On the 27th March 2018, Summer had her final sleep study at Great Ormond Street Hospital.

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We arrived at Kangaroo ward at 6:30pm where we were met by the nurses of the ward.

We were shown to our room to get ready for our nights stay. It was our second visit to Kangaroo ward as before we used to stay on the old respiratory ward, Badger ward. 

 

Once in our room we settled down for the night, put Summer in her baby grow and set out her blanket in the hospital cot and dimmed the lights. Only one parent can stay over and the other parent has to leave by 11pm.

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Summer had fallen asleep with a fight, she could sense when she was going into hospital. I held her in my arms, she was connected to her feeding pump and she lay still on me slowly falling asleep.

Finally she'd reach a sleep where I was almost certain she would sleep all night. Thats the thing about my tube fed baby, I can feed her when asleep meaning pretty much since birth she has slept 10-12 hours a night.

*BANG* goes the door to our room as it flung open with the corridor lights pouring in. A member of the sleep study team burst in with an daytime pitched voice... 'is Summer ready?'

And with that my sleeping beauty woke.

 

Before the sleep study team could come in and wire her up we first had to see the Dr to examine Summer.

A familiar face approached us, not a usual Dr we are met by at GOSH. A face Paul & I recognised almost instantly from those dark dangerous days when we were rushed in by blue lights and screeching sirens. 

The paediatric consultant who worked firmly in recus in Barnet Hospital. He shook Pauls' hand firmly and gave me a warm smile. Its nice to see you again he said. He has been promoted and now works in the neurology team as a specialist at GOSH.

He examined Summer, thrilled at her progress. He also mentioned remembering us from recus in Barnet when Summer was smaller.

We knew then, as we always do, we were in tremendous care.

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Summer finally fell asleep after twinkle twinkle was reluctantly played over 20 times. The sleep study team member came in. I remember thinking a lot less wires than before. Summer was having her sleep study without any breathing support. At this point Summer has been NPA free for 3 weeks.

A broken nights sleep for both Summer and mum we were up at 6;30am. Washed, dressed and ready to be met by the respiratory consultant.

At 11am sharp Dr Abel and his team came into our room.

'I am thrilled to share with you that the sleep study went very well' he paused 'I am happy to confirm Summer no longer needs upper airway support'. 

My eyes flooded with tears. Finally at just over 10 months old my baby can breathe all by herself. I remember stuttering Thank you around 3/4 times over and over again. 

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When we arrived home, we continued to keep Summer on her SATs monitor during the night. Three nights after we came home we ran out of foot probes, we then decided as her parents who had just been given the all clear, to keep her off of the SATs machine to try and lead a simpler life.

 

Summer is thriving!

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Monday 9th April 2018. We set off from home at around 1pm. We were driving to GOSH for a double appointment, 2:40pm and 3:30pm.

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Our first appointment was with the cleft team. We were called into a room with 8 medical professionals in, Summer's surgeon and her assistant. A speech and language therapist, a phycology professional, a dentist and orthodontist along with some nurses.

Summer's surgeon is new at GOSH. Instantly we felt calm with her, she had a good aura. She looked into Summer's mouth and said she'd expect to close Summer's cleft palate in one operation. We asked all the questions we had scribbled down and she answered them all.

After a long chat with the speech and language therapist we were lead back out to the waiting room.

Within 10 minutes we were called into our next appointment. This appointment was with Summer's paediatrician at GOSH. She was so excited to see Summer needing no breathing support. She was weighed, lengthened and examined. All was fantastic. Summer's weight is being watched as she is slightly under but that will come with time when she starts feeding orally.

As the second appointment drew to an end, the peadritrician said that she happily gives Summer the go ahead for surgery. 

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A cleft nurse joined us in the room and said she will now start the pre op. Paul and I not expecting this but obviously taking it in our stride. All surgery and recovery info was given and we were allowed to ask as many questions as we had.

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And then the news came. Summer will have her surgery within 6-8 weeks.

Please keep my family in your thoughts as we fast approach surgery and recovery.

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This story is to be continued...

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Thank you for reading One Tube Down...

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Jessica x

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