I AM WRITING THIS BECAUSE PEOPLE HAVE BEEN WANTING TO KNOW WHAT HAPPENED. THESE ARE VERY PRIVATE & PERSONAL MOMENTS. WE ASK THAT ANYONE WHO READS THIS, PLEASE BE RESPECTFUL OF OUR DECISIONS, WISHES & FEELINGS. THANK YOU TO ALL WHO HAVE WALKED WITH US DURING CALEB'S AMAZING JOURNEY. I NEEDED TO WRITE THIS SO I CAN ALSO MOVE FORWARD.
Caleb went in on August 18th to have his tonsils and adenoids removed. He was also going to have a bronchoscopy & endoscopy done. We had to cancel this surgery several times over the past year because he wasn't at his best to have it....UTI, platelets, etc. Finally the day came to have the surgery & he was starting to have more difficulty breathing at night. Steven & I knew that going under anesthesia was a big risk, so we talked in great depths with all his dr's & anesthiologists on our concerns & to give him the best possible chance he could have. Just a side note, Caleb did really well during the days and at night only needed blow by oxygen. He had had approx 6 sleep studies to determine the severity of his obstructive apnea. He would have approximately 49 episodes an hour.....extremely severe. Rarely would the monitor ever go off. An in depth sleep study is necessary to determine true apnea.
Caleb went in on August 18th to have his tonsils and adenoids removed. He was also going to have a bronchoscopy & endoscopy done. We had to cancel this surgery several times over the past year because he wasn't at his best to have it....UTI, platelets, etc. Finally the day came to have the surgery & he was starting to have more difficulty breathing at night. Steven & I knew that going under anesthesia was a big risk, so we talked in great depths with all his dr's & anesthiologists on our concerns & to give him the best possible chance he could have. Just a side note, Caleb did really well during the days and at night only needed blow by oxygen. He had had approx 6 sleep studies to determine the severity of his obstructive apnea. He would have approximately 49 episodes an hour.....extremely severe. Rarely would the monitor ever go off. An in depth sleep study is necessary to determine true apnea.
The day of surgery, I snuggled with Caleb in the bed in pre-op while daddy sat by our side. My parents and our other boys sat in the waiting room. Doctors were in and out discussing & preparing for surgery. We all felt it was time to do this surgery. Without it, his body would continue to decline bc apnea at this level puts a strain on the heart, lungs, etc. Shortly after 8:30 he went off to the OR. We waited with family in the waiting room....impatiently. Jacqui, with the Ocala Star Banner, was in the OR for the majority of the surgery, documenting this part of his journey. The surgery took about an hour 1/2 & I got calls from each of the drs saying he did really well & was going to recover in the OR....someone by his side at all times. They always took extra good care of him. He was extubated fine...looking around, resting. His endoscopy looked great & so did the bronchosocopy. The main problem with his airway was the small jaw that sits back (like most of our babies) At approximately 2 1/2 - 3 hours later his heart rate went to 225, his blood pressure and o2 sats stayed fine. His EKG showed he was having a myocardial infarction (heart attack). They had to reintubate him. We were not told of the MI until after they brought him to the PICU. The Dr's wanted to make sure that is in deed what he had before saying anything to us. It just didn't present as what they "normally" see. Two yr olds just don't have heart attacks...usually. Our hearts just sank. They told us the left side of his heart wasn't squeezing & that they decided not to do a heart cath bc he couldn't handle any more sedation/anesth. I am SO glad that they didn't. The treatment would've been the same anyway. We also found out that they didn't remove the tonsils bc they were hardly even there?? That was a surprise & a blessing. It meant an easier time reintubating & less source of pain & infection. We were prepared to be there at least a month. They brought in so many pumps for meds...rows and rows of them. We knew this was going to be a long process, a huge fight for our lil' man. We fought right along with him. Sleeping together on a small chair bed...waiting for him to wake up. He was having s t depressions on his ekg which meant that there was damage to the heart. They monitored those closely & we waited for each result to show they were going down. PTL, they were improving, his blood gases were great, they were weaning him off meds, his platelets were fabulous...we all celebrated cautiously, we didn't even share this with anyone bc we knew we were still in a critical situation. We talked about getting a trache to help him get off of some of the meds bc he was blowing through them like tic tacs. And he needed to not work so hard so his heart could heal. Steven & I felt comfortable with that. We were now waiting for him to get to a point where he could undergo this surgery. One evening when Dale, the night nurse came in & asked "where's his s t depressions?" Steven & I were confused. Dale hurriedly changed the probes & went back to look at the paper tapes of his heart rhythms for the last 24 hours. Sometime around noon that day, there was about a 3 second gap where the s t depressions just disappeared. Dale said he had never seen that happen before and Steven said " write GOD in that time period". We were over joyed...cautiously. 
There was a brief period that Caleb opened his eyes and daddy got to read him a book...Caleb watched & listened...this was the last time we got to see our baby boy interact with us. He started having trouble keeping his o2 sats up and they had to keep bagging him. His sats would come up briefly...the time inbetween started to become shorter. That sunday he had a seizure. I suggested that maybe he was having seizures & that's why he couldn't keep his sats up. The medical staff was just as baffled...they were willing to look at anything and was going to have him hooked to a 24 eeg the next day. Monday morning the 29th of August, he just couldn't keep his sats up. Christina his day nurse tried so hard to help him through his discomfort. She had to call a code bc his o2 sats went down to the 20's. They bagged him yet once again & gave him some meds to get him back up. I knew it was time to call the family. I couldn't breathe. Our Pastor, friends, family, Pediatrician, all came to be with us. The cardiologists, other dr's told us he was having pulmonary hypertensive crisis' and they were going to start nitrous oxide to help open things up. He shortly after went into another crisis where his o2 sats were at 0. I about fell to the floor & the air was knocked out of me. We asked them to silence the alarms and give us our time. 
I crawled into the crib with him we were surrounded by everyone & his pediatrician started us in singing You are my sunshine....I just couldn't let him go. I wanted my baby back. But I knew he was tired. His o2 sats couldn't stay up. They were dangerously low..the machines were keeping him alive. He was cold so I snuggled into him even more. I talked to him and told him how much we loved him & how proud I was of him. That it was ok to go Home. For him to please watch over us, to keep mommy going..to keep our fight up. We were so tired. I asked God to let us have one more nap together. All of a sudden his o2 sats went to 91, the highest they had been in days. His eyes opened briefly and they were as beautiful as I knew them to be..not the red, dazed look he had had. He rubbed his nose, his usual quirks...and we napped briefly. After a while he closed his eyes, his sats went back down and stayed at 20 for a long time. My baby was gone. It was time to say goodbye bc Jesus was already holding him tightly in His arms. 
Dale, our nurse was so wonderful. He handled everything. He had them come in to make molds of our son's hands, the foot was done prior to him passing. He put it in a beautiful box. He helped Steven bathe Caleb one last time and even held him & cried. Caleb touched his heart, even in the short amount of time he knew him. Caleb was so very loved.
I see God's hands guiding us through this whole experience. People have often asked me if maybe we shouldn't have done the surgery. He would've struggled without it...we believe the episodes he was having the last couple of months prior to surgery were ph crisis'. I think God once again placed us where we needed to be, together with our son to be with him as he was called Home. If this had happened at home by myself or with the kids, it would've been devastating. We don't have all the answers...but I guess that is what walking by Faith means. We have to make the best decisions we can with the information we have. We knew Caleb's ph wasn't good and something had to be done. Heart surgery wasn't an option bc of the obstructive apnea and ph. If we had done nothing I think we would've been filled with regret.."what if only".
Pulmonary hypertension is something that many of our children have but isn't discussed much in info about t18/t13. I want to bring more awareness to the issues of obstructive airway issues (determined by sleep studies) and pulmonary hypertension. I think that Caleb had a good life bc we had such proactive and compassionate drs. Sometimes the best that we can give is comfort care bc there is nothing more that we can do. That doesn't mean we don't fight for our children. It just means that we understand that there are some things that are out of our hands & we have to feel blessed by what we are given. It is hard. I miss him more than you could possibly imagine. A part of me is forever gone...but I am so grateful that God held us through this. I pray for each and everyone of my friends that are walking this same journey. I am here for you if you have any questions. I will answer anything you would like. There are several things I have left out bc of the details...but will talk in private. I love you my son...you have changed my life....I will see you again one day.
