Tommy's recovery after his first heart surgery was far from easy. We didn't know what to expect or how long he would be in the hospital. He was just so little and fragile. Days turned into weeks. Around 3 weeks after the surgery, things got bad. First, one lung collapsed, then the other filled with fluid. He also developed an infection in his blood stream. This was all in one day. I took the first pictures of him since his before his surgery because I was afraid I would never get to take another one. He was really sick.
They turned him, sat him up, and put him in several different positions so that his lungs would drain. He got chest percussion therapy (CPT) several times a day. I learned how to do it as well. He was still on a ventilator. Finally, his lungs cleared up enough that we tried to take out the breathing tube. He lasted a few hours and went into respiratory distress and had to be intubated again. It was upsetting, but not unexpected. His swallow was making saliva pool and gag him, causing him to not be able to breathe on his own.
A few more days went by and Tommy got a little stronger, so extubation was tried again. He made it a few more hours and I was actually able to get a few pictures. Unfortunately, that time without the vent was short lived as well. The third time we all knew that the only way to get him breathing alone was a tracheostomy, but there were other things that needed to be gotten out of the way first.
Tommy was given a Nissen Fundoplication. His feeding tube site had to be moved up because his stomach had shifted with the Nissen. Since he was so little, they could not do it laparoscopically. He already had his fresh scar all the way down his chest, now it extended all the way down his stomach and around his belly button, with smaller scars on either side from where his Gtube used to be, plus chest tubes from the heart surgery. My poor baby.
Tommy was just over 2 months old at this time. Thanksgiving marked 2 months, and it was now early December. Everyone was pushing for a trach, until someone let slip to me that Tommy should have an MRI to rule out a reason he wasn't swallowing or breathing on his own. This was my first time venturing into territory where the doctors figured out I was not just another mom being told what to do. I came home and began researching what I knew about Tommy and why an MRI would be necessary. I found the term Arnold Chiari Malformation type 2. This is also the time the doctors learned not to send a resident in my direction.
A couple days before Tommy was to have his trach done, I began to inquire about the MRI. Everyone agreed it should be done, so I was upset when they scheduled the trach surgery, but not the MRI. Tommy's nurse called a resident who fumbled over what was happening and I made him call the attending neurologist at home. I asked him why Tommy wasn't having an MRI to rule out ACM before they did the trach in case he needed a decompression. Silence. Then finally, "Just who exactly told you we were looking for ACM?" I told him, "Nobody, I figured it out myself, but that is why he's having the MRI, correct?" More stunned silence, followed by "Yes." He said he would call ENT to straighted it out. I could hear the gears turning in his head over the phone, wondering how I figured it all out, and on top of that, correct.
An hour or so later, I got a very agitated call from Tommy's surgeon. He explained to me that in order to have an MRI that Tommy could not have any lines in his heart. He also explained those lines were causing Tommy to get another serious infection and they had to come out immediately, but in order to take them out, Tommy had to be able to breathe on his own. A trach had to happen no matter what, so I consented. I think he (and every other one of Tommy's doctors) realized that I knew my stuff and I wasn't letting them run the show. I was a very informed mom who could stand toe to toe with them. They knew from that point to stop sugar coating it and give it to me straight. Tommy got his trach and his MRI a few days later. It was negative for ACM.
Once Tommy got his trach, the fun began. Really, no sarcasm intended. I had not held my sweet baby since the day before his heart surgery two months before. The day he got his trach, I rushed to the hospital and the nurse placed him in my arms. I held him for about 2 hours. I held him until my arms were numb, then just kept holding him. I was in Heaven. His lines came out the next day and the infections stopped. Rob held him for the very first time.
We started rooming in with him to learn all of his new care. We had to learn not only to feed him with his pump, but to dose out and correctly give all of his medications, how to care for his trach, learn to clean it, change it out, suction it, change the ties, what to look for, oxygen requirements, humidity settings, etc, etc, etc. Oh, and how to change dressings, assess his color and demeanor so we knew how his oxygen saturations were doing without the aid of machines. Then there was the regular old baby stuff on top of it. Except my baby was silent. His body shook and he turned purple as his face contorted but he didn't make a sound. He would need me to keep a visual eye on him 24 hours a day to be sure not only was his oxygen okay, but that he was breathing and his airway was clear. He had no way to communicate with me. A baby has certain cries that their mother learns. I didn't have that advantage.
A few days before he was to come home, we had him circumcised. To add to our already complicated plethora of medical chaos, the procedure went wrong. I should say, the procedure itself went fine, it was afterwards that went wrong. We had been rooming in with him in the PCICU and we finally had gotten a private room on the step down floor. He had the procedure that afternoon and that evening we moved. As his nurse picked him up to move him from crib to crib, we found the bedding soaked in blood. His circumcision was bleeding out. We called the surgical on call to come check it. He was "fine", but he had developed a hematoma (blood clot) and it was bleeding because he was on blood thinners for his heart. She had to apply pressure to stop the bleeding. After about 45 minutes in finally stopped. We had to keep his little boy parts wrapped in Vaseline coated gauze to keep it from getting irritated and bleeding again. It took a week to heal and Tommy developed a unique talent for peeing out of the right side of his diaper. I would find him soaked only to change him and find a dry diaper. Its the little things that are funny now.
Finally, on December 13, 2008, after 79 days in the hospital, our little hero made it home for the first time. It was the most amazing, scary, happy, emotional time. I immediatly put his car seat under the Christmas tree and took his picture. He was my gift. The second day home, his apnea monitor went off. The alarm scared him awake and it corrected itself. I don't think I recovered so easily. Tommy slept in a bassinet next to our bed hooked up to humidity for his trach and his feeding pump. I learned to "hear" him and learn what he wanted and was able to wake up at night. He was hooked to an apnea monitor as well. During the day, we moved him to a bassinet in the living room. His feeding pump was portable and he didn't need the humidifier, so we had the freedom to move all through the house. Not that we did. It was all very overwhelming.
We soon fell into a routine, but something was off. Tommy would not let me hold him. He turned blue and arched his back when I held him. I knew something wasn't right. He had started it before we left the hospital. I showed everyone. I was told everything from "he's not used to the trach" to "he's just wiggly". After going through respiratory, cardiology, and ENT I took him to the pediatrician and told him what was happening. More hemming and hawing, so I picked Tommy up and put him in his arms. Tommy arched and turned blue. The pediatrician turned white as a ghost and handed him back. An hour later, I had a referral in my hand for occupational therapy. Tommy was diagnosed with Sensory Integration Disorder. In a nutshell, he had not had enough human touch in the first few weeks of life because he was in a hospital bed on a ventilator and we couldn't hold him. He learned to self soothe. He also learned that if he was touched, it usually hurt. We had to retrain his senses that touch was good.
So begins our journey at home with occupational therapy, physical therapy and early intervention.