Everything changed for Grace

¹⁹ Grace's heart is beating and oxygenating perfectly, her surgery couldn't have gone better!!Her time at the hospital, however, was not without daily doses of drama. Now that we are home, and I've slept, I have to get the bulk of the hospital saga down before it starts to disappear from memory. It was quite a week plus 3 days.
Let's review:

Friday: Surgery. We got about 2.5 hours of sleep the night before surgery because little miss Grace decided to wake up and stay up and wanted to giggle and snuggle and play and...well...if you've ever taken your child in for a risky major surgery, you know that those hours before are pretty special and lets just say we didn't mind the extra time too much. Handing Grace off to the surgical nurse in the morning rendered us slobbering weeping disasters. It was *the* hardest moments that I can remember and affirmed once again that she is our daughter - completely and fully, because it completely and fully ripped our own hearts out to surrender her even though it was what was best for her. Surgery went very well and we were thrilled that she was a pinker, healthier Grace. Seeing her hands and feet and lips how they were meant to be is something we will never forget. That night all was well in the world. She was mostly sedated, sleeping and resting, and her monitor glowed all good numbers.

Saturday: Grace had an unusual reaction to one of the sedatives late Saturday morning. Her neck and upper back stiffened, her head tilted back and her eyes were locked and rolled back. I was certain it was either a seizure, a stroke, or an allergic reaction. It was quickly determined that it was an allergy or intolerance because of her weakened state and benedryl helped in a hurry. By lunch time, Robert did not feel well. This trend continued on and off for the duration of our hospital stay. His intestines were either sick, stressed, or backed up - or all of the above. By midday he went home. Around that time I got to hold Grace for the first time since surgery. It was beautifully awkward with all of her wires and cords and tubes, but it was so good. It didn't take long for me to miss her. Saturday continued to be restful and without any problems, a very typical post surgery day. However, as the late hours of Saturday gave way to the early hours of Sunday, everything started to take a wrong turn...

Sunday: Early Sunday morning Grace's respiratory rate started to escalate rapidly. Her oxygen saturation had dropped and her lungs sounded "goopy" and "wet". They had been clear. Her temperature started getting to the high end of the post-surgery-normal-range. When I woke up I could tell our nurse was worried. Later, a respiratory specialist, pulmonary specialist, and the on call cardiac fellow were staring at Grace and her monitor discussing what to do to help her. The fluid was getting worse, her newly healthy oxygen saturation percentage was dropping, her temperature was climbing, and her respiratory rate was triple digits. They tried something called a PEP treatment and it was uncomfortable and didn't work. They tried a higher flow oxygen cannula and that helped a little but not much. It was so scary. Everything seems worse when it's the middle of the night and Robert had stayed home to get some rest. It was *the* worst night of our stay at the hospital.  By morning her temp was just over 104. One of the on-call ICU attendings came in stating that Grace had developed pneumonia, declared that she had, and would always have, chronic lung disease, and that her tracheomalacia was significant and could only be repaired by reopening her chest and correcting it in the future. I almost passed out. 30 minutes later a different ICU attending came in and explained an entirely different situation. Grace did not have pneumonia. She had fluid surrounding her lungs and some significant fluid in her lower right lung. This was not uncommon following surgery, but it had to be dealt with because it was causing her too much stress. She said her tracheomalacia was minor, insignicant to her over all health, and would probably be even less as she grew. She also said that Grace would probably heal and not be plagued with chronic lung disease in the future.

?!?!?!?!

I asked if these two had ever been married. They were polar opposites. I was confused. I was tired. I was scared to death. No, they had never been married. Moving on...

My brother became my wing-man for the day, my coffee and breakfast bringer, my rock, my entertainer, voice of reason, my friend. I don't know how I would have gotten through without him. By lunch time the decision was made to remove the chest drainage tube, and insert a drainage tube to drain the right lung of fluid. Unfortunately it didn't work as well as they had hoped. So, diuretics, the slow draining tube, and time were the plan. By Sunday night I was exhausted, Jason was exhausted, Grace was struggling but stable, and I was begging God for progress by morning, dreading the thought of another night like the one before.

Monday: Early Monday morning there wasn't any real progress - but it wasn't getting worse either. I decided that was progress enough. Later on, however, the left lung got worse as the right got a little better. The X-ray showed fluid beginning in the lung as well and crackling had started. She now had pneumonia. Robert returned feeling a bit better and the doctors added an antibiotic (bringing the total since surgery to 4), another diuretic, and thus far nothing had grown from the bacterial swab. I asked about any pro-biotic therapy they could use but that wasn't embraced. All those antibiotics were bound to cause some kind of imbalance. They decided to take out her catheter which was a small victory and was one less tube to work around when we tried to hold her. Moving her around, having her sit, and snuggling with her all were supposed to help her move the fluid, help her to cough, and clear her lungs. By early Monday evening she had yet to urinate on her own, and they decided to swab her for a virus. It is hospital policy that once a patient in ICU has been swabbed for a virus they are in isolation. This means everyone in the room must wear a disposable yellow gown, hair mask, and face mask. When the nurse told us this I was bummed. The doctors would be even scarier for Grace. Then she told me Robert and I would have to follow this policy as well. That covo went a little something like this:

Me: You mean we have to dress in those gowns too? 
Nurse: Yes that's our policy. It's for your protection as well.
Me: Um - I'm pretty sure whatever she has, I have been sufficiently exposed what with my holding, kissing, hugging, and caring for her all of this time. I'll take my chances.
Nurse: I'm sorry, it's our policy that you use the protective masks and gown. 
Me: I understand that it's your policy. I get it. I've spent the past 6 weeks bonding with this child who has been through more pain and terror than you can imagine and is currently terrified by anyone who appears to be a doctor or nurse. She now sees me as her Mama, and her safe person. There isn't a chance on earth I will be dressing up like one of you and compromising our bond. Someone will have to wrestle me to the ground and force me to wear a mask.
Nurse: I understand, but it's our policy...
Me: It's my policy to be her Mama, not her doctor and not her nurse. No mask for me and no mask for her Daddy. The end.

We never put on a gown. We never touched a mask. No bacterial or viral cultures ever came back positive. No one ever even mentioned it to me after that discussion. Don't be messing with a Mama bear.

After the gown debacle, the same nurse let me know that since Grace hadn't urinated yet she would be getting a new catheter if she had not gone on her own by 6. It was 5:40. I asked if she had done anything to encourage her to go potty...

Nurse: like what?
Me: Like massage. Like warm water on her parts, like running water, like putting her hand in warm water...anything?
Nurse: No.
Me: Could you get me some warm water?

So, as the nurse watched, marveling at my state-of-the-art techniques, I poured warm water on Grace's bottom, fanned it, put a clean diaper on (because the measurements had to be accurate incase she peed), and put her hands in warm water. Then I wept and prayed and Robert and I each held a tiny hand and begged for potty. My other hand was on her diapered bottom. Suddenly my hand on her diaper got warmer and warmer and warmer.

"She went potty!!!!!!!" 

The nurse was stunned. No catheter!! I've never been so thankful for potty in all my life. You see, when you have had setback after setback in the hospital and one tube has come out - you don't ever want it to have to go back in. By Monday night, we were counting our blessings and waiting to hear results of the virus swab and anything else that might help Grace to turn the corner. She was completely weaned off of any sedation and was using morphine, ibuprofen and tylenol for pain.

Tuesday: All through the night between Monday and Tuesday Grace coughed. This was good! Coughing would help clear the fluid and ease the burden on her lungs. However, she writhed in pain with each cough. For some reason the morphine wasn't cutting it and every hour and a half she was awake and in pain. This was the other horrible night. There are few things worse than watching human suffering and being unable to help ease the pain. When it's your child? It's hell on earth. I can't even describe how frustrating it was to see her in pain and because it was morphine that took the edge off, I had to ask every two hours for another dose. They can't just give heavy pain medicine without an order and therefore I had to authorize it. If you've ever struggled with pain management, you know that staying a head of the pain is key. We couldn't even keep up with the pain, nevermind stay ahead of it.  By morning rounds, it was discovered that she was on half of what she should have been on for pain medicine. Half. No wonder she was miserable. Most kids on day 5 post-op aren't in that much pain any more. Her pneumonia  produced such a hard cough that it was torture every time she coughed. I was livid. Still nothing grew from the cultures, but her temperature was normal and her lungs were improving. She had not been able to drink or eat since Saturday because her respiratory rate was so high. It was starting to come down and she was so happy to drink, nodding repeatedly when we asked her if she wanted a drink. We got her sitting up more and coloring and she was starting to seem like herself a teeny tiny bit. When her arterial line came out of her right hand she stared at her hand for a minute and then promptly folded it for comfort. Adorable.

Wednesday: She continued to show improvement in her x-ray. Slooooooow improvement but improvement. At this point, I was celebrating any improvement at all. However, something was not right. We had needed to hide her cup at one point because she was so eager to drink and couldn't because of her high respiratory rate.. Now that it was down and she could drink and eat - she refused. By lunchtime she was still refusing everything. The doctor told me that she needed nutrution and that unless her appetite kicked in she would need an NG tube in her nose, to her esophagus and to her stomach for feeding. While she opened her mouth early afternoon for her nuk I saw why she wouldn't eat. She had thrush, a painful yeast infection in her mouth. Her tongue was covered with white spots. About an hour later the feeding tube went in. The good news for the day was that none of the virus cultures came back positive so isolation was over and all could return to normal hospital dress. The medicine, fluconozole was started in her IV to fight the thrush. About an hour later we noticed her eyes were swollen, her face was flushed and she was not right. She was having a reaction to the fluconozole.  It was a 24 hour dose, so it worked well but once again benedryl was given which knocked her out for a bit.

Thursday: The thrush cleared up quickly and a new medicine was prescribed to help. This had to be swabbed around her mouth and left alone for 15 minuted 4X a day. She started eating and drinking here and there. By late morning her lung drainage tube was removed as was her central line. Now only her oxygen and NG tube remained which made holding and moving her so much simpler and she was much more comfortable. There was talk of us moving up to the 8th floor where it's quieter. We liked that idea! Eating with an NG tube proved to be a little tricky. While it's a very tiny tube, we are certain, especially with the slight narrowing in her esophagus that she felt that little tickle because eating was a challenge, drinking was a challenge and she coughed and coughed all night long.

Friday: The team planned to leave the NG tube in. That's when I decided to put my super-mom cape back on and put my foot down.

Me: Could I weigh in on that decision?
Docs: Ok...
Me: I believe she can feel the tube. She wants to eat, she starts to eat, and then she coughs and gags and pushes it away. Could we take the tube out and see how she does understanding it may have to go back in if she doesn't eat and drink enough today?
Docs: Fair enough, but she needs nutrition - it will have to go back in if she won't eat.
Me: Agreed.

And so the NG tube came out. Oxygen came off. She was completely unplugged, and was she ever happy and free. Guess what she did with her joy and freedom? She ate and ate and drank and drank. After dinner time we said goodbye to the CICU. It was thrilling to know we graduated out of critical care but it was a little unnerving to leave the team of doctors and nurses who had 8 days with Grace and knew her inside and out. Literally. We spent the night in a much quieter, much larger room and we had our own shower!!  

Saturday: However, quiet doesn't always mean better sleep. There were so many interruptions from nurses to medical students we hardly slept. Any of us. After our 6:30 trip down stairs to radiology, between 7:00am and 8:00am, there were a total of 8 visits to our room. 5 different people listened to Grace which upset her tremendously. Which upset me, tremendously. We were all exhausted. So, our new nurse after the shift change put a "Do not disturb" sign up and became our bouncer. Grace slept for 2 hours straight. Robert did too. I held Grace while she slept and daydreamed about a burger, onion rings, and a rootbeer shake. I had eaten healthy food all week long...salads, lean meats, veggies, fruit... it was now time for saturated fat, deep fried food, and custard. Amen.

After my artery clogging lunch I napped. Who knew such a meal would induce that which I needed most? I would have indulged sooner in the week perhaps. (just kidding). When we talked to the attending on that shift I indicated that perhaps Sunday (the following day) would be a good day to go home. He was open to the idea as long as her x-ray looked good, her labs were good, her oxygen saturation while sleeping stayed in the 90's, she did not require a discharge echocardiogram, and her eating and drinking kept up. That whole day there was no supplemental oxygen and it stayed off...

Sunday: As Grace slept we slept. We slept really well, all three of us. No alarms went off for low oxygen and for the first time in her life, Grace slept with healthy oxygen saturation all on her own. Her X-ray showed even more improvement, her labs were good, her echocardiogram earlier in the week was conclusive that she is healed, and she ate almost as much breakfast as I did. It was time to go home and so we did. 

We have 5 medicines plus advil should she seem to need it, and two inhalers for our tiny 15lb and 13 oz little warrior. There's an area on our counter that looks like a small pharmacy and 4 times a day it's time for her to have her meds. It's not for forever, it's just for now. In 6 days her antibiotics will be done, and a little after that her thrush meds can stop. Her diuretics will finish up soon and her zantac will keep her tummy feeling happy for a little while while all the meds mess with her intestines while helping her over the post-surgery-hump.

So what advice have I gleaned from this experience? Ohhhhh that's another post for another day. It was the best of times - it was the worst of times. One thing I can share for sure is this:

You can be just short of hell and still be thankful. There wasn't a single moment that I wasn't grateful that her heart was healed. However there were lots of moments when she was really in a heap of trouble even with her healed heart. There was conflicting opinions of doctors. There were mistakes made that caused her pain. Lots of pain. There were nurses I loved and trusted, and there were nurses I didn't. There were adverse reactions, there were really high fevers, and there were really low moments of crying out to the Lord "when will this get better?!"

I learned that it is absolutely alright to cry out to the Lord at possibly one of the hardest if not *the* hardest trial of your life and beg for mercy....for mercy for your suffering child. I also learned that what helped me the most wasn't feeling guilty over not having joy in the trial - because I did not have joy. Could I praise God in the storm? In the trial? Over the body of my screaming child staring at me with anguish wondering why I didn't just get her out of there? I could praise Him and thank Him for being there with us and carrying us through but I also begged for deliverance. It didn't come the second I asked for it, or the next day even - but it came.

It's still coming as I watch this little girl literally come to life and her healing little body looks better and heals more and more each day. I'm so thankful she had the surgery here. Had she been in China she would have been alone with no nanny - with no body for 8 of 10 days. I had prayed and prayed, every day from December 12th on, we prayed that her surgery would come soon whenever it was God's perfect will. We were so disappointed when after preparing for surgery in China, she was released. Sometimes we have to thank God for prayers answered the opposite of what we wanted at the time, don't we...

No child should have to go through surgery and recovery without their family. It is no coincidence that while in the hospital Grace's numbers improved when she was held - always. We all need to be held because life is a balance of surviving and thriving. We are so grateful for the many many people all over the world who prayed for us and with us as we survived this experience. You will never know how your words of encouragement, prayer, and love both in person and in black and white text helped us to keep our eyes fixed on The Healer. He holds our every moments and calms our raging seas and nothing is impossible for Him.