Friday, May 8, 2015

May 8 - Dear Nicholas Sparks (Guest Bloggers Luke and Renee Angil)

Dear Mr. Sparks,

My husband Luke and I got pregnant very soon after being married. We weren't too worried about it though. Luke had just recently joined the Air Force. Soon after Luke finished tech school, we got orders for Misawa Japan. That would take us across the world, very far from any family. I think this was especially hard for Luke. Luke had never really left home. He lived on his own for awhile, but he was always minutes away from his immediate family. Myself, being an Army brat, was very used to moving. Come to find out this was very hard for me too. I'd never been that far. We were both very homesick to say the least.

My due date was to be November 12, 2004. Just like Tyler (my 11 year old), David didn't want to come out. At 42 weeks I was induced. Up until the second I delivered David I thought he was going to be a happy, healthy baby. Funny thing about being induced was, I was scheduled to be induced that previous Friday, November 19th. I got a call the night before and it had to be cancelled, due to an emergency. We rescheduled for Monday November 22nd. Thank god for that! I was later told the doctor on call Friday would have had no idea what to do. She'd never had to deal with a congenital diaphragmatic hernia. The doctor that was on call had previous experience and immediately recognized it after the initial x-ray. After I delivered David I could tell by the nurses face that something was seriously wrong. I remember them telling someone to page Dr. Johnsonwall STAT. I watched ER enough to know STAT was serious He was then whisked away to x-ray and Luke went with them. I was scared to death, but the doctor assured me that it was probably only a collapsed lung and they could fix those easily. WHEW! Ok. So I had dinner and waited, and one was coming back. About 2 hours passed and Luke came back and I could tell he had been crying. He told me something was very wrong and Dr. Johnsonwall would explain it to me. Meanwhile, David was being sedated, bagged and hooked up to numerous machines. I told Luke to get me out of this room and take me to my baby. He got me into a wheelchair and wheeled me into the nursery where David was. It was the most heart wrenching site I had ever seen at that point in my life. Little did I know that it would only get worse. After I got back to my room Dr. Johnsonwall came in with consent forms and told us that this was not good. CDH is the 2nd worse thing that could happen to a baby. Number one being congenital heart defect. He said they would do everything they could. I immediately lost it. Because this military facility didn't have the resources to help David they spent most of the night calling around all over Japan to find a hospital to help him. They even called a few stateside hospitals. David was unable to fly though b/c his lung was just not stable. The doctors also decided he couldn't go too far. Because of the bumpy back roads in Japan he probably wouldn't make it. Travel time is doubled in Japan because of the roads. Luckily we found a hospital only an hour away in Hachinohe City. This is where David would spend the next month. The next time I got to see David was about 2am...8 hours after I delivered him. He was in a neonatal transporter in the back of an ambulance. We left that hospital and followed that ambulance all the way to the hospital. Once David got up to the NICU they switched him over to their equipment, started giving him all sorts of meds and fluids and tried to stabilize him. I can't really get into the technical part of it...I felt out of my body, like I was having a dream. Most of those first two nights are a blur to me. I remember sitting there, in pain from just delivering a baby several hours earlier, and watching about a dozen people rush around Luke and I to help David. It was like we weren't there. We were allowed to stay the night at the hospital. This was a privilege because Japanese culture is so different than ours... that would not have happened in any normal situation. Having a baby in Japan is a very personal thing. The mothers have to stay for about 2 weeks, with the father only visiting occasionally.

Tuesday, the morning after David was born we were also informed by the chief of the hospital that the tech who performed my ultrasound at 5mo. noted that there were problems, passed them on to the doctor and the doctor was in the middle of a move and overlooked it. Some of you are wondering why we didn't 'sue'...b/c everyone on base was very helpful and tried to do everything they could for David...and they did. He's alive. It would be ungrateful of us to even think of doing that. Maybe it was supposed to be like that? Maybe if it wasn't overlooked, David would have wound up at another hospital and the results wouldn't have been so good. We are grateful!

The next 4 days David lay there fighting to become stronger. He couldn't have surgery until he was stronger and stabilized. The doctors and nurses were at his side 24-7, watching over him like a hawk. It's not like here, where they are checked on once an hour. The ratio of nurses to babies is 1:2. Four days after his birth David went in for surgery to repair his diaphragm. This surgery would last about 6 hours. It was Thanksgiving Day, and as we watched sumo wrestling with the hospital chief of staff and his wife, David was down the hall fighting for his life. I walked up and down that hall several times...trying to get a peek in.

The doctors finally wheeled David back into the NICU. Still all swollen and yellow like he has been since he was sedated the day he was born...he now had a large dressing under his left rib cage. The doctors told us before he went in, that there was a possibility that he wouldn't make it. **Now when I say the doctors told us throughout David's story...I mean we had a translator there for us throughout the whole process**. They said the surgery was a success and normally they would use a mesh to cover the hole in the diaphragm. David's wasn't exactly a hole though. His diaphragm was shaped like a horse shoe. So they had to close it and sew it to his back. The next 48 hours were very stressful. If David was going to reject this surgery, he would most likely do it in the next 2 days. We were on pins and needles. He had ups and downs. They were constantly x-raying him and taking his vitals.

About a week after surgery, they slowly started to wean David off of his sedation. After surgery, things moved pretty fast. He was only in for a month. About twice a week he would come off of certain machines, medicines, fluids...etc. He was originally on a feeding tube, breathing tube, several fluids to feed him, tons of medications to fight bacteria and infection and to control pain. About a week and a half before we got to bring him home I was able to feed him with a bottle. About a week before that I was able to pump and give him breast milk through his feeding tube. He was healing fast and getting stronger and stronger as each day passed. I kept begging to take him home. We wanted him home for Christmas. They wouldn't promise us anything. But he was looking well! Not one complication after surgery except a small seizure. They aren't sure what caused it. They think it was low magnesium levels. They did an MRI and everything was fine. Soon the breathing tube came out and he just had a canulla, blowing oxygen up his nose. The feeding tube stayed in his nose the longest, but I was still able to feed him a bottle. He got his first bath a week before we were able to bring him home. He screamed like crazy!!! I loved that sound!

Up until this point Tyler had not seen David. He was only 9 at the time and not allowed in the NICU. Once David was moved out of the NICU he was able to come visit. He was so excited. Tyler was very upset this whole time. He wanted to see David in the worst way, and could not understand what was going on. About a week before we got to bring him home, we brought Tyler with us. He got to help give him a bath and he got to hold his brother for the first time. Tyler was very patient with us and understood why we weren't home a lot. We got up in the morning, got Tyler off to school and drove an hour to the hospital. We stayed until Tyler came home and drove the hour back home. It was rough on Tyler. He stayed with our neighbors a lot. Thank god for Ulli!!!

Today we got to bring David home!! Five days before Christmas. That's what we wanted, to have him home for Christmas. It was the best Christmas ever. I've never felt such a relief! We invited Ulli and her family down. We were so thankful to have them there. They were our support system when we didn't have our family. They saved us from having to worry about Tyler while we were worrying about David. Tyler spent Thanksgiving with them, and they saved us a plate when we came home that night. We are forever grateful to them.

Since Misawa doesn't have the specialists for David's follow up care, the Air Force had decided to move us. We have to put together an EFMP (Exceptional Family Member Program) and it has to get approved. Originally we were supposed to be in Misawa until March 2007. But the Air Force sometimes has to move people due to medical reasons. We had our choice of about 4 bases. When we heard Wright Patterson AFB was one of them, we were soooo excited. That's the closest base to our family in Pittsburgh. We spent the next few weeks gathering all the necessary medical paperwork to get us moved. Within a month or so we got approved for WPAFB and we were on our way.

David did well on the long plane ride home from Japan to Ohio. He slept the ENTIRE way!! I was wondering how he could be so sleepy when he slept for a month straight!

We now start of journey or follow up appointments for David. He has to see a developmentalist to make sure he's on track. He also has to see a Pulmonologist, Neurologist, Gastroenterologist and Cardiologist. The neurologist says he's fine! Pulmonologist clears him.. but wants to watch him. Gastro says it's the best CDH they've ever seen, and Cardiologist only finds a small heart murmur that they say will close up in about a year or two on it's own. The developmentalist suggested physical therapy, speech therapy and occupational therapy. He got evaluated by all three for services and all cleared him except physical therapy. We went to physical therapy for about 6 months. They helped him crawl, roll, and walk on time.

David has had a few problems since birth, but nothing too bad. I actually feel like we are one of the lucky families. I read a lot of other stories about G-tubes, and eating problems and thankfully we've never had to deal with that. David got a pretty serious pneumonia in March of 2006 and was hospitalized for a week. That was very touch and go and the night we got to Children's...they were not absolutely sure he'd make it through the night. He was very weak and couldn't breath on his own anymore. They had to intubate him and he stayed this way for four days. He eventually recovered and came home.

The second time David got pneumonia was in August 2006 and it was nearly as serious. He was hospitalized for two days. At David's follow up appointment for this episode in September, the pulmonologist did another x-ray of David's chest. What they thought all along was cysts and scar tissue from his initial surgery was actually his bowels coming through his diaphragm again. The only reason they found this was because David was constipated and these "cysts" were a different color now.

They admitted David to Children's again so they could run tests on him and so we could talk to the pediatric surgeon. He wanted to operate on David ASAP. So, David had his 2nd hernia surgery on October 19th, 2006. I felt very comfortable about this surgery. The doctor was very confident. This time, we also were able to have our family with us. The surgery went very well and only took about 3 hours. David was coming off sedation when we went to his room and by the next morning he was climbing the walls. They suspect fixing the two holes they found will prevent any further pneumonias. So for now....were home free.

Written by David’s parents, Luke and Renee Angil (Ohio)

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