Well day two is done. What an overwhelming day of information gathering. We met with so many people today. First the neonatologist (premature baby doctor), then the maternal fetal specialist, then the nurse practioner for a physical, then the neurosurgeon, lastly the chief surgeon of the study as well as CHOP. We also took a tour of the NICU and delivery units here at the hospital. So we didn't learn a ton of new information today but we did learn a few things. The level of the lesion actually starts at L4, which was dissappointing news for us to hear. The hydrocephalus is still considered mild to moderate at this point and we were given statistics that with Grayden's level of lesion he has about a 70-85 percent chance of needing a shunt at some point following his birth. We heard all the scary details of the surgery and all of the possible outcomes. We also heard the possible benefits. So at the end of the day, we still qualify at this point with one tiny hurdle that I need to get over. I cannot swallow pills, and in order to be a part of the clinical trial if I were selected for the prenatal surgery I would have to take an oral medication four times a day to prevent my uterus from contracting. Sooo, this was obviously devastating to me and I feel extremely guilty. Needless to say I will be practicing with placebos tomorrow morning in hopes that I can overcome this. I don't know how I will ever get over knowing we were disqualified for something so extremely stupid. Austin and I have made the decision that if we can participate we will select to be randomized tomorrow. We feel at this point that it is the best chance that we can give this little boy and the risks at this point in our opinion seem to be worth it for the possible benefits. So wish me luck tonight that I can figure out a way to trick my mind to let me overcome this little obstacle.
This has been an exhausting day for both of us, but I feel like especially for me. I am anxious about the possible upcoming surgery. I also feel horrible that we may disqualify over something that is totally within my control. I am also missing Zander like crazy. I wish so much that we were not even in this position having to make such difficult decisions. I also wish that we could be home enjoying our son and happily anticipating the arrival of his little brother. This is harder than I could have ever imagined; however we have to continue moving forward taking one day at a time. We are trying to worry about only the things that are within our control, although this is such a hard thing to do (for me more so than Austin I think, bc he says I worry about everything:))
Wish us luck for tomorrow and if anyone has any brilliant ideas for me, then please feel free to pass them along.
Kelly
12
4 years ago
kelly, rojelio acutally has the same problem with not being able to swallow pills. the trick is to not put the pill in the back of your mouth. put it on the front of your tongue just as if you were forming a bolus with your food. take some big gulps of water by itself so you can feel how your tongue moves before you do it with the pills. the thing is you have to relax with the pills (easier said than done, especially with all you are thinking about). take some big gulps of water that way you'll have to open your throat more in order to get the water down & the pill will go down with it. it may help that you do it by yourself without an audience so you'll feel less pressure. also a distraction may help (ie watching tv or reading my blog!!) so you are not thinking about swallowing the pill as you are doing it.
ReplyDeleteKelly what about putting the pills in applesauce or pudding. They will slide right down that way. That is what we nurses do at the hospital with patients who cant swallow pills.
ReplyDeleteIt's worth a try.
Thinking of you both tons!!!
Kelly, I know you can do this! You can do anything that you have to for that little face looking up at you with so much trust! Imagine Grayden as a mini-Zander with those big blue eyes and sweet smile. Just think of that when you put the pill in and swallow. Also I was going to suggest ice cream-just a tiny spoonful and swallow down. Good luck Sweetie! All our thoughts and prayers are with you all! Mom #4(Cheryl)
ReplyDeleteI have seen special cups for children to swallow pills. You put the pill in one part and fill the other part with water and then you drink from the cup like normal. Maybe you could ask the nurses about getting one to try. I saw a movie on drug mules from Mexico once. This girl had to learn to swallow drugs in baggies. Crazy!
ReplyDeleteI know you will be able to do this. Your strength through this whole ordeal has been inspiring. We are thinking of you guys, good luck today
Thanks for all the advice everyone. I actually did it on my first try this morning. I guess when you are motivated enough, anything is possible. Just hoping its as easy when I have the audience of the doctors around. We are just waiting on the call from the nurse who is in charge now to find out when the time will be that we will get randomized.
ReplyDeleteKelly
Way to go, Kelly!
ReplyDeleteWe all knew you'd be able to find a way to overcome this obstacle. You can do anything you put your mind to!
Take care,
Jo
Woo Hoo!!!! Way to go Kelly!! First time - it's not a fluke - you are an amazing woman. I mean you had Zander with ZERO drugs this is peanuts compared to that. So proud of you!! Thanks again for keeping us updated. Praying for you and Grayden constantly. Love ya!!!
ReplyDeleteKelly, I am thinking about all of you guys! A trick I use to take pills is to first put water in my mouth, then throw the pill in and tip my head back. It may seem odd but I couldn't swallow pills for years and this finally helped:) I hope you surgery goes well and that everything works out for you guys. Take care!
ReplyDeleteAmber Gould