28/12/2021
We hope everyone had a very Merry Christmas weekend! Reef is still inpatient here at Arkansas Childrens Hospital HemOnc department. Santa is waiting patiently for Reef to be released from the hospital and feeling better so he can enjoy his extra special good boy Christmas that he definitely deserves!!!
To be completely honest this weekend has been an extremely rough one! Reef’s nurse says that Reef has the worst case of mucositis that she has seen. He has bloody sores from his lips, nose, and mouth most likely all down his GI tract to his b***y! So of course he is still not eating or drinking.
Here’s a synopsis of what has been going on with Reef since I told you all he was admitted…
Friday- I accidentally pulled Reef’s port access out which has been the worst I believe I have ever felt as a mom to date, but of course Reef took it like a champ and in true Reef fashion he knew how absolutely terrible I felt so he made me feel better by giving me extra top notch Reefy Brew lovins and cuddled with me the rest of the day!
Saturday- we found out that on top of the human metapneumo virus Reef has, he also has a touch of pneumonia in his left lung. He was already on all the antibiotics to fight it so they didn’t feel that they needed to do anything else but watch it.
- we weren’t expecting Reef’s hair to already start falling out the first month of chemo, but of course it did and because I had it in a tight man bun on top of his head and because his head started itching like crazy he had basically been scratching it off his scalp. His man bun turned into one big dreadlock and was just hanging on by a few hairs. So Sean got his turn with the clippers and shaved Reef’s man bun off! We were planning on donating Reef’s hair again but unfortunately there was no getting the rats nest that Reef made by scratching untangled so no one will be able to enjoy a wig made from Reef’s gorgeous locks this go round!
- Saturday night Reef was having labored breathing due to his belly being so swollen and not giving his lungs enough room to do their thang. The docs thoughts were that the swollen tummy was caused by the morphine making his bowels fall asleep and not be able to move anything through it. So they gave him a med that reversed the morphine effects on his intestines and they lowered his morphine. So, needless to say, Saturday night was pretty rough! Reef was in a lot of pain and he couldn’t breathe well.
Sunday- after the rough night I got up to check Reef’s pull up to see if the meds were working yet, and it was a complete blow out! Reef’s nurse was still in the room while I was checking his pull up so I told her he 💩 so she came to the bed to check it out. Just as soon as she comes to take a look Reef let’s out a groan and out comes literally a 1/2 gallon of bright red blood. This was the first time our nurse had ever seen this happen on the HemOnc floor and she immediately ran out to call the MET team. Of course everyone was extremely worried that he was bleeding internally somewhere and we all knew that meant that Reef was in immediate danger!!! Thank God once the MET team came and assessed him and did some scans, they came to the conclusion that the blood was from Reef’s horrible mucositis and Reef swallowing it instead of spitting it up! It was an extremely scary morning! But on a good note Reef has actually felt a bit better since the blood episode!
Monday - Reef is still extremely swollen all over, his tummy is still bloated and hard as a rock which makes it hard to breathe and causes him a lot of tummy pain but we are hoping he will release some more of whatever is in there at the moment and it will make him feel much better. He has actually been talking a little bit today, which we hope is an indication that his mucositis is starting to heal up. His lab numbers are kind of all over the place and he needed platelets again this morning. But his ANC is going up every day so this is reassuring that we are headed in the right direction.
Reef never ceases to amaze Sean and I, even while he is scared and in extreme pain he still somehow has the compassion to make sure that the both of us are ok and for us to know that he loves us! He is definitely a treasure, our gift from God and there is not a day that goes by where we don’t cherish every moment with him! We appreciate all the love and prayers that have been coming Reef’s way, please keep them coming!!!
