Another day, another saga- The MRI fiasco

Earlier this week Max had to go into the hospital for another MRI scan. I was hoping that the day would be uneventful but knowing my son I was wary. Max had to fast for 4 hours before the procedure. Have u ever tried to fast a baby? It's no fun that's for sure. To make things even more challenging we had to try and stop him from napping as well! By the time he was called in to the waiting bay he was hungry, tired and very ratty. After last weeks fiasco in day procedures I was relieved when they told me that that they were sedating him with oral medication and didn't need any IV access. The medicine was so minty flavored and horrid that it took Max's breath away. He looked at me with those pleading eyes again and screamed while the nurse slowly dribbled it into his mouth. He screamed for a while longer but then fell asleep in my arms. He looked so beautiful and peaceful but he suddenly sounded gurgly. When the nurses noticed, they were worried that he'd breathed some of the medication into his lungs. A minor fiasco followed and they called in an anaethetist who stuck a tube down his throat and suctioned out the offending medication. I wonder if the nurses actually thought that saying "this never happens" to me would be reassuring (it wasn't). After he had been suctioned, the gurgling stopped and he was taken away for the scan. He returned shortly afterwards having woken up screaming shortly after the scan started. That's my son. Hates daytime naps and doesn't bloody sleep longer then 20 minutes even with heavy sedation on board. After all of that, we have to go back again to re-attempt the scan but this time under general anesthetic. I always try and find the positives in these situations. In this instance, the anesthetist was a spunk ;-)

Our first week at home

Being in hospital was easy in some regards. I didn't have to do any housework, Max's bottles were made up by the kitchen and every day Rob would do all the errands. This left me free to focus my attention 100% on Max. Things were a little tougher at home, particularly with the amount of unpacking and reorganizing we had to do. Thankfully my parents and sister Tara came over the next day to help.
Our first week at home we had to go to the hospital three times anyway. Twice for blood tests- which were both 'normal' (for Max) and the third was for him to have his final dose of the IV treatment 'Rituximab'. This was booked in as a day procedure and we'd anticipated it was take 5 or 6 hours. What I hadn't anticipated was tripping over his IV line and dislodging the infusion when it only had an hour left to go. It took another three hours and over 8 attempts (I lost count) to get another IV line in. He was so brave and let them jab him a few times without shedding a tear. But it eventually got too much for him and he screamed and screamed. I felt terrible that I'd been the one to dislodge the drip in the first place. At one stage he looked at me, his eyes pleading me to make it stop. His veins were so bad they contemplated using a vein in his head but thankfully those veins were crap too. Finally they got a line in a tiny little vein in his wrist. For the last hour of the infusion a nurse had to hold his wrist steady because the line was so fragile. We were the last people to leave day procedures that day.

Home at last

It took another week until Max could finally go home. First his platelets dropped, then his blood pressure, then his platelets dropped again and then his haemoglobin. It was a frustrating week though in some ways I was glad for the delay because by the time he was able to go home I was ready. By the time we took him home he was off most of his medication, this was a relief because I was nervous about preparing his complicated regime of pills and syrups. On Saturday the 16th of July we finally walked out the doors of RCH after a 6 and a half week admission. It was more overwhelming then I anticipated and I cried with happiness as we walked down the road. Walking through the front door at home I had memories of that day when we first bought him home from hospital. This time though it was much better an FAR less scary. The first night at home Rob and I doted on him like he was some sort of lord. We sat either side of him on the couch and drove him nuts with our overzealous declarations of love. It still makes me giggle when I remember how over the top we were. Max had a few episodes of inconsolable crying for the first 2 days we were home. I think he was overstimulated and a tad confused. On our first night at home I was keen for him to sleep in his new cot but I couldn't resist putting him in bed with me. Waking up the next morning and seeing his beautiful face was one of the best moments of my life.

Going home soon

Tomorrow will be 5 weeks since we arrived at hospital. I struggle trying to comprehend that we've been here that long. Max hasn't had a platelet transfusion in over a week, his blood pressure has largely settled down and his physio is going well. We are going home on Saturday! This is a daunting thought and one that's taken me a little while to accept. It seems strange that only a few weeks ago I was desperate to go home but now I'm scared. Being in hospital has become my security blanket and now I have to let that go. It makes me feel a little sad that the boy I'm taking home isn't the same little man I left home with all those weeks ago. My baby now has permanent brain damage and this reality will probably hit me once we leave. That's not gunna get me down though. I still have my son and other families are not so lucky. There is no point in ruminating over the 'what ifs' and 'if onlys', I can only look forward to the journey we have ahead of us. We have a massive schedule of outpatient appointments and I'm glad because it'll keep me busy and (most importantly) focused. The thing I'm looking forward to the most is falling asleep in my big comfy bed with Max lying next to me. I've missed that more then anything.