I guess this is what happens...you don't blog for SO SO long...and now there is so much to catch up on!
So, December...very much a blur. Today's my birthday. I am trying to remember last years birthday and I have NO recollection. Not because of my age and my mind not being as sharp...just the reality what being in "survival mode" will do to you.
We are now adjusting to having our tube fed baby. The thing with having an NJ tube, if baby somehow pulls it out, you have to go to the hospital to have it put back in as it goes thru the stomach to the small intestine and needs to be guided in with x-ray. Well, Merry Christmas to me. We woke early Christmas morning to find that Sadie managed to pull hers out. My Christmas morning was spent in the ER, where they have to call a specialist in (from home...enjoying his Christmas morning with his family) to have Sadie's tube put back in. I missed Christmas morning with my kids. It was not the best Christmas ever, to say the least. I felt slapped in the face with the reality of Sadie's "need". I find that I get that in doses and those times can be difficult.
Sadie was suppose to have her G-Tube (feeding tube inserted right thru her belly into her stomach) put in in January. This poor baby. The tape used to hold her NJ tube was eating the skin on her face. I was becoming a pro at taping her tube and her cheeks...but disliked very much how good I was getting at it. When getting the feeding tube, she was also going to get a Nissen. The Nissen is a procedure that they will do to people (kids and adults) who have severe reflux. The Nissen is when they take the stomach and literally wrap a portion of the stomach around her esophagus to disable the ability to reflux, burp, puke....However, if the retching is forceful enough, you can manage to vomit....Sadie has proven that!
At the same time as Sadie's procedures for her feeding tube and Nissen, we were going to have tubes put in her ears as well as a BAER Hearing Test. The purpose of the BAER Hearing test was that it was obvious that Sadie's hearing was impaired, she cannot be tested like "normal" kids in a sound booth. This test is performed while sedated.
I woke early the morning of surgery and got myself ready, bag was packed as we would be inpatient for a few days. When I went into wake Sadie up, she was seizing. Again, a horrible seizure, but this time we were prepared! We have Diastat in the house, this is a medication given rectally that will abort the seizure. Sadly, it was not working. A call to 911, a ride in the ambulance and we are back to DeVos for another week.
The cause of Sadie's seizure was a high fever. I don't remember exactly, but I know it was well over 104. I should let you know that the cause of her first seizure with us was also fever from immunizations. Once a child has febrile seizures...they are very prone to having them again.
The source of the fever was bacterial pneumonia. I cannot tell you how frustrating this was. First, bacterial pneumonia can be very tricky to treat...very different from a viral pneumonia that most people get. But her bacterial pneumonia is caused by something getting into her lungs. She eats nothing orally, so the only that could have caused hers was from aspirating on her own secretions (spit). She was "puking" up her spit frequently. Sadly, anytime she vomits, she runs a HUGE risk of aspirating. So, here we were suppose to have the surgery that day to help keep her from suffering the exact thing that we ended up in the hospital for!
I was crushed. I just could not understand WHY God would continue to make this path SO difficult for us? Why do we have to continue to see Sadie suffer!? Why can't anything be easy?
While all this with Sadie was going on, we went out of our way to make things as "normal" as possible for the other kids. They will never know the lengths and hoops we jumped thru to make the impact of these changes on them minimal. We never want them to feel frustration or resentment towards Sadie or us for all the changes that have been, are being and will be made as a result of having her home with us.
I feel like I just got over the stress of the first seizure...Sadie was finally sleeping in her own bed...her OWN room (only made possible by amazing friends). It only took 2 weeks for me to feel comfortable to let her sleep again in her own room. I still pray over her each and every night to keep the horrid seizures away.
All of Sadie's procedures were rescheduled for February. Another month of taping feeding tubes like a "Pro" :(
Looking back....when I had more "rational" thoughts and thinking, I know that Nick and I were not necessarily going thru this to learn a lesson. I begged with God just to let me see the point of what we were suppose to learn from all of these trials so we can move forward. It took a long time for me to realize that although we did learn...ALOT, we were not going thru this alone...and the lessons were not just for us to learn. Each nurse and each doctor...every therapist and registration specialist, family, neighbors, friends, church family, school family...they were all part of hearing Sadie's story. And many of them continue to BE part of Sadie's story. She (Sadie) is a LIFE CHANGER. Nobody is the same once them meet her and hear her story. We are just so lucky that God chose us to be the Story Tellers.
We aren't done yet....MORE TO COME!
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