Another difficult time for son but now out the other side.

[Nanapal]

Hi all, son unfortunately developed another medical problem in November ( this may have even been happening earlier but not detected). Sons stats drastically dropped in care home despite him not occluding his airway and he struggled to breathe and had seizures. Admission into hospital and this continued to happen therefore they did several investigations as thought something was blocking his airway. CT scan then MRI scan on neck did not show anything. Consultant at hospital then thought it could possibly be his vocal cords were intermittently spasaming and staying closed too long which meant son was left struggling to breathe ( full crash team on alert and actually came twice which was very upsetting - I was at hospital with him) . After a discussion with a senior colleague in nearby RVI Newcastle he agreed and he came next day to take son to theatre for a procedure to look at his vocal cords. This spasaming was seen during procedure so only option to maintain sons safety was to give him a tracheostomy. We were advised of high risks that procedure might have for son but alternative was one of these spasams could be fatal. Thankfully procedure went ahead on 1st December without any problems and son recovered really well and returned to Hawthorns on 22nd December.

Very pleased to say son is actually doing and looking much better than he has done for over a year. He looks so much more relaxed and sleeping so much better ( no longer needs NIV mask at night). Even consultants and staff at Hawthorns have commented on this so not just us. Now he has trachy in the tongue occluding isn’t an issue anymore since airway permanently open with trachy therefore he no longer needs one to one 24 hour care assistant watching over him. His stats haven’t dipped once and he hasn’t had any seizures since either and no chest infection problems. We are aware trachys have their own possible set of problems - infections etc but so far so good.

Other good news is son has reached No 6 on list ( this referral was made 2years ago by Walkergate Rehabilitation hospital) to have a baclofen pump inserted to help with his spasticity and will be having his anaesthetic pre assessment in next few weeks and if that goes well procedure in next couple of months so 🤞.

Best wishes Nanapal x

[New_beginning]

Onwards and Upwards Nanapal x

[Nanapal in reply to New_beginning]

Thank you NB. Hope your husband, you and family are all doing ok. x

[Pairofboots]

Really good to hear x

[Nanapal]

Thank you PB, son certainly shows us what a fighting spirit he has. Been up to visit him today - sitting up in his long awaited comfy chair and looking well.

Hope you are also doing ok. x

[cat3]

A terrifying time for you all Nan. You must be so relieved and thankful for your son's recovery. It's good to hear he's doing so much better ....& fingers crossed for his baclofen pump op. before too long ! Xx

[Leaf100]

Scary journey with a phase of relief at the end... oh the lows and highs... big hug to you , I am so glad things are going well and he doesn't have long to wait for the next procedure he needs... fingers crossed all continues to go well...

Leaf x

[ksws]

Best wishes NP and everything crossed for continual improvement x

[Nanapal]

Thank you everyone for your continued support and best wishes for our son.

Sometimes I wonder if I should post about these difficult times son has gone through. Then on reflection I think maybe some other families maybe going through similar and it may help them get through and see quality of life can improve despite everything. x

[Alibongo60]

morning nan, sorry to hear of your new trauma your sons been through, but at least he is now through to the other side and you can all relax a little. I say a little because I don’t expect you can totally relax completely it must be like a roller coaster and I think this is why you should post your journey, you and your son offer HOPE to people starting your journey, you have been through soo much . I hope you hear soon about the baclofen pump soon, lots of love Alice xx

[Nanapal in reply to Alibongo60]

Good morning Alice, thank you for your best wishes. As you know our journey through this with our son hasn’t been an easy one but as NB said the ‘onwards and upwards’ path is the only way to follow.

I am glad you agree posting how hard things can be is right thing to do.

We are visiting son this afternoon and I will tell him about all the kind people here who send him and us their very best wishes and support.

Take care. Nanapal x