Dazed & Confused

After yesterday's news, we spent much of today feeling a bit dazed and confused.

Although we were still very sad, we needed to pick ourselves up and get back on our feet, and continuing moving forward. We had plenty of questions to ask, and there were plenty of professionals to answer them. We are slowly but surely realising what an incredible team of doctors we have.

Throughout the day, we both had moments where it was just too much for us. We both had a cry over the fact that Jonathan knew how to drive from home to the hospital on autopilot, and Gloria knew how to spell "immunoglobulin" without using the auto-correct function. These are things we both could have happily lived the rest of our lives not knowing, but, alas, they are key things in our new life now.

It really was the start of our new life, with Sean receiving his first intravenous immunoglobulin infusion (IVIg) today. The doctors and nurses monitored him ever so closely, to watch for any negative reactions or side effects. Thankfully, it all went smoothly, and Sean seemed happy to sit quietly while the infusion took place.

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Hi Mum and Dad,

We've had a better day today. Still very sad but we are now resigned to the fact that our precious boy has a lifelong condition that will require ongoing treatment, and we will do our utmost best to help him lead the fullest life possible.

Whilst neither Jonathan nor I got much sleep last night, Sean slept like a champion, down from 8pm until 7.30am! Way to go, little man!!!

There were more tests today, with blood and snot and phlegm and poo being taken away for analysis. We had visits from various doctors, including Dr Allen who apologised for not getting enough opinions on Sean's chest X-ray done in November. Dr Allen thought that if he had pushed it, we might have found out more things by now. But Jonathan and I are both just so glad that we are now well on our way to a full diagnosis.

In a way, we're happy to have been admitted last week instead of earlier. Had we been admitted in November, Sean might have missed a "normal" first Christmas and first birthday. We are grateful these milestones were not spent in hospital.

Dr Gray, our immunologist and head of the immunology team came by with one of his associates and started Sean's first course of IVIg, being the immunoglobulin G replacement therapy. Sean was a real trooper; so brave and so patient. He did not have any adverse reaction to the IVIg, which is very promising. This is the transfusion he has to have once a month for the rest of his life.

More antibiotics were administered to help fight the chest infection, most of which are now given through the IV. Sean is back in the saline drip too, so he is giving us some very impressive soaking wet nappies.

Sean's temperament is continuing to improve. He's back to being playful and inquisitive and ever so engaging, which is a big kick in the teeth for us. Here is a child who doesn't look or act the least bit sick and yet he has a lifelong disorder.

Jonathan has been so strong and brave for all of us, but he has moments where it all does becoming overwhelming. Jonathan said he could live without knowing how to get from our house to the hospital without using the GPS on very little sleep. That was upsetting for him - he drove on autopilot to us this morning and feels he shouldn't have ever had to learn how to do that.

My parents came to visit today, a lovely surprise as we didn't expect them to come. They were pleased to see Sean initiating play with them.

More tests are scheduled for tomorrow. The blood sisters are coming at 7am to take more blood, and we have to collect a wee sample at some stage too. A social worker has been assigned to us and we hope to meet him or her tomorrow. We have so many questions!

We are feeling a little more positive and hope to grow our confidence in helping our little man manage his condition as the days pass. For now, it's joyous to see our playful cheeky happy little man return.

It's going to be an early start tomorrow so I'd better get some shut eye. We'll write again tomorrow night.

Love to you both. Thanks for all your love and reassurances.