Thursday, May 18, 2017

Day 1 May 17

Wednesday:

This morning r had his annual bronchoscopy and coincidentally he was also beginning to show signs of a CF exacerbation.  [For the past 7ish days R has developed a cough, rattling chest, and some green mucus. He was having alot of issues breathing and remaining comfortable during the night. I honestly pointed the finger to allergies, but unfortunately the bronch revealed the truth. ] R weighed in at 12.6lbs, his biggest weight yet, and his temp was great at 98.2. He did great during pre-op and enjoyed throwing football around the room, he even convinced some of the nurses to take a break and pass too. Since he has his gtube they were able to give his happy juice through it and shortly after he was very giggly and lovely. Speaking of the tubie recently, we had a scare and went to the ER and to visit surgery over it. His tube was swollen, red, hot, and painful to the touch. We never really got a diagnosis for the issue but we did 7 days of clindimycin and applied steroid and antibiotic creams to the site and resolved the issues. However, since his tubie got angry it then developed granulation tissue which is a big pain in the booty. I did everything I could to prevent it but unfortunately it won. We discussed having it burned off during the bronch but the team feels like it will clear up on its own.  Woohoo.

They started the bronch around 11 and the Dr came out around 11:25 to talk to us about the results. R's lungs looked worse than they ever have before. He had many mucus plugs and lots of think sticky mucus living in them. His lymph nodes were swollen in many locations along with his tonsils&adnoids. They cleaned his lungs and suctioned out loads of the mucus and thankfully underneath it all was no new damage. Praise the Lord. After they had cleaned out the lungs they placed a picc line in his right arm to administer antibiotics for the next 14ish days. They took cultures from his lungs and will do antibiotics according to what they grow. They also did his annual bloodwork and labs to ensure everything is working great. The procedure went smoothly without any issues. I think every time he has a procedure it gets harder to let them wheel him through those double doors. It is heart wrenching to let go of his hand, express all my love, and those ell him see you later. My biggest fear is him not returning to me. His beautiful brown eyes not staring into mine again. His warm hug never wrapping me up again. His strong laugh and deep love never again fueling my soul. Shew, it is so hard to watch him go. But I know that even when I can't be with him to hold his hand my God can. Even when I'm sitting in waiting area filled with fear my God loves me still and comforts me through prayer.

He had his first doses of antibiotics starting around 1. He did tobrymycin and ceftazidim via iv. All went great.

Post OP R was scared and wanted his momma. I felt so blessed and relieved to hear him crying and yelling my name in the hallway. He quickly wanted to nurse and snuggle for the next 4ish hours. Around 3:30 he took a nap. I woke up to him being very very hot. I woke him up and tried to take his temp but the thermometer in our room was dead. R was fine and talking to me as I wrestled with the machine. Instantly, he hands, feet, and arms flung out hard like a starfish. His eyes went crazy and his body started convulsing. Right before my very eyes my child went from his happy self to shaking all over and being unconscious. I instantly checked his pulse, airway, and elevated his head. I then grabbed his convulsing body and ran into the hallway screaming with all my might for someone to help me. I saw a herd of nurses running our way and I beat them back to our room. I placed his neck on a roled towel to give his airway room then I hit my knees. With one hand I held his hand and the other I lifted to my lord. I prayed out loud and hard. I felt as if i was talking in tongues begging my God to aid my child and our team. A team of nursing staff surrounded us. They gave himoxygen and had his on all the monitors within seconds. His oxygen saturation was low and his temp was over 104. He seized for overy 3 minutes before his body went limp. His oxygen strated to climb and they administered a tylenol suppository. They explained that a seizure is very hard on the body and takes many hours to recover. I kept asking if he would be okay. I was terrified that he wouldn't be okay or himself again. They reassured me that he would be fine and that he had a febrile seizure. They are very common and caused by having a high spike on fever. R was lethargic and twitchy for a few hours afterwards. Thankfully his o2 stayed good and he was breathing room air shortly afterwards. It was truly the most terrifying moment of my life. I felt so helpless aired afraid. I prayed like I didn't know was possible and God heard me. R was himself by night and I was so blessed. I cannot believe the that his little body went through that intense time. Thank you Lord for being with us and watching over him.

After all the commotion, R's fever was still high.  We started tylenol and motirin as often as possible and it broke late in the night. Thankfully he was normal self before he went to sleep. He was talking, laughing, and playing. God took care of him and we are so thankful. Tomorrow they will do an EEG to ensure everything is find in his brain. Day 1 of this admittance was full of events, hopefully tomorrow will be full of naps.



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