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.

Thursday 30th June- Happy Anniversary

We've been here at the hospital exactly 4 weeks today. On the day that I drove him here I never expected that we'd still be here a month later. I thought we'd hang around the ED for hours and then get sent home with some anti-biotics or something. When the doctor in the ED told me that he'd be in "at least overnight" I thought they'd made a mistake. I think back to that day and still struggle to put it in words- I've sat here for ages writing a few sentences and then deleting them again because no words can sum it up. Sometimes George Clooney pops up in my memory because it felt so much like I was watching an episode of ER.
It's all been good news here this week. Max is responding to the new treatment and he hasn't had a blood transfusion since Saturday! He isn't attached to an IV pole anymore so I can finally take him for little walks around the hospital. The other day my sister bought in a stroller, we rigged up his IV and took him downstairs to the park. It was so amazing to take him outside. I'm not sure he appreciated the moment but I sure did. Yesterday his blood pressure was NORMAL after weeks of being obscenely high. It's like he's decided that he's had enough and wants to go home.
I love that Max gives hope to other people. There's another mummy here who can't believe how sick he was when I showed her a photo of him in ICU. Now he's babbling, laughing, grinning and playing like a 'normal baby'. All things that I was so scared I wouldn't see again. Fingers crossed that the news stays positive.

Monday 27th June- Normal!!

Today for the first time since we got here, Max's platelets were in the NORMAL range at 187!!! He has gone 2 days without having a platelet transfusion. This is the first time in nearly a month that I've been able to entertain the idea of going home. I'm excited but scared by the prospect of leaving hospital. I suppose it'll be a bit like taking him home after he was first born. I know my baby is getting healthier because the days here are getting longer and longer. Initially we had a busy schedule of doctors and various tests. Now I'm happily bored! I can't wait to do the normal things that I'd always taken for granted like going grocery shopping and walking the dogs. One of the first things I need to do once he gets his IV line out is give him a bath! My stinky bubba hasn't had one since we've been here. I want to take him to the pool, the beach, the zoo, the farm and the aquarium. Max was already my world before he got sick but now I want to give him even more. He is my hero.

A word about platelets

This is what happens when a baby on steroids needs to fast

I've spent the last few days deliberating about what to write to bring this story up to real time. We've been at the hospital for nearly 4 weeks now. Since Max got out of ICU he has made me so proud every single day. He is focusing with his eyes again, his neck is getting stronger, he's moving all four limbs and he is looking straight ahead a lot more then he was (he still really struggles looking right though). Max had his first bottle the day after arriving on the ward. At first he didn't remember how to drink and he cried in frustration. The second bottle he wolfed down in record time. By and large the most annoying problem his had over the last few weeks is his platelets. Max's blood has perplexed all the haematologists as he has not responded to all the usual treatments for ITP. The normal range for platelets is 150-400. When Max arrived here, he had 6 and they haven't improved. He's had platelet transfusions a couple of times a day and the odd blood transfusion here n there. Funny how before this all happened I was nervous about giving him panadol but now he has transfusions for breakfast, lunch and dinner. The usual treatment for ITP is steroids 1-2mg per kilo per day. For awhile, Max was on 30mg per kilo! It worked a bit but made his blood pressure high and his appetite HUGE. One day he was going for an MRI and he cracked it in the waiting room because he was due to eat- the whole scan had to be postponed until after he had his bottle. Every time his platelets drop below 10 he is at risk of further bleeding and that isn't something I could go through again. Nearly one week ago we started treatment that has been used in ITp but only a handful of times in babies his age. It's scary stuff and I worry that he'll grow a tail. Today his platelets were 125 and it's the first time in nearly 4 weeks that he hasn't had a transfusion. I don't want to be negative but I'm scared of getting my hopes up.