Carter's Journey: June 2013

Going Home 6/27/13...

I have had a lot of trouble writing this post. I guess it's because the results were not what we anticipated. We could never have imagined things going as wrong as they have. Carter's X-ray looked awful. The left side of his pelvis is rotated out. It is rotated so badly that everyone that has read the X-Ray thinks that his leg is turned out in it. That's until they realize he is casted, and he can not turn his legs out. His pelvis is extremely damaged. It is so damaged that there is nothing that can be done right now to improve this situation. We are frustrated, hurt and absolutely exhausted! We have so many concerns for Carter's future. Without a stable pelvis, there is a risk his bladder prolapse (come back out). We are unsure how this will affect his walking, or if he will even be able to walk again. We have a lot of questions and only time will be able to answer them.

The plan for right now is to go home tomorrow. The only reason we are being allowed to be discharged is that I am a nurse. Carter will still have his external fixators, casts and a catheter. He is still on a lot of medication that we will start weaning again once we get home. We will return to Johns Hopkins in 4 weeks to have everything removed and re-evaluated. There is a chance that his bladder will prolapse and a chance we will have to have the surgery completely redone. There are still a ton of questions that have been unanswered. For right now Carter's pelvis is "as good as its going to get" according to his Orthopedic Doctor.

We are so hurt, and we have questioned every aspect of Carter's care. As a parent you want what is best for you child. Hearing that his pelvis was as good as it is going to get really hurts. Knowing that a screw moved around and damaged Carter's pelvis for 12 weeks, making it beyond repair right now, is killing us. We had so many high expectations for this surgery. We planned for this surgery to work, Carter to walk again, and for the surgery to only improve Carter's life. None of these things are certain right now, and we are heartbroken. We are happy to be traveling home tomorrow, and we know that God can perform miracles. Please continue to pray for Carter. Pray for complete healing of his pelvis. Pray the damage can and will be fixed. Pray his bladder does not prolapse. Please just pray for overall health. We miss our child so much it hurts. We are ready to see him running and playing again. Although it is harder than ever to see right now, we know God has a perfect plan. As always... To Him be the Glory!!!

Even though Carter still has his external fixators on he was able to be held. He was thrilled to get out of the bed!!! He said Yesss!!!!

We just LOVE this sweet face!

Giggle, Giggle, Giggle...

Giggle, Giggle, Giggle! Carter has literally giggled and laughed nearly the entire time we have been on the 9th floor. He is so happy! He has woke himself up during the night laughing. He has laughed so much that I had to make sure they did not make huge changes to his medications without telling me. They didn't. He is just that happy!!! We are, of course, SO happy to hear his laughter and voice. His little body is so relieved to have the plate and screws removed that he feels great! He has not attempted to move one muscle, besides his arms, while laying in bed. He lays completely flat and still 24 hours a day without complaining. He laughs. God has really heard all of the prayers lifted for Carter. I mean, how many 2 year olds do you know that would lay flat and still with strangers coming in and out of the room for 24 hours a day? He is a dramatically different child, and our hearts are thrilled!!!

Tomorrow Carter will have an x-ray to see if his pelvis is healing. If it is, they will remove his external fixators tomorrow or Thursday, and he will be able to move and be held. We are praying the x-ray will look good. If it doesn't, we will just keep doing what we are doing until his x-ray shows some bone calcification. He will continue to stay flat on his back and still if this occurs. We have faith that the x-ray will look great, and he will have the external fixators removed. He will still have a catheter and his casts. His casts will remain on long after we are discharged from the hospital. We are expecting him to stay casted for the rest of the summer. The casts may draw a lot of attention and stares, but they are completely manageable.

I am positive God heard our cries for Carter. He knew that we wanted to see a glimpse of our sweet child. He knew how miserable Carter had been since March. He saw our frustration, and He was with us through the months of sleepless nights, constant crying and intense pain we watched our son go through. He watched as the tears ran down our cheeks as we felt helpless. He was there the entire time and knew our every need. He is still with us. He is with us as Carter giggles and belly laughs all day and night. He will continue to be with us as the days ahead are full of uncertainty. He will continue to be with us as each day of this journey unfolds. Why? Because He is God and He made that promise to each and everyone of us. As always... To Him be the Glory!!!

He literally woke himself up laughing one morning. Enjoy! :)

Going with the Flow...

The sun rose to a much brighter day today for Carter. During surgery, they discovered that one of the two screws holding Carter's plate in his pelvis had fallen completely out of the bone. The tip of the screw was pushing up against the bone, and the other end was hanging out of his surgical incision. We were very fortunate that it was within a hair of going through his urethra (opening from the bladder to the outside). Carter's Doctor attempted to place a larger screw at a different angle, but his bone was too soft. For some reason Carter's bone was "mushy". It was not strong enough to hold a screw. It should have had plenty of time to heal (12 weeks) and calcify. All of his nutritional labs have been fine and they honestly have no idea why the bone did not heal and hold the screw. They had to open his incisions back up and remove all of the hardware that they placed with the last surgery. They stitched Carter's pelvis bone together and placed external fixators to help hold his pelvis in place. They also placed the same type of cast on his legs that he had taken off on Monday back on. This does mean Carter must lay flat and still on his back. We are not sure for how long though. We are praying it will not be as long as last time. It is already killing us not to pick him up.

He has done so well with all of this. His little body is so exhausted from everything that I do not think he has the strength to fight right now. He has laid completely flat and only moved his arms. His body seems to be relieved the pins and plate have been removed. The last 12 weeks have been miserable for Carter. Do not get me wrong, he was thrilled to be home, but he had a lot of fussiness and was very uncomfortable at times. We put it off, thinking it was him weaning off all of the medications and the fact that he could not move around on his own. Looking back, both Brandon and I , think something might have been wrong with the plate and screws from the beginning. Obviously, it is something we are not sure of, and we could be completely wrong. We are just thankful he has been remarkably better since they came out.

He may need to have a plate placed in the future, but only God knows. The purpose of the plate was to hold his pelvis bone together in the front. Without something to hold it together his pelvis is at risk for opening back up which could cause his incision to come open, and cause his bladder to come back out. Right now a plate is not an option for him. We are relying on God to take care of his pelvis and his entire body. This has never happened to another patient at Johns Hopkins, so they are still trying to figure out what to do. Even though Carter has had multiple complications, we know we are in the best place for Carter. Carter's Doctor has done more of these surgeries than anyone else in the world. He is the one who has done the research, studied literature and wrote the book on exstrophy. He is the world's expert. He has promised they will get Carter fixed, and that his quality of life will be great. It is just going to take time, and they are unsure of how long it will take.

Learning to go with the flow is something I struggle with often. We had already made so many "mental" plans for Carter to enjoy some of the summer. I had already bought sunblock so he would be able to go to his Nana's and swim as soon as we got home from Baltimore. This is one of Carter's favorite things to do. We had talked about taking him to the splash pad, the zoo and doing other things Carter would love to do. We are learning how to let those things go, and just go with the flow. Learning to allow God to make the plans is hard. It is one of the hardest things we deal with. We feel like Carter is missing so much. He is missing the joys of growing up. He is missing out on his childhood. We know God has a special plan for him and in His time earthly enjoyments will come. We are thankful for the 12 days we enjoyed at home, and we can not wait to return. Although it was extremely unexpected, we will sit back and patiently wait. We will wait for God's plan to unfold. We will wait for Carter's Doctors to come up with a plan of care. We hope when the sun rises tomorrow Carter will be getting ready to be transferred out of the PICU to a regular room. As always...To Him be the Glory!

Just to show you how good our God is here are a few pictures throughout the night...

When we first got to go back and see him in the PICU still on the ventilator.

Just got off the ventilator, still needing a little bit of oxygen.

Completely off of oxygen playing with his toys.

Taking a nap today, trying to block out some of the lights with his sunglasses!

But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:31

The Return...

Just a quick update. Carter's surgery lasted about 5 1/2 hours. The screw that was holding Carter's plate and pins in place came out of his bone. This caused everything to press against and fall through his surgical incision. They had to remove all of Carter's pins, his plate and screws. They were unable to place new hardware due to Carter's pelvic bone being too weak. They were also concerned about the risk of infection. They had to open Carter's incision back up to remove everything. They also had to place external fixators again to secure his pelvis. He was recently taken off the ventilator, but still in the PICU. They have never had a screw actually come out of the bone like Carter's did so they are still trying to come up with a plan. As of right now, we do not know how long the external fixators will have to stay on. While they are on, he does have to lay flat and still on his back. We are praying for a smooth, easy and quick recovery. Please keep the prayers coming. As always... To Him be the Glory!!!

Admitted Again...

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!!!

Home and Carter's First Haircut...

We are so happy to be home! Like I said before, I am positive God allowed us to forget how good it felt to be home. If we would have remembered how good it was, we probably would not have made it in Baltimore. Carter has been doing ok since being home. He is extremely happy to be home, but he gets frustrated that he can not get up and play with all of his toys. We spend most of Carter's awake hours riding in the stroller around our yard or riding around in the car. We are still working on weaning all of Carter's pain and sedation medications. He sleeps anywhere from 16-20 hours a day and is still pretty out of it when he is awake. We are so thankful that he is finally able to sleep. His little body needs the rest.

Brandon and I both feel like we have a 6-9 month old baby again. The past few months were extremely hard on Carter. He spent a lot of time trying to maintain life, and it made him regress. He has stopped talking almost completely, and he is back to liking his baby toys. Due to all of the medications he wakes up every 3-4 hours and then goes back to sleep. I honestly feel that once he gets his cast off and is off of all of the medications, he will revert back to where he was. Even though he is acting like a baby he is still the sweetest little boy!

We will be flying back up to Johns Hopkins this Sunday the 16th and hope to return Wednesday the 19th. Carter has an appointment to check his kidney and bladder health. He will also have his cast removed! Yay!!! We can not wait!!! Thank you all so much for all of your support and love for our family. We are enjoying each and every minute of being at home! God is good!!! As always... To Him be the Glory!!!

Carter got his first real haircut this past week. I was a little worried about taking him and how he would tolerate it. He did great though. He sat in my lap and watched Cars the entire time. The medications and fact that he had to lay flat on his back for so long made the hair on the back of his head fall out. His new haircut is SO cute. He looks so handsome!

Before his haircut...

After...

He is your praise and He is your God, who has done these great and awesome things for you which your eyes have seen ... Deuteronomy 10:21.

I do not think I can say it enough. We are SO glad to be home!!!

We are Home!!!

We are home!!! Yay! I am positive God covered us in His grace throughout the entire hospital stay. If we would have remembered how wonderful it feels to be at home, in our own house, we would not have made it through the hospital stay. Carter went to sleep prior to boarding the plane and slept through the entire flight. We were blessed to be able to get a pre-boarding pass for him. We were able to put his special carseat in and have him in a spot with plenty of leg room before anyone else boarded the flight. My Mom and Dad had our house clean, and my brother and his girlfriend decorated with Toy Story decorations. We were also greeted by some of our family and friends at the airport. We are so excited to be home! Thank you all so much for all of your prayers for our family. Although Carter still has a lot of progress to make, he has made HUGE progress over the past few days. We owe all of it to God. We are so grateful to be home and look forward to settling back in. Please continue to pray for Carter and our family as we settle with Carter's new care. Pray Carter continues to progress well. Thank you all so much for all of your prayers and love for our family! As always... To Him be the Glory!!!

We are SO blessed that Carter is such a great baby!

Carter playing with his old (now new) toys!

(6/3/2013) Coming Home...

Tomorrow will be the day we have prayed for since March. Carter had his appointment today with his Urologist. It went extremely well. It went so well that he feels comfortable sending us home!!! Yay! We are flying home tomorrow!!! This has been a long journey and we can not wait to be back south!!! I am a little nervous about going home this soon. He is doing great right now, but I know things can change quickly. The only reason we are able to be out of the hospital right now is that I am a nurse, and I have promised I will call with any problems Carter may have. We will be returning to Johns Hopkins in a few weeks to have Carter's cast cut off, kidneys and bladder checked by ultrasound and to make sure the weaning of his medications is going as planned. Please continue to pray for us as we travel with Carter. I can not wait for the next update to be written at home!!! Mississippi here we come!!! As always... To Him be the Glory!!!

Praise the Lord! Praise God in his sanctuary; praise him in his mighty heavens! Praise him for his mighty deeds; praise him according to his excellent greatness! Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Praise him with sounding cymbals; praise him with loud clashing cymbals! ... Psalm 150:1-6

Bye Bye PICU!!! 6/2/13

We can hold him, take him outside and snuggle with Carter as much as we want to now! Why? Because... Carter was discharged from the PICU to The Children’s Home on Saturday!! They weaned him off all of his IV pain and sedation medications, and they turned them completely off Friday morning. He had to stay in the PICU for 24 hours after the medications were turned off to make sure he could remain stable. He did great. He was, and is still, on A TON of oral pain and sedation medications. The pain team did not really want to discharge him, but thankfully our Urologist and PICU team wanted him to leave the hospital before he caught something else. Being discharged from the PICU is a very rare thing, but thankfully they came together and allowed us to leave the hospital. The fact that I am a nurse really was the determining factor. I am thankful everyday that God led me to the career he did. Once we made sure that the pharmacy could fill, all 13 of them, Carter’s medications we rolled out the door.

First, we took Carter to the hospital courtyard. It was his first time outside since March 27th. He was so excited! He immediately started laughing, clapping and smiling, and he has not stopped since. He has done so well with everything since leaving the hospital. I was given a wean schedule for all of his oral medications. It will take a month or two to completely get him off of all of the medications, but I plan to start weaning them again tomorrow. We are praying that he will tolerate the wean well. We really think being out of the hospital and that being able to distract him will help. He has appointments tomorrow and Tuesday to check his bladder and kidneys. Please pray they go well. Please continue to pray for Carter. He has made HUGE improvements, but still has a long way to go. Please pray for Brandon and I as we learn to manage Carter's new care. I will end this post with a lot of pictures! You can easily see God’s love in Carter’s smile. As always to Him be the Glory!!!