It was a long week and I’m happy that it’s over with. Drew’s heart was repaired and came through the surgery and recovery strong. Of all of Drew’s previous surgeries, including his first open heart surgery, this one was the toughest on Drew as we’ll as on me to watch Drew experience.
Watching Drew being carried off by the surgical staff was just as traumatic for us as I had anticipated. It started early with Drew whimpering his sadness that we couldn’t escort him back to the OR. And, when the nurse carried him off on his shoulder, I’m not sure how I managed to hold in my emotions. I didn’t want Drew to see that I was upset figuring it would make him worse. Once he was out of sight, I sped toward the exit to the waiting room. I felt really bad afterwards for escaping so hastily ignoring the arms and comfort of Nathan. But, I had a burning urge to get out of the room and hold Holden, my surrogate for Drew for the moment.
The wait during the operation was excruciating. It seemed as if we waited an eternity for our first update. But, the updates did come and we were relieved after over six hours to hear that it was finally done. But, we had to wait another three hours to see Drew, which was even more excruciating as we were told it should only take two hours.
We were finally allowed to visit a still sedated and unconscious Drew in the pediatric intensive care unit. He had a breathing tube down his throat a dozen various tubes, wires and lines. There are no words to describe seeing your young child in such a vulnerable state. Seeing your once spunky and active son confined to a bed with all these pieces of medical equipment keeping him alive is emotional.
His new, red and gnarly chest incision was hard to miss. He had two chest tubes, about the diameter of a pinky finger, inserted through his abdomen below his rib cage to allow for drainage of fluids that collected around his heart and lungs, a normal symptom after surgery. He also had pacer wires inserted nearby that were present in case his heart rhythm got interrupted or if it stopped completely, which is a scary thought needless-to-say.
His breathing tube was removed on the first night and it wasn’t long until Drew was finally conscious. He was still on heavy pain medicine so he wasn’t as alert as normal, but he would talk to us. It was very difficult seeing him so weakened. After a while, as it always does, being in the hospital was starting to get to him. He wasn’t engaged, he was uncomfortable with all of the tape, wires, IV, tubes, etc. covering seemingly every square inch of his body, nurses constantly disturbing him. We hate seeing him so miserable. And, after seeing how hard this was on Drew, it occurred to us that we probably didn’t do the best job in preparing him for it. Sure, he knew the surgery was coming up since we had been discussing it with him, but we failed to consider that his recovery period post leg surgeries was fairly easy with minimal stress. I think Drew was blind-sided by all of the pain and discomfort. He is too young to remember his first heart surgery and even though he had pain after the placements of each of his fixators, it was nothing compared to waking up so weakened and in pain after this heart surgery. Then again, I’m unsure if highlighting the pain and discomfort and painting a picture of the difficult recovery period would have done anything other than scare him and elevate his anxiety.
On day two in the PICU, Drew developed a slightly abnormal heart rhythm which kept him in the PICU another night. It didn’t affect his blood pressure or appear to impact any of his stats so they just monitored him a little longer to insure it wouldn’t pose a problem. They removed one of the chest tubes on day three which was gut wrenching. The nurse had to tug on it at least three times to get the total length of the tube out. I’m not sure how many times it took since after about 2-3 tugs and Drew writhing and screaming in pain, I had to cover my eyes and I vowed not to be in the room when it was time to remove the second.
During our stay in the PICU, I snuck a peek at the computer in the room which displayed coded information about the patients present on the floor. I wasn’t able to identify names, sex or reason for stay, but I managed to decipher the room numbers, age and length of stay for all of the patients. I was shocked to see that there was a 10-month old who had been in the hospital for its entire life of 300+ days. I was utterly flabbergasted. I had headaches just from being in a confined space with such annoying noises, lack of entertainment, and general stress of a loved one in such a critical state for three days and couldn’t imagine having to go through this for 10 months.
Drew got moved into a regular recovery room on Sunday afternoon. The room was bigger and it was a nice change of scenery. Drew was in a much better and alert state and it felt like we were close to going home. On Monday, we began to hear whispers of being discharged. We were instructed to attend a CPR/discharge class where we all got educated and got to practice performing CPR in preparation for taking our delicate babies home. It’s a little disheartening to know that the likelihood of Drew going into heart failure or some other emergency is so great that we must be prepared to perform CPR. As I watched Nathan, who is already certified in CPR through his employment, perform CPR on a dummy, I have to admit it was very emotional for me watching. It was difficult to watch without imagining Drew underneath. The reality of this surgery is suddenly so real.
But, we were finally discharged Tuesday afternoon and we made our way home. Drew isn’t allowed visitors for a few weeks while he is so susceptible to infection. And, his chest and rib cage are sensitive and somewhat fragile so he has to be picked up and carried in such a way that no stress is put on his chest for four to six weeks. He’s taking several medications for the next month. But, all in all, Drew is doing great. He’s had no pain and he’s back to his normal self. During his follow-up visit with his pediatrician, he’s in perfect condition and his once severe heart murmur is now imperceptible. She actually said the difference in sound was dramatic. What a relief it is to know his heart is fully repaired.
Drew is so excited to be done with it that he has, on several occasions, squealed with glee. He is so glad to finally be “repaired”. He has two straight legs that he’s currently working on rebuilding strength and range of motion, a repaired heart and other than one more very minor leg surgery in five or six months, he’s finally free of constant invasion. But, as happy as I am seeing all of the progress Drew has achieved, I can’t help but stare in awe and sometimes sadness at the torn up body of my sweet little Drew. He looks like he’s been put through a meat grinder. He has a dark and scabby incision on his chest, multiple healing wounds from IVs, arterial lines, and other incisions and his legs have dozens of scars that could be mistaken for cigarette burns, and some could be cigar burns. For anyone who hasn’t been following Drew’s story, I’d hate to think about what their assumptions are!
Drew starts school next week and we are so excited to get our lives back to “normal.” I’ve already thought about how special it’s going to be on his first day of school since he hasn’t been to school since the day before we left to Florida to start his first surgery of this long process. Wow. It’s just hard to believe how far we’ve come, the changes we’ve undergone as a family, how much Drew has evolved since spring last year. It feels as if we are at a new beginning. Our lives will forever be “before Drew’s surgeries” and “after Drew’s surgeries.” I just can’t wait to see what is in store for us!
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