It has taken me a long time to write this update as our experience this summer has been somewhat awful and I felt bad to write such a negative blog. The truth is that due to extraordinary pain of some sort we took Makayla to the emerge department on July 19th, we were admitted that night in hopes to get her into surgery faster! We stayed in a room of 4 patients, one of which was a little boy who threw up all night long, I can not even begin to tell you how tired and stressful this was. McMaster ( a well known children's hospital) has 2 cribs with tents over them to keep kids like Makayla safe while parents have to do things like well pee! One of these beds were taken and the other missing parts! Really?? So she slept in a regular bed where I feared at any moment she would wake up and dive out of onto the floor. How does one sleep when this is a very real possibility. Well you don't! If I had a car there i would have thrown the towel in right their and then, a screaming Makayla who had been awaken by barfing boy and a ridiculous amount of heart burn was enough to send anyone running to the hills!
However I stayed, the next day was zombie like for all of us. They had an IV started and put Makaylas name on the list for surgeries for the weekend. There was no guarantee she wouldn't get bumped but we were now committed in hopes that the g tube would somehow relieve some discomfort. Many, Many doctors visited us that day and we regurgitated the stories leading us there countless times. After supper Mak had to start fasting in case she went into surgery the following day. The GI doctor said it wasn't going to happen, she having very little interest in Makayla made my blood boil but I'll save that for another day.
The next day July 21st at 3 o'clock Makayla was put under and had her gtube put in. The procedure was quick! Mak had not eaten anything for nearly 24 hours now, and was not allowed to eat anything for another 24 hours. Yikes! My girlie was a trooper though and seemed to be content to rest for the rest of that evening, ( I guess sedation can even make a monster tired). The doctors said her recovery would be 3 days before we went home, and thankfully we were now in a room with only one other kid. ( The kid with the covered crib, Why I outta.....) Unfortunately her recovery took 8 days because she continued to have extremely painful episodes that no one could figure out. She wasn't able to eat for days, and eating a small amount of apple sauce or jello caused horrible stomach spasms, (where was the GI doc you may ask, well that is a great question!) The episodes were so intense I think we may have even scarred some nurses!
After running a few tests later the next week they gave up and sent us home, with a girl who still had sudden horribly painful episodes numerous times a day. They gave us ativan to at least help her cope. The following 5 weeks of summer remained difficult, her fits became nearly unbearable to watch and impossible to comfort. When everyone was out enjoying the last weeks of a beautiful summer we were hoping to just survive each day. With a week left before school started Mak broke out in a rash and spiked a fever and couldn't keep her feeds down ( did I mention through all this I had to learn to use a feed pump and clean it, blah blah blah, we tried night feeds which constantly woke her up, it has now come to the point where mostly I syringe liquids into her tube, every 30 minutes all day every day.) Anywho, I had her throat swabbed and 5 days later they called to tell me she had strep throat, ( 5 days, Really???)
So ten days on antibiotics to clear that up, in the meant time we had stated a new seizure med in hopes to back off another because we wondered if that med was causing some of the issues but after 2 weeks they had made Makayla without any other appropriate word 'psychotic'. Therefore we stopped that cold turkey and we are now trying another drug, an antipsychotic. ( Not a drug title any mother ever wants to talk about their child being on, I don't care how you wrap it!) however knock on some heavy duty wood I think it's helping.... stay tuned.
