Hello! I’m very happy to finally have a moment to write. Dear friend, it’s been a wild ride lately. I know this post will be way too long, but it is here for those who are interested in knowing more about our journey.
For those new to the blog, our precious third son, Alan, has Schizencephaly, meaning he has clefts (holes) throughout his brain. He has seizures that are very rare thanks to his meds, he can’t see very well (was diagnosed with a condition called Cortical Vision Impairment), he can’t move very well apart from a few jerky arm movements, at 16 months has trouble holding himself up even when supported in a highchair, is fed primarily through a feeding tube due to feeding difficulties, sometimes coos, smiles THE most beautiful smile usually about once a day, loves his mom and dad and brothers, has a very calm, sweet, brave and stalwart personality, and is completely awesome.
August 2018 (10 months old) – Alan was doing pretty good this month until he contracted a run of the mill cold virus that did a number on his breathing. It came on really suddenly. I used the albuterol we had gotten for him in June when he had Bronchiolitis, but despite all my efforts, his breathing got more and more labored until we finally decided around 2 am to take him into the ER at Children’s Medical Center in Plano.
After a very scary 24 hours involving tons of docs and nurses freaking out when we first got there and Alan having to wear a really weird looking CPAP mask for a while, he quickly started turning around and we were back home within 3 days of our admission. We were sent home with oxygen tanks and this weird “OXYGEN IN USE” sticker we had to place on our front door in case of a fire. Life went on as usual.
September – November 2018 (11 – 13 months old) – I believe September was the month I started taking Alan to outpatient physical therapy twice a week in Rockwall, about 25 minutes away. This was a good experience primarily because I learned some really good stretches I could do with Alan at home to keep him from getting too stiff. I also loved getting to know his Physical Therapist, Erin, and hearing her speak about her and her husband’s struggle with infertility and how God was using that to shape them and work through them to others who are struggling. I found her attitude inspiring and refreshing. I know a bit about that struggle and have sisters and sisters in Christ who have struggled much with this brand of heartache, so I’m sure she must be relying on God’s strength in order to walk through this and not become bitter.
I believe October was the month we switched from Physical Therapy to Feeding Therapy, this time at a clinic a little closer to home, in Allen, Texas. Alan was eating purees every day and drinking a thickened bottle of formula, but we wanted to see if he could start eating more effectively with some support. I quickly grew to love his feeding therapists as well! Alaina and Nicole were like angels for Alan. They loved him and did their best for him, using e-stim therapy. He did pretty well the first month and a half. Sadly, towards the end of November, he started having more issues with swallowing solid foods.
December, 2018 (14 months old) – By the second week of December I had to face the truth: Alan’s ability to swallow was going downhill quickly. I still don’t know why this happened other than his Schizencephaly, but I realized at one point that I had gone from casually putting all his baby food through the food mill to double-pureeing all of his food through the mill and still worrying that he would cough or choke because he had started coughing and choking on nearly everything I tried to feed him other than his bottle.
He was always able to take a bottle. However, he did this pretty slowly, so it wasn’t enough for him to thrive. He was able to take about 12 oz of pedisure (thickened) a day and went from eating three pretty decent solid meals a day in October (although honestly, it took me at least an hour to feed him each meal) to taking about half of what he had been taking by mouth and we would just have to stop because he was coughing and choking too much, despite a ton of attention being paid to the consistency of the food, and despite the fact that we were going to feeding therapy twice a week.
During one of his feeding therapy sessions where he was choking on nearly every bite, his sweet therapist, Alaina, looked at me sympathetically and said, “Have you guys thought about getting a G tube for him?” She told me lots of positive things about these types of feeding tubes. Her compassion and concern for Alan and for us was evident when she added, “I’m sorry that this is your normal. It shouldn’t have to be.”
After finding satisfactory answers to my initial fears of having a G tube (Gastric tube) placed (I was worried that this would hinder his ability to one day eat by mouth more successfully but I was told by many that, on the contrary, having a G tube would allow Alan to relax and be able to enjoy his experiences of taking food by mouth instead of having to associate eating with a fear of choking), Jim and I quickly got on board and were able to having him admitted to Children’s Medical Center in Dallas in order to begin the process of getting a G tube on December 12. We had no idea the series of unfortunate events that were about to unfold along the journey to getting Alan his much needed G tube.
The first thing they did in the hospital after all the initial questions and paperwork was to put an NG (Naso-Gastric) tube in Alan. Of course he did not appreciate having a tiny tube placed through his nose, down his throat, and into his stomach, but they explained that we had to do this in order to see how he would tolerate feedings directly to his stomach and to find out how much milk he could tolerate and on what timetable.
I informed the hospital staff that Alan was currently consuming about 12 oz a day of pediasure and that he had been eating three solid meals a day up until about 3 weeks ago when his ability to eat went steadily downhill. For some reason they decided that we needed to try to give him about twice as much formula as he had previously been getting by feeding him four times during the day and also overnight on a low dose on the feeding pump for 10 hours. I felt fairly sure this was not going to go well because it just seemed common sense to me that no one can just up and start eating twice as much as they had been eating because it would be too big of a shock to the system. But they insisted that we try it because he was underweight.
The first 24 hours of the new feeding schedule seemed to go alright, so I started thinking they knew what was best for Alan better than I did. I think it was a day and a half after we were admitted that he came down with a fever that lasted over 2 days. They still wanted to continue with the feedings but I convinced them to at least give him a few feedings of half formula and half pedialyte since he was so sick. Still, he was vomiting every few hours. It was unclear at the time if he just had an upset stomach along with the fever, or if he was vomiting due to being overfed. It was so confusing and stressful.
We were admitted on a Wednesday evening and the plan was to stay over the weekend and have his G tube surgery on Monday morning. However, his fever didn’t break until Monday morning, so surgery was cancelled. We were sent home with the NG tube still in him and with a doctor ordered feeding plan that still involved twice as many ounces as he had been taking in a day prior to being admitted. We had no make up date set for getting the G tube placed because the holidays were just around the corner and we were still hoping we could travel to see family.
Once we got home, it quickly became clear that we wouldn’t be traveling north to see either of our families over the holiday break. It took us about a week to figure out, but we eventually stopped using the pump altogether in favor of four bolus feeds a day, and I quickly began experimenting with getting very thin purees to go down the NG tube. For some reason, Alan did not tolerate pump feedings very well at all. Something about the experience made him much more likely to vomit than being fed in our arms or in his highchair all at once.
One time while feeding him in his baby chair with the pump, he vomited so severely that the NG tube actually came up from his stomach and was hanging out of his mouth. After I realized what had happened it took everything in me to not completely freak out and just calmly remove the tape holding the tube to his cheek and pull it out through his nose. Many experiences similar to this one convinced us that the pump and Alan simply did not get along. Also, a completely liquid diet did not seem to be working well for our prone to reflux Alan. We tried a food-based formula called Kate Farms and that seemed to help a little, but once I started mixing in some baby food we noticed things get even better.
I would highly recommend the book “Complete Tubefeeding” by Eric Aadhar O’Gorman for anyone with a child with any type of feeding tube. He has an invaluable section in that book about different herbs and spices that are very helpful for digestive issues, including reflux. I have been making and giving Alan a homemade herbal tea with things like Anise, Fennel, Caraway, Chamomile and Ginger everyday ever since I read this section. He also has a wealth of useful and interesting information related to every issue imaginable related to having or being a “tubie.”
One of the biggest tips I ran across in my early days of trying out a “blended diet” (feeding tubies real food purees) for Alan was so simple and helpful. Here it is:
When using a blended diet, put everything you want to feed your tubie through a fine mesh strainer before pushing it through the syringe and into the tube.
This was such a “duh” moment and a life-changing moment when I first read this tip online somewhere. One of the main problems with a blended diet is the issue of clogging the tube. But I have found that this issue is pretty easily dealt with by putting everything first through a fine mesh strainer. We have still dealt with a few clogs, but they haven’t ever been all that hard to resolve through simple means (pushing some liquid through or back flowing the syringe to remove the clog or smacking the tube against a hard surface in order to dislodge the item).
I cannot recommend a blended diet highly enough. No matter what some professionals may tell you in the hospital, I can assure you that a blended diet has been the right choice for Alan. Having real food in his tummy, including a small amount of spices that are very helpful for digestion (turmeric, coriander, cinnamon, etc) has reduced his reflux to the point where we went from being quite certain we wanted to have a nissen fundoplication (procedure where they wrap part of the stomach around the lower part of the esophagus in order to prevent reflux and vomitting) performed at the time of his G tube surgery, to deciding that that would not be necessary after all.
We struggled through January, having to use tremendous force just to get the pureed food to go through the long and tiny NG tube three times a day, and simultaneously dealing with a lot of coughing with mucous and all sorts of different illnesses popping up for Alan and our other two boys. We were prescribed a suction machine that we are still waiting on for Alan to help clear his airway more easily. It is still a struggle, though much better now that he has his G tube and his airway is no longer aggravated by that NG tube.
FINALLY, on January 31, Alan got his G tube! Dr. Megison at Children’s Medical Center in Dallas did a terrific job. Alan’s feedings have been MUCH easier ever since, praise God! Alan also had a supraglottoplasty, which helped with his noisy breathing (laryngomalacia) and also helped to reduce his reflux. We were able to go home about 34 hours after his surgery. It took about a week before he didn’t need any pain meds, but his recovery was quite smooth, all things considered.
Currently, life with Alan is immensely easier than it was even before his ability to eat by mouth declined. This is in large part due to his new nurses. After he came home from the hospital with his NG tube, we started the process to start getting private-duty nursing care. We now have two different private-duty nurses who help us care for Alan in our home Monday through Friday, for 12 hours a day. It is an incredible blessing a a huge relief to our family to have this help. The icing on the cake is that I also truly love these two amazing women and feel blessed to not only have competent nurses to care for Alan, but two new friends who help me balance out the male to female ratio in my house! They have helped me and Alan tremendously.
Alan also got his wheelchair recently, and that has been very helpful. He has a severe level of cerebral palsy (recently learned there is a scale from 1 to 5 and Alan is a 5) so he can just barely hold his head up when sitting but definitely can’t hold himself up well enough to sit up without support. That is why they recommended we get a wheelchair instead of an adapted stroller. It was clearly the right move and we love being able to take him out more easily, and also love having such a well supported place for him to sit for feedings and just throughout the day here and there. It easily tilts forward and back to relieve any pressure that might be hard on his pelvis over a long period of time.
The biggest mountain we are currently still climbing is the matter of insurance. You see, ever since we moved to Texas the kids have been on Medicaid because Jim has been in training to become a Real Estate Appraiser, which is a long process that doesn’t pay well. Jim has recently become certified and will soon start to make more money, praise God!
However, this means that Alan will not be receiving Medicaid for much longer and it turns out that Texas is one of the worst states in the country for this particular issue. We are currently on three different Medicaid Waiver waiting lists and the shortest one is five years long! A Medicaid Waiver would definitely be the best option for our family (mainly because private insurance has a penchant for denying things like much needed private-duty nursing hours) so I am currently in contact with some ladies with an organization that helps families like ours wade through the mess that is trying to get a Medicaid Waiver approved for your child in Texas. More to come on this.
Thank you for reading and for caring about us and precious Alan. I just have to add at the end of this long post that, no matter how much stress and work we go through on his behalf, Alan is so worth it. If you ever get a chance to meet him, you would understand. Anytime you see a person with disabilities of any kind, please bear in mind that they are just as valuable as the “competent” and “capable” among us. I’m not sure that they aren’t actually more valuable.
I believe that many people with disabilities understand more clearly than most that life is not about ease or comfort or accomplishments. They understand that we are blessed just to be alive and to have others who love us. God sees all of our struggles and loves us in the middle of them. He is able to bless us and help us in the midst of and in spite of all our many insufficiencies. He loves us and one day He will make all of our struggles on this earth a distant memory. May God bless you as you persevere through whatever struggle you may be facing now, trusting Him to deliver you in His perfect time, for His glory and good purposes.