Friday, May 19, 2017

Day 2 May 18

R did good through the night last night and we kept tylenol and motirin in him as much as possible. When he woke up this morning it was 98.0. Since his temp stayed down all night I requested that we stopped the tylenol to see how his body responded. Thankfully, I made the right decision and his fever never returned.

During the night, he was relatively coughy and congested. I would way more than his normal and that stems from the bronchoscopy.  Once they go in the lungs and dig around it takes the body some time to expel what the residual. We are doing treatments 3x daily and tobramycin 1x and ceftazidime every 8 hours. (4pm, 12am, and 8pm)

We were awoken at 5 this morning to prepare for the EEG. They wake the kiddos up super early so that they will be wore down during the procedure and sleep during the second half. R was literally the best patient during the EEG I was truly amazed and so thankful! They took us for the EEG around 8:30am. We went into a little room, answered some questions about how the seizure took place, [still cannot believe that happened, wow.] And then they began placing the 22 electrodes on his head. He didn't cry or whine at all. He sat there and played with a measuring tape the entire time. Once the electrodes were placed, they sat a flashing light in his line of vision and it showed various bursts of light in different sequences. R kept saying that it was taking pictures and he would smile or make silly faces. Once that was done, they told us to take a nap and they turned on a soothing sound machine. R nursed and quickly fell asleep. [Pretty sure that I took a short nap too, oops.] He napped for like 20-30 minutes then the procedure was over. We removed the electrodes and returned to our room where R was able to take a well deserved shower.

A few hours later and the results were in! A neurologist came in and said the EEG looked great, Thank you Lord!  She talked some about febrile seizures and their frequency of returning. She prescribed some emergency seizure meds for once we go home in case it ever happens again and lasts over 4 minutes. The medicine will help stop the seizure quickly then we should call an ambulance. Shew, let's not do that....

R did great during treatments and weighed 12.8k! Our flook is full of CF people so going out of our room is very challenging. But at one point today everything fell just right and we ventured outside for a few short minutes. R ran around and we colored with chalk. Quickly he got hot and out of breath and we returned back to our suite.  I am so thankful that we the opportunity to see the sun shine and feel it's warmth on our skin.

While we were on the little outside bridge thing below us was 3 kids battling cancer. They were without hair, hooked up to IV's, and various ages. We smiled at them and waved hello. Each of them were smiling, happy, and enjoying life. Even though they are in a war against cancer they are still joyful. Seeing them broke my heart! I can't imagine their parents fear,  the patients pain, and the families daily life. But as I stood there glancing at them I felt so thankful. Thankful because we have treatments for cancer. Thankful because they can still smile amiss the pain. Thankful because my child has the opportunity to be happy despite his diagnosis.  Thankful because Christ's words still stand. He has a plan for us, beautiful and true. A plan to not harm us but to create for us a beautiful future. God is good. Despite our pain, let downs, and confusion. God is still good. In him is joy beyond belief.

Once we came inside, we took a very needed nap! The rest of the night was uneventful. We watched movies, built houses with leggos, played tablet, and did puzzles. At some point in the day I decorated our suite and make it more homey.

 A good thing about a home is similar to good thing about joy. If you want it, you can create it anywhere....

A huge thankful to everyone who is on this rebellion with us. Thank you for the text, messages, and comments. A huge huge thank you to my sister and mama bear who packed up all our stuff and brought it up here and stashed our cabinet with food and new toys. I am so blessed with an army of friends and family rebelling by my side. Cystic Fibrosis messed with the wrong boy and his army.


CPT is vital is keeping the lungs healthy. So thankful for respiratory therapist who pat-pat my child to keep him strong. 

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