Trains, magicians and Batman Boots
Yesterday was a long day. I’m not sure that there was even a five minute window that there wasn’t someone in our room. We woke up to having to have another platelet transfusion. Then we met with drs about the general plan (which is still a little unclear). Then we had chaplains, nurses, child
Life specialists, magicians and dogs all come by before lunch. He got a new wooden train that was loaded up with all kinds of fun animals and veggies. He had a private magic show preformed for him. He hung out with Zoe the therapy dog. He had lunch brought to him from his aunt Rachel. He had his favorite nurse from Nemours come visit and bring him a card signed by all the staff over there. Then he began his 6 hour IV antibody drip. This requires vitals checks every 15 min. So obviously no nap for George yesterday. Just as he was tiring out and starting to feel a little sick, a care package from his Gigi arrived and among all of the fantastic food and toys was about the coolest thing he has ever seen. A pair of Batman Boot slippers including tiny capes on the back of them. He may or may not have teared up a little with excitement. When we were finally able to go to bed at 9 we both slept surprisingly well even through all of the meds and blood draws throughout the night. It was an exhausting but very fun day. In one of my talks with his drs I was told of the seriousness of keeping George from getting any viruses. It would be an extremely bad situation if he got sick. This is going to be so hard. One of the nurses told me that every single room in the children’s hospital was full right now because of the flu and RSV outbreak going around. George may be protected at some level in the hospital but I eventually will be taking him home and I have two little girls there who go to school everyday. Heavy heavy prayers for not only George to stay protected from sickness but also for Bowers and Kate. Realistically we can not prevent them being around each other once we are
home. I had them come up to visit George a few times this week already and that got shut down yesterday too. During flu season (now) children aren’t even allowed to be on this floor. For all the patients sake. We will batten down the hatches as best we can and pray for our bubble of protection over not only George but for our whole family. Today we have an 8 hour IV drip of Rituximab again which is the one he had last week that made him so sick. They will give him some zofran to help with the nausea this time so prayers that it works and that it doesn’t kill all of his counts again. They say that was just coincidental but it still makes me wonder if that is what caused the change in everything with him. Anyway, we go into today with strong faith and believing for healing and for a turn around in his health. Rise up inside of him Lord. Only you can heal him. We believe. We trust. We will wait patiently.
Life specialists, magicians and dogs all come by before lunch. He got a new wooden train that was loaded up with all kinds of fun animals and veggies. He had a private magic show preformed for him. He hung out with Zoe the therapy dog. He had lunch brought to him from his aunt Rachel. He had his favorite nurse from Nemours come visit and bring him a card signed by all the staff over there. Then he began his 6 hour IV antibody drip. This requires vitals checks every 15 min. So obviously no nap for George yesterday. Just as he was tiring out and starting to feel a little sick, a care package from his Gigi arrived and among all of the fantastic food and toys was about the coolest thing he has ever seen. A pair of Batman Boot slippers including tiny capes on the back of them. He may or may not have teared up a little with excitement. When we were finally able to go to bed at 9 we both slept surprisingly well even through all of the meds and blood draws throughout the night. It was an exhausting but very fun day. In one of my talks with his drs I was told of the seriousness of keeping George from getting any viruses. It would be an extremely bad situation if he got sick. This is going to be so hard. One of the nurses told me that every single room in the children’s hospital was full right now because of the flu and RSV outbreak going around. George may be protected at some level in the hospital but I eventually will be taking him home and I have two little girls there who go to school everyday. Heavy heavy prayers for not only George to stay protected from sickness but also for Bowers and Kate. Realistically we can not prevent them being around each other once we are
home. I had them come up to visit George a few times this week already and that got shut down yesterday too. During flu season (now) children aren’t even allowed to be on this floor. For all the patients sake. We will batten down the hatches as best we can and pray for our bubble of protection over not only George but for our whole family. Today we have an 8 hour IV drip of Rituximab again which is the one he had last week that made him so sick. They will give him some zofran to help with the nausea this time so prayers that it works and that it doesn’t kill all of his counts again. They say that was just coincidental but it still makes me wonder if that is what caused the change in everything with him. Anyway, we go into today with strong faith and believing for healing and for a turn around in his health. Rise up inside of him Lord. Only you can heal him. We believe. We trust. We will wait patiently.
Love you, Amy and George!!!!
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