I will never forget the day my husband called me from the hospital. I had gone home for a few days to spend some time with Mason. I was at his football game when the phone rang. Every time someone called me from the hospital I would get a pit in my stomach. I can still feel it when I think back to that day over 2 years ago. I could tell by the sound of Trevor's voice it wasn't good. He told me the doctor who had done Keean's PEG surgery came to talk to him about some of the tests they were running on Keean's GI tract. For a long time I honestly thought they had ruled out any of the serious causes of Keean not being able to absorb nutrients and being so sick (we had been there for 5 weeks so I thought we ruled out everything bad), so the news I received from my husband that day hit me hard. The doctor told Trevor that he believed Keean had one of 3 things going on. 1. We were just dealing with severe allergies and reflux, 2. Micro villus inclusion or 3. Auto Immune Enteropathy.
The last 2 words probably don't mean much to those of you who have never had to know what they mean. And if you haven't, be very thankful! These are things that I had NO CLUE even existed until the day my husband called me. I had never in my life heard of these words. They were foreign to me and if I had it my way, I would have kept it that way. I didn't want to learn about all these things, but here I was.......sitting on the sidelines at my sons football game learning things I still don't want to know about. I immediately started bawling and I didn't even know why. I hadn't researched what they meant yet. I just remember asking Trevor, "What does this mean?" And Trevor responding, "I don't know, but it doesn't sound good."
My plan to spend a few days with Mason were quickly put on hold and I was on my way back to the cities as soon as his game was over. I had to get back to the hospital and I had to learn more. One of my favorite GI doctors told me he was going to quit telling me what anything was called because he didn't want me to do my own research. He would say, "Dr. Google is not your friend." He was so very right, but I couldn't help myself. I wanted to know everything. I wanted to know what we were possibly dealing with and I wanted to know NOW. We had been waiting for approximately 3 months to figure out what was going on with my baby and the fact that they were testing him for things I had never heard of, I had to learn more. It's funny how for so long I prayed and prayed for answers, for something....anything...to give me answers so we could help him. I wanted to know what it was called and I wanted to know how to fix it. BUT when I heard these things, I didn't want to know anymore. I wanted to continue our journey having no clue what was wrong with the hopes that he could eventually grow out of it. I hoped and prayed with everything I had in me that it was as simple as allergies. This was still an option. And I was trying really really really hard to stay positive, but my mind couldn't help but travel to the dark places that could be our reality.
Microvillus Inclusion (for those of you who prefer not to visit Dr. Google) in a very non-scientific kind of way means your GI tract does not work at all. Your intestines don't and can't absorb nutrients on their own and requires TPN (IV nutrition) for life. Like I mentioned before TPN is very hard on the liver. The life expectancy of this when I researched 2 years ago was approximately 3 years old.
Auto immune enteropathy is where your immune system thinks your GI tract is foreign and attacks it which causes it to not function properly. This is the lesser of the 2 evils, but is a very challenging disease. Children who have this spend a lot of time missing school and in the hospital because, in order to keep it under control, they use immune suppressants. Because of this, your immune system is down and makes a child more susceptible to getting sick......really sick. These kids don't grow well and depending on the severity of it some may also be dependent on TPN (IV nutrition). Auto Immune Enteropathy is very rare....or appears rare...maybe because the testing for it is complicated. It's a blood test, but can come back a false negative, a false positive or can be inconclusive. It's prognosis is dependent on how severe the presentation of the disease.
I hope this all makes sense. I'm trying to explain it in a way that was easier for me to understand. IT was a lot to wrap my head around. All I really heard and read was the prognosis of these diseases, the possible TPN dependency and how sick some of the kids were that already had a diagnosis. I remember laying in Keean's hospital room sick to my stomach and crying .....a lot. I felt alone and confused and lost and scared. I didn't want to talk to anyone because I didn't know what to say. I just wanted to hold my baby and pray and hope that these tests came back negative. Call me a pessimist, but I couldn't escape the dark place my mind would wander to. I had only had Keean in my life for 3 short months and I couldn't imagine life without him.
I remember when we told the kids about the tests we were waiting for. They told us the tests would take 5-7 days, so we thought we should fill the kids in on some of the things that we were waiting for so they could ask questions and not be so confused about my random emotional break downs. I remember Trevor made reservations at a local water park about 30 minutes from Children's Hospital. We were going to get away from the hospital and spend some time with the big kids. I also remember going up to our hotel room and throwing myself on the bed and having a complete break down. I cried so hard I thought I was going to quit breathing. I remember my husband holding me and telling me that we would get through whatever we had thrown at us. That there was a purpose and that we still had the ability to hope. I remember him telling me that we would have to make the best out of whatever was thrown at us. I remember wishing I could be as positive as him....as hopeful....as calm and as strong. I couldn't stop crying. I couldn't get the sick feeling out of my stomach and I couldn't stop thinking about the "what-ifs". I had so many conflicting thoughts going on. I wanted to remain strong and positive, I wanted to put on a happy face and put on a show for the big kids pretending that everything was fine, but I couldn't. No matter how hard I tried, I just couldn't do anything. I didn't want to be anywhere but with my baby and I didn't want to talk to anyone until those test results came back. I was traveling to a dark place. It was almost like I didn't want to be happy until I knew everything was going to be ok. I can't explain how hard it is to have these out of control feelings.....I know I could have handled things differently, but in the moment there was no other way for me to cope. It was hard for me to talk to people who had no idea what it felt like to be waiting on such life changing news. I wanted to find people who understood. It wasn't that I didn't appreciate everyone around me reaching out, sending notes, messages, coming to visit, etc. it was that I needed to know I wasn't alone. I wanted to find people out there that had kids going through similar things. (Not that I want other people to go through what I was, but I knew there had to be). I started researching things online. I connected with other parents who had children with both Microvillus Inclusion and Auto Immune Enteropathy. I actually was able to connect with a mom who was also waiting the results of her daughters AIE (Auto Immune Enteropathy) test. (apparently her daughter and Keean's tests were batched together and we got our results at the same time). I started to feel a little better knowing that I had people to talk to, people who understood where I was, who could tell me what to expect and to tell me more of the truths of what we could be dealing with versus Dr. Google who chooses to point out all the bad stuff. It was nice to connect with people who I could vent to and who I knew just "got it". I love my family and friends with all my heart, but at this point in my life I needed those people. I needed these complete strangers to help me through one of the toughest times of my life.
Along with these perfect strangers, I relied on the nurses who worked with Keean to keep my emotions in check. I remember one of my favorite nurses up there telling me not to worry. She was so determined that Keean wasn't a sick baby. She said she knew it sounded funny, because she knows he is sick, but she said he isn't sick like some of the other babies she sees. She said she would be shocked if he had something serious, and really thought he had something that he would get over and grow out of. Although, she probably shouldn't have gotten my hopes up, she sure made me feel better. Her words allowed me to sleep better at night. She had been a nurse longer than I had been alive so I trusted her. There was something about her that just made me feel better. I'm pretty sure some of the nurses who work up there had some kind of major in psychology too. They should have been paid extra to be my therapist. I promise there were days I felt like I belonged in the mental health unit. There were days I had no idea what to do with myself and the nurses helped me through those.....and so did those complete strangers I have yet to meet.
They told us the test results would take 5-7 days. Well.....they forgot to mention that the Microvillus Inclusion test took 5-7 days.....the AIE test took 8-10 weeks. That's a huge difference...especially when you are waiting for something so important. I remember wanting to fly to Philadelphia and wait patiently next to the lab techs as they waited for the results to come back. I think I may have threatened it a few times.
Thankfully the lesser of the 2 evils was the one that took longer.....we got the results of the Microvillus Inclusion test on September 14. This is the one that if it was positive, Keean would most likely need a intestinal transplant. This was the one with the 3 year life expectancy. I remember our favorite Hospitalist at Children's stopped in to say hello. She actually wasn't even working with Keean that week, but saw the results and came to talk to us. No one had actually told us the news until she stopped in. Apparently, each doctor assumed someone else told us....so she broke the news to us that his test came back NEGATIVE!!!! I remember sitting next to Trevor on the couch in our room, our favorite hospitalist was sitting on the rocking chair shocked that no one had said anything to us yet and we both started tearing up. Trevor and I hugged each other and then the hospitalist. I'm pretty sure we hugged everyone that came into our room. We were so extremely happy, we had to share the love with everyone involved in Keean's care. Yes, there was still a test result waiting out there, but the fact that this one came back negative made it easier to breathe.
Monday, October 28, 2013
The PEG tube
September 6, 2011
We sent Mr. Keean down for surgery the morning of September 6 to have his PEG tube placed. This is the tube I was talking about earlier that would go directly into his stomach in stead of using the tube that went up his nose and down his throat. This was a more permanent option and I felt that it was in Keean's best interest to have it. PEG stands for
Percutaneous endoscopic gastrostomy and the actual wikpedia definition is as follows (if you aren't interested you can skip the bold and continue reading the story):
Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation). This provides enteral nutrition (making use of the natural digestion process of the gastrointestinal tract) despite bypassing the mouth; enteral nutrition is generally preferable to parenteral nutrition (which is only used when the GI tract must be avoided). The PEG procedure is an alternative to open surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used. PEG tubes may also be extended into the small intestine by passing a jejunal extension tube (PEG-J tube) through the PEG tube and into the jejunum via the pylorus.[1]
PEG administration of enteral feeds is the most commonly used method of nutritional support for patients in the community. Many stroke patients, for example, are at risk of aspiration pneumonia due to poor control over the swallowing muscles; some will benefit from a PEG performed to maintain nutrition. PEGs may also be inserted to decompress the stomach in cases of gastric volvulus.[2]
Well surgery went quick and really well. Keean tolerated the whole process like the rock star he is and only needed morphine at 5:30pm and once in the middle of the night, which isn't always typical of kids who get these tubes placed. It was so nice to see Keean's whole face again versus the NJ tube that was taped to his face. The only thing he wasn't excited about was being snuggled after the surgery, which I don't blame him. I wouldn't want to snuggle after a surgery like that either. This was an exciting surgery for us because we knew Keean needed it. We also knew that it would help him stop puking so much without the other tube tickling his throat all the time. We were also glad that we were already in the hospital so we were settled and had our nice big room to sit back and learn all about Keean's new tube. We could have the doctors and nurses support throughout the learning process and that made me feel so much more comfortable. The PEG tube is actually what they put in first and has to be in for 6 weeks before they put in a tube called the Mic-Key button (which I'll talk more about after I get to that part of our journey). Below is a picture of Keean right after his PEG placement. The yellow tube is taped down so the tube doesn't move around. Because they already had Keean under for the PEG placement, they decided to take more biopsies of his intestines to run more in depth tests. And this, my friends, is when things got a little interesting........
We sent Mr. Keean down for surgery the morning of September 6 to have his PEG tube placed. This is the tube I was talking about earlier that would go directly into his stomach in stead of using the tube that went up his nose and down his throat. This was a more permanent option and I felt that it was in Keean's best interest to have it. PEG stands for
Percutaneous endoscopic gastrostomy and the actual wikpedia definition is as follows (if you aren't interested you can skip the bold and continue reading the story):
Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation). This provides enteral nutrition (making use of the natural digestion process of the gastrointestinal tract) despite bypassing the mouth; enteral nutrition is generally preferable to parenteral nutrition (which is only used when the GI tract must be avoided). The PEG procedure is an alternative to open surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used. PEG tubes may also be extended into the small intestine by passing a jejunal extension tube (PEG-J tube) through the PEG tube and into the jejunum via the pylorus.[1]
PEG administration of enteral feeds is the most commonly used method of nutritional support for patients in the community. Many stroke patients, for example, are at risk of aspiration pneumonia due to poor control over the swallowing muscles; some will benefit from a PEG performed to maintain nutrition. PEGs may also be inserted to decompress the stomach in cases of gastric volvulus.[2]
Well surgery went quick and really well. Keean tolerated the whole process like the rock star he is and only needed morphine at 5:30pm and once in the middle of the night, which isn't always typical of kids who get these tubes placed. It was so nice to see Keean's whole face again versus the NJ tube that was taped to his face. The only thing he wasn't excited about was being snuggled after the surgery, which I don't blame him. I wouldn't want to snuggle after a surgery like that either. This was an exciting surgery for us because we knew Keean needed it. We also knew that it would help him stop puking so much without the other tube tickling his throat all the time. We were also glad that we were already in the hospital so we were settled and had our nice big room to sit back and learn all about Keean's new tube. We could have the doctors and nurses support throughout the learning process and that made me feel so much more comfortable. The PEG tube is actually what they put in first and has to be in for 6 weeks before they put in a tube called the Mic-Key button (which I'll talk more about after I get to that part of our journey). Below is a picture of Keean right after his PEG placement. The yellow tube is taped down so the tube doesn't move around. Because they already had Keean under for the PEG placement, they decided to take more biopsies of his intestines to run more in depth tests. And this, my friends, is when things got a little interesting........
Tuesday, October 22, 2013
Weaning off the TPN and talk of a PEG tube
September 1, 2011
This was the day that I had a conversation with the doctor that apparently not many moms have. I decided that Keean should get a more permanent feeding tube placed. This would mean Keean would have a hole put in his stomach and a tube going directly into his stomach instead of up his nose and down his throat. Keean threw up a lot with the tube in his throat all the time. I don't blame him. I would gag and throw up too if something was continuously tickling my throat. So, when I brought this up with the nurse she was a little surprised. She said she has never had a mom come to her and request one before (and she had been a nurse for longer than I had been alive). She said moms are typically hesitant and scared.
Well. I'm not going to lie. I was a little nervous, but I had nothing to be scared about. I was actually excited. The only thing I was scared for was the procedure itself. I hate when they put him under. I knew that Keean was going to need a feeding tube for a longer period of time than a few weeks. I knew that the one he had down his throat wasn't working well at all and I knew that it was in his best interest to get one. I wanted to have it done while we were still there so we could learn how to use it and adjust to life with a tubie (this is what we call our kids with feeding tubes)! Having a PEG tube placed meant they wanted to keep Keean on his TPN (IV nutrition) line in longer because after you have this procedure done, you can't use the tube for 24 hours. They were in the process of weaning Keean off the TPN which they continued to do, but kept the line there so when he went with no food, he could continue to get calories. The doctor was excited that we were so open to doing all of this. I was too. They said that it would most likely mean that home was in our near future if everything went well. At this point, Keean was completely off TPN and was tolerating full feeds through his tube. This was more than exciting for us. He hadn't tolerated full feeds since we were admitted. He was gaining weight without the TPN and strictly by formula! This was actually more than exciting. This was HUGE! We were finally able to have a little hope again. PEG tube placement surgery was scheduled for 1030am on September 6, 2011.
This was the day that I had a conversation with the doctor that apparently not many moms have. I decided that Keean should get a more permanent feeding tube placed. This would mean Keean would have a hole put in his stomach and a tube going directly into his stomach instead of up his nose and down his throat. Keean threw up a lot with the tube in his throat all the time. I don't blame him. I would gag and throw up too if something was continuously tickling my throat. So, when I brought this up with the nurse she was a little surprised. She said she has never had a mom come to her and request one before (and she had been a nurse for longer than I had been alive). She said moms are typically hesitant and scared.
Well. I'm not going to lie. I was a little nervous, but I had nothing to be scared about. I was actually excited. The only thing I was scared for was the procedure itself. I hate when they put him under. I knew that Keean was going to need a feeding tube for a longer period of time than a few weeks. I knew that the one he had down his throat wasn't working well at all and I knew that it was in his best interest to get one. I wanted to have it done while we were still there so we could learn how to use it and adjust to life with a tubie (this is what we call our kids with feeding tubes)! Having a PEG tube placed meant they wanted to keep Keean on his TPN (IV nutrition) line in longer because after you have this procedure done, you can't use the tube for 24 hours. They were in the process of weaning Keean off the TPN which they continued to do, but kept the line there so when he went with no food, he could continue to get calories. The doctor was excited that we were so open to doing all of this. I was too. They said that it would most likely mean that home was in our near future if everything went well. At this point, Keean was completely off TPN and was tolerating full feeds through his tube. This was more than exciting for us. He hadn't tolerated full feeds since we were admitted. He was gaining weight without the TPN and strictly by formula! This was actually more than exciting. This was HUGE! We were finally able to have a little hope again. PEG tube placement surgery was scheduled for 1030am on September 6, 2011.
Gaining a little weight......
August 24, 2011
Keean started to gain weight well after getting the IV nutrition pumping in his body. They continued to feed him formula through his NJ tube (which is the tube that goes up his nose and has a tube that goes into his stomach and one that goes directly into his intestines). Keean had gained 6.5 lbs in 4 days from the IV nutrition and was starting to look so much better. He was still obviously tiny for his age, but not looking so malnourished. Praise the Lord.
The questions at this point were; How damaged are his intestines, how long will it take for them to heal, and what / how much formula can he handle?
Our plan at this point was to watch his weight gain and let him sit on the IV nutrition (TPN) for 4-5 days.
They wanted to get him tolerating sugar in his formula again which was proving to be a more difficult task than one would think. Keean was supposed to get to a sugar of 6% and as soon as we reached 5% he started throwing up and getting uncomfortable. He was bloated, uncomfortable, cranky and was back to having watery mucus in his stool :( It got to be frustrating. We were so encouraged after his weight gain with the TPN, it was hard to see him start going backwards. This backwards stuff went on for a bit and by August 27, Keean was back to gaining weight a little better. He was almost 3 months old and was 9lbs 6oz. He had officially gained a pound since we were admitted to Children's Hospital 3 weeks before. Keean was not bottling much at this point. He seemed to throw up more frequently when he did bottle, but they encouraged us to keep on trying.
There was some talk about sending us to a hospital closer to home, but the GI doctor said that they wouldn't consider it until he was stable and on a formula that he was tolerating and they wanted to get him off of TPN if possible before sending him home. The TPN lines have a greater risk for infection than his feeding tube and it is a lot more dangerous to work with at home.
I was ok with everything going on because they were trying things, changing things and working on getting Keean stable enough to be discharged.
I was just happy that Keean was gaining weight. It's crazy how it was never something I paid close attention to with my oldest son. He was always big for his age. He graced this world at 9lbs 13oz so having a tiny baby and watching those numbers was new. Every morning they would wheel the scale in the room and every morning we would wait ever so impatiently to see what numbers were there. Did he gain weight? Stay the same? Or lose? I was honestly fine as long as they didn't go down. And at this point, he was heading in the right direction.
Keean started to gain weight well after getting the IV nutrition pumping in his body. They continued to feed him formula through his NJ tube (which is the tube that goes up his nose and has a tube that goes into his stomach and one that goes directly into his intestines). Keean had gained 6.5 lbs in 4 days from the IV nutrition and was starting to look so much better. He was still obviously tiny for his age, but not looking so malnourished. Praise the Lord.
The questions at this point were; How damaged are his intestines, how long will it take for them to heal, and what / how much formula can he handle?
Our plan at this point was to watch his weight gain and let him sit on the IV nutrition (TPN) for 4-5 days.
They wanted to get him tolerating sugar in his formula again which was proving to be a more difficult task than one would think. Keean was supposed to get to a sugar of 6% and as soon as we reached 5% he started throwing up and getting uncomfortable. He was bloated, uncomfortable, cranky and was back to having watery mucus in his stool :( It got to be frustrating. We were so encouraged after his weight gain with the TPN, it was hard to see him start going backwards. This backwards stuff went on for a bit and by August 27, Keean was back to gaining weight a little better. He was almost 3 months old and was 9lbs 6oz. He had officially gained a pound since we were admitted to Children's Hospital 3 weeks before. Keean was not bottling much at this point. He seemed to throw up more frequently when he did bottle, but they encouraged us to keep on trying.
There was some talk about sending us to a hospital closer to home, but the GI doctor said that they wouldn't consider it until he was stable and on a formula that he was tolerating and they wanted to get him off of TPN if possible before sending him home. The TPN lines have a greater risk for infection than his feeding tube and it is a lot more dangerous to work with at home.
I was ok with everything going on because they were trying things, changing things and working on getting Keean stable enough to be discharged.
I was just happy that Keean was gaining weight. It's crazy how it was never something I paid close attention to with my oldest son. He was always big for his age. He graced this world at 9lbs 13oz so having a tiny baby and watching those numbers was new. Every morning they would wheel the scale in the room and every morning we would wait ever so impatiently to see what numbers were there. Did he gain weight? Stay the same? Or lose? I was honestly fine as long as they didn't go down. And at this point, he was heading in the right direction.
Wednesday, October 16, 2013
The PICC line placement
Keean's PICC line (the line that is placed for TPN I mentioned in my last post) was scheduled to be placed at 9:30am on August 20.
Here we go again! Super anxious mama and another night of nothing by mouth for Keean. I hated doing that because he was in there for not gaining weight and at this point weighed less than he did when we were first admitted 3 weeks before. BUT, ya do what ya gotta do and gave him IV fluid only starting at 1am and cut off all his feedings. They are supposed to go 6 hours with nothing by mouth or any food before a procedure.
This was tough enough to do, but when they had not come to get him for his 9am procedure by 1pm this anxious and over tired mama was about to lose it. The nurses on our floor were completely confused and finally heard that there was an emergency surgery so ours was pushed back. It was going to happen at 1. At 2pm, the doctor came to see how things were going, assuming he had his line placed and I was on the verge of screaming. I had called my husband who called the hospital and they told him surgery was re-scheduled for 10am the next morning. NO one had communicated this with us or our nurses so we were just sitting there with my starving failure to thrive baby, waiting to get wheeled to surgery. I kindly (ok not really but I was as kind as I could be at this point) told the doctor that Keean had not had anything by mouth for over 12 hours and they needed to figure out something. I was not going to do it again 2 nights in a row. So, they needed to find someone, somewhere that knew what they were doing and they needed to do it NOW.
The doctor was very helpful. He called up to the NICU and PICU to see if any of the doctors could do it there. There was a procedure room open and a doctor in the PICU was able to do the line placement. FINALLY!!!
I went through the same motions of wheeling him down, sick to my stomach, kissed him and told him I loved him and went to my place in the waiting room. This procedure took awhile longer than the endoscopy, so it was tough. I did what I had to do to keep my mind busy, but there was always nervous icky feeling present. My mind could never fully focus on what I was doing or who I was talking to until they told me everything was fine. It's funny how those feelings don't get better after numerous procedures. BUT, again the doctors were awesome and we got through :) The line was placed with no major problems and we brought our boy back to his room in ICC to wait and see if this would help jump start some weight gain!
Here we go again! Super anxious mama and another night of nothing by mouth for Keean. I hated doing that because he was in there for not gaining weight and at this point weighed less than he did when we were first admitted 3 weeks before. BUT, ya do what ya gotta do and gave him IV fluid only starting at 1am and cut off all his feedings. They are supposed to go 6 hours with nothing by mouth or any food before a procedure.
This was tough enough to do, but when they had not come to get him for his 9am procedure by 1pm this anxious and over tired mama was about to lose it. The nurses on our floor were completely confused and finally heard that there was an emergency surgery so ours was pushed back. It was going to happen at 1. At 2pm, the doctor came to see how things were going, assuming he had his line placed and I was on the verge of screaming. I had called my husband who called the hospital and they told him surgery was re-scheduled for 10am the next morning. NO one had communicated this with us or our nurses so we were just sitting there with my starving failure to thrive baby, waiting to get wheeled to surgery. I kindly (ok not really but I was as kind as I could be at this point) told the doctor that Keean had not had anything by mouth for over 12 hours and they needed to figure out something. I was not going to do it again 2 nights in a row. So, they needed to find someone, somewhere that knew what they were doing and they needed to do it NOW.
The doctor was very helpful. He called up to the NICU and PICU to see if any of the doctors could do it there. There was a procedure room open and a doctor in the PICU was able to do the line placement. FINALLY!!!
I went through the same motions of wheeling him down, sick to my stomach, kissed him and told him I loved him and went to my place in the waiting room. This procedure took awhile longer than the endoscopy, so it was tough. I did what I had to do to keep my mind busy, but there was always nervous icky feeling present. My mind could never fully focus on what I was doing or who I was talking to until they told me everything was fine. It's funny how those feelings don't get better after numerous procedures. BUT, again the doctors were awesome and we got through :) The line was placed with no major problems and we brought our boy back to his room in ICC to wait and see if this would help jump start some weight gain!
Formula changes and weight loss
Well because of the virus I mentioned in an earlier post and switching to a carb free formula, Keean actually lost so much weight he weighed less than he did when we were admitted. It was now August 17, we had been in the hospital since August 4 and we were moving backwards in the weight department. The doctors finally told me we weren't going to pay attention to his weight for awhile because they, instead, wanted to figure out what formula Keean tolerated best. So, that's what we did. Because he was on a carb free formula, they had to do heel pricks every 4 hours to check his blood sugar and he had to get a different form of sugar going through his IV to prevent any blood sugar issues. It was tough to see. He, of course, was a trooper. Taking on the heel pricks like they were taking his temperature. He was quite tolerant of all the labs being drawn and people surrounding him.
By August 19, it was decided that we had to come up with a new plan. Regardless of the fact that they had started a new formula and were increasing calories, Keean continued to lose weight. He was throwing up more, his stools started to increase again and he was starting to act a little uncomfortable. The GI doctor and the pediatrician came in and told us that they wanted to start Keean on TPN (Total Parenteral Nutrition). In other words (or words I understood best), Keean would be put under and they would place an IV in his neck which would pump all the nutrients we need through his blood. They wanted to give his GI tract a little break and ensure he was getting all the nutrients he needed. They told us more about it and wanted to just play it by ear as to how long he would need this for.
Here is a definition I found online: Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes. It may be called peripheral parenteral nutrition (PPN) when administered through vein access in a limb, rather than through a central vein.
This sounded fine and dandy to me in a stand point of gaining weight. It would be nice to have him getting all the nutrients he needed (not knowing what he was absorbing and what he wasn't from formula), but at the same time it was scary not knowing how long he would need it.
TPN is kind of a bitter sweet kind of thing. It guarantees nutrients, but it is dangerous. Being TPN is given through an IV, it runs the risk of the IV line getting infected which can make your body toxic and the TPN itself can be very damaging to the liver. This was scary. We were unsure how Keean would respond to it, if his line would remain infection free while we needed it and if we would ever be able to wean him off of it. There are many things that could require Keean to be on TPN long term or for life and this was horrifying to me. BUT I also couldn't watch him lose any more weight and knew we had to do it! So, they scheduled the procedure.
By August 19, it was decided that we had to come up with a new plan. Regardless of the fact that they had started a new formula and were increasing calories, Keean continued to lose weight. He was throwing up more, his stools started to increase again and he was starting to act a little uncomfortable. The GI doctor and the pediatrician came in and told us that they wanted to start Keean on TPN (Total Parenteral Nutrition). In other words (or words I understood best), Keean would be put under and they would place an IV in his neck which would pump all the nutrients we need through his blood. They wanted to give his GI tract a little break and ensure he was getting all the nutrients he needed. They told us more about it and wanted to just play it by ear as to how long he would need this for.
Here is a definition I found online: Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes. It may be called peripheral parenteral nutrition (PPN) when administered through vein access in a limb, rather than through a central vein.
This sounded fine and dandy to me in a stand point of gaining weight. It would be nice to have him getting all the nutrients he needed (not knowing what he was absorbing and what he wasn't from formula), but at the same time it was scary not knowing how long he would need it.
TPN is kind of a bitter sweet kind of thing. It guarantees nutrients, but it is dangerous. Being TPN is given through an IV, it runs the risk of the IV line getting infected which can make your body toxic and the TPN itself can be very damaging to the liver. This was scary. We were unsure how Keean would respond to it, if his line would remain infection free while we needed it and if we would ever be able to wean him off of it. There are many things that could require Keean to be on TPN long term or for life and this was horrifying to me. BUT I also couldn't watch him lose any more weight and knew we had to do it! So, they scheduled the procedure.
Monday, October 7, 2013
The first endoscopy
August 16, 2011, Keean's fevers went down and we were given permission to do his first endoscopy. This was Keean's first experience getting put under. He had to fast for 13 hours before they took him down for the procedure. I'm not going to lie.....it was super hard for me to not feed him for 13 hours when the reason we were there was because he wasn't gaining weight.
Anyway....Keean was a rock star. You could not tell that he hadn't eaten for 13 hours. Maybe it's a perk of having a child who doesn't like food. When they have to have nothing by mouth, it's almost a treat!
I would love to tell you all that I was also a rock star. That I was this strong, put together mommy who just sent her baby away with no problems. You know, the mom who puts their baby on the operating table, smiles and waves and then goes out to eat with her friends like they just dropped their kid off at daycare. OH, how I wish that was me. It's safe to say I was the complete opposite. I was a nervous piece of work. I think they should have put me under first and then Keean. Or they could possibly just admit me to the Mental Health Unit and let me sit until they could tell me everything was ok. I don't know what it is with watching Keean get sent back to get put under, but it never got easier. I can't imagine what parents go through when they send their babies off to have heart surgery or anything other kind of invasive surgery. My heart goes out to them and I have more of an appreciation for those mamas now than I ever had before Keean. I am completely aware that Keean was just having a tube with a camera go down his throat and into his stomach and intestine to see what was up, but I was a mess. I think you could say I felt as if it was a risky invasive surgery, when I knew very well that it wasn't a big deal. And I wish I could say it doesn't bother me. It probably shouldn't have. He didn't seem to care. He just looked at me with his big eyes and smiled as they wheeled him away. I'm pretty sure I couldn't relax until they came out to say he was out of surgery and was waking up.
The procedure didn't take very long. I don't remember exactly how long it took, but I don't think it took more than 45 minutes. Again, I don't know how people do it for those long procedures. I do believe I would need medication to get me through it. Something that would knock me out. BUT anyway, our GI doctor came out and showed us pictures. She told us everything looked normal from the naked eye and it would be a few days before we had any news. Some of the tests took days, some took a few weeks. In the meantime, we were asked to do what we were learning to do best. Wait. Wait for test results, wait to see if the new formula would help him gain weight and wait to go home!
Anyway....Keean was a rock star. You could not tell that he hadn't eaten for 13 hours. Maybe it's a perk of having a child who doesn't like food. When they have to have nothing by mouth, it's almost a treat!
I would love to tell you all that I was also a rock star. That I was this strong, put together mommy who just sent her baby away with no problems. You know, the mom who puts their baby on the operating table, smiles and waves and then goes out to eat with her friends like they just dropped their kid off at daycare. OH, how I wish that was me. It's safe to say I was the complete opposite. I was a nervous piece of work. I think they should have put me under first and then Keean. Or they could possibly just admit me to the Mental Health Unit and let me sit until they could tell me everything was ok. I don't know what it is with watching Keean get sent back to get put under, but it never got easier. I can't imagine what parents go through when they send their babies off to have heart surgery or anything other kind of invasive surgery. My heart goes out to them and I have more of an appreciation for those mamas now than I ever had before Keean. I am completely aware that Keean was just having a tube with a camera go down his throat and into his stomach and intestine to see what was up, but I was a mess. I think you could say I felt as if it was a risky invasive surgery, when I knew very well that it wasn't a big deal. And I wish I could say it doesn't bother me. It probably shouldn't have. He didn't seem to care. He just looked at me with his big eyes and smiled as they wheeled him away. I'm pretty sure I couldn't relax until they came out to say he was out of surgery and was waking up.
The procedure didn't take very long. I don't remember exactly how long it took, but I don't think it took more than 45 minutes. Again, I don't know how people do it for those long procedures. I do believe I would need medication to get me through it. Something that would knock me out. BUT anyway, our GI doctor came out and showed us pictures. She told us everything looked normal from the naked eye and it would be a few days before we had any news. Some of the tests took days, some took a few weeks. In the meantime, we were asked to do what we were learning to do best. Wait. Wait for test results, wait to see if the new formula would help him gain weight and wait to go home!
Tests, tests and more tests
Being the mystery baby, the doctors had their work cut out for them. Someone had to figure out what was going on. Unfortunately, to do this, they had to take blood ....TONS of blood and stool samples to see if someone could find something someone missed before. One of the blood tests they did tested Keean for was a virus that mimics the roto virus called the enterovirus (watery stool, puking, fevers). This test came back positive as Keean was starting to experience fevers and more frequent watery stool. This, of course, is not good for someone like Keean and we were immediately quarantined to our room to prevent other babies on the floor from catching it. It is very contagious. Some of the doctors questioned if Keean caught it while at the hospital, while others questioned if he was starting to show symptoms of it before we were even admitted. Apparently this virus can hang on for awhile.
This, of course, had me a little hopeful that Keean was on the wrong formula when he was first born which caused the puking and trouble stooling. I thought MAYBE we actually did have him on the right formula, but he caught this virus which caused him to go backwards and it was as simple as that. It was a HUGE run of bad luck and once the virus passed we could go home! A girl can hope, right?
Along with this virus, one of the stool samples showed that Keean was malabsorbing sugar. This made sense because he was having watery stools, was gassy and had a distended stomach. Because of this, we had to switch formulas yet again. We started giving him a formula called 3232A. This formula does not have sugar and is made so different types of sugars can be added in according to what the patient can tolerate.
This was not an easy task, figuring out what Keean needed was complicated. We worked with a dietician who concocted a formula that was "just right" for Keean. You would actually be amazed if you saw what went into make up this formula. It wasn't the typical "6 ounces of water 3 scoops of formula, put it in a bottle and shake it up" directions. This concoction was made up of 3232A, polycose and microlipids. We used gram scales, huge jugs, droppers and scoops just to make him a bottle. It was interesting. It is extremely safe to say I was happy they mixed it up for us when we were at the hospital.
Because of the malabsorption and the virus we were unsure if Keean would get to have his biopsy. It was August 14. We were switching formulas, yet again, we had a baby who was losing weight, yet again and we wanted answers. The only way to do this was to have a biopsy done, but in order to do the biopsy he had to be fever free and feeling well enough to get put under. I did the only thing I could do and I asked for prayers.....lots and lots of prayers.
This, of course, had me a little hopeful that Keean was on the wrong formula when he was first born which caused the puking and trouble stooling. I thought MAYBE we actually did have him on the right formula, but he caught this virus which caused him to go backwards and it was as simple as that. It was a HUGE run of bad luck and once the virus passed we could go home! A girl can hope, right?
Along with this virus, one of the stool samples showed that Keean was malabsorbing sugar. This made sense because he was having watery stools, was gassy and had a distended stomach. Because of this, we had to switch formulas yet again. We started giving him a formula called 3232A. This formula does not have sugar and is made so different types of sugars can be added in according to what the patient can tolerate.
This was not an easy task, figuring out what Keean needed was complicated. We worked with a dietician who concocted a formula that was "just right" for Keean. You would actually be amazed if you saw what went into make up this formula. It wasn't the typical "6 ounces of water 3 scoops of formula, put it in a bottle and shake it up" directions. This concoction was made up of 3232A, polycose and microlipids. We used gram scales, huge jugs, droppers and scoops just to make him a bottle. It was interesting. It is extremely safe to say I was happy they mixed it up for us when we were at the hospital.
Because of the malabsorption and the virus we were unsure if Keean would get to have his biopsy. It was August 14. We were switching formulas, yet again, we had a baby who was losing weight, yet again and we wanted answers. The only way to do this was to have a biopsy done, but in order to do the biopsy he had to be fever free and feeling well enough to get put under. I did the only thing I could do and I asked for prayers.....lots and lots of prayers.
Tuesday, October 1, 2013
Where do we go from here?
August 13, 2011 was a frustrating day. See, they did Keean's weight checks every morning at the same time every day. They brought in scale #1 (all their scales are numbered and when a baby has weight issues they ensure they weight the baby at the same time with the same scale to avoid any difference) so his weight was as accurate as it could have been and he had LOST weight :( Seriously? We got to the point where we lived for these weigh in's. In fact, some of his nurses would stay a little late after their over night shift to see this number. Our heads would all meet in the middle above the scale and wait patiently as the red light would blink until it was ready to tell us the number. Keean had been doing fairly well with weight gain since his feeding tube was placed, but something changed. We weighed him in grams (and still did up until a few months ago) and one day he was 4.04, the next 4.01. This was almost an ounce in the WRONG direction. I wanted to cry. I asked them to do it again.....and again......and still nothing changed. He had lost weight and no one knew what to do.
This was frustrating, but the doctor talked with us and ensured us she would be back later with the GI doctor to discuss a plan. They were going to have a meeting and figure out what our next steps were. How long did we let him lose weight before intervening or trying something new? What was causing him to not absorb nutrients? Why, even if he's not puking as much is he not able to gain? It was confusing and frustrating and I felt defeated.
Well, when the GI doc and the regular pediatrician came in to talk to us they told us that Keean was one of the mystery babies. They didn't know what was going on. Great. Now, there are times this is funny when your child (or yourself) is completely different and confusing. I take pride in being a complete mystery to people at times. I think it's great when my kids are who they are and don't follow the norm, but not in this case. It was a terrifying feeling to hear that the most educated doctors in the state and some of the country had no clue what was going on with Keean. And because they didn't know what was going on, they really couldn't do much to help him. UGH. I remember crying. I didn't want to hear we had a mystery baby. I wanted to know exactly what was wrong and I wanted to do something NOW to fix it.
They discussed doing an upper endoscopy. They would put Keean under and go up his nose, down his throat and into his stomach and upper intestines with a camera and take a biopsy of his stomach and intestines to test for different things. Now, they said they weren't sure what they would find with this because the things they would think of testing him for should have been ruled out in blood work, but it was something to try.
They also wanted to change his formula to see if it would help with anything, which they did, but his watery stools continued and his weight gain didn't improve....so we were put on the schedule to do the endoscopy and pray for answers. In my caring bridge post on this day, I can still feel the frustration and sadness, the comfort of being in the hospital and the aching to be home. It was a rollercoaster.....and that ride was just beginning.
This was frustrating, but the doctor talked with us and ensured us she would be back later with the GI doctor to discuss a plan. They were going to have a meeting and figure out what our next steps were. How long did we let him lose weight before intervening or trying something new? What was causing him to not absorb nutrients? Why, even if he's not puking as much is he not able to gain? It was confusing and frustrating and I felt defeated.
Well, when the GI doc and the regular pediatrician came in to talk to us they told us that Keean was one of the mystery babies. They didn't know what was going on. Great. Now, there are times this is funny when your child (or yourself) is completely different and confusing. I take pride in being a complete mystery to people at times. I think it's great when my kids are who they are and don't follow the norm, but not in this case. It was a terrifying feeling to hear that the most educated doctors in the state and some of the country had no clue what was going on with Keean. And because they didn't know what was going on, they really couldn't do much to help him. UGH. I remember crying. I didn't want to hear we had a mystery baby. I wanted to know exactly what was wrong and I wanted to do something NOW to fix it.
They discussed doing an upper endoscopy. They would put Keean under and go up his nose, down his throat and into his stomach and upper intestines with a camera and take a biopsy of his stomach and intestines to test for different things. Now, they said they weren't sure what they would find with this because the things they would think of testing him for should have been ruled out in blood work, but it was something to try.
They also wanted to change his formula to see if it would help with anything, which they did, but his watery stools continued and his weight gain didn't improve....so we were put on the schedule to do the endoscopy and pray for answers. In my caring bridge post on this day, I can still feel the frustration and sadness, the comfort of being in the hospital and the aching to be home. It was a rollercoaster.....and that ride was just beginning.
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