(When we began Joel’s website last year, Joel was already at Children’s Hospital in Denver. I never wrote in detail about the weeks that led up to his helicopter flight to Children’s Hospital. I remember those weeks pretty clearly still, and wanted to write about them now, a year later while the details are still clear to me. It was a very tough two weeks that ushered us into an unimaginably difficult year.)
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The first time Joel vomited it was unusual. He hadn’t seemed sick, but then he threw up forcefully and from the looks of it, it must have been everything in his stomach. I had never seen a one-year-old throw up like that. I was grateful he was in the kitchen at my friend’s house, since this would have been a giant mess on carpet, but I was definitely wishing I had not picked him up just in time to be covered myself. The youth group leaders meeting in the other room paused and looked over at us, and I quickly explained that my sons and I would be leaving early, although I’m sure the visual was explanation enough.
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Joel continued to throw up after he ate for three days. He was happy enough to eat but was vomiting a few times each day. I called the pediatrician on Friday, because I wanted to check on Joel before the weekend, and the nurse told me that vomiting with stomach bugs was normal for 3-5 days and to call back if it continued two more days. At first it seemed a little better, he threw up just once Saturday night, so perhaps it was running its course, then he threw up again Sunday night. Monday the vomiting was worse again, so on Tuesday, Joel’s first birthday, I called early in the morning, and took Joel into the doctor’s office. At this point, we had removed formula from his diet all together, wondering if he had developed an intolerance, and I was trying to give him less food at a time. We were seen by a physician’s assistant who told us that until we saw some blood work it would be hard to tell what was happening, so she sent us to have Joel’s blood drawn at the hospital, mostly worried about dehydration from the extended vomiting. Caleb, Isaac and I went to the hospital, and the boys were pretty patient as we waited in the waiting room and then were escorted back to the small exam table. The phlebotomist on duty called in reinforcements, one nurse to entertain Caleb and Isaac and an IV team specialist to help with Joel. The “entertainment nurse” gave Caleb and Isaac graham crackers, juice boxes and stickers. The phlebotomist and I did our best to hold Joel still as the specialist did her best to draw Joel’s blood. She was trying very hard, but after close to twenty minutes nothing had worked. The specialist felt terrible, and the phlebotomist and I both began to feel a little desperate, and I wondered what would be the next step if they just couldn’t get his blood drawn this way. “Ok, the phlebotomist said, exhaling deeply as if to reset herself, “Let’s give this one more try.” I prayed. If memory serves she also said something about praying, but since I don’t remember clearly I won’t put words in her mouth. I held Joel down one more time, wishing Ryan had been with me because he was much better at this sort of thing. The specialist was determined. It worked. They were finally able to get Joel’s blood drawn, and we were all quite relieved. Caleb and Isaac had been so entertained by the other nurse and all of their goodies that they hardly noticed how long we had been there.
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We drove home, and I was surprised later when I received a voicemail from our PA asking us if we had indeed gone to get the labs done, because she had ordered them stat and nothing had come in. I looked at the time, and seeing that it was after 5:00, I decided I would wait until the next morning to look into everything, afterall Joel had a very big birthday party that night, and it seemed like if I kept feeding Joel very small amounts of food, I could keep him from vomiting.
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As we prepared for Joel’s party both my mom and my friend were a little frustrated with me for not doing more pushing about the lab results. Everyone around us could tell that something was pretty wrong with Joel and I remember thinking, “I want Joel to have this first birthday party, and if something is really wrong, I would actually prefer it wait until the morning so we can enjoy tonight.” The party was fun, but probably not for Joel. Everyone could tell he wasn’t feeling well, as he sat still in our arms the whole time, with his head tilted to the side. We had first noticed this head tilt in January and I had mentioned it to the PA who said it was unrelated, still it seemed to get worse when he was tired like this. I was so relieved when we finished the party without Joel vomiting. We got some cute pictures, even if Joel hadn’t seemed particularly interested in the cake or the presents, and was even less interested in his adorable sock monkey costume and two five-foot-tall stuffed sock monkey dolls. That night, we announced to our friends and family that I was pregnant with our fourth child. We had only discovered this a couple days before, but we thought it would be a nice occasion to share the news. When we got home that night from the party we fed Joel and gave him some water and he perked right up and was giggling and kicking his legs, acting adorable and happy, like I wish he had been for his party. We were optimistic that the worst was past us.
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The next morning I called first thing about the lab results and the PA said she didn’t see them but would look into it and call us back. I waited, for two hours, and called again. Our PA was busy but they left a message for her to call us. I waited, and called back a third time, still unable to get a hold of anyone who could tell us anything, I hung up the phone, began to cry, and then called Ryan. Through sobs I told how unreasonable I thought it was that no one could be bothered to find the lab results and tell me what was going on; I knew it was a big practice but there couldn’t be that many children whose parents were awaiting test results, and after all it had been ordered stat the day before. Ryan called them and was more than a little pushy. I was both embarrassed and relieved, and within minutes I was on the phone with our PA.
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“Well first, how is Joel doing today?” she asked. “Actually, he hasn’t thrown up since yesterday morning. It seems like if I limit how much food I give him at a time he can keep things down.” “Oh, uhh, that’s great. I’m sorry it took me so long to call you today. Joel’s lab results were right in a gray area so I was trying to get opinions from several of the senior doctors here. We had actually decided to send you to the hospital for fluids and some more tests, but if he’s doing better and keeping food down, I think we could hold off, if you’re comfortable with that.” “Sure.” I said, relieved both that we would not have to try to draw more blood from Joel and that we could avoid a trip to the hospital. I was starting to think that it really was just a stomach bug and that we were getting to the end of it. “Ok, well if the vomiting starts again you’ll need to call and come in and we’ll be sure to get more labs done.”
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Joel did well the rest of that day and I was able to take him with me to youth group where I was teaching that night. Just as I finished up teaching the junior high youth group, I began to miscarry the pregnancy we had just announced the day before. This was of course very difficult, we had miscarried one other time, but something in me was not quite as upset as I had been the first time this had happened. Although things seemed a little better with Joel, the thought occurred to me that maybe what was making Joel vomit was much more serious than I thought, and maybe the pregnancy would have been too overwhelming if this really was serious. It was a fleeting thought, and Ryan and I were still very sad, and very much wishing we had not just made a big announcement. We had only known we were pregnant for a few days but it was still devastating. The next day, Thursday, Joel continued to keep his food down, because we were careful to never give him very much at a time.
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By Friday Joel was eating table foods at lunch and seemed to be doing really well. My mom babysat the children for us that night, and when we came home we discovered that Joel had begun vomiting again. My mom also noticed that Joel was exclusively using his left hand to do things, reaching awkwardly across his body to reach things that would have been much easier to reach with his right hand.
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Saturday morning my mom went with me to a walk-in appointment at our pediatrician’s office. She had been very worried about Joel, to the point that she was often losing sleep at night, and I knew that she would be good at asking very direct questions. We explained everything to this pediatrician including the head tilt, which he told us was unrelated. He calmly and only slightly dismissively answered my mom’s questions and mine, and told us that nothing on the previous lab report actually justified getting more labs done. He was reasonably sure that this was just reflux, and prescribed medicine, telling us it would take up to 3 days to work, and to call back on Tuesday or Wednesday if things weren’t significantly better by then. The reflux diagnosis didn’t seem quite right, but I think my mom and I were both really glad to have something to try. At this point, any answer was a relief because it had been eleven days since Joel had first thrown up.
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We gave Joel the reflux medicine but he seemed to only get worse until eventually he was vomiting up everything we gave him and had no energy to play. He refused to be set on the ground so I spent my days sitting in a chair holding him, the house became a chaotic mess, as I was not able to get up and clean things during the day (something I had worked hard to create a routine of because I have never been very good at housework to begin with.) The worse Joel seemed, the more concerned I became. I remember being so upset and feeling like I couldn’t do anything but keep giving him his medicine and waiting out the three days. By Monday, even though it had only been two days on the reflux medicine I called the nurses at our pediatrician’s office, and while I waited for a return call, I wrote this in an email to my friends,
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“Joel is throwing up several times a day still.  I feel like he’s starving, but for the last day or day and a half he pushes away any liquids I offer him and almost all solids I give him.  Basically right now as long as Joel doesn’t see any food he lays limp on my chest, but if he sees food, he gets very frantic and reaches out for it, then when I give it to him, he takes it and throws it as hard as he can then cries and cries while throwing his head against my chest over and over again, so needless to say, I’m about to lose it.  I feel like my kid is starving to death. When he does act hungry, Ryan has me only feed him really small amounts to try to keep him from throwing up, but then he cries and cries because he’s still hungry and I won’t give him more food, plus at this point, it is about once a day that he acts genuinely hungry, so to not feed him anywhere even close to enough food when he is so hungry is heartbreaking. They told me the medicine will take up to three days to really kick in, so I’m trying to wait it out, although I have already called and asked that a doctor call me back today, because half the time he spits out or throws up his medicine, so I question how effective it will be. Anyway, that’s the status update.  So far things are getting worse not better, and at this point I would prefer he just be on an iv so I know he’s getting food, because I feel like I’m being asked to be ok with slowly starving my baby.  I am constantly on the verge of tears right now, and I keep trying to remind myself that there could be so many much more terrible things to have my kids go through, but no matter how many times I remind myself of this it just feels like this week has been too much.”
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(I can never forget the feeling of desperation I had knowing that my baby was hungry and refused to eat because he was so tired of vomiting. I have never felt anything so difficult and the emotions attached to it stayed with me for many long months as we tried to give Joel everything he needed through his feeding tube after the surgery for four months and prayed desperately that he would regain the ability to swallow liquids so we could give him bottles and take out the NG tube. The feeling returned again when the chemotherapy made him nauseous in those early months, every time he would vomit it was like I was sitting in that chair again in my living room, devastated for my hungry child who was getting weaker and smaller by the day.)
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When the nurse did call back, she said I should wait another day or two for the reflux medicine to work. She asked me if Joel was still having wet diapers, and he was, so she reassured me that he could not be dehydrated if he was still urinating. She told me to call back on Wednesday if he still was still vomiting. It felt impossible to wait out two more days, but every time I talked to the doctors or nurses they told me to give it time. I waffled between thinking I was unreasonable for calling the doctors so often, and thinking the doctors were unreasonable for not taking this more seriously.
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I wrote my friends an email later that day, almost exuberant that Joel had kept down a half container of carrot baby food.
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As much as I tried to wait until Wednesday before calling again, Ryan and I were both very concerned by Tuesday night. Joel just seemed different, things seemed worse, and for the first time we felt nervous about putting him to bed in his room where we couldn’t see him all night. We decided to call again. This is my email to my friends late that night.
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“So, basically all day yesterday, Joel kept down food as long as we kept it to 1/2 container of baby food or less at a time, but he threw up when I gave him more than that.  He had less than three ounces of water all day long, but vomited up one ounce just before bed, when we had forced him to drink it.  So we called the after hours nurse (a triage nurse at children’s hospital) who seemed sort of shocked about the little amount of water he’d had the past two days, and who told us she would have our doctor call us, but to remember that no matter what the doctor told us, he is our kid, and we can take him to the hospital if we want to.  The doctor called and told me he would be fine until the morning and that they’d rather see him in the office than in the emergency room.  So basically, we were talked down from taking him to the hospital for an iv.  So, now I’m going in first thing in the morning, and they are going to repeat his labs most likely and see if he needs fluids etc.  I’m just a little freaked out about my baby who is withering away before my eyes, and the doctors keep telling me that he’s fine and just to wait a little while longer.  Right now he’s dry heaving upstairs because he woke up crying and we tried to get him to drink some water and that upset him and made him start vomiting but he has nothing left to vomit.  Sorry, to always write all these details to you guys but I just keep starting to feel like I’m losing it and I have to tell someone, and as I write that it occurs to me that I should probably just be praying, anytime I have that unspeakable urge to just get something out, it usually means I should be praying about it, so that’s what I’ll do now.
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Goodnight/Goodmorning,
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Amy”
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The next morning, Wednesday, I called and got Joel an appointment at our pediatrician’s office, at this point my mom and two of my good friends had basically insisted that I take Joel to the hospital. So, I was resolved that no matter what happened at the doctor’s appointment I would take Joel to the hospital after. I could not go through another night worrying at home like Ryan and I both had the night before. My plan was to go to the appointment, and basically tell them, “We want to take him to the hospital.” (It had now been 15 days since Joel had first vomited.) The earliest appointment time available was 12:50pm. It was agony waiting that long because Joel seemed even worse than he had been the night before. He kept falling asleep, and two different times just stared off into space completely blank in a way that was nerve wracking. I finally decided to get everything ready for a hospital stay and load the boys in the van and just go to the doctor’s appointment an hour early, that way if anything disturbing happened with Joel I would already be right there and they would have to help me.
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I was so glad when the pediatrician suggested we take Joel to the hospital. I was relieved not to have to insist, and was just happy to finally have someone seem to understand how serious this had seemed to us for so long.
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A year ago today we took Joel to our local hospital, we checked in and they began a series of tests after taking over an hour to try to put an iv in a baby that was still very difficult for even the experts to find veins on. Once everything was settled and Joel was on fluids Ryan and I were able to relax a little, the nervousness finally abating because we knew Joel was being taken care of. I pulled up my facebook page and at the very top of the screen was this status update from a comedian friend. “This morning during my devo’s, one theme kept jumping out, and it continues as I’ve gotten my day started: GOD HEALS. I felt compelled to post it, so I guess I’m supposed to encourage someone or pray for cats who need it. Give me a shout.”
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I read that, and felt certain it was for me, and felt in my spirit that whatever was happening with Joel it was probably much bigger than I had expected. I remembered the thought I had after miscarrying the pregnancy and again just felt that things happening now could be pretty urgent. I remember thinking “God could heal Joel right now, before we ever find out what the problem is, but I think I’d rather know exactly what it is Joel is being healed from.”
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I posted this comment under my friend’s status update. “You are a prophetic voice for this heartbroken mommy. I am in the hospital holding Joel, our one-year-old with an iv in his arm awaiting test results and trying to stir up my faith which feels a little trampled on right now.”
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Later that afternoon, the doctor ordered an upper G.I. study for Joel. Basically, Joel was to drink a bottle of barium (a chalk like substance that shows up well on x-rays) then they would do a series of x-rays as the barium made its what through his system so they could tell if there was anything anatomically preventing him from digesting his food properly. I could not imagine Joel being able to have this test done, since the night before even offering Joel water had set him into hysterics and induced vomiting. How would Joel drink several ounces of barium (much more disgusting than water) and then keep it down without vomiting it immediately? Ryan and I were very doubtful, but knew the test was important, so we sent out a prayer request in the form of a text message to everyone we could think of and we prayed.
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When they gave Joel the bottle of barium he drank over six ounces. (The most water he’d had at a time in a week had been around 3 ounces.) Joel was able to have the test done. In fact, Joel did not vomit until two hours later when I gave him some apple juice to drink. For us, based on the past fifteen days, this was miraculous. The test came back fine, and the doctor told us the next logical test was an MRI to make sure his vomiting was not neurological. The doctor did not told us what they were looking for specifically, but reassured us that it was mostly precautionary to rule out anything major. The MRI would take place the next morning, and we spent the rest of the day with Caleb and Isaac and various friends and family who stopped by. The mood was pretty relaxed and we even joked with our nurses and doctor quite a bit. Caleb and Isaac stayed the night with their grandma and Ryan and I slept at the hospital with Joel, one-year-ago today.

Comments

There are 2 comments for this post.

  1. Erica on January 21, 2011 8:40 am

    I remember those emails so vividly. Ugh. It’s shocking how hard it was to read all this and remember your desperation along with our own frantic worrying. And it all feels like so much longer than a year ago. So, so much longer. Love you, Greens.

  2. Jeanette on January 24, 2011 7:51 pm

    FAITH my child is Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.

    Children have faith, and are often used as examples of faith. LUKE 18:17 “Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.”

    Children believe. We may not understand how it is that God works faith in children, except that we know that God’s Word has great power, and that faith cometh by hearing and hearing by the Word of God, so children, even before birth, have opportunity to hear the Word of God, and for the Holy Spirit to work faith in their hearts. Please read the Healing Scriptures to Joel. Prayers going up on Joel’s behalf. GOD bless you, you are truely a wonderful Mommy.

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