As most know, Evie underwent surgery on July 11th, 2016 to release her tethered cord. While tethered cord is pretty common in people with spina bifida, it is unusual that Evie was displaying symptoms requiring surgery at such a young age. It was expected she would need her first release between the ages of 5-7, but she had other plans. It was a big decision for our family and the neurosurgery team to move forward with the surgery but we all felt it was the best choice.
The morning of July 11th started out just as any other surgery day does – wake up call around 4:00 am, to be out the door by 4:45 and get to the hospital in time. Once we got to Cardinal Glennon things moved fast – it’s a well-oiled machine there at Cardinal Glennon and each team knows how to get things done… ON TIME! We met with Dr. Elbabaa (Doc), Evie’s neurosurgeon, she was so excited to see him and before we knew it it was time for Evie to be taken back to the OR. One of the many reasons we love Evie’s neurosurgery nurse practitioner, Anne, is the absolute love and compassion she shows to Evie and the entire family – she made sure to be in our pre-op room before Evie was taken back so that Evie could be taken back (to a place where mommy and daddy weren’t allowed to go) with someone she loves. There were no tears until mommy lost it as they walked behind those double doors but Evie was very happy to be in Anne’s arms.
The surgery was expected to take about 3 hours so we had plenty of time to ourselves in the waiting room. As we do for each of Evie’s surgeries, we claim our spot in the waiting room right in front by the door and the screen that updates with the progress of surgery. We all patiently awaited Dr. Elbabaa and his update. We got the call that Doc was ready to meet with us and when we saw him exiting the OR he was smiling ear to ear. At that point I knew everything was ok and we absolutely made the right decision to go forward with this surgery. I think it’s every mom’s fear that you put your kids through something unnecessary and with that smile I knew that wasn’t the case. Doc explained how Evie’s body wasn’t processing scar tissue like he had expected and there was very thick scar tissue that her nerves were tangled up with. He released all the tethering and closed her up. Once Evie was in PICU (Pediatric Intensive Care Unit) we would be able to see her.
Evie was placed in PICU because she had to lay completely flat on her belly for the first 24 hours which required an IV drip of medication to keep her sedated. She would wake up for short amounts of time and look around and then go back to sleep. During our time in PICU Doc and Anne would visit often – Anne, often sitting down in the rocking chair next to Evie’s bed just to watch her and talk to her. It felt as though there wasn’t another patient in the hospital she needed to be tending to – to feel that immense amount of love and comfort during such a fragile time in Evie’s life was priceless.
Day 2 brought Evie her much desired food (applesauce and cheerios) as well as a move to the regular floor. At this time Evie was also allowed to begin doing time on her back, although she usually does prefer her belly. We got moved into our new room late morning on Tuesday and would stay there the remainder of the week and be discharged Friday afternoon. During our stay on the regular floor Evie met with Occupational and Physical Therapy and was able to play in the play room some. Many visitors brought Evie and the family treats, goodies and presents which helped brighten her days! We were trained on how to care for and clean her wound and had a scheduled follow up date with Anne.
Things didn’t go as planned once we were home. Evie’s incision began looking very red, irritated and “angry” looking which sent us back to the ER at Glennon Saturday and Sunday. On Sunday they decided to admit us so that we could see Neurosurgery first thing Monday morning. It was determined Evie had an allergic reaction to the cream we were prescribed and also had a yeast infection along the incision line. We were sent home early afternoon on Monday with a new plan and new hope we had this under control…until Wednesday when Evie’s incision continued to look swollen and puffy – which brought us back to Cardinal Glennon Thursday afternoon for an appointment with Anne and Doc just to be safe.
We met with Anne and just as we were discussing a plan Doc walked in the room and began examining Evie’s back. Doc was concerned because as he manipulated her back fluid was coming out of the incision line. There was suspicion that the fluid was spinal fluid (CSF) so he instructed Anne to admit us and get us in the OR as soon as anesthesia would allow (Evie had eaten breakfast). We were taken to TCU (Transitional Care Unit) with pretty much nothing. Since we were just there for a clinic appointment all we had was Evie’s diaper bag. The Child Life Specialist in TCU jumped into action getting us a phone charger and tons of goodies for Evie. I think Anne’s heart broke just a little bit by the news of another surgery. I held it together until it was time to go up to our room – Anne could just see it in my face and gave me a big, giant hug and promised it would all be ok – I tell you all, she’s amazing and really cares for not just the patient but the entire family. We were scheduled for the OR at 4pm that day.
Before surgery Doc made a call to the Chief of Plastic Surgery at Cardinal Glennon to assist him in the closure of Evie’s skin. Since Evie had a skin flap done shortly after birth to close the opening in her back it can be a little tricky to close up and Doc felt more comfortable having Dr. Lin in the OR just in case – we were thankful Doc had thought ahead, just in case. We were warned this surgery could be longer than the first if the plastic surgeon was needed just to their meticulous nature. Doc came out of the OR less than an hour after she went back – again with a big smile. Doc informed us that he ran tests on Evie’s closure beneath the skin (where he did the de-tethering and repair) and there was no leakage of spinal fluid…GREAT NEWS! He said that Dr. Lin was now closing her back and that a new incision was going to be needed to give Dr. Lin more skin to work with. But then what was that fluid that was coming out of her back??? Dr. Lin later explained that a Seroma had formed, which is a pocket of fluid the body makes and for some reason Evie wasn’t able to absorb it fast enough. He used some tuck-pointing sutures under the skin to try to prevent another Seroma from forming and closed her back beautifully. This time she had an external drain added for good measure to pull fluid away from the surgical site (again to attempt to prevent a seroma again!). We were sent to TCU, were instructed by the pastics team on how to care for her new incision and would be discharged Saturday. We were a bit nervous to go home with the external drain but we met a new friend, Jenn (nurse practitioner for the plastic surgery department) who taught us all we needed to know!).
Everything was going well with Evie’s incision and the drain until Thursday afternoon. After discussing the drainage we were seeing and showing pictures to Dr. Lin he decided he needed to get her back to the OR again. At about 6pm on Thursday night we got confirmation he would see Evie in the OR first thing Friday morning. This would be the first time Evie had a surgery without Dr. Elbabaa and to say we were incredibly nervous is an understatement. All of our comfort was gone – Anne wasn’t there and neither was Doc. Not that Dr. Lin isn’t incredible, he truly is, we just have so much comfort with Doc and Anne. This surgery would be another longer one as Dr. Lin had to figure out how to get pressure off a certain area of Evie’s back which was refusing to heal. This third surgery actually turned out to be the hardest on everyone. Anne wasn’t there to take Evie back and sending her back was absolutely heart wrenching. The surgery would last almost 4 hours and Evie would come out with a few new incisions and an additional external drain. Dr. Lin was confident he did everything he could for this to work this time. Third time is the charm, yes? We stayed overnight at Glennon and would go home Saturday morning.
The next week brought us back to Glennon for follow up appointments and also brought us back Anne (who needs vacations anyways?!? I kid I kid, she totally deserves one!). We were able to have one of Evie’s drains removed and would continue to follow up with both Neurosurgery and Plastic Surgery to watch her incision. It has been just over 3 weeks since that last surgery and even though we have had some bumps in the road with a spot not healing correctly Evie hasn’t needed another surgery. The second drain has been removed and 4 (I think) stitches. We will continue to follow up with Plastics until her incision is fully healed and she is fully released to get into a rehab program.
What I have failed to mention: Per the instructions of Dr. Lin (the plastic surgeon) Evie has been restricted to laying ONLY on her belly since July 21st. She can’t ride in a car seat, can’t sit up, can’t kneel, can’t be held, can’t eat at the table with the family – she literally must lay on her stomach 24 hours a day. It has been a small feat to entertain her these past weeks. We are incredibly thankful for our many friends and family that come over for visits, to our friends for sending her incredible art supplies to make creations (she loves to bring new artwork to Doc and Anne when we visit) and to everyone that brings us meals. It has been rough to say the least. She has recently been released to begin sitting. At this point she is allowed to sit for 15-30 minutes twice a day. We are hoping to be able to bump that up at our next appointment and for her to be able to ride in her regular car seat! Fingers crossed.
The biggest hurdle to all of this is that Evie has been unable to participate in physical therapy since the beginning of July. With spina bifida she already has low muscle tone and we worked so dang hard to get her walking and were even transitioning to canes before she went downhill before surgery. We were hoping to have her in a rehab program starting at the beginning of August but that plan is on hold. Mommy was supposed to be off work for only 2 weeks since it is unpaid leave and that has been extended to 12 weeks. It is incredibly draining watching your kiddo lay there, unable to regain strength and on top of that be stressed out about money since we are down to a 1 income family for the time being. Evie’s home physical therapist has been able to come over and teach us stretches and things we can do on her belly to help strengthen the muscles we can which has been helpful for Ev.
The plan right now is for Evie to be evaluated for a rehab program on August 29th and hopefully she will be released by the plastic surgery team by then.
To say we are blessed is an understatement. So many people have stepped up to the plate to help us and we are so thankful for that. Whether it be the emotional support, the meals, the gifts, the phone calls after hours and on the weekend from Ev’s neurosurgery team just to check in, the donations to the Go Fund Me page, but most importantly for remembering Evie in your prayers. We are confident this surgery was a huge success, which was our first goal in starting this journey at the beginning of July. Although we have had set backs we are on the path to recovery and regaining strength now and hopefully the diva princess will be up and walking like she used to in no time!
If you feel led to contribute financially to the family personally, a Go Fund Me page has been set up here (https://www.gofundme.com/29wf74s).