Until tea time today there wasn't really much new to update you all on, Henry was continuing with his daily meds and doing so so well. I had texted the social worker this morning to see if there were any developments with the transport and accommodation. She got back to me after our trip to the hospital earlier and there has been a bit more news! The information floored us at first, but after talking it through and fixing our perspectives, it may work out better for us...
So as I mentioned above, Henry has been continuing to do so well while getting his meds, he is actually thriving so much more, running about, saying more words, testing us (lol!) and just being a typical boy who is nearly 2! I do think the tantrums are starting early, but he quickly follows them up with hugs and kisses. He just melts my heart and gives me so much joy and strength. I'm really so blessed and I'm cherishing this extra time we have had at home together as a family.
I do think God has been throwing more lessons my way to prepare me for what's ahead, and I'm ensuring I keep my mind open and focused to catch them! Sunday was a big one, and was one of the hardest days lately. I took Henry to the hospital to get his medication and everything just felt quite unsettled. Long story short, it all felt like a rush, and I was not following my gut instincts as well as usual. The nurses changed his dressing that covers his lines (this is usually done once a week) and Henry just has a melt down when it happens. I'm pretty sure we all would, as they have to take the old dressing off which feels like taking off a plaster. I was trying to make sure I was holding him as still as possible but this is becoming more difficult as he is so strong, and yeah, it's hard watching your child in pain. So after it was changed I took him out to the car to go home, but Henry was pulling at his lines and seemed to be uncomfortable. I felt quite worried and a bit tense after it all, and mentioned to David that I didn't feel confident that things went well. David is so much better when it comes to the medical side of things, I normally just freak out and take longer to react. He checked the dressing when we got home and he wasn't happy. The lines are meant to loop round but the nurse had looped it the other way, meaning the lines were not coming out at the usual angle so it must have been causing Henry some pain. After a call to the ward, we decided to change the dressing ourselves. But throughout all this, I was so annoyed with myself, and because of that let's just say I wasn't the nicest to David.
David just amazes me. Not just because of this, but how he copes under pressure. He changed Henry's dressing and done such a good job. Henry was way more settled afterwards and was all smiles. I still felt so annoyed that I didn't trust my gut and say to the nurses that I wasn't happy or I didn't think it was done right. I'm not intending this to be a blame game and putting the nurses down. All the nurses we meet are amazing and I am beyond thankful for them. I'm just annoyed that I didn't speak up as Henry's mum. I think God is trying to teach me to stop doubting myself, if there's something I'm not sure about or want to ask, just do it. Nothing I ask or say will be stupid, and I need to remember that. There's things I won't know medically, but I know my son and when he is not himself or when he is in pain. And I think that's something a parent can only grasp. So I need to stop doubting, and I am sure there will be more lessons like this and opportunities to conquer this.
I should also say that me and David talked about it shortly after and I apologised for taking it out on him, cause he didn't do anything wrong, it's just unfortunate that when we are annoyed at ourselves we lash out to those closest. At the minute for me that's David and God. However, being able to connect and talk things through is something me and David have made sure we always do, it diffuses any tension or bad feeling, and lets us move on together stronger.
We had to go to the hospital today for more blood tests to check Henry's potassium levels due to the medication he is on, and the doctor mentioned they will do the blood tests for the viruses at the weekend when we are in. It's looking like the CT scan will be middle of next week so please pray all these tests go well and Henry can go for the transplant as planned on the 17th May.
Transport & Accommodation
At the start of this post I mentioned that there were developments with the transport and accommodation. The social worker, who I absolutely adore, got back to me after our trip to the hospital today and she shared some information that initially shocked and freaked me out.
All along we knew we were going to be travelling in the air ambulance due to the risks of coronavirus, but today we were told only one parent can go in it with Henry. Yup, not what we wanted to hear. She proceeded to tell me that the other parent can either get a flight to London and a taxi to Bristol, or get the boat and drive to Bristol. When this was being said to me, it was as if everything stopped and started to blur. My mind raced through so many questions, mainly 'WHY?' 'WHAT?' 'HOW?'....
After a good chat with her, we ended the call and I gave David the news. His shock matched my shock. I felt the wave of panic hit, like it usually would with me when any plans change. But then I remembered all the times God has adjusted our plans for the best reasons, and that He is ahead of us in all of this. Me and David started talking through the positives of it instead of letting the panic build up and consume the situation. I immediately felt like I had to tell everyone to pray that we could both go in the air ambulance with Henry, but then I felt something stop me. Yes, it means we will be apart sooner, but it also means that we can take more comforts and belongings in our car and we will have our car over there incase we need it. Also, me and Henry will be flying over and going straight to the hospital for admission. I'll be able to stay with him and not worry about carting all our belongings to the ward (which we probably wouldn't be able to do as it's an isolation room/ward) and David can bring it all over in the car. Yes, I'll worry about David travelling alone, and I'll hate being away from him cause we have been together 24/7 really since Henry was diagnosed.
We both truly believe deep down this could be a better situation for us, and deep down we always believe that God is in control of all the details. So we are choosing to trust. What would have been panic before is now calm. We can't control any of this even if we wanted to, but I know God is trying to teach us that He is in control and we need to learn to let go. We know it makes it a bit more difficult, but the travelling side of all this is a small amount of time compared to being over there. We are remaining thankful that we can both travel over, ok not together, but we can still both go. We are thankful that the team sorting all of this out is going to arrange everything for both of us, no matter what way we go. These policies are in place for a reason, and it's to keep everyone as safe as possible, which is what we want.
So yeah, over the next few days we will confirm all these details and get all the arrangements underway. We also found out that we are not staying in Clic Sargent's Sam's House, but we are staying in Clic House, which is slightly further from the hospital but not drastically. It'll be a 12 minute walk away. This could be good for us mentally, getting exercise and a bit of time to process things we have experienced that day or night. Please continue to pray for all these arrangements and that we keep trusting and letting go of control. God is truly good and goes before us in it all.
The final tests Henry is going through before transplant go well and there are no further health issues or delays.
The nurses coming out to the house to carry out the daily meds remain safe and well, and their families.
Giving thanks for all the people involved in this journey, the medical team, the people taking care of transport, Clic Sargent for the accommodation, and all the support we have been given.
We remain focused on God and keep learning to trust and let go.
Lives continue to be touched and saved throughout this journey.
Comfort and peace for the families currently waiting or going through cancer treatments.