Transplant Day +22 - Our First Weekend Leave!

Good Evening Everyone,

Hope everyone is well this evening and looking forward to the weekend.

Tonight we are blogging from Home - Woohoo!! I must say it does feel very strange as if it’s all not really happening!! I’m sitting here in my own bed, lovely warm pj’s on…oh geez can you imagine how comfortable I’m feeling right now?!

We arrived home tonight around 7pm (left) and the house was gleaming from top to bottom and has been completely sterilised by the troops with help from Helen and Andrea. Dad greeted us in the driveway and was so pleased to see Phoebe back at home. Walking through our front door tonight was all too overwhelming and I felt completely broken as if we had run a marathon today, both Mums were there to pick us up. Just walking into the house, knowing everyone has been here all day, cleaning and sorting for us to make the welcome home…we were lost for words really. Thank you so much to all of you this week, it was so very kind of you all to help us, you have all done such an amazing job, felt like I was walking into a new house on 'Changing Rooms'!!!

As I said earlier, today has been a stressful day; it has been exciting but we have felt apprehensive at the same time and experiencing all of these emotions leave you feeling completely drained.

The energy of a new day with big changes ahead started well this morning. Charlotte our nurse gave Phoebe her meds without any fuss this morning and this automatically gives us confidence that Phoebe will take her meds; we just need to refine our procedures a little. Again, Phoebe seemed to be quite tired again today and after having very little to eat for breakfast, she was ready for a nap.

As the folks say, "when they are sleeping, they are healing" and Phoebe awoke from her nap, with great enthusiasm and energy, you could just tell she really needed the nap. As soon as Phoebe awoke, she was off for a walk leading Daddy straight out of the door and down the main corridor!! It must take such a lot of energy out of Phoebe as for the rest of the afternoon she was a little listless. Phoebe hasn’t had much appetite or hasn’t wanted to drink much today, but just before we left for home, she tucked into some white fish, potato and mixed veg..and kept asking for more…brilliant!!

Probably the hardest part about this next phase is taking the oral meds. and today we have had a few hit and misses. Phoebe will be taking 12 doses each day and this extends to 16 on a weekend, some of which taste absolutely awful. Phoebs has been sick a couple of times at the hospital, but on the whole the meds went OK, but due to her appetite and a little sickness it was touch and go if we would be allowed home. We have still not made our minds up yet regarding the NG tube and we are having the weekend to see how we get on as we are due back in Manchester for 9am on Monday. Whether we need to stay again or not will depend on how Phoebe’s bloods results are. The hospital is keeping our room closed off for the weekend until we return on Monday.

The journey home didn’t phase us at all really. When we left the ward it felt quite strange as we had waited all day yet when it was time there were no nurses to say good night to as they were all busy with patients in the cubicles. We started our journey home and began telling Phoebe where we were going, so her new word is now ‘home’! On route, we received a call from Rachel our nurse who had forgot to put our Penicillin into our med. bag as it was in the fridge. We turned back and that must have really confused Phoebs!! With Penicillin now in tow, the journey was very smooth and we landed home incredibly quickly; it may have been as I had nodded off!!

After settling at home, we tried with this evening's meds. and Phoebe was quite sick tonight. We managed two of the meds OK but with the others she was very sick, so we had to change Phoebs and get her ready for bed again. She has been a complete dream and has settled off instantaneously, snuggled into her pillow. She has been through so much that it’s really hard to believe we are back at home so soon. The doctors feel it’s good to be home as we cope with things much easier in our own environment and I have to say Maged has been so totally right on so many things during our stay.

Thanks so much for all of your questions, I will write a more in-depth blog for tomorrow and let you know how we get on with all the meds…keep your fingers crossed!!

As it’s getting late and Phoebe has settled so well tonight we’re going to sign off early and get some good sleep, but we will be sure to keep you all updated on our weekend leave and we’ll catch you tomorrow.

For now dear friends.

‘Angels will always be by your side, even if you are unaware of their presence.'

Rest well until tomorrow….
Lynn, Ade, Phoebe and Spirit Eleanor xxx