I have not blogged in a long time. I have been rather occupied with the three new little ones that have joined our family. It has been a little more difficult than I had anticipated. It has certainly taken a bit to get used to managing the home, educating the children, maintaining my marriage, learning about medical termanology, and still finding time to relax a few minutes to just “be”. I think we are pretty close to having a system down and being able to rejoin our lives previously in progress.
This past week I took one of our newest additions to another state for open-heart surgery. It has been a huge whirl-wind experience. I have been so blessed in it all. I have been left amazed and in awe of my Creator. I have discovered that we have support and friends in places that we never expected or knew about.
We first found out that our little Joy needed another open-heart surgery in November. It was difficult to hear. One of her specialist felt that she may not survive the surgery and that we would be out of state, in the hospital, for 6 weeks. Another of her specialists felt the surgery would be laproscopic and we would be home 3 days after surgery. It took nearly 8 full weeks to get her cardiologists nurse to send the packet of information to her cardiothoracic surgeon. Then it took another 2 weeks to get the surgery approved through insurance. This was a desperately needed surgery. Her aorta was pressing against her trachea and left brochiol which made a tug-of-war type situation between her heart and lungs for control. This momma was having a tough time not getting a little angry with those who were causing delays in getting the surgery on the books. I was so frustrated that one nurse, in an effort to be thorough, determined not to send the packet because she was looking for a video of a test that did not exsist. It was difficult to be nice to her when I was so frustrated that my little girls body was at war with itself. I was nice, however, in an effort to keep from causing delays myself. That was the first lesson that I learned . .self control when frustrated and angry is not easy, but is esential.
Once we had surgery on the books I had another battle to wage with a government agency over who could authorise the surgery and give consent to surgeons and other medical staff. That particular battle I chose to not be as passive with. I did allow my anger to be known and why I felt angry. I let it be known that this battle would not be one that I would sit back and loose. My daughters surgery was hanging in the balance. It would have been scrubbed if we left it the way this agency wanted to leave it. God had it all under control and I won the battle. I upset a few people in the process, but my daughters health and surgery were not going to be left in the dust because of this agency and what they thought was a “nice” thing to do for someone else. The week before surgery a judge intervened and set it all in our favor. Our judge has a son who has the same cardiologist and same cardiothoracic surgeon. What a blessing. He understood my concern and the insensitivity of the agency, not just for us but for the surgical team that would all be left hanging had things been done the agencies way. That was a huge blessing.
Now, the week of surgery arrived, We had been watching the weather and there had been rain in the forcast for our drive. The weather cleared the day before our travel day. We successfully car-a-vaned to our destination and enjoyed a nice lunch about half way there. It was a wonderful and enjoyable ride. That night we played games and laughed. It was a nice evening spent with friends. We were ready for our day of clinics.
The day before surgery was a long and full day. It was so much more emotionally draining than I had anticipated. We had Joy weighed, measured, blood draws attempted, EKG, ECHO, chest x-rays, meeting with the surgeon, anathesiologist, ENT, and the surgeons Nurse Practioner. Authorisation had to be given for each physician involved as well as for the hospital. It is so hard to watch your small child go through so many tests, get poked and proded, held down in contraptions that look like they came from the middle age torture device museum. You just want to grab them up and hold them, rescue them from the pain that is being inflicted. You know you can’t do that because the tests are needed to make sure surgery can proceede and so the surgeon knows exactly what they are facing once they get your child opened up. It was so draining that we went out to a nice dinner. Again we laughed and ate. We enjoyed good company and that was a wonderful distraction for what we faced the next day. I went to sleep thankful for the news that Joy’s VSD, a hole in her heart, had closed already on its own. This meant that this surgery we were having would be her last open-heart procedure. That was a cause to focus on and rejoice in.
Day of surgery was on us bright and early. We had to be at the hospital at 5:30. There was a delay in getting her registration finished. It was lots of waiting. Then the news that there might not be a room in the CVICU (cardiovascular Intensive Care Unit) where she would go after surgery. We were all prepared for several days on ventalator. Joy’s brain just does not take the function of breathing over very well, once it has been done for her. Then we were finally cleared. They gave Joy some “happy juice” and she was silly and dopey and fun to watch. We took the walk to the cardiology floor with our surgical nurse, Shawn. He was very nice and he took my friend and I to the family waiting room and took Joy off to surgery. He came in and gave us updates. We had to wait for labs to be drawn and results back because the previous day they were not able to get enough blood or urine to do the presurgery labs. Then they needed to get her open. He came in every hour or so. It was wonderful to have my friend with me. We never cracked open our knitting or embroidery. We never opened a book or game. We just talked. It was nice. We lost track of time. Shawn came in to tell us she was open and then it seemed like just minutes later he came in to tell us she was closed and breathing on her own! It was actually a little over an hour. So amazing! Surgery was done at 12:35 and she was breathing on her own. Praise you, Lord! I could not wait to see her, yet I was afraid to see her, even though I knew she would not be on a ventalator. When we finally got back to see her she looked a little drugged. She seemed to be in pain as she reached for me. Her color was good, though, and she had no ventalator. I left and came back to see her. Her nurse, Amber, was singing hymns over her and praying over her. What a blessing. I stayed with her and sang to her. They had maxed what they could give her for pain and she would not sleep. The night nurse came on and told me to go back to the hotel and get a good nights sleep. She would bathe Joy and give her medication to make her sleep. I went back to the hotel in awe of how good she looked. No ventalator, no blood transfusion, just a little groggy. She looked good considering what she had been through.
The following day when I went in she was sitting up! The nurse reported that she sat up all on her own! She had never done that before! She looked great and was trying to get all of her leads, iv’s, and catheters out. The cardiologist on the floor came over. Her name was Dr. Garcia and she had cared for Joy her first open heart surgery. Joy was in CVICU for nearly 3 months after that first surgery. She was tiny, weighing just 2.1 kg when she had surgery. Dr. Garcia went and gathered many of the nurses that were there for that first go-round. She was amazed at how well Joy looked, how strong she was. She kept saying “good job, momma”. Oh, how wonderful that made me feel! Several nurses later stopped by with the same sentament. By 10:00 am orders were written to move Joy to the step-down CV unit. Her catheter was out. She was playing and laughing. Not even 22 hours after open-heart surgery and she seamed stronger than she had been. Her vitals all looked great. Her heart-rate was steady and even and so was her oxygen saturation. She was on 5 liters of oxygen to “inflate” her airway that had been compressed for so long. She was my little Joy. It was so wonderful to see. We were not moved until later in the day. They were moving patients around and working on an emergency surgery, so we just sort of hung out in the CVICU and played together.
We moved to the step-down unit and poor Joy had over done it. She fell asleep. Again I had staff members stopping in to see her. They were all amazed and in awe. I told everyone she had lots of prayers. I was thanked over and over for being her mom and for taking good care of her. We were then moved again. This time to a private room. Our nurse, Misty, was fantastic. She remembered Joy. She was attentive and kind just as all the others had been. I was a little discouraged at how worn out Joy was. I had to remind myself that she had open-heart surgery and being tired and worn out for a few weeks was to be expected. The second night she slept so well and soundly. She did not really wake up until nearly 10:00 and then she was really ready to go. They had to remove one of her I.V.s because she kept pulling on it and had caused it to fail. They came in and took out her chest tube. She smiled and laughed at everyone and only needed over-the-counter medication to manage her pain. She also decided she did not need the oxygen anymore. They had already begun to ween her off of it. She was at 2 liters per hour when she refused to keep it on. Her saturation levels and heart rate remained steady. She was ready. The surgery was February 29th. She was going home on March 3rd. Amazing. My husband was flown in by a friend. Once again the weather was perfect. As we were packing up Joy’s things the cardiologist came in and related a conversation he had with the surgeon where he told the surgeon that Joy did not know she had open-heart surgery. Several nurses and the nurse practitioner all related how older patients who are much healthier and have closed-heart procedures with a small incision take 5 to 7 days to be ready for discharge. We were told if we lived local they probably would have let us go home the day before, but they kept her an extra day to make sure she was ready for a 6 hour car ride. Then one of the most amazing things happened. God blessed us and another nurse. I did not catch her name. I wish I did. She came in because she saw Joy’s name on the patient list. She had spent 6 weeks rocking Joy every day. She was pregnant and delivered shortly after Joy was discharged. Her daughter would kick Joy as she rocked her. She sang to Joy and loved on her, prayed over her. She had always wondered what happened to her. We had always wondered if Joy had laid in the hospital bed those first few months of her life with no love. We now knew that someone had purposefully loved on her and prayed over her and that wonderful woman now knew what had happened to Joy. She now knew that Joy was well loved and knows that she is loved. Most importantly she now knows that Joy is regularly prayed over and taught about her Creator and Savior.
The ride home was easy. She was happy to be in her car seat. She and I slept about 3 of the 5.5 hours it took to drive home. She was so excited to see the rest of the family, to be in her own crib. She is doing wonderfully. She has a few signs of pain from time to time that are easily managed. She had a bad dream her first night home. When I picked her up from her crib, she smiled and was happy to go back to sleep.
We are not out of the woods. She is on medication to thin her blood for the next few weeks and we have to be careful to make sure she does not get sick for the next few months. We can’t go out in public or to her various therapies for a few more weeks, but she is home. She breathes easily and maintains her heart rate and blood pressure at the same time. So amazing, our God is!
Praise God from whom all blessings flow. I know I can trust Him. I know He cares for all of us. He blessed so many of the medical staff by letting them see what became of Joy. He blessed us with His provision and encouragement through His word, our homeschool support group, our church family and our AHG family.
What an amazing God we serve.