Wednesday, October 26, 2011
To say we had an eventful weekend would be an understatement.
Our weekend began Friday night with a trip to our local ER because Leo was having difficulty breathing- got him breathing- sent us home.
We were in the door literally 5 minutes and Leo had a seizure due to spike in fever.
Short version- ambulance ride to a different ER where we were admitted- total of 4 seizures occurred. In case you are wondering seizures are scary especially when your 17 month old is having one and you are home alone. A special shout out- to our local fire and ambulance company. We need to make and take them cookies as a thank you! This 911 call had a full size ladder fire truck at our door before the ambulance.
Discharged from hospital on Sunday morning.
Visited our pediatrician on Monday morning b/c Leo was back to not breathing right.
Sent to our 3rd ER where they gave him some more medicine and sent us home.
I think we have finally turned the corner. He still has snot, he is still breathing heavy, but he is breathing and that is all that matters.
We will be seeing a neurologist next Wednesday about the seizures and deciding what to do about so many seizures. For now we have special medicine to give him in the event of a seizure between now and Wed.
We are soooo thankful for friends and family who have stepped in to help us and take care of the other kids while we were at the hospital with Leo.
Please pray that Leo will be healthy enough to have surgery on November 14th!
Wednesday, October 19, 2011
I feel like the weight of the world has been lifted from my shoulders! Today, Leo and I met with an awesome doctor, his 2 side kicks and a dietitian. The doctor literally just sat and watched Leo do a tube feeding for a half hour. As he watched him, he just kept saying "this isn't right, this isn't right!" They hooked him up and monitored his heart rate during the feed. They checked his blood sugar. They LISTENED to me and saw first hand what I was saying. We were with this team for almost 2 hours! Bottom line- Leo is being over fed on the wrong type of food. They sent me home with a case of new formula to try. We also scheduled surgery to have a g-tube put in and a fundoplication done. They really showed compassion for Leo and all he has been through.
I have been trying to set up Leo's eye surgery and bronchoscopy for literally 3 weeks and I have been getting the run around. Apparently, the doctor we saw today has rank because within minutes of his surgery being scheduled for November 14th, both the eye doctor's secretary and the ENT secretary jumped on board and both of these surgeries will be done on the 14th.
So, November 14th will be a huge day as Leo will have 4 procedures done. He will be in the hospital for at least 3 days. I am still waiting to talk to the Cardio doctor, BUT amazingly he called while I was driving home and should be calling me back shortly. (it might have had something to do with him being emailed by my new favorite doctor about the upcoming surgery and needing clearance:)
I feel like we are headed in the right direction and I really think a huge part of Leo's medical riddles were untangled today!
Saturday, October 15, 2011
Saturday, October 8, 2011
We spent the morning out at the pumpkin patch and picking apples. It was such a glorious day- the weather couldn't have been more perfect. Pop-pop, Mom-mom and Andrew joined us as we all traveled to and from in what Andrew calls the "bus". Pop-pop treated us to lunch afterwards which was a wonderful treat! Now we are headed down to a carnival and concert at our church. Jeremy, Amanda, Tyler and Jordan have already headed out as they are making balloon animals at the carnival. So much to be thankful for today!
Monday, October 3, 2011
I don't think God received the memo where I decided at a young age that I had no desire whatsoever to go into the medical field. My strengths are NOT science and math. I am in awe of medical technology, but really have no desire to completely understand how the heart works or how to place an NG tube.
So, I just found myself laughing in the cardiologists office today as he was telling me they were going to teach me how to take and keep track of Leo's pulse. Fortunately (for me), Leo is too chubby and the doctor had difficulty finding his pulse on his little chubby wrist and declared if he had trouble then I would not be able to do it accurately. I readily agreed thinking I was off the hook. No, instead of learning how to accurately take a pules, I learned how to work a heart monitor! Leo will be attached to the monitor for 24 hours. I just have to write down every time he changes activities in a log and when it shuts itself off in 24 hours I have to remember to fed ex it back to the doctor.
Why a heart monitor?- Leo has a high heart rate. We are trying to figure out if it is high all the time or just in the presence of doctors. I also learned that he has a slight hole in his heart that should have closed by now but hasn't. We will go back in a year to revisit the hole and if it has not closed we will talk surgery at that time. I now understand how the heart should work and how Leo's is working as I received a mini science lesson during our appointment. I almost asked if I could bring in a group of home school kids for this lesson but decided against it.
I have decided that by the time Leo is twenty I will have an honorary medical degree or at the very least enough knowledge to pass the test to get into medical school.