Mr. Sandman, Bring Me A Dream

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***


Having Caden home from the hospital is absolutely amazing! However, when the surgeons warned us that Caden might revert to newborn mannerisms for a few weeks, they weren't kidding. Last night Caden woke up over 6 times, leaving very tired parents and a grumpy little man. Caden is also refusing to eat anything that has chunks in it. Weird considering his favorite meal was a grilled cheese sandwich. So now we are restocking on Gerber 3 foods, but whatever I can get him to eat! Taking care of him has been really stressful. I am terrified that he is going to hit his head on something, he is still slightly wobbly with his walking, but is getting better. The surgeons told us that it would take at least 2 weeks for him to get to 80%, considering that he isn't supposed to be walking this quickly again- I will take wobbly any day. He did bump his head and when he turned around he had blood pouring all down his face and all over his clothes. Terrifying. Thank goodness I had gauze and some silk tape and was able to stop the bleeding. I pray this recovery phase goes by quickly and Caden will continue to become stronger. I am ready for this journey to be over. I am so proud of Caden, he is my hero. The pain and suffering that he is going through, I can't imagine. He brings a smile to our faces and his giggles are infectious. I can't wait to see what God has in store for him!

Home Sweet Home

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***

There are no words that can describe the comfort of sleeping in your own home, in your own bed. Knowing that your family is home, safe and sound, under the same roof. We were discharged yesterday evening and poor Caden could barely keep his eyes open. No one sleeps well in a hospital. I can't believe we are home before Christmas Eve. Caden is my hero. 

Today is Christmas Eve! Caden slept ALL NIGHT long! They warned us that post surgery that Caden might revert to the sleeping habits of a newborn. Not something we were looking forward to for sure! Caden was ready and raring to go this morning! He refused his morning pain medication and just wanted breakfast. And man, did he eat! I was curious where all the food went. I know that right after his surgery he didn't really want to eat much because he was intubated during his surgery and his throat was really sore. He is making up for the lack of eating in the hospital, that is for sure! Walking around is a like a new experience for Caden. He is having to relearn how to walk again because his new head shape throws off his balance. I never realized how narrow Caden's head was until now. His new head shape is very round and quite a bit larger than before. The surgeons said that they tried to over-correct a little bit so that hopefully in the future we won't have to have additional surgeries. Whatever it takes to keep my Caden safe and healthy.

My parents and Cayce's mother came over and we opened a few gifts. Caden was more interested in the wrapping paper and bows than anything. :) This year Christmas has a different meaning for us, this year Caden is my Christmas miracle. Thank you everyone for caring for us, for praying for us as we continue this journey. We know that the hardest part is over, and wow- I wish to never have to go through this again. We still have to heal, and I pray that his recovery goes smoothly. So far he screams anytime someone goes near his head, which I don't blame him. Over time I know that the pain will lessen and he will get better. I'm thankful that we did this while he was young because I know he won't remember this. I pray he won't remember this. May you all enjoy your Christmas holidays and spend time with your family. Be thankful for what you have and remember how blessed we all really are.

We are going HOME!!!

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***

Terry RN

Dec 23 (Friday): We are in the step down unit 10 Tower (neurology). We were transferred here yesterday. Our nurses here have been beyond amazing! One of the night nurses kept playing with Caden. It was 3am and Caden was wide awake and Terry, the nurse, asked Caden, "Alright big man, it's 3 am, are you tired yet?" Caden promptly went, "Nah uh." It was so funny. Anything Terry would ask him, Caden would say "Nah uh." I knew that my baby was back! I love my Caden so much! We had to tape the telemetry leads to Caden's chest because he keeps pulling them off and playing with them. Dr. Aoli removed the second JP drain, one less line connected to Caden, which is good. I forgot to mention that while we were in the PICU, Caden was playing with one of his JP drains and figured out how to open it. He poured the contents all over him and I, fun. Did I mention that Caden has had 21 IVs? TWENTY ONE. Aunt Sam and I have been keeping count. Caden keeps pulling them out or they keep blowing. I don't think I can handle seeing my son being poked one more time. The nurses are saying they literally have no where else to place an IV because they have used all available sites. My poor baby. Anyway, Caden hasn't had a fever in several hours so Dr. Bollo was saying that we would be able to go home- TODAY! What an answer to prayer! We have everything packed and are ready to go!

On The Road To Recovery!

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***


The day of surgery has come and gone and we are officially on the road to recovery! Thank you Jesus for keeping your hands on my baby! I know I haven't updated in a few days, the PICU didn't really allow for much room so I have had to wait until now. Let's go back a few days and start from the beginning:

Dec 20th (Tuesday): Today is the day of surgery! After many days of counting down and anxiously waiting, the day has come! Poor little Caden wasn't able to eat after midnight, but was able to have some apple juice at 0730 when he woke up. We packed up the car, and headed to TCH since we had to be there at 0900. Caden's surgery was scheduled for 1100...which as you can probably guess didn't happen at that time. Medicine is notorious for being behind. However, I would rather the surgeons be late because they were taking their time to do something correctly for another child than just doing surgeries for the almighty dollar. Caden did exceptionally well while we were waiting for his surgery, especially considering that he had nothing in his tummy and he was a hungry little bug :) We had ministers from our church: Bro. Charles Johnson and Bro. Walea, along with my family say prayers over Caden, the surgeons, nurses and all who would have contact or care for Caden, that they would have the wisdom and guidance of God while they took care of him. My parents, Cayce's mother, and Aunt Sam came and waited the day out with us- which was more than appreciated since Cayce and I were stretched tighter than a rubber band. Nika, Cayce's sister really wanted to come, but she was sick and didn't want to get anyone else sick, but we felt her there by heart. My friend from UT also came by to say hi, Vianca, it was wonderful to see her and get support from her as well. Surgery finally began at 2pm for him. The hours waiting for the surgery to begin were torture because I could see my Caden flirting with everyone and playing around just knowing that so soon he would be in so much pain and that his life would be forever changed. They called Cayce and I back to the holding area where we changed Caden into a little hospital outfit (which kept falling off of him because it was massively huge on him). We played with him for about 45 min while they were getting the OR ready for him and we finished signing all the consent forms. Those themselves can give you a heart attack hearing all the things that might possibly go wrong- even if it is a 0.00001% chance. *sigh* 

Caden decided that he wanted to ride in one of those plastic cars that red with a yellow top, so we pushed him around the pod for 45 minutes until they took him to the OR. He was adorable, he had his little feet hanging out of the windows and was helping us "steer" the car, usually in the wrong direction. I think I know what someone might get for Christmas if I can find a good deal on Craigs list!

Daddy and Caden before surgery

Then my heart skipped a beat as they called out Caden's name. I prayed that it was another Caden, but who was I kidding. I knew his time had come. I held on to him so tightly and I couldn't help it, but tears were escaping. I wanted to be strong for him because I wanted him to know that all was well, that he was in good hands. I kissed him so many times and kept telling him that "Mommy and Daddy love you, and we are right here, we aren't going anywhere!" The next thing I did was the hardest thing that I have ever had to do, and that was to hand over my perfectly healthy and beautiful son to a stranger and tell him that he better take the best care of my baby or else. I wasn't sure what the 'or else' would end up being, but Lord knows I would make sure it wouldn't be pretty. Watching him take my son through those double doors broke my heart, at that moment I literally couldn't breath. I watched through the windows until they turned the corner and I could no longer see my happy thought. Worst moment of my life ever. Was I making the right decisions? Are we really, beyond a shadow of a doubt completely positive that he needed this surgery? I knew I had seen his CT scans and it showed that there was no way that Caden would have a normal life without this, that yes he needed it, but...this is my baby, my happy thought, my greatest achievement, my true love that makes me laugh and smile. if anything happened to him devastation wouldn't even being to cover how I would feel. But I knew that we literally had hundreds of people praying for Caden and I knew that it was going to be ok. That I needed to let go and let God.

Surgery lasted for about 4 hours or so. Longest 4 hrs I think I have ever twiddled my thumbs through, except for those random nursing school lectures. :) But we made it! We finally got to go back to PACU (post anesthesia care unit) about 7pm to see him. 

The moment my heart stood still

My heart felt like it literally stopped for a few seconds. I cried and leaned over and told him how sorry I was for all of this to have happened to him. His face was swollen, he still had blood on parts of his face and his ears. His mouth was so dry and his lips were cracked and bleeding. His head was bandaged and he had two JP (Jackson Pratt) drains, one behind each ear. He was still really groggy from the anesthesia so he didn't open his eyes. He would wiggle his toes and fingers when he heard us talking to him. I wanted to hold him so bad, but because he was recovering and had drains and telemetry monitors on him I figured that the PACU nurse would feel better if we let Caden just stayed laying down. We stayed in the PACU unit for about 1h 45 min until we were transferred to the PICU (pediatric intensive care unit) We get an amazing nurse named Janus who took excellent care of Caden. Kept his pain management under control (which is super amazing bc nurses sometimes forget the little ones unless they are out and out crying). Great job Janus, don't worry- we are keeping a list of the RNs that are doing amazing jobs.

My precious baby, My Caden

Dec 21 (Wednesday): This morning we had a surprise! Rhonda Wolfe, a friend from church and a nurse manager for the Pulmonary and Endocrine units at TCH, brought me some REAL coffee and my husband and I some donuts. It was super kind of her! Needless to say we are still in the PICU. Caden has been having lot of pain during the night and is taking morphine and loratab. Hey, if someone cut on my skull, I think I would be hurting too! He was also febrile running temps of 101.8 throughout the day and evening. This is extremely common after major surgery. The doctors ordered clindamycin to help with that. Both daddy and I are allergic to Penicillin. He seems to be doing well with that. We were hoping today to go to a step down unit (one step closer to home) but because he kept running such high fevers and was tachycardic (his heart was beating really fast which is common if you have a fever or are in pain) the doctors decided to keep him an extra night in the PICU. We were so disappointed because the PICU is so noisy with people coming in and out and there is not privacy, we had to share a room and just is plain uncomfortable because there isn't a lot of room. Grammy Lisa and Aunt Sam came and stayed the day with us again...They are true blessings helping us get through this nightmare.

Caden's incision

Caden's left eye is swollen

Dec 22: Still in PICU, but we are getting moved to a step down unit! Thank you Jesus! Cheri came to see Caden and brought him a few gifts too, some are books and I can't wait to read them to him! Aunt Sam came to see us again and stayed all day with us again bringing us goodies to eat and Christmas decorations to hang up in Caden's new step down room. We FINALLY made it to the West Tower 10th floor. The room is huge! The first thing I did was take a shower- I will never take those for granted again! It felt like I was able to wash all the grime and stress and pain off from the past several months. I literally felt like a new person when I stepped out. They took Caden's dressing off of his head, needless to say he wasn't too fond of that AT ALL. His incision looks beautiful, as far as incisions can go. The swelling is very minimal and I never really realized wow elongated and narrow his head was until now. His head is so much more round and he looks just flat out beautiful and handsome. Dr. Buchanan (plastic surgeon) removed one of the JP drains and will removed the other one tomorrow. Dr. Bollo (neurosurgeon) says that Caden is right on track and looks fabulous and that we are still looking for a Christmas Eve/Day discharge. I am so excited- Caden will be the BEST Christmas gift I have ever received! This evening he has started babbling and playing peekaboo, which is the old Caden. He is off IV fluids because he can tolerate liquids, so all we are waiting on now is the other JP drain to be taken out, his fever to go- and stay- away, and for him to not need morphine medication (because it is IV). We need him just to need Tylenol 3 or regular Tylenol. I think we are well on our way. His left eye had swollen completely shut, but thankfully now he can kinda peek at us through it. His right eye seems to be completely normal-Thank you Jesus! A wonderful coworker , Kristyna Wright, brought my hubby and I a bag full of goodies and healthy snacks to get through this craziness- thank you sweet friend much appreciation!!

Dr. Bollo, Neurosurgeon

Dr. Buchanon, Plastic Surgeon

 

Mommy loving on Caden

Aunt Sam keeping vigil

Tomorrow is Almost Here

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***

Last week we met with Dr. Buchanan who is the plastic surgeon that will be taking care of Caden. He is absolutely amazing! He let me, a terrified mommy, ask a million questions and didn't rush me. That speaks volumes. He even played with Caden while we were discussing his surgery, that also showed me that he cares. I know Caden will be in good hands. Dr. Buchanan mentioned that Caden might need an additional surgery later in life to fix the 'bossing' (that is the slight bulges in his forehead). Daddy and I both agree that Caden looks perfectly fine the way he is and we think that we might not opt to do that surgery since it isn't necessary like the current surgery. Dr. Buchanan also mentioned that because he will just be repairing the back of Caden's head to allow for expansion, that the surgery will be significantly shorter than previously mentioned. The surgery is now supposed to only be 2-3 hrs long (instead of the dreaded 8 hrs) AND because the focus of the surgery is on the back of Caden's head, Dr. Buchanan thinks that Caden's eyes will swell, but hopefully not swell completely shut! That is a huge relief for me as that is something that I am seriously dreading! Thank you Jesus for small blessings!

I recently received a care package from CranioCareBears.org which is a nonprofit organization who's goal is to spread awareness of craniosynostosis and to bring love and comfort to those families that are facing surgery. Inside the box there was a prayer chain that we can place on Caden's crib in the hospital and also cards of encouragement from other parents that have been through this tough time. This box was such a blessing, knowing that we are not alone and that there are many people we don't even know that are praying for us.

I think the most difficult part of this whole ordeal is that I see Caden, an absolutely perfect, healthy and fun loving boy- and I have to hand him over to someone to do surgery on him. It isn't like there was an accident where I can actually visually see the problem that needs to be fixed, Caden's problem is hidden from sight and technically we are doing the surgery based on odds. Odds that in the future that he might become handicapped, might have seizures, become visually or hearing impaired. I'm not one to gamble and since I'm not the one rolling the dice of life, I feel it is my duty as a mother to make sure that Caden stays safe and healthy. I am doing this surgery to keep Caden the way he is, I don't want Caden to change. I want to continue to watch him make his funny faces and listen to his giggles.

So off we go tomorrow, the day my heart will stand still until I can lay eyes on my son and see that he made it through and is doing well. I have several family members coming to the hospital with us to wait out the surgery so that we won't be alone. I know that The Great Physician and His angels will be in the OR with Caden. I know that there are hundreds of people praying for Caden and that he will come out like a champ. I just wish someone so small and innocent, didn't have to go through something so awful. We just have to make up a good story for him to tell others when he grows up on how he got his scar...wrestling an alligator, surfing with sharks...who knows! :) So tonight, kiss your little ones and hug them extra tight for us and please remember us in your prayers. Caden's surgery is at 11:30am and we have to be there at 09:30am. I will do my best to update the carepage tomorrow to let everyone know how he did, and will post pics of my main man. Thank you for following us on this journey and for the prayers and calls and well wishes. We are almost there, I can see the other side!

I Wish You Enough

***This is a repost from Caden's Caring Pages which were written while we were waiting for, and after Caden's Cranial Vault Reconstructive surgery***

As the day of Caden's surgery creeps closer I have been losing more sleep and more weight. Me being a nurse should know better. If mom isn't healthy and taking care of herself, then what happens to her family? Thankfully, I am beyond blessed to have an amazing husband that has graciously picked up my slack.

As many of you know, I work at MD Anderson Cancer Center in Houston. I am on the Stem Cell Transplant unit and everyday I work I do my daily duties and go home. That's the big thing: I get to go home. I get to love on my son and husband. I get to breathe the semi fresh air of Houston. I get to sit at my dinner table and eat food that God has blessed us with. I get to enjoy time with my friends. My patients are in the hospital for a MINIMUM of 30 days, that is barring no complications. Which, as you can guess is not often. I have been dreading this upcoming stay at Texas Children's Hospital. Nurses make the WORST patients and children of nurses, God help them. Caden will be in the hospital for 5 days. That is it. Then we can walk out and watch him grow into the amazing young man that God intends him to be. Besides the immediate recovery phase, we don't have to watch him hurt. Life must be put into perspective. I am truly blessed.

I recently spoke with my SIL, Shelena. She reminded me that when life gets hard, you always have hope. Hope, such a small word, but a word that has such power and strength. A word that is getting me through this nightmare that I am facing. When we have nothing, we always still have hope.
During this Christmas season, I hope you hold your family a little bit closer. I hope you enjoy little children's eyes as they light up with happiness and wonder when they look under the Christmas tree. I hope you sing that Christmas song in the shower, not paying any mind to who may be listening. I wish you would spend a little bit of time thinking of how blessed you are. I wish that you will slow down and not mind the hustle and bustle of commercialism, but remember what the season is about. I wish you health and happiness and blessings. I wish you enough.