Keeping up with the Benders

God is Faithful. He is strengthening my faith. This season has continued to be stretching, challenging, but I still sense I am walking on solid ground, with Hope ever floating overhead, keeping my chin up, most days.

Here are the major happenings with Alan and our family since I last wrote, as I recall them:

Fall 2019

The first challenge we faced was a significant uptick in Alan’s reflux and vomiting that began in August for reasons unknown. There were a few weeks in September where it didn’t seem as bad, but then it went back up to where Alan was throwing up about once every three days and having reflux at least once a day in addition, sometimes even up to four times a day. It was a terribly messy couple of months.

After debating our options (Nissen fundoplication vs. G/J tube) we decided to get Alan’s G tube switched to a G/J tube. The G tube goes directly to the stomach but adding the J port gives us access to Alan’s small intestine. You can feed a person directly to the small intestine, just at a much slower rate than you can feed someone to the stomach.

Switching to the G/J tube turned out to be a great decision and solved the problem quite quickly. However, we were overwhelmed for the entire month of November, before figuring out that there was a much easier way to handle all of the cleaning and changing out of feeding bags. Turns out there are special needs moms who make these amazing, insulated feeding bag covers on etsy where you can place an ice pack on one side and the feeding bag on the other and then you can go without changing the feeding bag out for up to 12 hours (Search “insulated feeding pump bag cover” on etsy). This has been a total lifesaver!

Winter 2019-2020

Over Christmas break we were crazy enough to cram all three boys, including Alan and ALL of his medical equipment and supplies, along with Alan’s nurse and her son into our minivan and drive 10 hours north up to Lincoln, Nebraska, to be with family for a precious few days, and then down to Kansas City to do the same for a few more days. While it was great to be with family and our nurse helped a ton during the day (Jim and I switched out doing the night shift with Alan… not much sleep on those nights as Alan was battling a virus most of the trip), I would rather never attempt such a thing again.

It was completely exhausting juggling everything with Alan’s care along with all that you normally juggle while traveling at Christmas with kids. Just picture a huge plastic bin filled with half-wrapped Christmas presents mixed in with enough medical equipment to set up a traveling hospital room plus the typical amount of luggage for three adults and four kids and you get the idea. Never again, please. Still… I’m glad we did it. Just never again, please.

It was probably less than a week after we got back from that trip that Alan was in the ER. His symptoms had gotten a little beyond what I was comfortable managing at home without knowing for sure what he had. He had been battling one or more viruses for the past week or two. Strangely enough, he tested positive in the ER for Coronavirus, before Coronavirus was a worldwide obsession. His was most likely just the common strain since this was the end of December. The nurse who told me what he had made a joke about how it was spelled the same as the beer and we all laughed it off as just a run of the mill virus.

Crazy story alert. So we went home from the ER on December 30 with a prescription for antibiotics due to a small amount of mucus or fluid in Alan’s lungs that the doctors wanted to treat as a pneumonia just to be safe and we felt like everything was going to be ok. I was super exhausted from the trip to the midwest combined with a few “nurse mommy” days and nights after the trip due to a few nurses taking off, and then the trip to the ER the day before. I really was not well but was so looking forward to taking a hot bath and relaxing after our night nurse arrived. But this was going to have to wait.

Not long after our night nurse arrived on New Year’s Eve there was a knock on our door. Jim was at my brother’s house with Dean and Henry for a New Year’s Eve get together. I had declined because I was feeling quite exhausted. So I go to the door, not expecting anyone in particular and am stunned to see not one but THREE policemen standing outside! My heart rate immediately shot up and I think I went a bit white. I definitely didn’t like the thoughts that were racing through my head at that moment, particularly because Jim and the boys had been out on the roads earlier.

After a brief conversation one of the officers informed me that Children’s hospital had been trying to get a hold of me and I needed to call them about a test result for my son, Alan. I still don’t understand why in the world they needed to have three policemen to deliver this news to me. Children’s hospital had indeed tried to reach me a few hours earlier, but I didn’t answer since it was an unknown number and hadn’t had a chance to check my voicemail.

I called over there for clarification and they told me that, yes, I needed to bring Alan back to the hospital right away because the his blood culture from the previous day was growing bacteria. It was so odd because Alan seemed to be doing better and was calmly sitting near me. But of course, I packed everything up as to be prepared for at least a three night stay, called Jim, trying not to freak out, he left the boys with my brother and sister-in-law and we drove Alan back to the ER.

So once we get back to the ER room a doctor quickly comes back and apologetically tells us that another test result just came in and the specific type of bacteria in his blood is one that indicates it was most likely just a skin contaminant and his blood culture was probably fine. They took his blood once more to be sure and sent us on our way. We got home about a half hour before the clock struck midnight and I was putting Alan to bed and unpacking when, at some point, the new year began, as Jim was off picking up Dean and Henry from my brother’s house. HAPPY NEW YEAR!!! Ha, I’m quite certain we will never have a more memorable New Year’s Eve – at least I sure hope not! Thank God Alan was okay.

I don’t remember much from January and February except that we had at least three viruses move through the house and most members of the family, usually beginning with Alan. One of the viruses was just awful. To be quite honest, I would not be surprised if it was actually COVID-19. It started with Alan and came in two waves, but his case was pretty mild, thank God. Then I caught it and it was TERRIBLE for me. I got the first wave of it and it just knocked me out for about a day or two with exhaustion and chills but that was mostly it. I thought I was getting better, and then about a week later, WHAMO, I get a second wave that was worse than the first. I was exhausted, had a low grade fever and vomiting, and then a day or two later came THE most intense, pounding nasal pressure I’ve ever experienced. It made me feel claustrophobic because I could not breathe out of my nose at all and every time I blew my nose it would immediately clog up again. This continued for about a day until the nasal drainage began, and this was very intense. I was coughing for about two weeks after it finally cleared out.

Anyways, that’s probably too much information, but I feel like I need to back it up if I’m going to say it might have been COVID-19. I should probably get one of those antibody tests so I can really know…. Anyways, it was just one of the many “nuts” experiences of our recent history.

Another change that happened in February was that Alan’s stomach stopped tolerating the meds and water flushes that we had still been giving via the G tube. He was having a lot of reflux episodes. After an x-ray to make sure his G/J tube had not come up into the stomach, Alan’s GI Doctor recommended switching everything over to the J tube (goes to the small intestine) and also switching his reflux med from Famotidine to Prilosec (Omeprazole). These two things worked very well for Alan.

Spring 2020

Along comes Spring and we take Dean and Henry to Galveston to see the ocean for the first time over Spring Break. This was the first family trip we ever took where we left Alan behind with the nurses. It was just for two nights but it wasn’t an easy thing to do but it really was the right decision. Alan was fine and we were actually able to relax a bit. It was only two nights, but it was fabulous.

Once we got back from Spring Break, the country started going nuts about COVID-19. People were clearing out all the toilet paper, cleaning supplies, bread, milk, eggs and ground beef, among other things. I refused to go to the grocery store even one day earlier than I was planning on because I didn’t want to be a part of the panic. I had decided we would use cut up squares of old washcloths for toilet paper if it came to it. Thankfully, it wasn’t that bad. We had to conserve, but once I started going to the store at 8 am I usually could get most of what we needed. But man, it felt like the world was going crazy. I guess that’s because it pretty much was.

And then the schools were shut down. At first we thought it was going to just be for one additional week of Spring Break, but it quickly became clear that this was most likely going to shut schools down for the rest of the school year. I’ll spare you all the details, but the stress level in our house was very high for the rest of March and for pretty much all of April and May due to trying to home-school my seven year old, babysit our main nurses son whose school had also been cancelled, keep our four year old busy, trying to mediate conflicts between all three boys, and also trying to fix a huge Medicaid issue that popped up. We were in danger of losing Alan’s Waiver Medicaid due to a clerical error so I was dealing with all of that for about two weeks as well. No one keeps you on hold for a minimum of 60 minutes and takes a minimum of 30 days to process a simple form like government-run programs!

The Medicaid issue got resolved thanks to the parent of one of our main nurses former patients. She gave me a tip on how to get Medicaid issues resolved and that was a facebook page called PTFK Warriors (Protect Texas Fragile Kids). They had instructions on how to get the attention of certain HHSC personnel (by email) so you don’t have to just wait around while you child loses their much-needed services. It totally worked too, so that was a God send.

Another stresser that began in late April was that we lost our main nurse rather abruptly. She had been our rock, caring for Alan for over a year and was covering 5 twelve hour shifts per week. Sadly, her father became very ill and she had to fly to Taiwan to be with him. She had to quarantine for 14 days before she could even see him due to COVID- 19. But it was all for the best because she did get to see him and spend some quality time with him before he passed away. We of course understood why she had to go, but it was of course another hurdle in a season of hurdles.

Once again, God proved Faithful. Through all the chaos, stress, worries, lack of sleep and hours of work, He brought us through to the other side. And the other side is bright! We now have a new nurse on our team who has been a huge blessing to Alan and to us! And we have our previous main nurse back, now for two days a week, as well. And there is no doubt that God was leading her to so quickly fly to be with her father. It was so important for her to have that time with him.

I feel like I have my “dream team” for Alan right now. Each of Alan’s five nurses brings something unique and wonderful to Alan and to our family. One nurse feels like a little sister at this point and another is a new friend who is really challenging me in my faith and inspiring my walk with God, and another is a steady rock who allows me to sleep at night by caring for Alan four nights a week, so faithfully.

Presently

Another huge praise is that Alan has been able to be on room air (as opposed to on oxygen) more and more recently. He had been on a downward curve ever since January and it had gotten to the point in April that he was on two to three liters of oxygen most nights and one to two liters during the day. Then I had an appointment with Alan’s Pulminologist and we started aggressively tracking his blood oxygen saturation levels throughout the day and trying new things, including cutting back on his “tastes” since the Pulminologist suspected that micro-aspirations were the main cause of his saturations being where they were. This means that Alan could have been aspirating daily or weekly on his own saliva or on the small amount of purees we were giving him just for pleasure three times a day.

Ever since we started paying more attention to his oxygen saturations and also cutting back on his tastes, he has been getting better and better. I truly give praise to God because it really isn’t clear exactly why he has improved so quickly. It could be due to cutting back on his “tastes” and it could be that the late spring and summer is just the healthy time of year, but either way, I know it would all be fruitless were it not for God’s blessing on that boy. He has actually been doing so well this week that we have taken off his oxygen completely for several hours during the day.

It seems Alan has two main issues when it comes to his breathing: 1. Mucus tends to settle in his lungs because he isn’t active enough due to his severe cerebral palsy and also possibly due to aspirating on his own saliva or food during the day. When the mucus builds to a certain extent, it negatively effects his blood oxygen saturation levels. 2. When Alan falls asleep, his blood oxygen saturation levels drop as his breathing slows in his deep REM cycles and rises when he becomes more alert, most likely because of the holes in his brain and their affect on this automatic function.

Another issue we’ve seen pop up recently is random fever spikes that sometimes come with or without seizures, some mild, some severe. His neurologist said that since temperature regulation is also a function of the brain, Alan could be prone to fever spikes that are not related to a virus. This sure is what it seems like because once we get the fever and seizures under control with meds he bounces right back and has no other symptoms. Thankfully this hasn’t been happening lately. It seemed to pop up while we were down-dosing him on Phenobarbital since we were trying to switch him to Depakote (Phenobarbital has a negative effect on bone density if used for more than a few years).

I know this post is already way too long, but I’m including all of this in hopes that someday some of this information might be useful to another mom of a special needs child. It has been an uphill journey and I so hope that I can someday help someone else’s journey along, just like so many people have helped me along mine. “God, please let these words be a blessing to someone somewhere.”

Another positive trend in our family’s life has been the two older brother’s attitudes toward their little brother. It has been priceless to see biggest brother Dean really grow into his role as the big brother. Yesterday we took all three boys to the park after dinner, with our faithful Nigerian night nurse coming along in his bright red scrubs, me carrying the suction machine (I’m sure no one was staring, ha ha). It touched my heart to see Dean holding Alan’s hand the entire way to the park while he was being pushed along in his wheelchair. He just really loves that little guy and he totally gets that he isn’t like other kids, and that’s one of the reasons he is so precious to us. Middle brother Henry is also becoming more nurturing and kind towards Alan as well, in his own ways.

Thank you for reading all of these words from me. I hope to post again soon with less events and more reflections. We shall see what the Lord allows.

Here is a verse I have been challenged by recently, especially in regards to how I pray for Alan, and the underlying feelings that can quickly flood my heart, such as doubt, when I pray for Alan’s healing:

“And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists and that he rewards those who seek him.” -Hebrews 11:6

I have no certainty that Alan will ever walk or talk. The doctors certainly have told me quite clearly that this would be a miracle. However, I DO have certainty that anything is possible with God! I have been challenged lately by one of our new nurses to ask God and to not doubt. This is certainly a challenge for me because I almost do not know how to not doubt and I don’t want to be presumptuous, but at the same time, I don’t want to miss out on something that God is more than willing to do because I was too conservative in my requests and hopes for my son and too conservative in my faith in God and His desire to bless those who seek Him.

Just some new thoughts I have been mulling over. It’s going to take me a while to digest them, but I wanted to share in case they strike a chord with anyone. Feel free to share if you have a thought for me to consider regarding all of this. Thank you, friend! Hope you are well.