The latest milestone: The High Dependancy Unit.

Sigh with me guys. Another first for Jaxon. Not sitting up, not ‘mama’, not dipping his toes in the sea. Oh no, Jaxon does not do normal milestones. This milestone was *drumroll please*… the high dependency unit (HDU).

The calm before the storm

Following his operation that appeared to go so well on Friday 5th July, after which he flew through PICU barely saying hello, he was back on the ward in no time and transferred back to Nottingham just over 24 hours later. On the Saturday I had said to the doctors in Leicester he seems ‘off’. Sleepy and not quite himself but aware he was under 24 hours post op. When transport turned up I picked him up and felt his burning skin on mine. I asked them to take his temperature which showed as 38.0. Glenfield decided to still transport him back as they were weary they are cardiologists not general paediatricians.

We were transferred to another new ward which had my anxiety on overdrive. It’s always difficult going on to a new ward with Jaxon. His file is 10 months deep. There’s plenty of information to miss out on a general 5-10 minute handover from a nurse that’s had him a day in a new hospital, to a nurse that’s never met him before. It was after 9pm that we arrived. With the  stress from the operation to the anxiety of transferring, I was tired. I learnt quickly that this ward were not considerate of parents needing rest as I was handed his feed and medication.

Throughout Sunday I requested a doctors review three times. He had been awake maybe 2 hours total, the whole day. When he was awake, he didn’t want to be touched. True to himself, Jaxons bloods came back normal and his observations showed no concern. This is what he does, he does not present himself with numbers. He presents himself to me. I knew he was not right.

A doctor, that gave me nostalgia having been one of the first to see him in hospital 9 months ago, reviewed him and said he presented well. Listening to me all he could think of was a urine sample. Bloods were fine, observations were fine, what else could he do.

The urine dip looked like a glow stick, showing he probably had an infection. The sample was sent to the lab for testing and he was put on an oral antibiotic.

Despite the antibiotics, Monday he got worse and Monday night was hell.

It’s not a storm it’s a bloody hurricane

Through Monday the doctors on the ward saw that he was starting to present his illness. He looked extremely dehydrated with dark sunken eyes, his mouth was dry and he was the opposite of Sunday, unable to nap and agitated. His illness started to present itself as his bloods came back abnormal. His sodium was high and the markers for dehydration showing. The doctors discussed Dioralyte but I explained his sodium always goes high when given Dioralyte (as it has sodium in it). They started him on a ml for ml replacement whereby they weigh his nappies and replace the amount of fluid he has lost (we’ve done this before), stopped his sodium supplements and decided to do bloods 6 hourly. Thank fully Leicester had left his femoral line in (a small tube going into a large vein in the groin) post op and so bloods could be taken from this rather than stabbing him like usual.

I had been anxious about why the line was left in as they are high risk of infection. However, I’d been grateful for it already earlier in the day when the nurse advised me the thickness of his antibiotic was a risk of blocking his feeding tube. I had asked for the antibiotic to be put into the line instead. It was a debate but overall the risk of his tube getting block and him needing to be returned to Leicester for the whole op all over again, made it more reasonable. So it was definitely coming in useful.

Monday night I could not get him to rest or sleep. I asked for paracetamol it did nothing. I asked for oramorph (oral morphine) it did nothing. At 7am I asked what on earth was going on, surely it was not normal to leave a child like this. At this point I was told he was going to HDU.

Getting him the care he needed

HDU was a relief. We didn’t get there until 8am but we finally had a nurse with time to dedicate to Jaxon. Most people would be nervous about the severity required to need HDU. However, we’d done this all before on a ward so giving him the 1-1 care was a relief  for me. HDU provided me with a parents room as due to the critical care they cannot risk obstructions such as beds. I needed that room. I was exhausted, frustrated and drained. I went to sleep at ease knowing he was taken care of.

At 10am someone knocked on my door. A student nurse had come to tell me his femoral line had been taken out due to infection and they had to put a cannula in his scalp. I’d been threatened with this so many times before I was surprised we’d escaped it for this long. Jaxon is extremely difficult to cannulate at the best of times and the scalp is much easier. I thanked them for informing me but said it was not something I wanted to see.

That afternoon after a few more hours sleep I returned to find my cup head still wide awake and agitated. I call him cup head because they’d placed a small cup on his head to protect the cannula, it looked a bit like a mini top hat!

I was surprised to see a new line had been placed, in his neck. Apparently, the cannula had been a back up whilst they tried for another line access. There’s only 4 places you can put a central line of this type. Left or right groin and left or right side of the neck. The right groin is the one that had been taken out due to infection. There were bruises on his left groin and left neck where both had been tried and failed. A new line was running into the right side of his neck.IMG_5667My poor, poor baby. The nurse informed me he had been given a dose of ketamine to make it more bearable for him. Central lines aren’t normal placed without a general anaesthetic. However, as previously discussed (many, many times) Jaxon is too high risk to have anaesthetic at a general hospital, he must have it at a cardiac centre. Clearly there wasn’t the time to arrange travel to Leicester and find an available anaesthetist. He wasn’t even fit for travel. So he was held down whilst they attempted and eventually succeeded on their third location. What did he ever do to deserve all of this?

So he spent the whole night awake, no naps the previous day, a dose of ketamine and energy spent fighting needles. None had sent him to sleep. He was agitated and restless. Paracetamol and more oramorph failed to settle him and so after around 36 hours awake he was given a sedative to sleep.IMG_7043Today he has been better but still not even close to his normal.

The doctors informed me his Sunday urine sample had come back with a bacteria resistant to the antibiotic they were using. They had to change it again. They had already changed it once from the original choice for the urine infection, to one that would tackle both the urine infection and the infection brewing where the line had been in his groin. Now the urine was resistant to that, it was onto another one. Meaning his infection hadn’t yet been treated. I also overheard the doctors discussing that his MRSA results weren’t yet back. Please lord spare him of something.

He’s slept most of the day still playing catch up and when he’s been awake he’s been unhappy. His bloods are slowly getting better and maybe we will be moved back to a ward tomorrow (hopefully not the wretched one we came from!). The most distressing part of today was having to redress his central line as it was coming off. But it was a satisfying end as I managed to persuade the doctors to let us remove the cannula in his head. He normally sleeps on his side so a central line on his right and a cannula on his left would have been adding discomfort to the distress. Now he can at least get comfy, I hope!IMG_7062Thank you for reading.

If you have any thoughts or feelings reading this blog post. Drop a comment below. I love the messages I get about my blogs but they do get lost in the inbox. Posting them on the actual blog allows me to save and remember them.

My main platform is Instagram so feel free to follow me on there for more blogs like this and regular updates on my special journey with my son and our normal. Also we now have a Facebook page.

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16 thoughts on “The latest milestone: The High Dependancy Unit.

  1. Another extremely honest post Kaytee. Thank you for sharing your experiences with the world, its so important for people to see the whole story, no matter how difficult sometimes it can be to read!!! Praying for our 1p36 friend xxx

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  2. Sue Payne

    Oh Kaytee just-sending you love and all my strength to you both your posts make me cry but find them wonderful to read but so very sad , I think you have an inner strength in you and you are a wonderful Mum and you are very brave.

    Like

  3. Nicky (Tots in Notts)

    I can’t even begin to imagine what it must be like for you two. Life is truly unfair sometimes, no child and mother deserve to go through this. I wish there was something I could say or do to make things better but I know that there isn’t 😦
    Kaytee you are a fucking warrior, even when you don’t feel like it and you just want a second of normal life, you are clearly a very special person. As for Jaxon, you gave birth to a hero. I’m thinking of you both and hoping that he picks up soon and you can both get some proper rest. Much love x

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  4. Joey

    Poor, poor baby. And poor Mummy to have to go through all this with him. I am desperate to hear that Jaxon has turned a corner again soon and is feeling better. Good things must be coming your way. Sending so much love x x
    Ps. Parcel sent on Monday so you might have a delivery card when you next get home x

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  5. Toni Daly

    I have only recently started following you on and insta and now can’t go a day without checking for updates on jaxon. He’s such an amazingly strong baby and you are an inspiration, as a mother myself I can only try to imagine how hard this is for you. So i Just wanted to say you are doing an amazing job and it’s clear to see together you and jaxon are warriors who continue to fight every day and inspire us all. Sendinb lots of love your way and hoping jaxon feels better soon and back to his gorgeous smiley self x

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  6. Kat

    Poor little one!! You are doing so well Kaytee, you are and amazing mother and Jaxon will love you forever!
    Thank you for the very open and detailed post! It must be so difficult for you to keep up with your blog writing but you are doing an amazing thing for those, who are in a similar situation and educate and raise awareness for those, who hasn’t got a clue.
    Sending you hungs and positive vibes!! Hang in there little man, you are a soldier!! ❤ xx

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  7. Elisha

    Prayers and love always …… I salute you so highly and I think how u blog everything you do is an amazing thing as this will help other parents going through it wether now or in the future . I really have to take my hat off to you Kaytee ….. 💖✨

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  8. Thanks for sharing Kaytee. Such a brave boy but he clearly inherits that from his amazing Mum. The bit about holding him down made me wince and well up and as a fellow SN Mum I have thankfully only had to witness this once. It’s so unfair they have to face all of this. Stay strong and keep writing as I love reading xx

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  9. Chloe Elise

    Kaytee, you deserve all the blessings. Honestly, words can’t describe how fucking unfair life is! I thank you, for being you. Open and honest. Because I can only imagine how much easier it would be to say “I’m okay” “Jaxons okay” rather than share your truth. You’re truly an angel. All the love and cuddles to you and Jaxon! Xxx

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  10. Alexandra Walsham

    I just can’t believe what poor Jaxon has to go through. You’re both beyond brave. I hope he improves and responds quickly to the new antibiotics.

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  11. Pippa frith

    I’m sending so much love & strength over to both of you! What absolute fighters you both are……truly amazing!!!!! Jaxon is a total warrior……a beautiful solider! Kaytee you are an incredible mummy!!! Xx

    Like

  12. Leianne

    Haha I found it now silly me after all those voice messages!!! I love you both so much jaxon is the strongest little boy I know n he’s so handsome to!!! Must take after his mummy ay!!! I just wna say keep up the good work hun I know your doin ur thing!!! Single parenting isn’t easy but damnnnn girl you got this!!! Can u believe it it’s crazy to think isn’t it that little human doing it by yourself 😱 single mums r killing it!!! N you killing it and showing us mummy’s how it’s done!!! Girllll there is mummy’s out there struggling with their baby’s with no needs n here’s u riding it like it’s nothing I’m proud of u buba!!!!!!! Big up to the K ….A,….. teeeeeeee Jones boiiiiiiiiii 😂🤣 1st bday next month how that year has flew by tho!!!! Baby g your doin amazing don’t let no one tell u different and remember put those positive pants on hahahaha xx

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