Did I mention nasty? Yah, of the 4 surgeries Helaina has endured since we brought her home from China, this p-flap repair was the worst in every way. Her discomfort and pain level was high, she had nausea and vomiting for 3 days, she literally moaned during the entire hospital stay, she was always warm and sweaty (even though she thankfully never ran a fever), she didn't want to get out of the bed - not even to go to the toy room or be pulled around in a wagon - ugh, it was awful. Thankfully she's made great progress since we came home late Friday afternoon, but it was a very scarey roller coaster journey.
At home the morning of surgery - popiscles, jello (which Helaina doesn't like) and apple juice. We had an 11:30 arrival time with surgery scheduled for 1pm. I tried to get the surgery first thing in the morning (well, actually called 3 different offices and begged), but surgery is scheduled according to the age of the child and that was that. Helaina actually said many times that morning "When we going to the hosibal?"
Waiting ...
... and waiting ... and waiting.
With Helaina becoming hard to contain (meaning hungry and tired), when 1:00 came and went I checked at the nurses station. Our surgeon was running 1 hour behind and it would be 2:00 at the earliest. Ugh. With that knowledge, we let Helaina fall asleep around 1:30 knowing that when we had to wake her up for surgery she would be a BEAR.
Yup, Helaina woke up around 2:30 when the anesthesialogist was in our room talking to us. It took one glimpse of her in her scrubs to produce this tearful, pathetic face on our little angel. I tear up just looking at this picture remembering this moment of fear for Helaina. Jim had "suited up" to walk with Helaina to the operating room but she was so upset that all she wanted was me. We did a last minute switcheroo with Jim quickly tearing off the scrub suit and me putting it on. I'm not a fan of being in the O.R. with Helaina because I absolutely hate seeing the gas mask put on her face then watching as she drifts off and her body goes limp. For me that's the moment when it all becomes real and my panic sets in.
Which leads us to this picture of our little darling in the PICU step-down unit where we were until Thursday afternoon. Helaina's surgery lasted 2 hours & 45 minutes. Our surgeon repaired the p-flap and put a new tube in one of her ears. He also repaired the small fistula in her palate by grafting in a piece of pigskin. He said that the pigskin meshes and grows with Helaina's own skin to form a stronger bond so that hopefully the fistula won't reopen. When I asked how everything went overall, his reply was "Textbook". We'll take that. The new children's hospital is very nice, spacious, super high-tech and private, but that doesn't diminish Helaina's pain.
Helaina didn't want to go but we persuaded her to take a walk to the toy room Wednesday afternoon just to get her out of bed and get her moving. She had developed a little flemmy cough and one of her lungs sounded "coarse". Definately didn't want a bout with pneumonia on top of everything else.
This is how our toy room visit ended, asleep in my lap. She was just sapped of any strength that she had. Amazingly, Helaina had practically no facial swelling or bruising with this surgery.
Friday morning I begged Helaina to eat some cream of wheat, try a little yogurt and drink some apple juice. "Minimal intake" was what the nurse noted for the morning meal. We sure wouldn't be discharged with that on her chart.
Again we had to talk Helaina into going for a ride around the floor in a wagon, something she normally would have loved to do.
Thankfully some morphine and a good morning sleep dulled Helaina's pain enough so that she was able to have a good amount of broth and liquids at lunch to get us out of there. We got home about 4pm on Friday.
Here are a few highlights of our 4 days of torture:
About 7pm that first night I saw Helaina's hand with the iv in it sitting in a pool of blood with more blood gushing out from the iv line. I had a panic attack and prayed that the iv hadn't come out of her hand while Jim ran for the nurse. After the nurse undid all the tape she found that the iv was still in Helaina's vein (thank goodness) but one part of the tubing had come unattached. They got that fixed up, changed the sheets and then I started breathing again.
Midnight provided yet another panic attack. I was laying down on my pull-out bed in Helaina's room when I heard her cough. I sprang up like a rocket and saw that she was blowing bubbles out of her mouth. I sat her up and all of a sudden she pulled a Linda Blair Exorcist moment on me and vomited the darkest yuck I'd ever seen. I started screaming "Oh my God, she's vomiting, help me, help me, please someone hurry!" Two seconds later her room is filled with 6 nurses and the doctor who's on the floor at all times. Some run to Helaina, others run to the sink to get wet washclothes while the doctor is hovering over her. Helaina's crying, I'm crying. One of the nurses standing next to me puts her arm around me and starts rubbing my back. "It's ok, Mom, it's ok. It's just blood that she swallowed during surgery that was sitting in her stomach. It's common and nothing to be concerned about. If it were new bleeding from her throat it would be bright red. It's ok." Little did I know that this would become routine over the next few days.
Jim called me first thing every morning when he woke up at home and quickly became accustomed to me answering the phone while crying. Nights were long and sleepless for the most part. Helaina was on a small dose of morphine every 2 hours and she certainly needed it. She was on antibiotics, steroids for swelling (which made her nausea worse so they put her on anti-nausea medication). She had to get eardrops because of the new ear tube and she also had 2 types of nasal spray to help reduce swelling and keep things moist. The respiratory monitor was constantly going off. I quickly learned what the normal respiratory rate should be and that it drops significantly after morphine when she's in a deep sleep. I spent most of my time hovering over her making sure she was breathing. Helaina moaned A LOT, so much that I nicknamed her "the siren", because that's what she sounded like - an ambulance siren! She couldn't talk from the swelling, pain and the sensation in her throat of the new flap, and I missed the sound of her sweet little voice.
Saturday at home we all took it easy, trying to figure out which pain meds helped Helaina without making her vomit. She ate & drank a little and slept a lot (she's on a cool, soft foods diet for 2 weeks). She started saying a few words during the day and was talking in sentences by evening. It was great to hear her talking again. Her voice seems much higher now than it was before surgery and even with it sounding nasal now because of the internal swelling (which can last 4-6 weeks), there is definately more clarity to it. She's snoring a little at times, but not constantly, so that should end when the swelling is gone. She's had no sleep apnea (which can be a side affect of the surgery) so we're thrilled about that. Today (Sunday), she turned the corner. Her appetite was better and she seemed to drink with less discomfort. Helaina lost 3 pounds during her ordeal - her little pot belly is gone and we can actually see some of her ribs! She only needed pain meds 3 times and we actually had to tell her to slow down and take it easy at times throughout the day. Huge sigh of relief that it's over and she's doing well. If all goes as planned we won't see the inside of the hospital until she's about 8 years old when a bone graft will be done. Good thing because I need a few years to recouperate from this one.
. 
.
