It’s been awhile since I’ve posted a Perri update, so I thought I would take the time to let everyone know what has happened in the last week. Our incredibly brave, beautiful and very precious daughter was admitted to the Cleveland Clinic Main Campus on Monday. It was a scheduled admission. Kevin and I agonized over this decision for months, but came to the conclusion we had no choice but to move forward. Perri had a spinal fusion surgery with instrumentation from her T2 to her sacrum. What does this really mean? She was cut from just below her neck down to her bottom and had rods and screws put in her back to attempt to correct the curvature in her spine. Her curve was almost 90 degrees. It is expected that she has somewhere between a 20-30 degree curve as a result of the surgery. Again, what does this mean? Perri curved to the right. Her curve increased by 20 degrees in just 2 years. If we would have let the curve go, we risked her right lung and diaphragm collapsing. This would mean multiple hospitalizations with illnesses, potential for full time ventilator instead of only using it during naps and sleep. So, Perri is fused poker straight. We cannot Bend, Lift, or Twist her and unless she is in bed, she has to wear a very hard shell like cast called a TLSO. Her spine during the healing process has to be perfectly straight. Perri tolerated the surgery like a superhero. My personal concern was if she’d be strong enough to withstand the 6 hour surgery. Surgery went better than expected according to her Dr. Her ventilator settings never needed to change to support her breathing. She was on the ventilator out of surgery and for a period of time while awake, but we were able to easily wean her off during waking hours. As her Dr. would put it – the scary part is over, now the hard part begins. Perri suffers from severe dystonia and spasticity. Her muscles are starting to fight the instrumentation. She has jerking and spastic muscles that fight against what was done to correct her curve. She continues to battle the post op fever and still has a pretty significant amount of pain and blood leaking from the wound into the dressing. Bowel movement management is critical as Perri has issues where things just happen to get out of control. Since she is tube fed, her stool is liquid. The risk for infecting the surgery site is greater for her. Our home care nurses came up to the hospital during Perri’s stay and performed their shifts. I am so thankful for them and the care they provided. We have to have our home care attend the hospitalizations as the hospital cannot provide one on one arms reach care. We had to bring so many of her personal medical supplies that the hospital does not stock. Very dear friends came to support her as well. How amazing is it that she was able to smile and complain to those around her about what happened. Perri had the opportunity to speak with her speech therapist regarding the surgery before admission. She said her hip hurt her, and that she knew the surgery would be better for her, and she was somewhat agreeable to the surgery. She indicated she understood it was the best option for her. Ultimately she did say she wanted it done with reservation. Kevin was ill prior to her surgery so he had to stay out of the house for about 5 nights. Finnegan went with him to Grandma’s house so Perri could be clear for surgery. Perri was discharged today. The expected hospital stay was 5-7 days per the Dr. I felt anything less than 14 days would be a blessing. They count surgery day as day zero. Mon – 0 Tues -1 Wed – 2 Thurs 3 Fri – 4. Technically she even beat the Dr’s expectations and they discharged her directly from the PICU home. 4 days! We saw her entire respiratory team – those that took care of her during her multiple hospitalizations in the past years…many of which were life threatening. It felt like a family reunion and everyone was so kind, considerate and caring. Hugs and smiles were abound by those that remembered us. They also remembered how much of an advocate I am for my daughter, so when there was discussion of moving her to ‘the floor’ they forewarned me and told me to fight it. There is so much illness in the hospital, we ran the risk of her getting sick after surgery. Well, the Drs listened and we came home. It’s nice to have a Dr say to you after I explained myself and actions – “No, you didn’t offend me, I appreciate your concerns, and please don’t ever change what you are doing. Stay exactly the same.” I almost burst into tears for I held my ground regarding placing Perri at risk for any additional complications….in front of a team of about 10 people. So, we are home! She is happy to be here. Transferring her to her wheelchair and the changing table is challenging. We will all be learning how to do it safely and with the ceiling lift as it is safer for her. I am thrilled and scared at the same time. We have a whole new Perri – I told her she was my Bionic Woman, Dyna Girl, my superhero. She sits taller in her wheelchair and to me- looks older. We are thankful and grateful that He watched over her. Our God is an awesome God. He has always had a plan for her. Always. It’s times like this that I am overwhelmed with how amazing our God is to cover her with his healing hands and grace. We are so blessed. It takes my breath away. It wouldn’t be me if I didn’t keep busy prior to the surgery to keep my mind off of it. We had Perri’s whole space repainted. Bedroom, bathroom, kitchen, laundry room. I felt she was coming back a new girl – a big girl, so her space should reflect a new beginning. She was thrilled when she came home. I have to admit, keeping busy helped take my mind off of the severity or ‘brutality’ (her Dr’s words) she endured. We had to work like crazy people to put her bedroom back together because discharge was so early. We’ve tackled this battle, but we haven’t won the war yet. She’s going to take several months to heal…honestly so will we. So, as every day comes upon us, I instantly feel guilty for all the complaints I’ve made over the months, the issues I felt were huge but really weren’t, and think about this incredible little girl. She will always be my baby. I can’t express enough how every ounce of my being is engulfed in protecting her (and of course her brother). Kevin and I are so good together in times of crisis. It’s unnerving that the subject matter is usually Perri’s health. With all that said, I will attach a few pictures for you to understand what she’s endured. She is truly a gift. I continue to pray for her healing, and I pray those caring for her are able to adapt to the new Perri. We all have our work ahead of us! I’m hugging her a little tighter, a little longer and Finnegan is getting extra hugs and smiles. Kevin has been amazing with managing his job and taking Little Guy all over the place. We live one day at a time, but for some reason Perri lives like she’s going to be 103 like Jiminy Cricket. I honestly think she may! We do hope that this update finds you and your families well. God Bless each and every one of you….may your days be healthy and filled with unconditional love. Love, Kris (Kevin, Perri and Finnegan) Pic1 PreOp, Pic2 PostOp, Pic3 GoingHome, Pic4 Incision
Posted on: Sat, 20 Sep 2014 02:35:53 +0000
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