The never-ending rollercoaster

In this blog I’m going to share with you the past ten days with Jaxon, since his operation on the 18th April. Hopefully, you’ve read Post OP thoughts: What the hell happened? and are up to date on our journey. It’s pretty much an open diary and I won’t be doing this often but it’s the best way to answer most peoples questions from the past week. It covers ups and downs, Jaxons feeding since the op and an almost typical week of seeing other professionals.

Thursday 19th April – Like it never happened

Thursday flew. It’s like I blinked and it was gone. Jaxon was still in PICU so I couldn’t sleep with him which meant I had a parents room. This meant I got a full nights sleep for the first time in god knows how long. Jaxon was still on IV potassium directly into his central line so they couldn’t yet move him to a ward.

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This strong one was smiling less than 24hrs post op!

Friday 20th April – Is this post natal depression?

This was a bad day for me. Jaxon was still in PICU so I was still in the parents room. But the full nights sleep didn’t change how tired I woke up and felt all day every day. Jaxon was recovering well. He was fully awake and playing when I first went to see him and he was even giving me smiles which just amazed me. But like I say, it was a bad day. Not for Jaxon. For me. I aim to keep this blog honest, So I’ll tell you on this day I really worried myself. I just couldn’t stop crying, all day. I felt helpless and exhausted. I felt like the past 8 months suddenly came crashing down on me and I couldn’t handle the weight of it all. It was clearly driven by the failed op sinking in. The fact nothing could be simple. Nothing could just go as planned. Nothing would let up on us. Nothing would give me a break. I had surprised myself up until this day with how well I had been coping. I had no idea how, other than that I didn’t have a choice. Maybe that’s what brought this day on, Jaxon was taken care of in PICU so I had more time to think and be consumed by my raw emotions and the reality. It had been 8 long, long months.

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His tube free face and strong little body under 48hours post op!

Saturday 21st April – Another f****** complaint

This was a bad day for different reasons. This day was all about the disappointment I’m repeatedly experiencing from healthcare professionals in regards to Jaxons care. On this day, I woke up determined to put yesterday in the past. I brushed myself off and mustered all my energy to feel positive. It wasn’t easy. I arrived on the ward where Jaxon was now in a bay. He felt warm to touch and was niggly. I mentioned it to the nurse and was informed he didn’t have a temperature on the last observations but they’d be doing them again shortly. Half an hour later his temperature reads 38.7 and I hear “you were right”. I’m quite familiar with that phrase about Jaxon. Not to be big-headed but I’ve spent the past 8 months with him pretty much 247. I’m not a doctor but I’m an expert in Jaxon. So they give him some paracetamol. His temperature goes down but he is not happy at all. He’s restless, he won’t nap, he feels warm, he can’t be comforted, he won’t stop crying. By 5pm I’m getting pretty narky with the nurses asking if a doctor is going to see him about this at all?! I apologise I know it’s not their fault but I also wasn’t picking up a good vibe from them either. They didn’t seem interested or bothered at all, which is never going to sit well with me. Eventually a doctor that had been on the ward all day comes to see him. I told her I was annoyed with the fact no one seemed bothered by the state he was in. This doctor then (knowing I was annoyed and probably in defence to my annoyance) had attitude with me! So now I’m furious. She insists there’s nothing wrong with him. She brushes off his temperature because that was in the morning and it has been fine since – yes, because you’ve been masking it with paracetamol, that doesn’t treat him. I ask why they aren’t investigating it, she says he’s got a urine bag on testing for infection (he’s just had two procedures to stop him getting urine infections, surely he can’t have one again already, surely this entire operation can’t have been a complete failure?). I ask for an NPA (to be basic – test his snot for infection) explaining that he’s in a bay and he’s prone to picking up nasty bugs (he’s had 6 just in the last 2 months in hospital). At this point she outright argues with me that it’s not necessary (can’t you see the fumes coming out of my ears as I type this over a week later?). She continues to tell me he’s clinically well, as he screamed down my ear, assuring me that all his observations are fine. If he’s clinically well why are we testing his urine for infection? I tried to tell her his observations are always fine, you have to look at him. I told her I know my baby and there’s something wrong, to which she replied “what’s wrong with him then?!” (I’m not very good with my religion at the moment but I have to appreciate the lord himself must have been stood by my side at that moment holding me back). Cut a long story short (or just shorter than if I rant about this), she later had to come back to tell me that they were moving to a side room because PICU had done an NPA the day before and it had shown positive for a rhino virus. Yep. Unlike the nurse though, she refused to admit I was right and instead told me “but that doesn’t mean he has the virus now, that could be from 6 weeks ago just still showing up, we’re only moving him because it’s hospital policy”. That was a lie. You see the extra, unnecessary stress I have to deal with? That stuff winds me up more than anything. How much energy it took me to get up this morning and try to keep my head right, just to have to muster more energy arguing for Jaxons health..with healthcare professionals!

Midday I called the ward Jaxon had spent most of his time on at QMC in Nottingham, they empathized when I told them my distress and how I couldn’t handle this because these people were threatening my mental health. They hadn’t heard anything about him having a bed and advised me to call a surgical ward who hadn’t heard anything either but advised me to call the pediatric bed manager. I called them pleading, they had his name on the list but couldn’t assure me of anything.

I got back to the ward and heard the ward staff discussing someone having a bed in Nottingham, I asked if it was for Jaxon and they said yes. Thank god.

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I got to get a breath of fresh air with him at least

Sunday 22nd April – Back home, I mean at QMC.

I felt positive just from knowing we were returning to Nottingham. They knew Jaxon, they listened to me. Not only that but Glenfield is very isolated. I was thankful to be a step closer to home.

 

Monday 23rd April – A long night

Since the operation, Jaxon has been slowly weaned onto higher volumes of milk to get back to his normal. Despite not having had the operation he needed to stop his vomiting, a new feeding plan involved him being continuously fed overnight and then having three singular feeds during the day. I was conscious that he hadn’t handled this before the operation so why would he now. 2am he started vomiting and it didn’t stop until gone 7am. I was filled with disappointment as we backtracked to the same scenario we were in before the operation. During the day the dietician came and we agreed to go back to his pre-op plan of 36mls an hour for 21 hours a day. Although the operation had been to get off that plan and back to normality, at this point I just wanted him to stop vomiting so I could take him home. One perk of the op that did go ahead was that he now had a PEG which meant I could safely feed him overnight at home – so the 21 hours wasn’t such an issue. Yes, it wasn’t the best case scenario, but it was home at least!

 

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7am, after having me up all night, he falls asleep and rolls over reaching out for me. And all is worth it.

When we arrived back at QMC yesterday I had text the lady we have recently based in hospital as a part of The Butterfly Team which provide support to families with children with life-limiting conditions (we got her fromTwo weeks in hospital: Swapping to a neurodisability lead consultant & what is parallel planning?). After my drop in mood Thursday, I was overly aware and wanted to talk to her about help at home if we get discharged. She came first thing today and I just explained. I want nothing more to go home but as a single-mum alone at home with Jaxon, I just don’t think it’s fair. The nurses here do shifts, I don’t get breaks at home. It’s medication and feeds 237 365 and there should be some help, some kind of relief. How can I be his nurse and mum around the clock all day every day and not get exhausted? Not need a break. I’m not a robot. And I’m emotionally involved in his care. She said she understands. We have a meeting with all his healthcare professionals a week tomorrow so we’ll see what can be done.

Tuesday 24th April – Are we ever going home?

Despite the change in the feeding plan, Jaxon was up from 2am to 7am vomiting again. Large amounts, nonstop. My heart sunk with disappointment and exhaustion. We were back on square one. He was back on water and we needed to slowly build him up to 100% milk again. Exactly what we were doing before the op. Each time he had big bouts of sickness he would be taken of milk, given dioralyte to keep him bloods okay, then slowly weaned 25/75 milk then 50/50 then 75/25 and eventually 100% milk. Then he’d last a day or two before throwing up and it would be back to square one. Here we were again.

However, during our little playtime, Jaxon showed a huge improvement in his head control. He has a special seat called a Tumble Form which supports him in a sitting position and he was lifting his head forward off the seat! This would not be a big deal to most mums, I think head control is normal from around 3 months but here I am screaming down the ward with joy getting my camera out because my 8 month old is showing signs of strength. This kid is something else I’m telling you. He always finds a way to make me proud.

Wednesday 25th April – We were almost normal for a day

No vomits in the night! So his feed was up’d to 75% milk 25% dioralyte – we’re getting there.

We also had a visit from the community disability occupational therapists. It was very kind and considerate of them to see us in hospital rather than waiting for us to get home. They looked at Jaxon, took some measurements, made notes about his diagnosis and showed me some equipment he could have at home. As he’s so young he didn’t need much just yet, nor did we need any home adaptations. But what he would definitely benefit from is a supportive chair and bath seat. The woman explained that some parents aren’t ready for disability equipment and I could leave it longer if I wasn’t either. In my opinion, how could I deny him? It wasn’t until she said this that I thought about it and felt a twinge of sadness that he needed it. But I was 100% all for any help we could get. I had seen a huge improvement in his strength and movement from the little Tumble Form seat we’d been given for him. I was eager for more.

A friend travelled to see us and we went for a walk to Woolaton Park across the road. I can’t believe we’ve been here so long and I hadn’t once taken advantage of how close it was to the hospital. I think my friend would have liked to spend her day off chillin’ but I was clawing at the walls to go out. It was SO nice. The sun was shining (on and off), it was mildly warmish (ha ha) and we got some fresh air in our lungs! We also went in to the history museum and tried on outfits from goodness knows what era but it was so fab. A taste of normality really lifted my spirits.

Thursday 26th – Spoke to soon

This time he waited until 3am to start vomiting. Sigh. Back to 50/50.

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Jaxon has not gained any weight since February, when he was already underweight.

Another visit today, this time from the hospital occupational therapist. The woman he sees in hospital is wonderful. She caters to his needs and is thoughtful enough to always tell me she’ll make calls and send emails on my behalf because I’ve got enough on. I appreciate that so much! It was her that sorted the people who came to see us yesterday. This time she brought in a pushchair. Jaxons pushchair is a lovely Silver Cross, but it doesn’t provide the support he needs with his hypotonia (low muscle tone). He needs support around his waist and his head to stop him falling sideways. The one she brought didn’t have the head support but it was good to get an idea of what we’d be looking at. It was far from fancy but again, whatever he needs I’m down to rock! It is difficult though, after having the tube on his face removed he passes for “normal”. You wouldn’t know anything was wrong just looking at him.

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Friday 27th April  – Another rare diagnosis?

No vomit again last night. But blood tests show his potassium is low again. No one knows why this keeps happening. A doctor in Leicester mentioned something call Barrters Syndrome. I looked it up (obviously) and he ticks so many boxes; low sodium, low potassium, low magnesium, continuous vomiting. It even links back to polyhydramnios in pregnancy, that thing I had! But the doctors here aren’t convinced. It affects one in a million so it has Jaxon written all over it in my head. But can you imagine another rare diagnosis?!

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I took a break tonight, I waited til he was sleeping and left to spend a night at home . I sometimes have to remember that whilst the hospital is all he knows, I’m human and not used to this at all. I have to keep my sanity. I bargained with myself that I would come back in the morning and take him Saturday until Sunday. We’d had home leave before and I’d been taking him out during the day.

Just before leaving, the doctor told me his senior had said no to me taking him tomorrow. I was furious with disappointment. There was nothing they were doing for him here that I couldn’t do for him at home. It made no sense whatsoever. I medicate him, I do his milk, there would be no bloods or investigations over the weekends. I argued my point but in the end I just had to tell them I disagreed with their decision – what else could I do.

Saturday 28th April

No vomits overnight again. Went up to 100% at 6am and he did good! We chilled and played.

Sunday 29th April

Another vomit this morning. Sighhhhh. I mentioned to the doctor that he was on 38mls per hour instead of 36mls per hour the dietician originally planned because I had put it up and he had tolerated it so we kept it for the extra calories. But that worked out an extra 46mls for the day so maybe if we have a one hour break in the night and see if that helps? The doctor agreed on the basis the dietician will be back tomorrow to review. It seems Jaxons difficulty is with absorbing the milk but the medication that helps with that is known to cause arrhythmia’s and so it is too dangerous for Jaxons heart. It would make sense that an hour gap in his night feed would help give him a chance to absorb the milk, as he has regular gaps during the day and manages well on that. Fingers crossed this works.

If not we might never get out! Please pray for him to get out soon. This is no life to live. He’s never been to a playgroup, he’s not living he’s just laying in this hospital bed all day everyday surrounded by people in uniform.


Thank you for reading.

I’m always interested to hear how my blogs come across to readers. Many of you are so so lovely and message me directly on social media but I hope one day to look back on these blogs and smile having made progress, so it would be lovely to see the comments on here.

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