it seems that when a story evolves around my little big man sam the story is never short or easy to tell. such was the case with the writing of how he came to be. and now here i am again with the story of his diagnosis and surgery. its a long one...i'm just warning the reader but if your newborn is throwing up at all you might want to sit down and read through this just in the slight chance sam's diagnosis could be your child's as well. it would be worth knowing as soon as possible.
I’ve been hoping to be able one day to write down the outcome of what was nagging at me regarding Sam’s health for the past 4 weeks. I was hoping it would be a good thing to write about in the end. And now that it seems that he is on the mend and healing, healthier and happier and eating without vomiting, I am so grateful to sit down and write his story for him.
I first noticed that Sam was irritable when I spent the week with him his second week taking his newborn photos. He was a difficult newborn to work with because he never seemed comfortable especially after he had just eaten. That is usually when newborns are just dead to the world and limp like a doll but Sam was what you would label “fussy”. The very next week I took him to a different doctor at a different practice than I had taken him to for his circumcision. I just wanted to be able to get in to a doctor to let them know that I felt something was wrong with him. I tried to explain that I felt he had issues associated with eating and breathing from the sounds he would make and he was throwing up more that I felt was normal. He also cried after he ate for a good long time especially at night. I heard all of the typical predictions like acid reflux and colic until I fed him at that doctor’s office and they heard him swallow. He had a squeaking sound if I had to describe it. The doctor ordered for Sam to do a modified barium swallow to see what was happening with his food and esophagus. So we went a day or so later to the hospital and did the modified barium swallow test where Sam of course was a perfect child, not crying at all and sucked down the barium like it was pure sugar! The radiologist asked me if he cried if he rolled over and I had to inform him that Sam was only three weeks old although he looked 3 months! Because it was a modified barium swallow test the radiologist only looked at his throat and airway. He never looked down at his stomach. I wish we had known to take the extra time and look down while we had him in that x-ray room! I remember talking to the speech pathologist who administers the barium during the test and asking her about his throwing up. I remember telling her how frustrated I was and how Sam threw up his food more and more consistently. She heard me and empathized with me and yet there was nothing she could say really other than if I felt it was really an issue then I needed to be persistent in pursuing and answer.
With a clear and positive modified barium swallow test done I felt like I could relax and just let things go a little since we didn’t “see” a problem that we could fix. A few days later, Sam continued to cry right after eating and cry for a good long time. The more days went by the worse it got. Most people saw him during the day and he was asleep but those who were at the house and around when he was eating understood that he seemed to be writing in pain and cramping up. It was just incredible and I knew deep down that something was not right with him. I just couldn’t get the answers I needed and I was not settled about the matter. I made an appointment to go back to have his circumcision checked by the physician who performed it as is protocol. While there I brought up the subject of Sam throwing up. The doctor had sent in his med student to check the circumcision and when I told her I was concerned about his throwing up so much and seeming to be in pain she said she would mention it to the doctor. The doctor came in and without even looking at Sam he abruptly informed me in a very matter-of-fact way that Sam had tracheo malacia and that he would grow out of it. He told me to google search it and not worry about it because he would grow out of it. I thought it very odd that he would diagnos sam with something so fast without talking further to me. and he never mentioned his throwing up once. he was so abrupt that it shocked me and i let it alone. I was there with my mom and she thought it was odd as well. But he was supposed to be a very experienced pediatrician so I just left and let it be. I only felt o.k. for a matter of hours and then I was uneasy again. Sam threw up that night again and the next few days as well.
During the next two weeks Rod and I continued to feel like something was wrong. I talked to friends about changing his formula. We tried three different types of formula and then finally switched Sam to soy formula thinking he was lactose intolerant. He seemed to do better on the soy for the first little bit but then at the end of the week at 5 weeks of age he was vomiting with a vengeance. He would vomit clear over my shoulder and drench not only me but anything behind me. It was scary! It was so forceful that it would take what seemed minutes for him to catch his breath. And then the crying began. He would cry for a long time and move his torso from side to side just like he was cramping up. He would also go straight stiff like a board with his torso and legs. He was not to be comforted.
Earlier on Facebook when Sam was born I had asked everyone if they knew of a good pediatrician. I had now been to two of them mentioned. The only one left that I hadn’t gone to was Dr. Alfred Dushman who was recommened to me by my good friend Kristen Truman. Her children when they were infants had had severe problems that sounded a little similar to Sam’s and Kristen couldn’t say enough good things about this doctor. Her children loved him too and have been seeing him their entire lives. Her oldest daughter is 15 and even told me herself that Dr. Dushman was the best. Kristen and I spoke on Sunday the 18th in length. Sam by then had had a terrible weekend and I was nervous and stressed about him. For some reason, I didn’t know if he’d “hear” me or what I would tell him that would be different then I had told the two previous doctors.
So Monday came and I kept feeding Sam as normal and struggling with it. In the afternoon Linda Lee came by to pay Jack and Morgan for cleaning up her yard for the month. It was a chaotic minute when she came because I had just finished feeding Sam and was burping him. I asked her to come in and I had Sam over my shoulder and we walked into the kitchen area. As we did that he vomited so much that it went way behind me and onto the floor. Linda got a shocked look on her face and asked me how long he had been doing that. We talked for a minute and she told me a story about her youngest son, Chris. Christopher did the same thing when he was young but then one night Linda felt she should stay near Chris all night so she slept with him on her chest on the couch and in the morning he was not responding to her at all. She took him immediately to her pediatrician’s office and her doctor looked at Chris and told her he was dying and that she needed to go directly to Sunrise Hospital and get help. Christopher was so dehydrated and his numbers were so far off the charts that they had to work for a day just to stabilize him. Linda was told he might not make it. They discovered that he had pyloric stenosis (the enlargement of the valve/muscle right at the bottom of the stomach and top of the intestine.) He was operated on and stayed in the hospital for seven days. As Linda was telling me this I remember thinking to myself, “Why would she tell me this very scary story?” I was probably visibly scared by her story. She had to leave quickly and after she was gone I just sort of wondered how weird all of that just was that had happened. I was cleaning up the mess Sam had created while he was crying and I thought again, “What a terrible story! How incredibly scary would that be.
I have seen a baby lifeless. I can still see my niece, Camille, in the hospital bed after she drowned. I know what that scene looks like and here I had Linda’s story on top of that image. It scared me beyond belief. I told Rod about it. I thought about it for a day or two after.
On Wednesday night, the 21st of December, at 11:30pm I was in Sam’s room with him after feeding him and he had just vomited everything I had put in him during the evening. He was crying and unable to be consoled at all. He was stiffening up like he always did and I could not do anything for him but lay him down on the changing table. I remember feeling helpless and thinking to myself, “What can I do. Something is wrong with you, Sam, and we need to find out what it is. This is just not right.”
Almost immediately, a very clear and almost audible thought came in my mind. The sentence was this: “You need Kristen Truman’s doctor and you need him now.” I can’t really describe how strongly I felt this impression. I didn’t feel like it was my own and so I decided right then and there to act on it. I put Sam in his crib and went right to my cell phone and texted Kristen for the phone number of her doctor. Knowing it was so late I expected her to text me in the morning so when her return text came almost immediately after I sent mine I was amazed! (Just to note, I had tried on Sunday after talking to Kristen to search for the doctor online but it was a little misleading because his practice had been recently renamed or purchased by a larger group and online the website was confusing so I was never able to get clear contact number for his group. I thought it was just too confusing and not meant to be at that time that I looked for it.)
I told Rod that I would get an appointment for Sam as soon as I could.
On Thursday I had to work at Yesco (Rod’s office) doing photos for their company. Everyone including the head of the company came up to me and congratulated me on Sam and asked how he was doing. I put on a smile and said he was great. It was as if I wanted to scream “He is struggling! There is something really wrong with him and I don’t know what it is!” But of course one doesn’t do that. Every time I said he was fine it felt like I was trying to convince myself that he was but I knew that he was not well.
After I finished my work there I went out and got ready to leave. I made an appointment right there from my car with Dr. Dushman to see Sam that afternoon. (This seemed amazing to me that he had an open appointment available!) Rod told me that he would meet me at the appointment. I was so glad he was willing to get off work to go with me for this one. It would help us both have the same information if there were any new information to have regarding Sam. It would also be a huge support to me and help me feel like I was not a crazy lady as I tried to describe things about Sam to this new doctor.
I took Sam with me to lunch with a friend and her mother. He slept the entire time. I left my boys at my friend’s house to play with her son so I returned there with her and her mother where we got Sam out of his car seat to feed him. While there I expressed my concerns about Sam and told them about my doctor’s appointment. They saw how he acted odd after I fed him a little and agreed it seemed strange and like he had some kind of cramps. He didn’t vomit but was struggling after eating even a little.
In the later afternoon, just before I went to the doctor’s office to meet Rod, Morgan told me that his ear hurt. He had had a cold the couple of days prior so a thought came to me: what if he has an ear infection? I had a feeling I should take him with me and have the Dr. look just to be safe. So Morgan came with me and Jack stayed with my parents.
We met with Dr. Dushman and explained to him everything we could. He systematically went through the information we told him. He then sort of categorized the information and asked us specific questions about it. I can’t really describe Dr. Dushman’s manner or how he went about finding Sam’s possible problem. It all just sort of happened. But I can say that I felt like I could breathe deeply after talking to him. I felt like he restated what I was saying and he got it. Then he explained what three things concerned him with a child Sam’s age. Of those things, Sam had two main symptoms on his list. He was vomiting with force and would cry immediately after eating for hours. That is not normal. There were two things he thought it might be. One was heartburn. Some babies get it. But the other possibility was pyloric stenosis. He didn’t think Sam had that because it would have been obvious on the barium swallow test. But I told him that during that test they never looked at his stomach. Dr. Dushman and I went back and forth about that test because he thought they would have looked and I knew they did not. So he went right then and had his staff pull the report from the hospital. He wanted to have his own eyes on that report to see what they had actually done. It turned out that both Dr. Dushman and I were correct. But what I had not mentioned was that it was a “modified” barium swallow test where only the throat is x-rayed and not the stomach. If it has not been ordered as “modified” we would have seen his stomach and intestine. For that reason, Dr. Dushman ordered his staff to get us an ultrasound the very next day so we could see Sam’s stomach area. He told us that he didn’t want us to get worried because he might not have anything wrong but he just needed to take a look at his stomach and intestine to make sure because if there were anything wrong we would need to find it sooner than later.
Near the end of our appointment, Morgan jumped up on the bench and Dr. Dushman looked in his ears. Sure enough he told me that I did the right thing by bringing Morgan in because he did have an ear infection and I would have been up with him all night and back in the Drs office the next day. I was relieved that I had listened to that earlier thought I had come across my mind about Morgan’s ear and that I should have him come with me. What a blessing that turned out to be in hindsight!
So we left that appointment feeling like finally we were getting the help we needed and closer to the problem. The next day, Friday, December 23rd, Rod took Sam to the ultrasound by himself because it was far away and I was going to take the boys to my parents to help them get their house ready for my brother and his wife to come stay for Christmas with their toddler twins. I was planning to go to a movie with just Jack and Morgan for something fun for just them to do. I’d been spending so much time tending to Sam that I thought they needed something fun for just them.
By 11:00 Rod called me on my cell and I was at my parent’s house and both my mom and dad were home. Rod told me that there was good news and bad news. The good news was that they found the problem and that it could be fixed and would be fixed today. But the bad news was that Sam needed surgery today. His problem was called pyloric stenosis and was the enlargement of the muscle that regulated the stomach contents into the intestine. Apparently Sam’s case was really obvious on the ultrasound because it was so large. Doctor Dushman told Rod to go to Sunrise Hospital where he had called ahead to the pediatric surgeon on call to see if he could operate on Sam that afternoon/evening. The surgeon knew Dr. Dushman (they’d both been in practice here for a number of years and Dushman would consult with him on things.) His name was Dr. Reynes and he was supposedly one of the best pediatric surgeons in the valley. He did this surgery all the time and his own son had the condition.
I remember hearing Rod say Sam needed surgery and that Dushman had called ahead and that the hospital was expecting us. I sat down on the arm of my parent’s couch and repeated aloud, “Sam needs surgery.” We had all been waiting to hear from Rod regarding Sam and when my dad heard me say that aloud he immediately started making plans for my boys to stay with my mom and him to drive me to the hospital so that he and Rod could give Sam a blessing before the surgery. I think I was in shock a bit. I just sprung into action and told Rod to drive straight to the hospital and we would meet him there. I wanted him to get Sam to the hospital as soon as possible so we could get started on the long wait in the ER. I got a minute with Jack and Morgan to myself to explain to them what was happening. As soon as I said to them that Sam needed surgery I sort of lost it emotionally. I didn’t loose it completely but I found it difficult to tell them and keep my calmness. I didn’t want to scare them so I didn’t tell them too many details. I turned them over to my mom and my dad and I left for Sunrise hospital. That drive from my parent’s home to Sunrise Hospital has to be the longest drive ever. There is no easy way to get to that hospital. It is in the middle of town and not really near the freeway.
On the drive there I called Linda Lee. She answered and when I began to talk I tried hard to compose myself. Immediately she could hear something was wrong and offered to do anything. She was a great comfort to me. She is a person I know I could ask for help in an emergency. But this time I just needed to confirm with her what it was that Chris had and make sure it was the same thing Sam was heading into surgery for. It was the same thing and I thanked her for telling me Chris’ story earlier. It had never really left my mind. It scared me a little as I drove to the hospital but I also took comfort in knowing that Sam was not as far gone as Chris was. Sam was off but not that far off and the sooner we could get him operated on the better he would be. I felt like it was a blessing that Linda had been at my house just in time to see Sam vomit and that it was another blessing that she just randomly told me about Chris even though it was such a scary story. She told me that she had felt horrible after leaving that day that she had gone into the details of Chris’ story with me. She couldn’t understand why she had done that and felt awful for telling me. I think it was pure inspiration that I was told that story. I know she didn’t feel inspired—it just sort of fell out of her. If anything she regretted telling it to me and wondered why on earth she would have said it. But I really feel like hearing her story drove it home to me that I was not crazy and I needed to get to the bottom of Sam’s problem. I didn’t know how to do that until I felt so impressed to get Kristen’s doctor’s number that night. I think Linda was one of those people put in the right place at the right time and are able to be instruments in God’s hands to almost unknowingly speak words you need to hear at that time.
My dad and I met Rod in the ER where they were putting an IV into Sam’s little wrist. It was such a difficult thing to watch. It is not easy to work on such tiny bodies. He is also very strong because of his size and so it made for a difficult time getting the IV in and working. When we had a minute to ourselves after all was prepped my Dad administered to Sam and Rod gave Sam a blessing. My dad then went and got Rod and I some dinner and then went home. We knew it would be a wait until the surgeon could assemble a team to operate. We were not even totally sure it could be done that night based on unclear information coming to us from different nurses. So Rod and I held Sam. He had screamed for so long that he lost his voice. We were unable to feed him at all so that he could fast for surgery. It was something I just had to steel my nerves for---the screaming and losing his voice. It was so difficult and I thought of all the pioneer women who had nothing to feed their babies. I also thought of all the parents whose babies die even today in other countries or here because they are misdiagnosed or not diagnosed at all because of a lack of technology. I was so grateful to be sitting there awaiting surgery for Sam.
While we waited to go to the OR I called the Fox family whose son had been walking our dog for us while I was unable because of my c-section. They are at church with us and live in our neighborhood. I told them we were in the hospital for Sam to have surgery and asked if they could take care of the dog until we got home—whenever that would be. They said sure! It was a great relief that their son had become familiar with Chloe and could let himself in the house and she would know him in our absence. She was a rescue dog and is so afraid of being left again. With Robert I knew she would be as comfortable in our absence as possible.
About 5:00 pm on Friday, December 23rd we were taken to the OR. Sam was wheeled there on a gurney. It was like a movie. I ran the film in my head as we walked down the maze of convoluted hallways to the pediatric OR triage room. Sunrise Hospital was built over time and added onto so many times that on the first floor it is a maze of random hallways and rooms. There is no way I could have known where I was in the building. I felt like I was in the belly of the beast by the time we got to the pediatric OR department! Lori Fox texted me and asked me what room I was in and what hospital. I told her the hospital and that we were waiting in the pediatric OR dept to hand off Sam.
The surgeon came and found us and talked with us for a good long time. He was a calm individual and so informative. He was compassionate. He was everything I needed and had hoped for over those weeks prior. He assured us that Sam would be a different child after the procedure. He warned us that we would need to pace him back up to his normal feeding amount but that once back to his normal amount of feeding he would react very different than he had been acting. He would be happy and comfortable after eating and burp normally. He just reiterated that Sam would be so very different from what he had been experiencing with him. He also said that there would be no long-term effects of the surgery. I was so relieved. I just wanted him to hurry and take him and fix him fast so I could get him back and healed.
Handing Sam off to the nurse to take him to the operating room was not so easy. I kissed him goodbye quickly and forced myself to move away just as quickly and head to the waiting room. The nurse didn’t doddle and just to kiss him I practically had to stop her physically. She was not gonna let me sit and sob with a lengthy parting. She was off the minute she had Sam in her arms. In a way it was good. It just needed to be done. Rod and I just put our feet in motion in the opposite direction to the waiting room. We followed more confusing hallway to an unassuming doorway and went through to a room without windows that had 3 other doors emptying into it. It was empty. We were the only ones to enter and then as we walked toward chairs to sit down, in came Lori Fox, our neighbor friend from church. She came in with a big bag she said was an overnight-in-the-hospital survival bag. How she found us I will never know! Seriously! You’d have to understand how completely confusing that first floor of that hospital is to appreciate her showing up. And her timing was unbelievable. It was one of those stories from a church magazine! It was a complete blessing to us. I felt like she was another angel put in my path to help us through this stressful time.
Sam’s surgery was just under an hour. The surgeon came to meet us in the waiting room which was still empty (another blessing!) and tell us that Sam did great. His muscle was the largest he has seen. It was a good thing he was born with so much weight on him because he was able to sustain himself this long. We went back to see Sam and stayed with him in post-op. He had a scratchy cry. We had to stay there until they could get us a room upstairs for the night or two. We made plans that Rod would go home and put Jack and Morgan to bed and return with my toothbrush and pillow. I would wait with Sam and go up to our room when it was ready. By the time we got to the room I was so relieved. It was a big and clean and private room with a bench for sleeping along the wall. It would do. We were close to the nurses station so I could get them if I needed them and Sam was more restful there in a crib. We settled in for a long night of slowly increased feedings if he could keep everything down. Rod returned for a little bit and then ended up going home to sleep because there was no room for both of us to sleep. It made more sense for one of us to stay and one to go home and get some decent sleep.
All through the early part of the night Sam struggled to relax. He is a fighter! He is strong and I knew he was in pain. He was allowed Tylenol and a small dose of morphine if needed. By two in the morning he had kept his small feedings down and was still unable to fully fall asleep so we gave him a small shot of morphine in his IV and he immediately relaxed and fell sound asleep. It was my call to allow him that pain medication and I was hesitant but again I felt impressed that by the time I asked for it he needed it to help him sleep so his body could bounce back and heal as it needed for keeping his feedings successful. It must have helped because the rest of the night was easier and he kept his food in check all the next morning.
Rod returned the next morning and stayed all day. My other neighbor took my boys to play for a few hours before they went with my mom and dad to my sister’s house for Christmas Even lunch. Linda Lee and her husband went to pick up Santa’s gifts to Jack and Morgan that had been purchased and held until Christmas Eve for pick up. They put them in our small garage for Christmas morning. The boys would have Santa gifts because of Linda and Steve Lee. There were so many people who offered to help us. I mostly kept people aware of Sam status on Facebook. That site can be super helpful at times like that.
By the afternoon we were wondering if we could get discharge since Sam was doing well. He was ½ way to his full feedings. The nurse said she would get ahold of our surgeon and ask but not to hold hope because he never lets pyloric stenosis patients go home before getting to their full feeding amount. But we hoped anyway and felt like it wouldn’t hurt to ask. She came back after a bit of time and sounded shocked but told us that he said we could go if we just kept doing what we were doing and contact his office if there were a problem. So on Christmas Eve were were discharged and heading home around 3:00pm. What a blessing!!!!! Jack and Morgan would have us home on Christmas Eve and morning. We would be together as a family of five for Sam’s first Christmas. It was a huge blessing!
We arrived home and my parents came with Jack and Morgan. Darren and Nikki came over with their twins and we all crashed in the family room with the children watching movies. Sam slept soundly and ate well. Then we moved over to my parent’s home for hot chocolate and opening the traditional one Christmas present of p.j.s for the children and one gift of choice for the adults. Jack and Morgan showered and bathed at Nans and opened their new p.j.s to wear that night. Then they watched Polar Express. The little twins were put to bed and we adults with sleeping Sam were able to decompress. It was a very special Christmas Eve. We were so fortunate to have Sam home. I felt like I blinked and our lives were changed in a flash. It all happened so quickly for Sam after so many weeks of searching for answers. The fix came quickly and the blessing poured out thick. I am always in amazement of how God works in solving problems of his little ones. Answers have come in my life in similar fashion---trying things and trying different things to get the right answer or opportunity. With Sam I feel like that process has been similar however, with two times already regarding him I have felt what I can only describe as an almost audible voice speak a clear and pressing thought to my mind. It happened once before when I was driving and thinking of how to do IVF to get a child and it happened that late night just a week ago when I wondered what doctor would be able to help us find his problem and Kristen’s doctor came to my mind.
There are times when I believe God speaks to our minds. I know he is aware of Sam because He has spoken to me twice now regarding him though the first time I didn’t know Sam would be a certain result of IVF. He was just a possibility to me but very real I believe to God and His plan for both Sam and me.
There were so many wonderful things that happened these last few days. I just wanted to gush them all out of me so that I would not forget. I want Sam to know what happened to him and how guided it was. I want his brother’s to know what happened that was more special this Christmas than those Santa gifts they are so enjoying right now. There are many times in my life I have been glad to have a working spiritual relationship with my Heavenly Father. This has been unmistakably one of those times when I have prayed to him sincerely and often and He has guided me and others to the answers my little boy needed. This Christmas has been special to us for those very reasons Christ came to earth as a child so long ago. He taught us that God can direct us and we can stay close to His guidance through constant prayer and obedience. There is little more as a mother that matters to me more than being able to receive the guidance I need to help my children.
I saw Sam smile over and over today and I traced my finger around his incision and said a silent prayer of thanks----again.
photos: sam before diagnosis at a happy moment / i felt just like he looks--with clenched fists frustrated trying to get the proper answers we needed to help him
sam at sunrise hospital getting iv in his little fist was a struggle. he was such a fighter! wheeling him to the OR and his room post op where he and i slept a little and worked on feedings through the night to christmas eve afternoon.
waking up the morning after to the sunrise. out our window we had a direct view of life-flight helicopter. i heard it come and go all night long. in the morning i saw it decend and land then paramedics rushed someone from it into the top of the hospital and i was grateful that was not me and my child. it helped put things into a perspective for me. there always seems to be a thing heavier to handle when i look outside myself.
sam at home on christmas eve sleeping. post surgery 24 hours.
I found your blog from your sister's blog and I wanted to comment on your recent post. Your story brought back memories for me as I went through the same thing with my son, Jesse, 29 years ago next month. I can remember the vomiting after each bottle and my son would projectile vomit - oh what a mess. I dreaded each feeding, and I knew something was wrong. When I finally called my Dr. who by the way was, Dr. Dushman, he had me bring my son immedidately into the office to be seen and then I was sent directly to Sunrise Hospital for surgery. Jesse came through the surgery fine and is now a 6'3" tall father of 3 who is a Physical Therapist. It sure doesn't seem like 29 years ago - and wow Dr. Dushman is still working. He was a great Dr. for my boys.
Posted by: Robin Jablon | January 02, 2012 at 08:30 PM