Day +26: A Wasted Day

What a complete waste of a day for us today.

After leaving the hospital for our overnight gate leave yesterday afternoon, we had to go back today to get some bloods taken for tests. We had to be at the hospital by 9am, so we dragged ourselves out of bed to make sure we arrived on time.

I was beyond exhausted last night, crashing out at around 10pm. It was so nice to be home. So nice to be in my bed. Under my sheets. Sleeping next to my husband.

For some of the night anyway.

We got home about 4pm yesterday afternoon, and Sean went wild, exploring the house again, rummaging through his toy bucket, exploring the house some more. In about 30 minutes, he had reclaimed the rug in the living room floor by tipping his entire toy bucket all over the floor. The house was filled with a sound we had both missed so much - Sean's bare feet on the wooden floorboards. That sound was very definition of "pitter patter of tiny feet", and it was music to our ears.

We had so many drugs to try and remember to give to Sean at various times of the day. Ondansetron at 7am and 7pm, Cyclosporin A at 8am and 8pm, Ursodeoxycholic Acid at 9am and 5pm, Mycophenolate Mofetil (MMF) at 10am and 5pm and 10pm, Fluconazole at 4pm, and then there's Bactrim at 8am and 8pm on Monday and Wednesday and Friday. Plus Sean's mouth care routine using sodium bicarbonate mouthwash and Nystatin 4 times a day. I don't know how I'm going to manage all of these! Thankfully, we will be dropping the Ursodeoxycholic Acid and the MMF at the end of the month, which should make the medication chart a bit more manageable.

I wanted to cook dinner for us last night, but I was just too tired, so we ordered pizza for dinner. Sean really wanted some pizza, but until such point as he could bite and chew properly, pizza was not on his menu plan.

Last night was pretty awful for us. Sean was unsettled and kept waking up throughout the night. Having spent 5 weeks in the same room, only a couple of metres away, Sean had grown accustomed to having Mummy in the room with him all night while he was sleeping. At home now, with his own room, Sean was going to have to learn to readjust to sleeping on his own again, and he had a few issues doing that last night. Sean's nose had been running constantly since having the NG tube reinserted, and it became blocked a few times overnight, which was upsetting for him. Jonathan was great jumping out of bed to deal with Sean.

I learned something very important last night - we need to make sure there was enough PediaSure in the pouch to keep the machine ticking over throughout the night. Not enough milk in the pouch will result in the pump's alarm sounding at 4.30am.

I was so reluctant to get out of bed this morning, but I dragged my sorry body out of bed and got ready to go. We arrived at the hospital just after 9am, ready for bloods to be drawn and tests to be done.

We thought we would be able to leave by lunch time, and lunch time came and went, with no sign of us being allowed to leave. The test results were taking a while to return, and we waited and waited and waited. Sean was getting quite antsy in the room, and it was hard to keep him occupied in the cot when he had had a good long taste of freedom at home last night.

I spent the time packing most of our things into the large suitcase. I didn't realise how much we had brought to the hospital until I had to repack it all! Jonathan had already taken quite a few things home a couple of days ago, but even after jamming the suitcase full, there were still so many things left to go. We may have to return with the big suitcase tomorrow instead of the smaller suitcase!

We had planned to have dinner with Dad and Mum tonight, but Mum contacted us this morning to say Dad had a tickle in his throat and he was feeling unwell. Since Sean was still regenerating an immune system, everyone thought it best to postpone the dinner until Dad was better. We had plenty of pizza leftover from last night, so we had dinner all sorted.

As the day wore on, Jonathan and I were getting more and more impatient with the lack of communication from our doctors. We wanted to know what the hold up was, and asked the nurses to page the doctors repeatedly. We were not prepared to be in hospital for the whole day, and we really wanted to go home. We sat and waited, and sat and waited, and sat and waited some more. Although we had been happy to do this for nearly 5 weeks, we weren't allowed on gate leave before, so we accepted that we had to sit and wait. Today, we wanted to do other things - if nothing else, than to come home and get into our comfy clothes and have Sean run around and play. With expectations that we were to be in hospital for 2-3 hours, only to still be sitting around nearly 6 hours later, was very very disappointing and frustrating.

Finally, at around 3pm, Adam came in to tell us all the test results looked great, and we were allowed to go home for another night of gate leave. By the time we got home, the day was well and truly over.

Tomorrow is the big day that we had been working towards - official discharge. The doctors were happy for us to be discharged tomorrow, if all goes well overnight. Everything was pointing towards us being officially discharged tomorrow, and we need to return in the morning to have more bloods drawn for more tests to confirm all was well with the transplant. Traffic is likely to be horrendous in the morning, so it will be an earlier start tomorrow than it was today.

We are certainly hoping for a better night tonight. I've made sure the milk pouch contains 2 full cans of PediaSure, which should see Sean through till 7am tomorrow. We have rubbed eucalyptus oil along the top edge of the bunny rug that Sean is sleeping on, in an effort to try and clear Sean's blocked nose through the night. We are tired, but excited by the thought of being at home for good come tomorrow. Fingers crossed the doctors are happy to sign off on our discharge papers tomorrow!