I am currently sitting in a hospital room at Johns Hopkins rocking my sweet Carter. He is hurting, confused and so sad. I am fighting back tears that have built up through the day. My heart is hurting, my head is spinning and I am ready to wake up from this nightmare. We know God has a perfect plan, but it is not always easy to see. Right now my head is spinning so much it is hard to see His plan. We are all completely exhausted and ready to find out that this really isn't happening.
We were very unprepared for the events that have recently unfolded. Carter has been doing so well the past few days that we just imagined we would have a sweet and short visit at Johns Hopkins. Carter had his first appointment yesterday with Orthopedics. His casts were removed and everything looked good. After his casts were removed, we went to visit another very sweet Cloacal Exstrophy family in the hospital (first highlight of our trip). During our visit with them Carter was extremely fussy and vomited several times. I brushed it off as him being sore from his cast removal. He had not been able to freely move his legs since March. The fussiness kept on. Once we arrived at our hotel I changed Carter's diaper and noticed bright red blood. I could also see metal protruding through his surgical incision. His incision was also trying to come open a little further up from where the metal was showing. I gathered my thoughts and called Carter's urologist. After sending him pictures, he told us to just come see him the next morning(today), or come to the ER if the bleeding increased. He didn't seem too concerned. I again brushed it off thinking maybe I was over reacting. We met one of Carter's PICU nurses for dinner (second highlight of our trip). Carter continued to be fussy and slept on and off. He was up several times throughout the night crying out in pain. I gave him extra pain medication all night. This morning we woke up, and we headed to our appointment. Our Urologist still did not seem too concerned. That was until he looked at what I was concerned about. He immediately called Carter's orthopedic Doctor and worked on getting Carter admitted to the hospital.
The plate they placed 12 weeks ago to hold Carter's pelvis together has eroded. This has caused one of the four screws holding it in place to pull out of the bone. The screw is what I can visibly see. They think it eroded weeks ago. When the cast were removed, Carter was able to open his legs and the plate shifted. This caused the screw to pull out of the bone. So what does this mean? We are not completely sure right now. Carter is going to surgery first thing in the morning. It just depends on what they find. Sometimes they can just remove the screw and the bones are strong enough to stay in place. Sometimes they have to place another screw which will require Carter to have to have external fixators again. Meaning he will have to lay flat on his back again for atleast 6 weeks. This means we will not be able to hold him again for another 6 weeks. We are praying this does not happen. We are praying it is as simple as removing a screw and stitching his incision back together.
We were so unprepared for all of this. Today has been full of chaos and confusion. The hospital is full so our Urologist was unable to directly admit Carter. We ended up having to go through the Emergency Department. Carter has been stuck multiple times for an I.V. All of which were unsuccesful. We are praying they will be able to get an I.V. or PICC line during surgery tomorrow. Our hearts are breaking for Carter. He is in pain and so confused. He has been so good through everything. He only winced after being stuck over and over by different people trying to get an I.V. He does not want to be back in the hospital, and neither do we. Carter's little body is completely exhausted. I am not writing all of this for you to feel sorry for us or to pity us. I am writing it for you to pray for us. Pray for strength for Brandon and myself, but especially for Carter. Pray for a quick and easy surgery tomorrow. Pray he does not have to have external fixators again. Pray he does not go through those PICU doors.
Today was one of those days you catch yourself looking up saying Hey! Hey God! Can you hear me? God please. Please we have had enough. I think you may have the wrong person God. I'm not this strong. I can't do this. Then you hear this tiny whisper saying "Yes, you are. I chose you for a reason. Hang in there, relax! You know I have got this!"
We know God has a plan. We know His plan is perfect. It is just really rocky right now. We are ready to have our child back. We are ready for him to enjoy life out of the hospital. He has been through so much that I am not sure how much more his little body can take. Please continue to pray for him. Pray for a successful surgery, easy I.V. Access and for Brandon and I to hold on as God's plan unfolds. As always... To Him be the Glory!!!