Henry went for his bronchoscopy in theatre yesterday and things did not go quite as expected. Before I share this update, forgive all my typos as I am running on 2 hours sleep!
As there are still the added procedures and precautions due to Covid-19, only one parent could be with Henry at any one time. We decided that one of us would drive Henry up in the morning as we were told to be on the ward at 8am. Henry was going to be going to theatre early that morning which I was relieved about as Henry was to fast from midnight. It's no easy task making a child as young as Henry fast, but if you know Henry you'll know the added effort involved, he loves his food!
David decided to take him up while I done a bit more packing (other parents will know this is no easy task with tiny humans running around!) In my head I thought, I'll head up once Henry goes to theatre so I'm there when he comes out, and to give David a bit of time to himself too. These moments are vital for us to keep our heads straight as we head in to this storm. But these plans did not quite happen the way we wanted. Take note... the way WE wanted.
Remember who is in control
I was blasting some worship music while ironing some clothes for Bristol, trying to keep my focus on God and His truths. However my mind was somewhat distracted by the wonderings of how Henry and David were doing. I really don't like being away from them, just feels weird to me, like the biggest parts of me are away somewhere else. I received a text from David saying that Henry was not going to theatre until after lunch. Well, didn't my heart sink. Not only that, a bit of the old Julie came back and I reacted too quick, and let anger and annoyance take over. I felt like something that was planned was unravelling, and to someone who used to be all about planning I started to feel so out of control. As much as I hate to admit this now, I phoned the ward to get answers. I was not a happy mother. But I felt I had to speak as Henry can't, and I want to protect my son through all of this. Apparently there were crossed wires due to the bank holiday, which annoyed me more, and I pushed them to get Henry to theatre earlier. So I waited, and waited, and waited for a phone call back and I was told that Henry wouldn't go to theatre til after lunch, and due to him fasting for so long already, they are going to give him a IV drip for fluids. I was so upset. I got the anger shakes. I'm assuming this is a 'mother' type reaction to something like this, but made worse because I was at home. I tried to refocus my thoughts but I just fell apart.
I always said throughout this journey I was going to be really open and real with how I'm feeling. In this moment, I started to question why. Why is this happening to my son less than a week before we go over to Bristol for his cancer treatment? Why couldn't we just have a nice quiet week at home together, making memories and having fun before things get really tough? I cried. Now, looking back I'm not sure if all the tears were for the annoyance. I think some of them were because I was annoyed at how I reacted. I shouldn't have phoned the ward and given off the way I did. It wasn't that nurse's fault. It's just the nature of what happens in hospitals. Sometimes there are emergency treatments needed which will impact other patients. But nope, I reacted too quickly.
I proceeded to do laundry (fun times!) and I walked outside to take it to the tumble dryer in the garage and God spoke to me. He said 'why are you trying to still control things that are not in your control, or for you to control?'... smack up the face. For the last couple of years God has really been working in me and my control freak side. I am slowly learning how to let go and surrender everything to Him. But this particular morning I didn't do it. And our loving faithful God shared this with me. He reminded me that He is in control. He can see everything. He knows what is going on everywhere. He is God.
Time to switch
The annoyance faded and I headed up to the hospital. Henry was doing so well in the ward, just getting on with it like he always does. David headed home and we waited. I must admit, it felt like a loooooong wait. But I think it had to happen that way, as I was being taught to surrender. The various consultants arrived to talk me through what was to happen. In my own terms, they were basically putting a camera down Henry's airway to his lungs to investigate what was happening, if there was an infection and to take a sample. Due to me not being able to take him to theatre myself, he had to take pre meds in the room with me to make him a bit drowsy and a lot calmer.
At 3:15pm the bed arrived to take him to theatre and my heart broke. He was so calm as I lifted him on to the bed, but watching them wheel him away, I couldn't hold back the tears. So I went back in to the room and fell apart. Now, the nurse who was taking care of Henry on the ward that day, the one who I gave a hard time to on the phone earlier, she came in to the room to check on me and gave me a hug. I am so thankful to nurses like her. They have a true heart for their jobs. They care. They get it. And they are fully there for every patient they work with. Even in the crazy times the world is experiencing now.
Henry was brought back to the room at 4:50pm or so. He was pretty drowsy still but I was told the procedure went well and they got what they needed. I was also told the typical side effect would be a fever. More uncommon side effects would be breathing difficulties. The consultant said at initial glance it doesn't look like a fungal infection, confirming what the ultrasound and other doctors said. However Bristol still want to take precautions and want Henry to continue with the medicine through his line every day until we go. This is the same medicine has had last week which is infused through his line in hospital for 30 minutes. Again, we are glad they are being cautious as we don't want him going through this transplant with a possible infection.
Henry seemed to bounce back fine after the procedure. I think all he was looking for was FOOD! A dinner arrived for him and he munched away. Guzzled down his bottle and started playing with his toys. As he was doing so well I assumed his obs would be taken and we would head home soon enough. Yet another time I was trying to control things and couldn't.
At 6:20pm Henry nearly fell asleep in my arms. The lovely nurse was in the room with us and was taking his obs when Henry suddenly threw up. There was a lot, but it seemed to be what he had for dinner and his bottle. He was really in distress as we frantically tried to clean him up and calm him down. The nurse went out to get some sheets for the bed and things took a turn for the worse.
I lay Henry down on the bed and started to take his clothes off and the colour totally drained from him and his legs started shaking. Honestly, he went blue. I then saw his heart rate on the monitor and it started to fluctuate a lot, dropping pretty low, then spiking high. I totally panicked and buzzed for the nurse. We tried to settle him but he threw up again. At this point the doctor was called who decided to give him paracetamol through his line. His temperature was 39.4. I thought this must be the fever from the procedure, but I was confused by his heart rate and his loss of colour.
I am so thankful for how quick the medical team acted and helped Henry. Through the panic all I remember is not knowing what to do, or feeling in the way, and telling David to come back to the hospital. Understandably we were told Henry would need to stay in hospital overnight for observations, and as much as I wanted to avoid that, I knew it had to happen. He was in the best place for help.
I've always said to David that I would be the one who stays overnight in hospital any time Henry is in, because I want David to get a proper sleep so he is healthy throughout all of this. Henry fell asleep so I decided to get some sleep myself. David helped me get the bed sorted and then headed back home.
Now, I hadn't really been paying much attention to my phone while all this was happening, but I checked it before I went to sleep and I am beyond thankful for all the messages I received asking about Henry. It overwhelms me to know so many people are walking with us in this storm and holding us up in prayer. It makes us stronger knowing that, with God, there is an army of people praying for my little boy. And since Henry was diagnosed, and even through life before all of this, God has came through and answered so many prayers. Well, the message that hit me most was from David when he arrived back home. He shared with me that he stood outside the hospital before he left and he prayed. It reminded how God is made strong in our weakness, and when we cry out He always hears us. God heard David and reassured him with the words 'I've got you'... another reminder that God is holding and protecting all of us, in every single detail of this journey. This gave me such peace before going to sleep, knowing we were in God's hands.
The night wasn't too bad, Henry woke up a few times, decided to be hyper for a couple of hours, then settled to sleep again. The nurse, who was amazing, tried to be so gentle when doing the obs throughout the night. Henry was typically distressed, but settled fine each time. I think I ended up getting 2 hours sleep, thankfully Henry got more.
He woke up properly at about 5:20am, so that was morning for me too! We played with all his toys for a bit, but I knew that he was a lot brighter and more comfortable that he was the day before. His obs were taken at 6:15am and his temperature had come down to 37.3! Praise God! He was also able to take some breakfast and his bottle, and it all stayed down. YAY! My exhaustion didn't matter to me anymore as all I wanted was for Henry to be better. So many answered prayers. Then more text messages came in asking how he was doing. Honestly, some times those ward rooms make you feel shut off, and very alone, but reading these messages made me feel you were all with me. And I am so thankful for that!
David arrived up at about 8:30am and we just chilled for a bit. Henry ate more food and drank more bottle, he was doing so so well. I ended up falling asleep on the chair bed, but we were then told one of us had to leave the room. Again, as much as I hated leaving Henry and David, I guess it was important for me to get back home and clean myself up (I didn't take anything to the hospital with me for staying overnight, perhaps due to my stubbornness lol!)... So I headed back home, but more settled as I knew Henry was improving.
David phoned and said the doctor had been in and said if Henry stays the way he was, he could head home around dinner time. I was happy they were keeping a close eye on him! So I headed back up at 3pm or so. I asked the doctor what the plans were. We hadn't heard anything about Bristol being postponed because of all this, or any confirmation on the travel and accommodation arrangements. We should be hearing tomorrow, please pray about this as not knowing is making us pretty anxious.
Eventually Henry was let home at about 4:40pm. I don't think I've packed up his belongings so fast before! Henry got on his feet and wanted to run out of the ward lol. He knew it was home time! We arrived back home and all was normal, went for a walk around the house, went for a swing, and looked for his dinner! He went to bed without issue which was amazing, as I sit here typing this he is snoring on the baby monitor. Prayers appreciated that he stays settled tonight.
So yeah, not really what we had wanted to happen in the last few days being at home before going away, but it's not about what we want. Thinking about it now, this gave us a tiny glance at what it will be like in Bristol. Ok, it won't be similar, but in terms of us tag teaming it to be with Henry for long periods of time, for being in a hospital overnight with him, for experiencing Henry being sick the way he was and having a fever, all of this will be a reality in Bristol for longer. Now I knew this had to happen because of his scan results, but I truly believe there were a lot of lessons from God in these last two days that are important for us when it comes to Bristol. God has been shaping and preparing us for what's ahead, and even though God will be with us every step of the way, we need to trust and speak out his truths over everything. And above all, sing his praises.
Sorry this was a longer update than usual, not every update will be this long lol! Thankful for your continued prayers, love, messages and support. We love you all and can't wait to see you all on the other side of this. I'll post another update tomorrow hopefully when we find out further details about Sunday. But for now, I'm off to bed! Stay safe and healthy folks!
Henry remains settled now until Bristol, we want him as strong and healthy as possible.
Confirmation on travel and accommodation arrangements.
Bristol is not postponed.
The medical team stay healthy ahead of Henry's treatment.
Everyone involved avoids Coronavirus, including the other families in the hospital.
We remember to trust fully and let go of control.
We enjoy the next few days at home and can rest.