I have had zero time to update the blog, so I decided that today I would put Lochlan in childcare and update you all on the little guy. Yes I know, I'm supposed to be exercising, but I tend to misuse the Y's childcare room when I just want to write or relax. The Y is super important for Lochlan because he has the chance to learn how to separate from me and socialize with other toddlers. The other interesting reason is that Lochlan needs to be exposed to as many viruses and pathogens before his transplant. His immune system will be suppressed for the life of the transplanted kidney and he will be better off if he is naturally immune to germs. I'm not sure where I would be without the great people at the Y. My greatest support comes from the women who care for the children in the chidcare room, Moms at preschool, and all of the fabulous women that always stop to ask me how Lochlan and Mommy are doing. I am also so grateful that I continue my love of Zumba even when I am feeling down and lazy.
Lochlan had his urethra repaired in Boston at the end of August, and had his vesicostomy closed a few weeks ago in Albany. So far, he is urinating out of his penis the way he should (fingers crossed). We are so happy because his kidney function has remained stable after they closed his vesicostomy. We will find out if the urine continues to reflux into his kidney next week. We are hoping that Lochlan will continue to pee, his bladder is working, and we won't have to continuously catheterize him or reimplant the ureter. I am really hoping that we can move past this because Lochlan has some other problems that we should address before he can get his transplant.
Next, we will need to schedule an MRI to investigate Lochlan's spinal defect. As far as we know, his tailbone is fused and rotated out. Unfortunately, it would not be a surprise if his spinal cord is tethered. If the cord is tethered, as he grows it could sever and cause neurological deficits. Fortunately, surgical intervention is a permanent cure. Parents of other VACTERL children remark that the specific surgery tends go smoothly without many complications.
The next priority is to follow-up with cardiology to figure out the extent of Lochlan's PFO. It is a hole between the upper chambers of the heart that usually closes when the child is born. We ran into some problems post-anesthesia in Boston, and the team was certain that his problem was exacerbated by the oxygenated blood mixing with the deoxygenated blood in the heart. The good news is that if he does need surgical intervention for that, it is done with ultrasound and a catheter inserted into a large vein. Compared to his many other surgeries, it seems minimally invasive.
Since I obsess over Lochlan's GI and weight gain problems, you probably all know that growth is always the problem that takes priority over everything. He continues to have little interest in eating, and tends to gag and vomit if he manages to get anything into his mouth. We are fortunate to have a very patient feeding therapist, and so far Lochlan enjoys his time in the highchair. I continue to kill myself by creating and making blenderized food for his feeding tube, only for it to end up all over my home and everyone's clothing. While I am amazed that his kidney function has remained stable, I know that part of it is because he hasn't had enough growth to stress the kidney. Lochlan hasn't gained any weight since before he was in Boston. There is one thing worse than watching your child starve, and that is to watch your child be happy to starve. After Lochlan vomits, he is happy. So far the only thing that Lochlan tolerates is breast milk. I stopped pumping a month ago, but a very special mama continues to pump for her baby and gives us the rest. We are so fortunate to have this liquid gold because the doctors allow us to feed it to him when he is supposed to have a clear liquid diet before and after procedures. It has kept him from needing IV fluids and the dreaded overnight admission to the hospital when he had the whole UTI debacle. Also, we give it to Lochlan overnight because he is able to easily digest it while he sleeps.
Although I constantly worry about Lochlan's quality of life, he is generally happy most of the time. He gets a shot every night and an especially painful one once a week, but we try to do it quickly and give him lots of snuggles afterwards. We have started teaching Lochlan that bath time is fun and not torture now that he is allowed to be submerged in water. It broke my heart the first few times we tried. Currently, he enjoys baths as long as we don't wash his hair and as long as Declan is in there with him. Declan continues to cheer his brother up when he is sad, and dutifully role models naughty behavior. Lochlan's favorite book is Brown Bear, Brown Bear What Do You See? His favorite word is turkey, and he loves to mimic an elephant. I am surprised by how much energy he has and how busy he is when he plays.
The years ahead will get tough, so we try and focus on being happy that we are not on dialysis yet, or making frequent visits to Boston. We depend on the incredible amount of kindness and support that you all give us. This time last year was especially rough, but we made it through with the help of our family and friends. We couldn't be happier to spend a somewhat normal holiday season together this year.
Saturday, November 22, 2014
Saturday, August 23, 2014
Getting ready for surgery.
We visited Boston Children's Hospital back in May. While we were there, we had some imaging and underwent neurological testing of the bladder. I was so impressed by the way that we were treated there that our decision to take Lochlan's urological care to Boston, now seems like a no-brainer. The good news is that Lochlan's bladder and lower GI function all seem intact. Lochlan's neurologist would like to do an MRI at some point to rule out a tethered spinal cord, but he gave us his blessing to go ahead and find a permanent way for Lochlan to urinate. We have booked the OR for this Friday.
In order to prevent Lochlan from undergoing unnecessary anesthesia, they plan on using a scope to evaluate Lochlan's urethral stricture, and then doing the surgery while he is still under anesthesia. The urology team is optimistic that they will be able to reconstruct his urethra, but they will not be certain until they use the scope. If they are unable to reconnect Lochlan's urethra, they will find another permanent solution. Lochlan's urologist has estimated that we will be in the hospital for 5 days and then we will need to stay in the area for another 2 weeks.
There are way too many factors to be nervous about. This week has been horrible. Lochlan has been vomiting non-stop and everyone has been sick (except Declan of course, knock on wood). My biggest fear is that Lochlan will not be well enough to get surgery, or his blood work will be awful. I have already taken 3 weeks off at work, and it will be impossible to get the time back if we have to reschedule. I'm also worried that reconstructing his urethra will result in more strictures and surgeries. Our number one priority has always been Lochlan's quality of life, and a surgery that leads to more surgeries is not what we want for Lochlan. It could also delay Lochlan's kidney transplant.
We have been trying to ignore the overall doom and gloom feeling that came with scheduling the surgery, but we just can't shake it. Every year we look forward to going to Martha's Vineyard with my parents, but we could not make it happen this year because of the surgery. Even last year, when we were at our lowest, we looked forward to celebrating the end of summer at the ocean. This year it felt like the summer ended before it even began because there was nothing fun to look forward to.
Adam and I will be taking turns staying Boston with Lochlan during the three weeks. We are so fortunate that we have family who have taken time off of work and rearranged their schedules to keep Declan on his routine and in preschool. My heart breaks thinking about spending so much time away from him, and I worry that Lochlan will miss Declan too.
Stress is at an all time high as we plan this trip. There are so many variables and things that could go wrong. I'm not sure that I will continue to pump while I am there alone. It has been hard enough pumping for the last 15 months. Lochlan's homemade blenderized diet will also be impossible to continue while there. I am so grateful for friends who have contributed by donating breast milk. One friends has pumped 100s of bags of milk for Lochlan. It amazes me how kind people have been. Lochlan is well loved for sure, and I have faith that the human spirit will continue to help us through tough times ahead. I am hoping that at the end of our trip it will just be a hurdle that we have crossed, and not have to go back.
Stress is at an all time high as we plan this trip. There are so many variables and things that could go wrong. I'm not sure that I will continue to pump while I am there alone. It has been hard enough pumping for the last 15 months. Lochlan's homemade blenderized diet will also be impossible to continue while there. I am so grateful for friends who have contributed by donating breast milk. One friends has pumped 100s of bags of milk for Lochlan. It amazes me how kind people have been. Lochlan is well loved for sure, and I have faith that the human spirit will continue to help us through tough times ahead. I am hoping that at the end of our trip it will just be a hurdle that we have crossed, and not have to go back.
Friday, May 16, 2014
Today, we celebrate life.
Like most blogs about people overcoming medical problems, I tend to focus on everything going wrong, but today I am intent on celebrating everything that has gone right. Today, Lochlan is a year old, and he is ALIVE. As I look back on his life, I am filled with gratitude that he is here with us today. This past few weeks, I have been following families who have lost life. As I pray for these families, I hold my boys and husband close because we are all still together and that is all that matters.
Lochlan's story of survival began at his gender ultrasound. My OB office immediately referred us to a perinatologist. The perinatologist quickly listed the problems seen on the ultrasound and suggested that we schedule a amniocentesis ASAP because if we wanted to terminate the pregnancy, we would have no time to waste. Before having children, Adam and I had already discussed that we would love any child that we were given, so that was not an option. The perinatologist had also mentioned that because Lochlan only had one artery in his umbilical cord, it would increase his chances of IUGR and miscarriage. We were also told that because of his renal anomalies, there would be a chance that he would run out of amniotic fluid. Despite conditions that began before Lochlan even had an umbilical cord, he thrived through the pregnancy.
Because Lochlan had a single umbilical artery, my obstetrician was uncomfortable with letting me go past my due date. In my true form, my initial feeling was to be obstinate and go against his directions. However, at the last visit, I spoke with his wife who is a kind nurse, and decided that I better trust their expertise. I was induced and once the contractions began to get strong, Lochlan's heart became distressed. The pain of the pitocin was so great that at one point the only thing that relieved the pain was marching in place. I am so grateful that the pitocin quickly moved Lochlan out. The umbilical cord was wrapped around his neck, but after being quickly removed, he began to scream. I remember being so relieved that he had survived birth.
I was falsely celebrating the end of a nightmare that evening, but it all came to an end when I had realized that he had no anus. Yes, I will never forget the way that the transferring NICU nurse had poked and prodded at Lochlan like he was a cadavor, but that was the first moment that I learned to pipe up for my boy. It made me and everyone in the room uncomfortable for me to tell her to end her assessment, but in the end Lochlan benefited because he was rushed to AMC for treatment. Since then, I always run the risk of being disliked, but it is the least I can do for him.
Lochlan has endured so much pain and suffering. Every time he is put under, I worry that he will not wake up. Then when the procedure is done, and he is screaming in pain for hours on end, I worry that he will never smile again or that he will be forever scarred. During every procedure, I feel guilty for putting him through torture, but when his smile returns, I am reassured that I am doing what is best for him. Lochlan has a long way to go, but I never thought that he would overcome everything he has in the past year. I can only hope that he will be a stronger individual because of it all.
A few weeks ago, I met a man who told me about his daughter who has some similar medical problems as Lochlan. I could tell that he was a Dad like Adam- kind, warm, and optimistic. He told me that his daughter's spirit is insurmountable. The light in this Dad's eyes was not what you would expect from a man with a sick child. She still struggles with health problems, but she is a happy young lady working to help others. As he spoke of her, I began to cry, not because I was sad for her, but because I want to speak of Lochlan the same way someday.
As we surrounded Lochlan and sang him Happy Birthday tonight, I was struck by how happy I was to be sitting there with him. This year has robbed us of so much joy, but I felt nothing but joy today because my little warrior made to his first birthday.
Lochlan's story of survival began at his gender ultrasound. My OB office immediately referred us to a perinatologist. The perinatologist quickly listed the problems seen on the ultrasound and suggested that we schedule a amniocentesis ASAP because if we wanted to terminate the pregnancy, we would have no time to waste. Before having children, Adam and I had already discussed that we would love any child that we were given, so that was not an option. The perinatologist had also mentioned that because Lochlan only had one artery in his umbilical cord, it would increase his chances of IUGR and miscarriage. We were also told that because of his renal anomalies, there would be a chance that he would run out of amniotic fluid. Despite conditions that began before Lochlan even had an umbilical cord, he thrived through the pregnancy.
Because Lochlan had a single umbilical artery, my obstetrician was uncomfortable with letting me go past my due date. In my true form, my initial feeling was to be obstinate and go against his directions. However, at the last visit, I spoke with his wife who is a kind nurse, and decided that I better trust their expertise. I was induced and once the contractions began to get strong, Lochlan's heart became distressed. The pain of the pitocin was so great that at one point the only thing that relieved the pain was marching in place. I am so grateful that the pitocin quickly moved Lochlan out. The umbilical cord was wrapped around his neck, but after being quickly removed, he began to scream. I remember being so relieved that he had survived birth.
I was falsely celebrating the end of a nightmare that evening, but it all came to an end when I had realized that he had no anus. Yes, I will never forget the way that the transferring NICU nurse had poked and prodded at Lochlan like he was a cadavor, but that was the first moment that I learned to pipe up for my boy. It made me and everyone in the room uncomfortable for me to tell her to end her assessment, but in the end Lochlan benefited because he was rushed to AMC for treatment. Since then, I always run the risk of being disliked, but it is the least I can do for him.
Lochlan has endured so much pain and suffering. Every time he is put under, I worry that he will not wake up. Then when the procedure is done, and he is screaming in pain for hours on end, I worry that he will never smile again or that he will be forever scarred. During every procedure, I feel guilty for putting him through torture, but when his smile returns, I am reassured that I am doing what is best for him. Lochlan has a long way to go, but I never thought that he would overcome everything he has in the past year. I can only hope that he will be a stronger individual because of it all.
A few weeks ago, I met a man who told me about his daughter who has some similar medical problems as Lochlan. I could tell that he was a Dad like Adam- kind, warm, and optimistic. He told me that his daughter's spirit is insurmountable. The light in this Dad's eyes was not what you would expect from a man with a sick child. She still struggles with health problems, but she is a happy young lady working to help others. As he spoke of her, I began to cry, not because I was sad for her, but because I want to speak of Lochlan the same way someday.
As we surrounded Lochlan and sang him Happy Birthday tonight, I was struck by how happy I was to be sitting there with him. This year has robbed us of so much joy, but I felt nothing but joy today because my little warrior made to his first birthday.
Tuesday, April 15, 2014
More GI dysfunction
After following our Dr's advice and taking a week off of Cyproheptadine, Lochlan is back to square one. He gags, retched, fusses, and vomits all day and night despite being on the medication that once helped him. We also gave a hypoallergenic formula a try with no luck. Lochlan does best on breast milk, but I don't make enough, and now that he is 11 months old, it is not nutritionally sufficient. He has lost weight since visiting Boston.
My obsession with Lochlan's nutrition hit a new high. I have been glued to feeding tube Facebook pages for over a week. It began as a great place to receive information from people that have lots of experience, but ultimately, I am discouraged by the massive volume of children with incurable GI disorders. I am depressed by the amount of children that suffer and the lack of support from the medical community. People are denied over and over for specialized formulas and basic supplies, but have no guidance for a blenderized diet or tube weening. There are people in the Midwest who's babies will go hungry if they are hit by a tornado because they don't have enough supplies to last a few days or electricity to charge the pump batteries. It makes me worry about how we will refrigerate breast milk, keep ice packs and charge Lochlan's pump this summer if we are hit by a storm.
After doing some research, I thought that maybe a blenderized diet would help Lochlan. The only basic recipe that didn't contain any allergens came from Seattle Children's Hospital. I was exhausted after work on Sunday, but I came home to make it. I was really hoping that it would help. We gave Lochlan two full feeds of breast milk and then started the homemade formula on Monday afternoon. Lochlan didn't vomit at all for the two breast milk feeds, but then began violently vomiting last night. It was a rough night to say the least. This morning was equally as rough. After getting everyone ready and pumping, I put Lochlan into the car seat to go to the gym. He vomited all over his car seat and the third outfit of the day. While I was trying to clean the mess up, Declan decided to act up. That was the moment that I called my mommy, and gave up. My mother rescued me, and by the time she made it over, the boys were back to being angels. She must think I am nuts.
As I write this, my house is destroyed and I am still in the clothes that I had intended to wear to the gym. My husband is home from work cooking dinner and simultaneously cleaning, the boys are playing nicely, and I look like the slacker of the year. There are days when I can only manage to pump every three hours, operate and clean Lochlan's feeding pump, get Lochlan to take naps, clean up vomit and milk spills, feed and play with Declan, and nothing else. Everyone seems to think that I should either exercise more or see a therapist to feel better. I haven't even had the time to get my teeth cleaned.
Life is overwhelming right now. I really want to be positive and gracious for all of the blessings in my life, but gratitude is scary. I know that the more I cherish life, it can be heart-breaking when life gets harder than it already is. Lochlan's prognosis gaurantees rough roads ahead. I'm still waiting for the guilt of baring a child with birth defects to subside, and hearing that God gave Lochlan to me for a reason, does not help.
My obsession with Lochlan's nutrition hit a new high. I have been glued to feeding tube Facebook pages for over a week. It began as a great place to receive information from people that have lots of experience, but ultimately, I am discouraged by the massive volume of children with incurable GI disorders. I am depressed by the amount of children that suffer and the lack of support from the medical community. People are denied over and over for specialized formulas and basic supplies, but have no guidance for a blenderized diet or tube weening. There are people in the Midwest who's babies will go hungry if they are hit by a tornado because they don't have enough supplies to last a few days or electricity to charge the pump batteries. It makes me worry about how we will refrigerate breast milk, keep ice packs and charge Lochlan's pump this summer if we are hit by a storm.
After doing some research, I thought that maybe a blenderized diet would help Lochlan. The only basic recipe that didn't contain any allergens came from Seattle Children's Hospital. I was exhausted after work on Sunday, but I came home to make it. I was really hoping that it would help. We gave Lochlan two full feeds of breast milk and then started the homemade formula on Monday afternoon. Lochlan didn't vomit at all for the two breast milk feeds, but then began violently vomiting last night. It was a rough night to say the least. This morning was equally as rough. After getting everyone ready and pumping, I put Lochlan into the car seat to go to the gym. He vomited all over his car seat and the third outfit of the day. While I was trying to clean the mess up, Declan decided to act up. That was the moment that I called my mommy, and gave up. My mother rescued me, and by the time she made it over, the boys were back to being angels. She must think I am nuts.
As I write this, my house is destroyed and I am still in the clothes that I had intended to wear to the gym. My husband is home from work cooking dinner and simultaneously cleaning, the boys are playing nicely, and I look like the slacker of the year. There are days when I can only manage to pump every three hours, operate and clean Lochlan's feeding pump, get Lochlan to take naps, clean up vomit and milk spills, feed and play with Declan, and nothing else. Everyone seems to think that I should either exercise more or see a therapist to feel better. I haven't even had the time to get my teeth cleaned.
Life is overwhelming right now. I really want to be positive and gracious for all of the blessings in my life, but gratitude is scary. I know that the more I cherish life, it can be heart-breaking when life gets harder than it already is. Lochlan's prognosis gaurantees rough roads ahead. I'm still waiting for the guilt of baring a child with birth defects to subside, and hearing that God gave Lochlan to me for a reason, does not help.
Wednesday, March 26, 2014
Big Decisions in Boston
Our Urologist here at home recommended that we decide where we will have Lochlan's bladder and urethra testing and procedures done. We headed to Boston for two days to see lots of doctors, and check out the neighborhood to get a feel for a log-term stay. I thought that it would be a very tough decision, but it became clear by the end of our stay.
We were able to stay very close to the hospital this time in the Longwood neighborhood. We were pleasantly surprised that it felt family-friendly and not like a major big city. Before our appointments, I took Lochlan for a long walk and felt safe surrounded by people walking to work and children walking to school. The close proximity to Trader Joe's and Whole Foods is a bonus. The hardest part about the whole trip was being away from Declan. He was well-cared for by his grandparents, but the Woodard clan is not complete without Declan.
Our first appointment was with the Urologist. The bad news is that he is concerned that Lochlan's bladder may not be neurologically intact. Because he has a congenital spine deformity and an imperforate anus, it is common that the bladder does not function the way that it should. They would like to do some urodynamic testing with a neurologist before proceeding to surgery on the urethra. The good news is that Boston has the experience and foresight to solve this problem before Lochlan has a kidney transplant. He explained to us that we do not need to proceed urgently, but the surgical procedures should be completed before he is able to control his bladder. We really like the Urologist, and we feel strongly that Lochlan's best shot at having urinary continence someday depends on going to Boston.
It will be a financial risk for us because our insurance will not cover travel expenses, and I will need to miss lots of work to travel with Lochlan. It also may mean that I will need to travel alone while Adam stays behind to work and to care for Declan. I am saddened that we may not be able to all stay together for frequent trips, and I will feel guilty for not spending time with Declan. However, I just know that if Lochlan's outcome was poor at Albany Med, I would never forgive myself. If things didn't work out in Albany, we would find ourselves in Boston anyhow.
The rest of our appointments went really well. All of the doctors could not believe how healthy he looks and gushed that he was such a good baby for all of the exams. The transplant team said that unfortunately, Lochlan's trouble eating and inability to hold large feeds is common amongst children with renal disease. We will continue to work on the feeding, but I'm not going to obsess over it anymore because in time, he will eat. The GI doctor was very kind and knowledgeable as well. We are going to start Lochlan on a supplement that should help. Otherwise, they agreed that Lochlan is getting great care from us and his doctors at home.
I like Boston Children's because they always make us feel like we can expect Lochlan to have a long full life. It is so uplifting for me to imagine a life for Lochlan that does not include feeding tubes or devices. Little by little I have allowed myself to have these thoughts because it helps me make important decisions that will affect Lochlan for the rest of his life.
We were able to stay very close to the hospital this time in the Longwood neighborhood. We were pleasantly surprised that it felt family-friendly and not like a major big city. Before our appointments, I took Lochlan for a long walk and felt safe surrounded by people walking to work and children walking to school. The close proximity to Trader Joe's and Whole Foods is a bonus. The hardest part about the whole trip was being away from Declan. He was well-cared for by his grandparents, but the Woodard clan is not complete without Declan.
Our first appointment was with the Urologist. The bad news is that he is concerned that Lochlan's bladder may not be neurologically intact. Because he has a congenital spine deformity and an imperforate anus, it is common that the bladder does not function the way that it should. They would like to do some urodynamic testing with a neurologist before proceeding to surgery on the urethra. The good news is that Boston has the experience and foresight to solve this problem before Lochlan has a kidney transplant. He explained to us that we do not need to proceed urgently, but the surgical procedures should be completed before he is able to control his bladder. We really like the Urologist, and we feel strongly that Lochlan's best shot at having urinary continence someday depends on going to Boston.
It will be a financial risk for us because our insurance will not cover travel expenses, and I will need to miss lots of work to travel with Lochlan. It also may mean that I will need to travel alone while Adam stays behind to work and to care for Declan. I am saddened that we may not be able to all stay together for frequent trips, and I will feel guilty for not spending time with Declan. However, I just know that if Lochlan's outcome was poor at Albany Med, I would never forgive myself. If things didn't work out in Albany, we would find ourselves in Boston anyhow.
The rest of our appointments went really well. All of the doctors could not believe how healthy he looks and gushed that he was such a good baby for all of the exams. The transplant team said that unfortunately, Lochlan's trouble eating and inability to hold large feeds is common amongst children with renal disease. We will continue to work on the feeding, but I'm not going to obsess over it anymore because in time, he will eat. The GI doctor was very kind and knowledgeable as well. We are going to start Lochlan on a supplement that should help. Otherwise, they agreed that Lochlan is getting great care from us and his doctors at home.
I like Boston Children's because they always make us feel like we can expect Lochlan to have a long full life. It is so uplifting for me to imagine a life for Lochlan that does not include feeding tubes or devices. Little by little I have allowed myself to have these thoughts because it helps me make important decisions that will affect Lochlan for the rest of his life.
Friday, February 14, 2014
Happy Valentine's Day
What is unconditional love? Let me tell you. It is being kept awake all night by an infant screaming and puking, but with one smile at dawn forgetting about it all. Unconditional love is also bickering about who is going to stay up with the baby, then waking up, looking at your spouse and knowing that there is no one in this world that you would rather share this brutiful life with. We were handed a terrible hand of cards, but Adam and I can still count our blessings that we have each other and our boys.
My littlest valentine is such a sweet happy boy despite his illnesses. I never get tired of people telling me that he is such a good baby. Hopefully his sunny demeanor will carry him through rough times ahead.
Lately, he hasn't been able to tolerate his medication that once worked well. He continues to vomit frequently, and we haven't seen much weight gain. He had an unremarkable upper GI series to check for any anatomical reasons for the vomiting. Again, it's a relief that the test was normal, but there was a part of me that hoped that there was something that explained the vomiting. As he becomes more mobile, we are becoming more and more anxious about putting him in his crib with the feeding tube and the accompanying electrical cord. Sleeping at night is not so easy when I am constantly worrying about the cords and Lochlan aspirating on his vomit. At this point, we have exhausted our options to help him gain weight. We continue to wait for a miracle.
A NYS Early Intervention team is going to come next week to assess whether or not he qualifies for their services. If he does qualify, we will have access to a speech pathologist, occupation therapists, physical therapists and a nutritionist on a regular basis. We have only had inpatient contact with a nutritionist, and have been told that there isn't a nutritionist available on an outpatient basis. As I research our options, I can see that there is a 4 week feeding program at CHOP, but there is a long wait and it would require that I stay in Philadelphia for the entire time.
Also, we saw Lochlan's new Urologist. She works with Lochlan's previous urologist, but she has office hours closer to home which is a huge bonus. Despite not being warm and fuzzy, I am pleased with her straightforward bedside manner. She said that her professional opinion is that Lochlan's urethra will function someday, but the timing of his kidney transplant will complicate the process.
In other baby news, Lochlan has four adorable little teeth now. He says Mama, Dada, and Baba, which either means Barbara (his babysitter) or brother. We continue to work on crawling and standing, but he gets extra tired and fussy if we push him too hard. He lives in the Baby K'tan carrier, which I don't mind because it is the only time that we have to snuggle just the two of us.
My littlest valentine is such a sweet happy boy despite his illnesses. I never get tired of people telling me that he is such a good baby. Hopefully his sunny demeanor will carry him through rough times ahead.
Lately, he hasn't been able to tolerate his medication that once worked well. He continues to vomit frequently, and we haven't seen much weight gain. He had an unremarkable upper GI series to check for any anatomical reasons for the vomiting. Again, it's a relief that the test was normal, but there was a part of me that hoped that there was something that explained the vomiting. As he becomes more mobile, we are becoming more and more anxious about putting him in his crib with the feeding tube and the accompanying electrical cord. Sleeping at night is not so easy when I am constantly worrying about the cords and Lochlan aspirating on his vomit. At this point, we have exhausted our options to help him gain weight. We continue to wait for a miracle.
A NYS Early Intervention team is going to come next week to assess whether or not he qualifies for their services. If he does qualify, we will have access to a speech pathologist, occupation therapists, physical therapists and a nutritionist on a regular basis. We have only had inpatient contact with a nutritionist, and have been told that there isn't a nutritionist available on an outpatient basis. As I research our options, I can see that there is a 4 week feeding program at CHOP, but there is a long wait and it would require that I stay in Philadelphia for the entire time.
Also, we saw Lochlan's new Urologist. She works with Lochlan's previous urologist, but she has office hours closer to home which is a huge bonus. Despite not being warm and fuzzy, I am pleased with her straightforward bedside manner. She said that her professional opinion is that Lochlan's urethra will function someday, but the timing of his kidney transplant will complicate the process.
In other baby news, Lochlan has four adorable little teeth now. He says Mama, Dada, and Baba, which either means Barbara (his babysitter) or brother. We continue to work on crawling and standing, but he gets extra tired and fussy if we push him too hard. He lives in the Baby K'tan carrier, which I don't mind because it is the only time that we have to snuggle just the two of us.
Thursday, January 30, 2014
Elephants
This past year has been extremely stressful and trying. At times my faith in God and divine decree has wavered. This is not the first time in my life that I've questioned my faith, but as I look back on all of those instances, I am grateful for the events that have caused me great pain. In Lochlan's case, I doubt that anything good could come of his suffering. There have been times along this journey when I have prayed that I would rather let him go to God than have him with me and let him suffer. My guilt about putting him through multiple surgeries, testing, and the everyday discomforts of renal disease runs deep. Ultimately our hope is that one day he looks up at the clouds in the sky and feels happy that he is alive. Maybe then it will all be worth it.
It is an everyday struggle to stop myself from focusing on the pain. I have always thought that living in the moment is best, but lately I've realized that I cannot dwell on the moment. I must look towards the future, and reach for the life vests handed to me. Sunday was an ordinary day, but for some reason I couldn't shake the sadness and took multiple trips to the employee bathroom to cry. Later in the afternoon one of my coworkers came over just to say hi and when she realized I was having a sad day, she hugged me, and that is all that it took to pull me out. Along the way, in our most miserable times, our friends, coworkers, family members, and kind strangers have reached out to us at the exact moment before we fell off of the figurative cliff.
More than any other medical problem that Lochlan has, his struggle to eat and gain weight has been the hardest on me. I feel strongly about healthy food, so feeding him through a tube feels inhuman and lacks the soothing and bonding experience of bottle or breast feeding. In addition to my ambivalence about tube feeding, after seeing a bill go to our insurance for $8000 to rent the kangaroo pump and supplies, I was at a breaking point this week. Last October, my coworkers my raised enough money to cover our deductible this year. We were so relieved to stop worrying about medical bills and started focusing on getting Lochlan the best care. However, it seemed like a brief honeymoon when the funds would be depleted in one fell swoop.
Along came a ray of light on Tuesday. An extraordinary woman named Erin Musto had reached out to our family before the Holidays. Her foundation Maddie's Mark provides "best days ever" to critically ill kids. After losing her daughter to an inoperable brain tumor two years ago, she began helping other families to keep Maddie's spirit alive. Four kind women showed up on Tuesday and created a bright and cheerful nursery that Lochlan can grow up in. For me it is more than just a magazine worthy room. It is a place that I can go and imagine a brighter future for him when I am feeling afraid and doubtful. I can see us reading stories in the glider and I can see him standing in his crib saying Mommy when he wakes up.
Tuesday night, my coworkers organized a fundraiser at the Saratoga Paint and Sip. It felt so good to get out with my friends. Saratoga Paint and Sip is an incredible local business that opened their doors to us to help raise money for Lochlan. I am so grateful for the financial help, but I was most grateful for a night out that allowed me to feel like a normal Mom getting out of the house to have a good time. Then, yesterday, Life Maid Simple came to my house and cleaned it from top to bottom. Erin contacted them when she heard about our family. Life Maid Simple fundraises to provide families with clean homes free of charge when they are struggling with medical problems. Needless to say, I felt like a new woman when I arrived home from work last night.
When Erin was here, she brought an elephant for each boy. I asked her what the elephants symbolized. She said that when Maddie was diagnosed, her famaily was surrounded by people that wanted to help. When she created her charity, they began making and selling elephants to raise money because the elephant herd will surround a sick elephant. I absolutely love that symbolization. As people continue to surround us (like the elephants) I am starting to believe that everything will be ok.
It is an everyday struggle to stop myself from focusing on the pain. I have always thought that living in the moment is best, but lately I've realized that I cannot dwell on the moment. I must look towards the future, and reach for the life vests handed to me. Sunday was an ordinary day, but for some reason I couldn't shake the sadness and took multiple trips to the employee bathroom to cry. Later in the afternoon one of my coworkers came over just to say hi and when she realized I was having a sad day, she hugged me, and that is all that it took to pull me out. Along the way, in our most miserable times, our friends, coworkers, family members, and kind strangers have reached out to us at the exact moment before we fell off of the figurative cliff.
More than any other medical problem that Lochlan has, his struggle to eat and gain weight has been the hardest on me. I feel strongly about healthy food, so feeding him through a tube feels inhuman and lacks the soothing and bonding experience of bottle or breast feeding. In addition to my ambivalence about tube feeding, after seeing a bill go to our insurance for $8000 to rent the kangaroo pump and supplies, I was at a breaking point this week. Last October, my coworkers my raised enough money to cover our deductible this year. We were so relieved to stop worrying about medical bills and started focusing on getting Lochlan the best care. However, it seemed like a brief honeymoon when the funds would be depleted in one fell swoop.
Along came a ray of light on Tuesday. An extraordinary woman named Erin Musto had reached out to our family before the Holidays. Her foundation Maddie's Mark provides "best days ever" to critically ill kids. After losing her daughter to an inoperable brain tumor two years ago, she began helping other families to keep Maddie's spirit alive. Four kind women showed up on Tuesday and created a bright and cheerful nursery that Lochlan can grow up in. For me it is more than just a magazine worthy room. It is a place that I can go and imagine a brighter future for him when I am feeling afraid and doubtful. I can see us reading stories in the glider and I can see him standing in his crib saying Mommy when he wakes up.
Tuesday night, my coworkers organized a fundraiser at the Saratoga Paint and Sip. It felt so good to get out with my friends. Saratoga Paint and Sip is an incredible local business that opened their doors to us to help raise money for Lochlan. I am so grateful for the financial help, but I was most grateful for a night out that allowed me to feel like a normal Mom getting out of the house to have a good time. Then, yesterday, Life Maid Simple came to my house and cleaned it from top to bottom. Erin contacted them when she heard about our family. Life Maid Simple fundraises to provide families with clean homes free of charge when they are struggling with medical problems. Needless to say, I felt like a new woman when I arrived home from work last night.
When Erin was here, she brought an elephant for each boy. I asked her what the elephants symbolized. She said that when Maddie was diagnosed, her famaily was surrounded by people that wanted to help. When she created her charity, they began making and selling elephants to raise money because the elephant herd will surround a sick elephant. I absolutely love that symbolization. As people continue to surround us (like the elephants) I am starting to believe that everything will be ok.
Friday, January 17, 2014
Good days
Yesterday was a busy doctor day. Lochlan's appointment with his GI doctor was very productive. I feel like we communicated well and agreed on a plan. We have been given the OK to stop the Prilosec to see what happens. Initially, I'm sure that there will be a rebound effect, and the vomiting will increase for a bit, but hopefully after that, he won't need it anymore. We agreed to have an early intervention speech pathologist meet with us to help us get Lochlan to start eating solids. The video X-ray that looks at swallowing will be put on hold for the time being, but the X-ray of his stomach and small intestines is imperative. It is actually something that should have been done before the feeding tube was placed. Unfortunately we will need to wait a few weeks for that.
We also saw his pediatrician. Lochlan had a 6-month check up, but because he was so ill, we waiting to get his immunizations. He did really well with the shots yesterday, but today he was a little cranky and vomited more than usual. At his appointment he weighed 15lbs and measured 26.5in. Yes, he is still tiny, but we are just happy to be on the chart again. We also received some lab work from his nephrologist. Not much good news there, but nothing terrible. He continues to be anemic, his white blood cell count has been chronically elevated without a know cause, and his kidney function is slightly worse than last time.
Aside from the medical aspect, Lochlan has been doing well. He has been smiling a lot, interacting more, and sleeping decently. I would say that developmentally he is little behind, but not much. This week he has started making more and more sounds. The most discerning sound is the k sound when he sees the cat. I thought that maybe he would say Mama or Dada, but kitty cat may be his first word.
We have started having more good days than bad days around here. It's always a good day when we are all home together. Adam likes to say that we are a seal team and I agree. No matter the predicament, Adam and I seem to get through any together. However, when we are on solo missions, or home without one another, the little ones outnumber us and things get hairy. Lately, the days have been smooth. I guess I have just adapted to the continuous feeds and the vomiting. Also, Lochlan has been playing independently, so pumping has gotten easier. Since we are not sure if the peace will last, we decided that it would be a good time to toilet train Declan. I am so happy to finally have the time to do this with Declan, but it makes me sad. Lochlan will most likely not be able to ever be traditionally toilet trained. Sometimes it can be overwhelmingly challenging to not focus on all of the things that Lochlan will miss out on.
We also saw his pediatrician. Lochlan had a 6-month check up, but because he was so ill, we waiting to get his immunizations. He did really well with the shots yesterday, but today he was a little cranky and vomited more than usual. At his appointment he weighed 15lbs and measured 26.5in. Yes, he is still tiny, but we are just happy to be on the chart again. We also received some lab work from his nephrologist. Not much good news there, but nothing terrible. He continues to be anemic, his white blood cell count has been chronically elevated without a know cause, and his kidney function is slightly worse than last time.
Aside from the medical aspect, Lochlan has been doing well. He has been smiling a lot, interacting more, and sleeping decently. I would say that developmentally he is little behind, but not much. This week he has started making more and more sounds. The most discerning sound is the k sound when he sees the cat. I thought that maybe he would say Mama or Dada, but kitty cat may be his first word.
We have started having more good days than bad days around here. It's always a good day when we are all home together. Adam likes to say that we are a seal team and I agree. No matter the predicament, Adam and I seem to get through any together. However, when we are on solo missions, or home without one another, the little ones outnumber us and things get hairy. Lately, the days have been smooth. I guess I have just adapted to the continuous feeds and the vomiting. Also, Lochlan has been playing independently, so pumping has gotten easier. Since we are not sure if the peace will last, we decided that it would be a good time to toilet train Declan. I am so happy to finally have the time to do this with Declan, but it makes me sad. Lochlan will most likely not be able to ever be traditionally toilet trained. Sometimes it can be overwhelmingly challenging to not focus on all of the things that Lochlan will miss out on.
Tuesday, January 14, 2014
To test or not to test
Since starting Lochlan on Cyproheptadine, he has improved. He mostly only vomits in the morning, and rarely vomits at night. We haven't tried to give him a bolus feed yet, but he seems to be doing well with the continuous feed. The medication makes him drowsy, so he has also been sleeping better. If his kangaroo pump didn't alarm at 4am, he would probably sleep better. Unfortunately, the medication will stop working after a while, so we may need to take him off of it and put him back on it intermittently. I also can't stop worrying about how it is affecting his body.
Because the medication is working well on Lolchlan, it leads me to believe that he has slow gastric emptying or gastroparesis. The GI doctor still wants him to continue taking Prilosec, and has recommended a swallowing video using barium dye. Lochlan has had his fair share of radiation, so we think that we will refuse the test. We would like to at least meet with a speech pathologist and discuss Lochlan's issues. Every speech pathologist that I have met is exceedingly knowledgeable and dedicated to their work. If a speech pathologist agrees and thinks that the swallowing video is necessary, then we will go ahead with it. The other test that Lochlan's surgeon recommended is an X-ray of the stomach and small intestine after dye is injected into his feeding tube. I am actually very interested in seeing what that would show, but again, I'm not keen on exposing Lochlan to more radiation. I'm also not so sure that Lochlan could keep a belly full of dye down, and the test would just be useless. It's a catch-22, but I'm set on doing what's best for Lochlan. Lochlan will see the GI doctor on Thursday. I'm praying that she will listen to what we want for Lochlan and work with us, instead of against us.
Because the medication is working well on Lolchlan, it leads me to believe that he has slow gastric emptying or gastroparesis. The GI doctor still wants him to continue taking Prilosec, and has recommended a swallowing video using barium dye. Lochlan has had his fair share of radiation, so we think that we will refuse the test. We would like to at least meet with a speech pathologist and discuss Lochlan's issues. Every speech pathologist that I have met is exceedingly knowledgeable and dedicated to their work. If a speech pathologist agrees and thinks that the swallowing video is necessary, then we will go ahead with it. The other test that Lochlan's surgeon recommended is an X-ray of the stomach and small intestine after dye is injected into his feeding tube. I am actually very interested in seeing what that would show, but again, I'm not keen on exposing Lochlan to more radiation. I'm also not so sure that Lochlan could keep a belly full of dye down, and the test would just be useless. It's a catch-22, but I'm set on doing what's best for Lochlan. Lochlan will see the GI doctor on Thursday. I'm praying that she will listen to what we want for Lochlan and work with us, instead of against us.
Saturday, January 4, 2014
Eating
Since Lochlan's last surgery, he has been vomiting more than ever. He has only gained half of a pound in 8 weeks, and we are feeling extremely overwhelmed. The only feedback from his GI doctor that we have been given was to increase his dose of Prilosec. I am not a doctor, but from the research that I have gathered, GERD is diagnosed in babies that "spit up" after meals. Lochlan gags, wretches, and projectile vomits all day long especially when he puts toys or his fingers into his mouth. The vomiting continues all night long requiring lots of clothing and linen changes. He gets the most tolerable amount of fortified breast milk on a continuous feed and he is constantly connected to his pump. To make matters worse, he has a cold this week, and also vomits when he coughs.
His GI doctor will be back on Monday, and the plan is to add another medication that increases appetite and gastric motility. Unfortunately the drug is similar to Benadryl and may make him drowsy. I am so torn on giving him yet another drug. I wonder how it will affect his brain and body. Once we start the new drug, I'm going to request that we wean Lochlan off of Prilosec considering it has never helped him. In fact, I feel like it is the nastiest overprescribed medication out there. We are forced to give it to him first thing in the morning on an empty stomach. The second I inject it into his feeding tube, I hear his stomach churn and then he dry-heaves for a few minutes. Twenty minutes later, I offer a bottle which winds up on my clothing, his clothing and the floor shortly after.
Lochlan will be 8 months old in less than 2 weeks, but has yet to keep any solid food down. Everything that Lochlan has tasted, has caused him to vomit within seconds. It makes me so sad that it may be years before he could possibly enjoy food. Yet not one doctor has been able to direct me to a feeding clinic or at least a speech and/or an occupational therapist. I'm hoping that if I reach out to Lochlan's developmental nurse practitioner, she will be able to point us in the right direction.
My guess is that we will get strung along with tests, exposing him to more radiation, but without gaining any useful knowledge. We have another trip planned to go to Boston later in January to see a GI doctor, but I'm not sure if they could help us either. Adam and I are problem-solvers and we discuss solutions constantly. Today we discussed taking Lochlan completely off of the tube feed, and letting him eat when he is hungry just to reset a natural feeding cycle. We agree that he is so far from what is natural, that that is the root of his issues. Unfortunately, we could risk dehydration and another episode of acute renal failure. I've lost my faith in medicine right now, so all I have left is prayer. I pray that our sweet boy gets some relief soon. Please, if you are reading this, pray that Lochlan stops vomiting and starts eating solid food.
His GI doctor will be back on Monday, and the plan is to add another medication that increases appetite and gastric motility. Unfortunately the drug is similar to Benadryl and may make him drowsy. I am so torn on giving him yet another drug. I wonder how it will affect his brain and body. Once we start the new drug, I'm going to request that we wean Lochlan off of Prilosec considering it has never helped him. In fact, I feel like it is the nastiest overprescribed medication out there. We are forced to give it to him first thing in the morning on an empty stomach. The second I inject it into his feeding tube, I hear his stomach churn and then he dry-heaves for a few minutes. Twenty minutes later, I offer a bottle which winds up on my clothing, his clothing and the floor shortly after.
Lochlan will be 8 months old in less than 2 weeks, but has yet to keep any solid food down. Everything that Lochlan has tasted, has caused him to vomit within seconds. It makes me so sad that it may be years before he could possibly enjoy food. Yet not one doctor has been able to direct me to a feeding clinic or at least a speech and/or an occupational therapist. I'm hoping that if I reach out to Lochlan's developmental nurse practitioner, she will be able to point us in the right direction.
My guess is that we will get strung along with tests, exposing him to more radiation, but without gaining any useful knowledge. We have another trip planned to go to Boston later in January to see a GI doctor, but I'm not sure if they could help us either. Adam and I are problem-solvers and we discuss solutions constantly. Today we discussed taking Lochlan completely off of the tube feed, and letting him eat when he is hungry just to reset a natural feeding cycle. We agree that he is so far from what is natural, that that is the root of his issues. Unfortunately, we could risk dehydration and another episode of acute renal failure. I've lost my faith in medicine right now, so all I have left is prayer. I pray that our sweet boy gets some relief soon. Please, if you are reading this, pray that Lochlan stops vomiting and starts eating solid food.
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