When Two Teams Become One Again

oijlknmOver the last six weeks my husband and I have mainly been apart. We have spent less than 4 hrs a week together. Our conversations have been brief and mainly done via text or Facebook message. The only time we spoke on the phone was for urgent messages or when the kids were asleep so they could not hear the conversation. Don’t worry, this is not a marriage breakup but it was a separation that was unexpected and split the family in to two ‘teams’.  Our son, Noah, was 2 in January and recently became very ill and very quickly leading to a lot of time in hospital (Team Noah) meaning Eliza was at home with one parent through all of this whilst also working her way through a few incidents at school that caused her injury so her anxiety rocketed (Team Eliza). Hubby and I became a Tag Team so we could care for both children and their needs with me staying in hospital Mon-Fri and returning home for weekends and hubs doing the opposite. It was the best we could do between us as it meant he could work from home in the week when Eliza was at school. We saw each other briefly at ‘hand over’ which was a mere ten mins here and there as the hospital Noah was in was over an hour away from home and we didn’t like leaving Eliza without one of us for too long. Family  were great at helping and enjoyed her company whilst the travelling took place for hubby and I but I think it has been an eye opener for them about the anxiety she often hides so well.

Noah had the symptoms of a Urinary Tract Infection and was treated with antibiotics (two different lots in fact over 2 weeks) but started to become quite unwell. I took him to A&E and he was admitted with what they thought was a kidney infection so he went on to IV meds and fluids and a catheter was put in as he could not pass urine without it. He had an ultrasound that showed a very infected kidney (plus kidney stones) so stronger antibiotics were given via IV and he often needed morphine for the pain. A repeat scan was done 3 days later and the expected outcome was that the infection would be clearing. After all, at this point he had done 2 weeks oral meds and almost 5 days of IV meds. The scan was shocking, the kidney was getting worse instead of better so we were transferred to the children’s hospital where the specialists were that could look in to why. Long story short – After a failed stent to kidney, failed drain in to kidney, numerous scans including a special dye scan to determine function of kidney (there was pretty much none!) we were lucky to fall under the care of the senior specialist who simply had a gut feeling that he knew the cause and it turned out he was right. From what they told us, Noah is only the 4th case in that hospital in 15 years or more to have this rare condition and he is certainly the youngest they have seen. Noah had his kidney removed and has to return in the near future for removal of some stones and many check up scans and bloods. He is recovering well considering what he has been through. We have been put under the ‘Rare Disease/conditions’ team also.

(For those that may be interested in it, this is it – Xanthogranulomatous pyelonephritis (XGP). XGP occurs in approximately 1% of all renal infections. It is 4 times more common in women than in men and is usually noted in the fifth and sixth decades of life. XGP affects both kidneys with equal frequency. Although XGP is rare in the pediatric population, it is found in approximately 16% of pediatric nephrectomy specimens. In children, XGP is more common in boys and usually affects those younger than 8 years. Ref http://emedicine.medscape.com/article/2050430-overview)

Whilst all of this was going on Eliza was doing her best to understand why we were not all together, why Noah was ‘missing’ which is how she described it. Sadly she had also been injured at school a few times by other children during this and ended up with a black eye and teeth marks on her arm. Her anxiety was through the roof and we have has many meltdowns which we have not had for a while but they are expected after everything. The Easter Holidays happened at the time Noah was heading for surgery so she was already out of routine with no school so her entire world fell apart for a while. Considering what she went through, she coped so much better than I expected. After all, there was no time to plan for something none of us expected to happen. It took a few days to encourage her back to school last week, she kept saying “School is dangerous”. If I had been given a black eye and bitten, I would feel the same too!! She has settled back in and slowly the routine is getting back to ‘normal’. Noah is home recovering from surgery (although you would not know he has had anything done the way he is dashing through the house as usual).

It’s funny how kids recover fairly fast to things yet I am nowhere near over any of this. My heart and head are still in pieces. Every moment I was in hospital with Noah I felt guilty that I was not home with Eliza. Stupid things went through my head every minute. Was she ok? Did hubby remember she had swimming today? Does Nanny know Eliza can’t drink orange drinks? Was she ok at School? Does Daddy know where the uniforms are, where the timetable is, did he put pull ups in her bag, does he know what she has for lunch……..???????? Yet the minute we switched and I went home I felt guilty at leaving Noah. As much as I loved spending time with Eliza and she very much needed mummy time, at the back of my head was fear. What if he became worse? I would be an hour away at best through traffic and that is after I find someone to stay with Eliza. I am not ashamed to say that many times in my head I panicked “What if he dies and I am not there!” and I am pretty sure hubby felt the same when he was home. I have never felt like such a useless mother than I did during all of this yet deep down I know I did my best. It really hits home how hard it is when you have more than one child and one becomes so poorly they are in hospital yet the child at home, autistic and struggling with anxiety needs you too.  My heart aches for what both children have been through but it’s healing slowly as I watch them together, reunited in chaos and cheekiness. The look on Eliza’s face when she walked in the lounge and saw he was home was a look I will never forget. Neither will I forget the look on his face when he saw his sister “Eye-za” coming towards him with a hug. We are all (for now) back together. Team Blooming!!!

 

 

 

 

 

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Author: Julie Clarke

Mum, Carer, Wife, Ex Nurse, Sci-Fi Geek and blogger. I run a Facebook page called 'Living with Blooming Autism'.

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