Saturday, October 23, 2010

Brandon’s Story

When Brandon was first born he was a beautiful and perfect little boy in every way. I was bound and determined to nurse him longer than the 2 weeks I forced myself to with my first born. Brandon was an eater, it was constant and tiring. I realized after the first few initial hours his appetite didn’t slow down, but instead increased tremendously. I didn’t remember my daughter being that hungry but he was a boy and I figured he just really liked to eat. Every kid is different right? I noticed a lot of other weird things, for instance, every time he ate he most likely had a bowel movement. I thought that it was normal for as much as he was eating, where else would it go? I also noticed that he spit up often, he was spitting up milk and lots of mucus. I was alarmed by the amount of mucus and paged the nurse to ask if that was normal. She said, “I have never seen that before, but if he is putting on weight, I wouldn’t worry”. Another nurse mentioned that it could be something he sucked in the birth canal and he just needed to expel it and he should be fine. I took that answer and went about my hourly feedings with him. Looking back, I am amazed and proud of the fight he put up since day one to not give up on drinking the milk he needed. He managed to gain weight against the odds. I remember I was looking into his eyes and just felt that he was different. I just knew something was going on bigger than I could understand at the time. We finished our stay in the hospital and went home. My father came right away to see his new grandson from out of state. I remember us all sitting, enjoying our time when I received a call from my family doctor’s office. The nurse told me that Brandon had two mutations detected for Cystic Fibrosis on his newborn screen. She told us we needed to come in right away so we could get referred to a specialist to confirm these results. I asked her if that meant he had cystic fibrosis. She told me its hard saying until it is confirmed with special testing. I was crying as everyone sat in horror waiting for me to tell them what just happened. I told them that they think Brandon might have CF. My cousin was born with CF 28 years ago, so I was slightly familiar with it but not as familiar as I should have been. I looked up some things online and noticed all the sites I went to had shared a common statement that stuck out. People with CF have two mutated genes, exactly what the nurse said Brandon had. The following day there was a package on the door step from the State of Indiana which carried the New Born Screening test results. I read it over and over but it read clear as day... Two mutated genes, Delta F508. Now we can all hope, dream and pray for that miracle, but truth of the matter is I knew it then. We had our family doctor appointment and he put it to us bluntly, it is most definite that he has cystic fibrosis. It has to be confirmed with testing but it says it clear as day in the New Born Screening test results, two mutated genes. A person with two mutations HAS cystic fibrosis. There were tears welling up in my husband and my eyes and we were given a moment to be alone. The nurse came and wished us luck in the testing and hoped that a miracle would be on our side. We got our referral and had to wait a week to get into the clinic. This period had to be the worst, nothing like being in limbo. When you do not know what you need to be doing for your child that most likely has this disease, a week seems like an eternity. A week later we went in for his appointment. The CF specialist at the clinic examined him and asked a lot of questions. She was rather shocked to hear I had a relative with CF. It is uncommon for more than one family member to have CF, aside from siblings. The pulmonologist went on to say that it was possible the test could still come back negative, but not to get our hopes up because that would be a miracle in our case, especially with the double Delta F508 mutations already picked up in the New Born Screen. She started him on enzymes and gave us an order for a sweat test. Sure enough, his sweat test came back as positive for having cystic fibrosis.
We came back to the clinic to discuss what to do now that we knew Brandon’s results. Percussion and nebulizer treatments were demonstrated, and aside from Brandon’s hatred for them I felt really confident in what I was to do. We had to figure out a system that Brandon would tolerate, and I had to learn how not to cry while muscling my infant to do what had to be done. I learned the best method was to do all the major meds at night, so I would get him out of bed while he slept. All was well as long as he did not wake up. Any other time he fought me, and we just pushed through. I gained a grand understanding of the importance of doing EVERY treatment; there are no breaks or days off. It’s like brushing your teeth or putting your shoes on, it’s a part of your day, plain and simple. Once you get your method down its time consuming but otherwise rather simple and to the point. Cleaning the nebulizer cups may take a few tries before getting it down, but that too seems to make sense rather early into the game. For those still lost in it, boil, boil, and boil. I did find that for the days when we didn’t have many neb cups, but were on increased treatments for a cold, a good bottle sanitizer worked great. I used the microwaveable kind and it seemed to do a great job, we now have an electric one that also does a great job. I really didn’t feel comfortable with the dishwasher, unless I was 100% sure it got hot enough, and nothing else ran with it. However, there is still the chance of left over gook from the previous load, and the stress of that possibility was too much. Nebulizer cups seemed to clog more often than not when cleaned in the dishwasher, and had to be thrown away before it was time to. Boiling has proven to be the simplest, shortest, and most effective way to clean the nebulizer cups.
I would have to say the hardest thing to understand about cystic fibrosis is nutrition. When we first went to the clinic and received a bottle of enzymes, I was at a major loss, and I definitely would say they scared me. We started with one capsule opened into applesauce before every bottle. We were also advised to add baby cereal to every bottle. Brandon’s CF physician did not feel breast feeding was the best for him so I had to supplement with formula. Since I had to supplement, Brandon ended up preferring the bottle to the breast, so I had to pump. We made the switch to formula and things took a turn for the worst. Brandon was spitting up, throwing up, and had horrible diarrhea, worse than I have ever witnessed. He also had a terrible diaper rash. I knew from my personal experience this meant milk allergy. My mother, my daughter and I all have intolerance to whey (a protein in milk), and I guessed Brandon did too. I learned with my daughter that goat’s milk was the best answer. I tried everything else with her first: soy caused constipation, lactose free still had whey in it, even the hypoallergenic formulas had whey in it. I was at a loss until a friend of mine recommended goat’s milk. I was really hesitant and fought it at first, but after trying everything else, I was willing to try anything. Wouldn’t you know, it was a God send! I was not going to put Brandon through what my daughter went through, so I went straight to goat’s milk. You have to make it special for infants, and I made it extra special for Brandon. You can find out how to make it later in the recipe section in this book.
I will tell you honestly, that Brandon’s CF doctor did not agree with our use of goat’s milk and there were other options she wanted us to try. She asked us to try a special order hypoallergenic formula for severely allergic babies. I really stewed over this, what we were doing worked; Brandon liked it and was gaining weight. I did a little more research on goat’s milk. I already knew from previous research that it is the closest thing to a mother’s milk than any food, and easier to digest on account of more medium chain fatty acids. Goat’s milk is a complete protein and has every essential amino acid needed. It is also higher in vitamin A, calcium and protein than cow’s milk, and lower in fat .I found several articles online in my new search of nutritional benefits for CF’ers, but this statement was easiest to understand: “Goat's milk contains every amino acid that is essential to the body, making it a fully complete protein. In addition, Goat's milk is loaded with fatty acids--almost three times as much as cow's milk--that are known to help fight certain diseases, such as cystic fibrosis, heart disease and many digestive diseases and problems. In addition, half of lactose intolerant people who cannot drink cow's milk can drink goat's milk with no problems. Finally, goat's milk has the added benefit of being hormone-free, unlike some cow's milk. ” We returned to the clinic and told Brandon’s physician that after further research, we had decided to continue with the goat’s milk, it was what was working and we see no point in changing from the goat’s milk unless it was medically necessary. Brandon’s weight was great and his numbers were good as well. We felt a certain amount of respect from the Doctor at this point as parents. It had nothing to do with that fact that we all disagreed on the goat’s milk. It was the fact that we were all fighting this fight for Brandon and committed. It is important as a parent to remember, your child’s physician and you are a team in this fight for his/her life, and you need to be involved, not just on the sideline. Your physician count’s on you as parents to know your child and follow thru with a care plan that you and your physician come up with. That does not mean you do not challenge the status quo, help in the research and make suggestions that may work for your child. Keep in mind, your child’s physician sees extreme cases, and will also challenge you to see where you are as parents in this fight.

I have learned a lot from this whole experience, but now I am going to veer off here for a minute to discuss my personal opinion of doctors and the medical field. I used to hold doctors and hospitals on this pedestal of all knowing practitioners, until I had more experiences with them. Some people will completely discredit doctors if they cannot figure out something immediately, or the person had a bad experience of sorts. Physicians have gone to school to learn the facts, and they have a series of residencies to be sure of the field of medicine they choose. During this time, they treat many patients. They can also call on other practitioners for a second opinion if need be. But at the end of the day they are just doing the best they can. They start out in training mode and as years go on they learn from experience and get better and better at judging and figuring things out. That doesn’t mean they are always going to have the perfect answer or solution to every challenge. I went to school to become a hairstylist (cosmetology school). I had four weeks in class room before I was put on the floor to start working on people’s hair. I was so afraid for my first hair cut, even though I had all the training I needed; I knew I needed more actual time cutting to feel confident of my decisions. As time went on it got easier and seemed to be rather rewarding. Some students were more technical and others were more hands on, yet we all knew the material. Your child’s physician may come across as more technical or hands on, but either way they have studied and know the ‘material’. So to compare a doctor to what I do as a hairstylist, they have the knowledge and ability, they know what works with you and as a general rule they know what’s best. Then there are those few people who come along and throw them for a loop, because God created all people different and unique. There is going to be a difference of opinion at times, that’s ok, and you can expect to disagree at times with your child’s doctor. The key point here is everyone has the best interest of your child in mind. The doctors that specialize in this field are all very passionate and wonderful in their own way. So let them be a part of the team. Fight together, but just remember you’re the captain. Just as you would have an opinion and the final say in what happens to your hair, you have an opinion and final say in what happens to your child.
I always feel like I could be doing more. Even when Brandon is at his best I have to keep researching and reading about everything even remotely related to CF and nutrition in general. I guess it’s like being in a boxing match, you can be on top of your game, and gaining good scores, and it seems like there is no way you could lose. Then, you take a left hook, and it’s lights out. The more you train and learn about moves you may never use, the more you are equipped to fight. CF to me is a fight, I want to know every move possible and learn how to best prevent Brandon and our team from losing the fight. In the beginning Brandon’s weight was always great, he was on a roll, and his lung function was always 100%. At seven months of age Brandon started coughing. Until that time there was never a cough unless it was during a treatment. It wasn’t much of a cough, but we were told any extra coughing aside from his baseline cough was not good. I of course called the clinic as I always do anytime I have the slightest concern, that’s what they are there for. I knew they would tell me to start his action plan of increased treatments, which they did, but I wanted to be sure they knew what was going on. Our physician’s general rule was: after starting the action plan, if he didn’t have any change or if he got worse, to call the office back. I personally only give it 24 hours to get better before I call unless there are prescribed medicines such as antibiotics. If there are antibiotics, I then give it three days. Brandon wasn’t getting worse or better, so I called and they had him in to examine him. The doctor prescribed him a 20 day dose of amoxicillin for what they felt was a sinus infection. His lungs sounded clear and that was our biggest concern. Within two weeks, Brandon developed an odd small red dotted rash across his entire chest and tummy. Brandon seemed to act fussier, but I was unsure of what he was feeling. Was he itchy or sore? I called the clinic and they decided over the phone that he was most likely allergic to the amoxicillin, and they were going to switch him to Cleocin. We were told to restart the 20 day cycle on this new antibiotic. Brandon still kept a little bit of the rash, but they had him in and said it wasn’t concerning them as long as he didn’t show signs of irritation, and he didn’t seem irritated. Once Brandon stopped the antibiotic the rash went away as well as his cough. Two weeks later the cough came back with a bit of a runny nose. I went into the usual routine: call the clinic, start the action plan, but the action plan still didn’t change the cough. Back to the clinic we went, and back on the Cleocin for another 20 days. Allergy testing and an automatic start on Singulair was also added to the action plan. We mimicked this routine again for a third time, and now came up to the fourth time. Brandon’s CF doctor just looked at me and said, “Ok we have been on this same routine for a while now haven’t we?” I answered “Yes”, and she said that she didn’t think it would be pseudomonas because he would be wiped out and showing greater signs of sickness. His lungs still sounded ok, but were beginning to get a little rattle to them. She decided at this point it was wise to just do cultures and check out everything just in case. Wouldn’t you know it, he had cultured pseudomonas. We were all rather shocked, but we went with a different plan and started him on inhaled TOBI, and a newer antibiotic named Cipro. Cipro is a drug that is specifically designed to combat pseudomonas. I was at least relieved that they found out something, and now we had a plan more specific towards what was going on. There was hope that he would finally get through this. After beginning the new medication, I noticed Brandon started coughing a lot more and seemed a tad more run down, which is not like him at all. I called the clinic back and they said to give it a few more days because some people just need to adjust to the TOBI. A few days passed and still no change, so they had Brandon in right away. She concluded that Brandon was not responding to the Cipro. Brandon’s CF doctor examined him and was not happy with what was going on and his lungs sounded worse. She asked me to head straight up to the hospital and said they would be waiting to admit Brandon and start him on intravenous (IV) antibiotics. I did as I was directed calling my husband and my mom on the way to let them know what was going on. I arrived at the hospital and waited for them to get us in. I think I was just in a state of going through the motions; my mom arrived to support me through this process, and of course be there for her grandson. I really didn’t know what was really going on, nothing had been explained and no one seemed to have answers, just orders. Finally one of the CF clinic nurses came down to our room and started to explain that Brandon would be getting an IV form of Tobramycin (TOBI) and continue the inhaled TOBI as well. She said they would increase the half hour CPT (Chest Percussion treatment) to an hour CPT four times a day, as well as continue four times of the Albuterol. She advised me to bring Brandon’s SmartVest from home. I started to realize that this wasn’t going to be an in and out kind of thing. I asked our clinic nurse how long exactly would this stay be? She replied, “Within 14 days, or at least that’s how long the IV needed to given for. Some people get approved to go home early if the doctor feels comfortable with them doing the care at home. At a certain point, Brandon will be given a PICC line (peripherally inserted central catheter) which can be maintained from home, but usually the first hospitalization the doctor will keep you in the full stay.” This was not really what I wanted to hear but whatever is best for Brandon, is what will happen. I called my husband to let him know what was going on and he also didn’t like the news, but it was what it was. I got through the day, after they got Brandon’s IV in and set up for the evening. I had a friend round up Brandon’s SmartVest compressor, vest, and tubing from my house and other things needed and she came up. My mom and sister had been there3 for moral support, and my husband and daughter came up a little later to spend the evening with us.
We made it through the night; Brandon in his oversized hospital crib and I was in my broken down cot, but considering it was the only cot I couldn’t complain. Brandon was checked routinely and had several blood draws to make sure he was getting the right amount of medicine. I had no goat’s milk in the hospital so I told them soy would be fine for now. They told me to just order it with room service from the cafeteria. Next thing I know I had Brandon’s CF doctor and the hospital nutritionist in our room, and they were very unhappy with me. I explained first to his doctor that I was having my husband bring some goat’s milk up and this was what they had for him at the moment. She was fine with this response and left the room. The hospital nutritionist still was displeased about giving him soy milk instead of soy formula. I told her that is what the nurse staff offered me, and I assumed since he was 2 weeks from a year old they just put him on whole milk. Then she lectured me about goat’s milk and I told her my stance was firm on this issue, and that was final. She sighed and gave an expression that suggested disgust and irritation, then off she went and never returned.
Things got a little harder on day two, Brandon was poked and prodded and checked for anything and everything with throat swabs and other tools. Every test came back fine except one, this test checked for how much he was infected by pseudomonas. It turns out, pseudomonas had colonized his lungs, and it was looking bad. Brandon’s CF doctor was rather surprised at how high the number was in comparison to Brandon’s appearance. Brandon was happy and full of energy, he looked like a normal little guy. His oxygen saturation on the pulse oximeter was still reading 100%. There were a few times it read 98-99%, but the nurses said it would have reached 100% if they waited for it, but they were content with 98-99%. The decision was made to monitor Brandon for a few days, and then have a PICC line put in. This was good news, we could finish our care from home. I was very happy to hear this, I had hoped of getting home a week sooner, but I felt proud that the doctor trusted us to do what was needed. By day three, Brandon gained a dislike for nurses and was growing tired of being messed with, as was I. The good news was the medicine was working! The following morning they were going to insert the PICC line and keep an eye on it for 24 hours, and then we would be going home.
Things were moving right along, I held out on feeding Brandon so he could be sedated and inserted with the PICC line. The team came up in the morning; they were all specially trained in PICC lines, which is very different from IV nurses. I stayed in the room while they prepped and when the anesthesiologist arrived I signed consent and was asked to leave. Before I left I explained that Brandon is a fighter and he is very strong, they just kind of laughed like I was cute and said he wouldn’t be able to move once sedated. In most cases I am sure this is true but I don’t think they understood the term ‘fighter’ in the same way that I understood it. A fighter is someone who is strong in many areas and one of them is mental strength. As I waited I had a sick feeling, and I just knew something wasn’t right. After a half hour I saw the PICC nurses leaving the room, there was some talking going on about Brandon. I walked up to them and asked what happened. They looked at me and said, “He’s a fighter alright”, but they certainly weren’t laughing about it then. One of the nurses went further to explain how they had tried to stick him 3 times in one arm, a fourth try in the other arm, and finally the head of the department, which happened to be the overseeing anesthesiologist, took over. He got it in on his first try, but it was Brandon’s fifth try. Brandon somehow managed to jerk his arm while he was sedated when they went to put the PICC line in. I grew angry and pushed through to Brandon’s room. That little boy was a trooper and he was just happy to see me. I looked over the damage and it was awful, his right inner arm looked like hamburger meat, and the other arm had the line in it. He seemed like he was distraught and really didn’t want anyone to mess with him. He wanted his mommy and he wanted to be alone. Once we were alone I cried and calmed Brandon down. I then called my husband to tell him what went on. He was rather upset and did the ‘man thing’ of being silent, radiating heat penetrated through the phone, he was filled with anger and sadness. I went with the, ‘it’s over now and tomorrow we get to come home, so let’s just move on’ attitude. At least they didn’t have to draw blood by sticking him anymore, the blood came directly out of the line now. After several hours it was working fine and they pulled the IV out of his left hand. The poor little guy was bruised everywhere but his right hand. That evening my husband came up with our daughter to bring homemade dinner from the ladies at church. This was the routine every night as we tried to maintain a normal family life. Also, Elliauna loved to come and play with her brother, especially in the big playroom they had in the hospital. Brandon was able to play as long as no other kids were in there. Elliauna was running around and Brandon was crawling after her, while my husband chased after him with his pole holding his IV pumps. We were having a really nice time when my husband noticed something looked weird on Brandon’s PICC line. We flagged down a nurse from the hallway and she took a look at it and agreed that it did not look right. She asked us to go to his room and wait to have someone come up to look at it. The PICC nurses all went home for the night (there are no night shift PICC nurses), so they sent the next thing to one; an IV nurse. She checked it over and said it was unraveling so she rigged it the best she could and told us that they would have someone up in the morning to look at it. So the late night shift began and at one in the morning an IV nurse came in to do a blood draw. I told her that the line was unraveling and that I wasn’t sure it was the best idea to draw from it right now. The IV nurse just looked at me, (she was ancient and cranky) she told me she had to do her job and went right to it. She also turned all the lights on so Brandon was highly irritated, then she left with her blood draw. I ordered up a bottle of Brandon’s goat’s milk from the nurse to soothe him, as I held him I noticed it all seemed a little carefree. Normally there were restraints of some tube in the way tripping me or wrapping me up, but there was none of that. I looked down and there was his tube that should be connected to the PICC line hanging out on the floor. I called the nurse back who sent the same IV nurse back up to the room. This woman came in with this look of ‘OH CRAP’ on her face and just said “I had a feeling”, you think? I tried to warn her but she had to do her job. This night became one of the worst nights of my life, I would have rather of been giving birth with no pain medications than to have to experience this. I was responsible for holding Brandon down, I positioned my body facing him and laid my arm across his chest, I held his hands and did my best to divert his attention. There were two IV nurses, the original one I warned and another older woman, they fumbled around trying to salvage the piece that broke. The line was still in his arm and the connector from the PICC line into the IV tubing was what had unwound and snapped. After a few attempts to fix it they discussed a piece that was supposed to fix it, they dug that out of their cart and tried it. This still didn’t work. One of the ladies thought the piece was too big and ordered up a smaller one, which still didn’t work. At this point everyone was frustrated, Brandon and I were mad and nothing was improving. Then they did something that pushed me over the edge. They pulled the directions out and read them in front of me and then tried to step by step it with these directions. This still didn’t improve the matter and I shot a look over at them with angry tears rolling down my cheeks. It had been two hours since they started, Brandon was hysterical and not going to give up on the fight. I was doing my best not to come unhinged on these women. The woman who caught my look said, “I think this is enough, why don’t we just put an IV in for the night and have your doctor come in, in the morning.” I just nodded not thinking any word that would come out of my mouth would be pleasant. She went to put the IV in the only spot left, the right hand and I saw her start fishing around in his hand for a vein. I guess my look became deadly because at this point she backed it out and said, “Ok, I am not going to try again your doctor can figure out in the morning what she would like to do”, and they left. I called my husband after I had Brandon calmed down, and he was livid. We sort of calmed each other down over the phone and he said he would be up first thing in the morning.
Brandon’s doctor came in early and told me that I needed to withhold food again and that they were going to put a central line in that afternoon. Since he had been off his medicine since one in the morning she was getting nervous and wanted to IV him until the central line was inserted. She called her ‘best’ IV nurse to put another IV in him, although I was not sure where else she was going to get it in. I went to a different room with Brandon and the IV nurse, and she did something very smart that I will use for future reference. She swaddled him in a sheet so he couldn’t fight as bad. She determined there were no options in his arms hands or wrists, so she debated on the foot or the head. The head seemed to be the best thought since he was crawling and may be interested in pulling it from his foot. She got the IV in without a problem and wrapped his head. Brandon and I went back to the room and within an hour his IV pump was beeping. The nurses called the same IV nurse back in. The vein blew on his head and she refused to try a second time. She said there was nowhere else she was confident in sticking and she refuses if she is unsure of getting it. At this point I was angered, frustrated and just plain tired of everyone messing with my boy. I had the doctor called and asked her to come in as soon as possible. Brandon’s doctor was in the room right away and I asked her to explain to me why I should let anything else happen to my son. It had turned into torture and I had my mind made up to refuse further treatment unless she could assure me that it was necessary. She said she wouldn’t exactly call it torture and that unfortunately it had been a little rough for Brandon. I asked her to look at his arms and to tell me again that it had not been torture. She did as I asked and looked at his arms. Now this woman is a rock, I had not seen much display of emotion on her face until that very moment. Her eyes glossed over and they turned to fire, I knew she was very upset and I also knew that he was her patient and she cared about him. I don’t want to say that I hadn’t thought that prior to this experience, but I truly saw to what degree she cared. She continued her conversation with me and explained in full detail as to why Brandon needed to stay on his IV. This was our only time to fight and hopefully we could even get rid of it. Either way he needed the medicine since the pseudomonas had colonized his lungs, if we did not continue treatment he would continue to get worse and it would continue to damage his lungs. I believe I already knew this all in my head, but my heart had to be reasoned with. So I agreed to continue treatment. I also asked the nurse to put us in a larger room, in which they did immediately. I even got a toddler bed for myself! My husband met me prior to the next procedure. The head of the entire department, the same one that inserted the PICC line, was the man putting in the central line in Brandon’s groin. It went smooth and Brandon did excellent, they were even willing to let me still take him home after 24 hours. I was not comfortable after all that happened with going home. Brandon and I eventually came home from the hospital after 14 very long days. He no longer had the pseudomonas colonizing his lung, although we were unable to get rid of them entirely.
Many hard lessons were learned from Brandon’s first hospital stay, but don’t let this scare you. This is one of those rare occurrences, it was the worst case scenario. It still doesn’t even qualify for the worst that could happen, but it wasn’t all smooth either. I learned that as Brandon’s parent, I am ultimately in charge. No one will make me feel like I don’t have a choice or say. My son deserves the best, I don’t care if people like me because I am not there to make friends. I am there to make sure my son gets the best care available. When you choose an unconventional nutrition plan, stick to your guns because you know your child and you know what works. You are not going to get into trouble, they are not your mom or dad. They may label you differently, but at the end of the hospital stay I had everyone’s respect. They were complimenting the very things that at first they didn’t understand. I even had a few nurses come in and ask me about natural things to help their own kids and family members. The staff was delighted by my devotion to my child, I was like a breath of fresh air. I never understood in the beginning, but after two weeks I realized that most parents aren’t active in their child’s care. Many parents use the hospital as a break from the high demands of their children’s conditions. Although parents need breaks, and pampering, this is not one of those times. Your child needs you the most when they are sick. If you have to work or need to give time somewhere else, like special time for another child, they need people with them that they know and who love them as much as possible. If you have minimal family, think creative. Church members that know your child, school teachers, baby sitters, good friends of the family, other clubs or groups you belong to may have people willing to donate their time to be with your child. I view it as this: I need a babysitter if I leave the house, the same applies for the hospital. You should have someone appointed specifically to speak for your child when you are not there, this is not the job of nurses or hospital staff.
The entire time Brandon was in the hospital his oxygen saturations were always good. His weight dropped ever so slightly, but he regained it back before we left the hospital and he kept climbing in weight thereafter. He continues to impress everyone. Brandon did start showing signs of having a texture issue, but it wasn’t bad enough since he was eating and gaining weight.
At 14 months of age Brandon started to walk with the assistance of tables and furniture. At his CF clinic appointment his weight had stayed the same as the previous month, they seemed unhappy about this but didn’t make it a big deal either. They had said they would like to see him gain weight by his next appointment. Shortly after Brandon turned one, he didn’t seem to want to drink the goat’s milk. I gave him soy milk although this was not what Brandon’s doctor or I wanted for him. His CF doctor asked me to try out a formula designed for highly allergic babies. I told her I would try it. They wanted to see him in a month to be able to keep an eye on his weight. At his 15 month appointment at the CF clinic, Brandon had lost a few ounces, which really concerned his doctor. She asked me why I felt he had lost weight, I explained that he was a full blown walker and had cut in 7 teeth this past month. He didn’t seem too interested in food no matter how hard I tried. He especially didn’t like meat and eggs. This was a very unfortunate thing too, considering his milk/whey allergy. It left me without much else to offer him for protein and fat. I was told that he needed to gain weight by his next appointment or they would have to talk about a feeding tube for him. My mouth dropped, I was instantly shocked and upset. They had referred him to the First Steps program, this is a State aided program in Indiana that is an early intervention program to help with all sorts of special needs. Brandon’s special need was his texture issue. On one hand I was excited about this recommendation, but I also felt like it was a slap in the face. I fully agree that I was not too sure how to work with a texture issue, although my mother, my sister, and I all have this same issue. I thought it would be good to know what the professionals do for this. I knew for a boy who was picky with many textures and allergic to whey, he was doing amazing and was beating all odds so far. I researched and found that an average boy at 15 months old should weigh 23 pounds, and an average girl should weigh 22 pounds. Brandon weighed 21 pounds, it was not where I wanted him to be, but it was not enough for me to be ok with giving him a feeding tube. I felt like we needed to exhaust all other options first. I do understand it, I understand that if his weight continued to go down then I would have needed to consider the feeding tube, but not like that and not under those circumstances. I hit it hard when we got home, I pumped up Brandon’s diet. I took Brandon off the formula she asked us to try because he just wasn’t liking it and wouldn’t drink it. I felt like I knew what I was doing and really wanted to finally trust myself to do it. At this point I felt anything was worth a try. I went back to the soy and searched other methods. I cut out all juice and water intake (unless it was a hot day). If he was thirsty he got a protein drink of sorts. The CF clinic had explained previously about wasted calories on juices and too much water. This is when I started to make his protein shakes found in the recipe section.
I was on a mission to prove to myself that what knowledge I had gained about healthy eating could also be applied to a CF diet. I will go into more detail of how I did it in the nutrition section of this book, but I did do it. Brandon was putting on weight, and doing it in a healthy way. We went to our family doctor for Brandon’s 15 month appointment, and discussed what was going on to our family doctor. It had been two weeks since the clinic visit and Brandon weighed 23 pounds. He was looking great according to our family doctor. He told me that all children lose weight when they start to walk because their bodies burn more calories than they are used to. Also that it is common to fluctuate and the weight might be down a little for three to six months. I knew this, at least logically, but it was good to hear. I started to wonder how they could be jumping to such drastic thoughts at the clinic. It was really bothering me, especially that they could give Brandon and I no credit at all and wouldn’t consider his walking to be a factor in weight loss. I understand that if BMI is low then its a problem, it doesn’t matter why. Too often once a child starts to lose weight with this disease it’s the start of a downward spiral, and the clinic wants to make sure their BMI is higher so they can stay healthy. I had worked greatly on keeping it up and being knowledgeable about when he is highly active. I know the importance of a higher BMI, but is there no margin in this disease? What about being human, does that get to happen in this disease?
I believe the answer to that question is yes, it does happen. So why not factor it in? We need to be smart about it of course, I would never allow my child to lose too much weight, but losing a few ounces and being fantastic in every other area is not going to send me to do something so drastic. Yes I will take it serious, and increase his feeding to make up for the higher calories needed, and had I known to factor in their metabolisms shooting up I would have started an increase sooner. This is one of those areas that I wish I had understood better prior to this situation. All of you parents with new walkers on your hands, or any kind of increase in activity or growth, pump up their diet right away. Brandon and I have been through a lot together and I would have to say it has been a rather challenging road. I have learned a lot and figured out what works in his CF body. It makes sense when it’s made simple, and it seems to be what makes Brandon excel in this disease.

No comments:

Post a Comment