was distracted by all the pink girly things obviously not of interest to Myles (worst luck) We weren’t too long because Lesley wanted to take Harriet for a walk in her pram to one of the local parks...that in itself takes a bit of organising with all the equipment that is needed. You take it for granted that when you take   your baby out it’s a case of hat coat and gloves but in Harriet’s case there is a lot more organising with basics and also suction equipment and oxygen ect. Lesley and Jason try and keep as normal as possible the running of the house and do as much as they can as a family unit including Harriet as they can

Grandma Penny