Although our last post was about being home. Unfortunately, we didn't get to stay there long. Less than 24 hours later we were back in the hospital with a fever. They put him back on the iv antibiotics and took another culture. They wanted to make sure the antibiotics were working so we spent another 3 days in the hospital before finally returning home on Thursday. Tyler was in good spirits and you could tell he was happy to be home. Saturday was a gorgeous day and we welcomed the temps in the 70's and 80's. This summer has been so bad, I feel like we haven't gotten to do to much outdoors for fear of Tyler having a seizure because of the heat. However, this day was perfect and we decided it was time for Tyler's first trip to the zoo. Brian and I got some excercise walking the hilly paths and Tyler just took it all in. He loves being outdoors and it was great to get out in some fresh air.
This morning we received the results from the urine culture and it confirmed our suspicion of a kidney infection. We were hoping to go home today but the dr. needed to do more tests to figure out the specific strain of bacteria that was in the urine. She explained that although the antibiotic he had been receiving would make him feel better, it probably wouldn't completely kill off the bacteria. We needed to figure out which antibiotic to use based on the bacteria. We got some more specifics this afternoon and started the new antibiotic this evening. They did a blood draw and his white cells are down to 11,000. He is back to his old flirty self and we all can't wait to sleep in our own beds!
Watching the olympics.
Feeling better and ready to play.
He is Olympic training~ always stretch before your workout!
Tyler wakes up from his nap and is fussy and hot. I take his temperature and it's 100. I give him some Tylenol. 2:00pm
100.6 degrees 8:30pm
After rotating Tylenol and Ibuprofen, Tyler is super fussy and he still feels hot. I take his temp and it reads 102.8. Brian and I give each other "the look" and head to the ER. 9:00pm
Get taken to ER room and temperature is 102.9.
They give him some medicine and an hour later, he is still over 101. The dr. wants to get some blood, cath him for urine collection, and start an iv. The blood and urine are collected. Now, the hard part. Brian tells them the problems we always have starting an iv. They get their "go to" girl who proceeds to stick him 3 times failing to start the iv. Blood comes back with white blood cells elevated over 20,000. He will be spending the night. 1:00am
Taken upstairs to pediatric floor. They will try to start the iv. 3 more sticks=fail. His fever is up again over 102. He is sooo hot. All he can do is whine. 2:30am
I walk out of the bathroom and Brian is holding Tyler. I shut the door and his eyes pop open. He gasps and it happens. I have been dreading this moment for 16 months. I pray EVERY SINGLE DAY that this moment never comes. It came. He shifts his gaze and his body starts trembling. I run outside and start yelling for help. Nurses swarm in. One is timing it with her watch and one is getting him on oxygen. Time is going in slow motion and I am flipping out. As I type this, tears come to my eyes while I relive the scariest moment of my life. He lets out another gasp and starts breathing regular. One nurse breaks the silence, " I think it's over-I timed it at 3 minutes." His eyes flutter and his arm stays rigid. They put him in the crib. Things start to settle down but I can't stop crying. One nurse explains everything that just happened the best that she could and reassured us that during the seizure his oxygen level stayed above 80 percent. Brain loss occurs when the brain is not getting oxygen and she felt like he was breathing the whole time. 3:00am
They call in a dr. to try to start an iv. He tries 2 more times but is unsuccessful. They give him a shot of antibiotics. They want to start iv antibiotics and also have immediate access to give him medication in case another seizure is to occur.
We go over options and decide on the picc line. He will need to be sedated and a radiologist will use an x-ray to see to thread a line through his arm to the big vein that goes to the heart. This will give them the ability to do blood draws and give long term antibiotics if needed.
He gets his picc line. White blood cell count is exactly the same. Won't eat. Fever hovers between 101 and 102. My biggest fear today was that we were unable to lower the fever and he was going to have another fever. He vomits up his motrin. Friday Evening
He drinks his pediasure but vomits it up and then does it again at 1:30am. Still has a fever.
Cell count is still over 20,000. They are unsure why it isn't dropping. At it's height, the fever was 100.8 today. Late in the day he was able to drink and hold down a total of 10 oz of pediasure. His demeanor has changed dramatically and he is smiling. Tonight his fever is gone. We are hoping that the morning brings more good news and his white cells have dropped.
Brian and I are exhausted but elated that he is doing better. It has been a very scary several days. They are thinking this was all caused by a urinary tract infection due to the kidney reflux which will most likely need surgery to fix. We will find out for sure when the urine culture results get in tomorrow. We will be going to Riley the 20th to meet with urology, get some testing, and discuss the recent infections. Big thanks for all the prayers, visitors, and support. We are ready to be home!!!!!
Thank you so much for all your prayers and words of encouragement and support. I just received a phone call from the pediatrician about the additional tests and the results were all within normal ranges. We will also now be seeing the nephrologist that she has been consulting with when we go up to Riley for the urology appt. this month on the 20th so he can monitor Tyler from here on out. Another example of how trusting God seems to work a lot better than worrying about things I have no control over. Thanks again friends and Go TY GO!!!!