Great news for our family: Ella was approved for Medicaid. This is such a huge relief (the wait was worth it!). Along with having the peace of mind that Ella will always be covered for her medical needs (whatever our primary insurance does not cover, Medicaid will kick-in and cover), it means that she can start to see some of her prior therapists for PT, OT, etc. That is great news.
Therapies with the school district have started albeit slowly. We have yet to meet all her therapists that will be involved, but fortunately, Ella seems to be enjoying her primary one. The ECSE (Early Childhood School Educator) has a lot of experience with preschool children and has used a slow and steady approach with Ella. She comes to visit 2 times per week.
We’ve missed seeing her prior therapists from Developmental Pathways. So far, we’ve been able to have her PT come back and visit her. It’s been great and she noted how much stronger Ella has become in the 2 month stretch of not seeing her. Ella is definitely crawling, pulling up to a stand, and even taking her hands away for brief moments to try and balance on her own, free standing.
She is so mobile and loves to crawl and stand. So today I felt motivated to change around her play area. Now, I’ve elevated the TV on a table and she stands to watch the TV; just another method to encourage that behavior. I do feel like maybe by Christmas or Valentines Day that Ella might be walking!
We took Ella to the park over Labor Day weekend and set her in the swing. That was the first time that she has been in a swing at the park. It was a beautiful Colorado day and the park was vacant – everyone else was likely on vacation so it was a perfect tranquil setting for Ella’s first time. She liked the swinging motion.
We’ve continued to have sleepless nights and lots of retching. We know something isn’t right, but it’s tough to diagnose the problem. We’ve tried adjusting the feeds in every which way – more diluted, less diluted. More volume, less volume. Using the food pump at a slow rate versus a bolus rate versus not at all. Although we did notice that we have not been successful getting to full feeds without using the food pump overnight. Now that we’ve been able to work up to full feeds the past couple of weeks (1300ccs per day; 1000 formula, 300 water), Ella has been feeling miserable. She wakes up throughout the night with the food pump and every time I feed her during the day, she feels nausea and retches. Now since her nissen is a bit looser, she is not only retching secretions but formula as well. She tries and tries to manage it on her own, but then finally can’t and so it forcefully comes out to where it is overflowing from her mouth. This carries a large risk for aspiration.
Full feeds are good for trying to get Ella to gain weight, but there is a downside: her pulmonary system is being challenged. We think that she may be fluid overloaded. The main symptom: the quick pass out moments almost every day again versus every once in a blue moon. Sure enough, she will get upset and hold her breath. Within 3-10 seconds, she is turning blue in the face/hands/feet, extending her body in a contorted, stiff position as her eyes roll back and she passes out. It is so scary!!!
As before, additional fluid has been the culprit before so we decided to give her a dose of Bumex. I got 3 huge diapers after the dose, confirming that she may have been carrying more fluid on board. Since I gave the Bumex a few days ago, I have not had another pass out spell. Another possibility is occlusion with her SVC because she should be able to tolerate full feeds like she has in the past without experiencing pulmonary side effects. We have an echo and pulmonary appointment on Oct 12th.
Fortunately, we had an appointment with her GI doctor this past Friday, Sept 23rd. Ella had lost weight again, down to 13 kilos or 28 pounds. She is 3 feet 1 inch tall. After discussing all of Ella’s various symptoms with the largest issue being nausea and retching, we came up with a plan. Her GI doc thinks that she may have dumping syndrome.
…a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. It happens when the upper end of the small intestine, the duodenum, expands too quickly due to the presence of hyperosmolar (substances with increased osmolarity) food from the stomach. “Early” dumping begins concurrently or immediately succeeding a meal. Symptoms of early dumping include nausea, vomiting, bloating, cramping, diarrhea, dizziness, rapid heart rate and fatigue. “Late” dumping happens 1 to 3 hours after eating. Symptoms of late dumping include weakness, sweating, and dizziness. Many people have both types. The syndrome is most often associated with gastric surgery.
The current formula she is using, EleCare, is all pre-digested. It is the most hypo-allergenic food and we went back to it in an effort to relieve her instestines. Between the food switch and a GI medicine, sulfasalazine, we have seen the constant diarrhea, mucous and blood in the stool pretty much cease. We haven’t seen any more blood and rarely we still see the mucous. So, the food has been good and easy for her intestines to digest. What I learned on this recent appointment with the GI doctor is that EleCare is also a formula with the most osmolarity (as described above). In other words, everything is so broken down that it can be heavy with all the parts broken down which makes it a harder food for her stomach. It signals her small instestine to expand too quickly due to the increased osmolarity, which can cause dumping syndrome.
We’re not sure if she has it or not, but figured that we would try something to see if we can make her more comfortable. If you add MCT Procal (A neutral-tasting powder containing protein, carbohydrate and fat high in medium chain triglycerides), it helps slow down the emptying of the stomach contents into the small intestine. We are going to try adding it to EleCare for 2 weeks. If that doesn’t improve things, we are going to try it with Peptamen Jr and then Nutren Jr (since these foods are not as broken down, they have less osmolarity). These are harder on her intestines because it is not all broken down already, but easier on her tummy. If adding the MCT Procal doesn’t work with any of the foods, Ella will be hospitalized briefly to get a gastric emptying study and dumping syndrome test. Finally, the GI doctor mentioned a last resort: changing out her G-tube for a GJ-tube. A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum of the small intestine. In other words, GJ tubes are used for children who cannot tolerate feeding into the stomach. This is definitely a last resort – there are many drawbacks. I won’t bother mentioning all of them because I am going to think positive thoughts that we will avoid a GJ tube. Pray for Ella – that just adding some MCT Procal to her current food will do the trick!
For a couple of days, our hands were full! Our neighbor rescued a dog and asked us to help out for a bit. It’s sad because it seems like the dog was just left in our neighborhood. We canvassed the area with signs and no one called. After spending a few days in the lost and found at the Dumb Friends League, we checked back and she has been adopted. Although it made my life crazy for a couple of days, I think you can tell that Lola did not mind!
We recently heard of another CDH family that will be having a baby boy in a few weeks, Baby Abel. The family happens to live nearby, probably a 5 minute drive. We’re hoping to be able to provide support in the coming days. Please check out their blog and keep this family in your prayers.
I’m reading a book which is so enjoyable. Partly because I relate to the story: a family who’s faith is tested when their life has been turned upside down – their 6 year old son is an an accident and they are not sure if he will make it. Not that I have a 6 year old son that was in an accident; rather, the author eloquently describes some of the feelings and thoughts that I have often encountered during our 3+ year journey, from the start of hearing the news that Ella would have a birth defect and likely would not live. Those of you who have been readers for a long time have seen the miraculous hand of God at work during our journey. And this book shares the same miraculous work of God as their son does live, but can’t walk, talk or eat. It is good to read a book based on a true story and have someone else state things that you know in your being to be true…things that just make it a bit easier to keep going and persevere. And even though it is hard, trust that He has a plan. After all, isn’t that what faith is truly about? As I feel prompted, I will share portions of the book that I think may bless others. Here is a poem the Dad wrote during the son’s ongoing recovery:
Alex cannot walk
Jesus walked on water
Alex cannot talk
God spoke the universe into existence
Alex cannot breathe
The Holy Spirit is the breath of life
Therefore. . .
I will not look to the world
But to the WORD
I will not look to my son
But to the FATHER
I will not see with my eyes
But with my HEART
I will not fall victim
To the prison of circumstance
I will worship my God
And abide in His hope
Let it be. . .
We all have a story…we all endure pain in this life. So whether it is close to this story or a completely different one, the truths from God are universal and apply to each one of us. It reminds me too, that we are not on this journey alone.
Hebrews 10:23 (NIV)
Let us hold unswervingly to the hope we profess, for he who promised is faithful.
