For those of you that have gotten used to my nightly updates, my - TopicsExpress

For those of you that have gotten used to my nightly updates, my sincere apologies. The last two days have been pretty hectic. I had NO idea how much was involved in a 4 ½ year olds dance recital. Although it was certainly a positive experience for Makenna it’s not one that she (or we) want to repeat any time soon. She was of course adorable and did fantastic but I think she was just as annoyed as I was with the hour long process of putting in sponge curlers, doing hair and make-up, dress rehearsal that took all morning and then sitting back stage waiting for her own dance while missing everyone else’s. I did sneak her out to the auditorium so she could watch for a bit which she enjoyed. Needless to say you won’t see us on “Dance Mom’s”. JP is doing “OK” as far as we can tell. I wish I could go one way or the other but unfortunately we just don’t have the answers we would like. We were originally supposed to be released from the hospital today which didn’t happen. He has continued up and down fevers since Thursday evening. His body temperature went hypothermic again that evening which is scary and he was wrapped like a mummy but rebounded quickly. He also started vomiting again Thursday night and into Friday. We’ve been given multiple possibilities as to the reason. It could be what’s called a “drug fever”, it could be that he picked up a virus from the hospital or from people coming in and out (including us). The doctors continue to take blood tests and look at him from a “clinical” standpoint which fluctuates from day to day. The main thing we are trying to figure out at this point is why his CRP levels started to increase again (which indicates infection and/or inflammation) and why he continues the fevers. He hasn’t eaten but a couple of ounces a day of formula or Pedialyte which is another concern. He’s lost about 2 lbs so far (not that he didn’t have that to give… ha ha) but he does need nutrition. Between 4 straight days of no nutrition, 2 days on, and now another 2 days of nothing, I’m hoping they will put him on something IV tomorrow if he doesn’t perk up and start eating. There are so many more details I would like to share but I think the details are moot to anyone reading at this point unless you’re in the medical industry and can help with a medical opinion. The long and short of it is that he gets better for a day and gets worse for a day or two. And that cycle had continued the entire length of our stay. He is on day 15 and I think JP wants answers just as much as Mom and Dad and everyone else who’s been praying, offering support, and helping in any way possible. From a Neurological standpoint, we’ve been given continuous reassurance that JP looks SO much better than anyone would have expected given what he’s gone through. That keeps us in a positive and forward motion. However, I continue to keep a guarded outlook on everything given the continuous teeter totter we’ve been on since this started and having read up on the very long road ahead of continuous follow ups. Even when this is all said and done, my little fighter will have to go through at least 3 years of continued follow ups appointments and testing just simply because of the nature of the infection and the antibiotic he’s been on. I apologize that this isn’t a more positive update which it really should be. We’ve had many smiles and laughter’s from JP. He is an incredible little guy for 8 months old and I am so proud of him for enduring this. Mommy and Daddy are just getting exhausted and now realizing that we have to make sure every detail is documented and mentioned because there have been some mishaps with the hospital. You would like to think the healthcare providers have their act together but when you come to the realization they are human too, you only have one choice… be the loudest voice. That means we have to keep on our toes and keep ourselves educated and informed constantly. I hope to post an on topic but off update post one day soon to all parents of young children about our experience. I have much insight and advice that I hope will help anyone that ever has to go through an extended hospital stay or very serious illness with their child. Additionally I am now a HUGE advocate for immunizations. I know it’s a controversial subject but our son is now a part of a study that may change the Meningitis immunizations your child receives in the future. The strain he had has been looked at by the CDC and is being studied. I’ve now been taught that a case like JP is how vaccines continue to evolve. On yet another note, I was SO hoping today I could send out our love and thanks to SO many people who deserve recognition for all they’ve done. I don’t want to do that however, until my son comes home and I have a chance to really reflect on all of the generosity, support, and love we’ve received through this experience. I just want EVERYONE to know that we are well aware of all the love in all forms we’ve received during this time. Josh, Makenna, and I are so extremely grateful to everyone. I will continue our updates but just know that as this continues they may be every two days or so. I know how much our friends and family have become invested in this situation and I do want you to be in the know, but things seemed to have slowed down from a progress standpoint so until JP is released, I will continue to post updates as there is enough information to share. We love you all and thank you again so much for everything. -