Ethan's not so "tubular" adventure
Wednesday, March 20th
We took Ethan to our primary doctor's office because of his decreased intake and assumed that we would be heading to our local hospital for IV fluids. Our doctor thought that instead of staying locally we needed to head to the larger hospital about an hour away which has several of our specialists, including our GI. While we were actually waiting to see our doctor I got the call from the nurse at the GI's office with the date for Ethan's feeding tube surgery - May 8th. While the doctor was examining Ethan he said that he didn't think Ethan could wait that long, and that he was going to call the pediatrician/hospitalist at the larger hospital and see about getting us admitted for IV fluids that afternoon. So, we came home and packed our bags, preparing for a few days and headed to the hospital. We were admitted through the ER, so that took a while. Getting the IV fluids started was tough, and Ethan was very upset.
Thursday, March 21st
We just spent the day hanging out in our room, Ethan was hooked up to the IVs so he didn't have a lot of mobility, but we took some walks around the floor, a few wagon rides, and visited the playroom. Ethan was looking a bit better, since he was getting pumped full of fluids and he began eating more of his applesauce and soy yogurt. Ethan's grandma and grandpa Marshall came back up for a visit and his grandma Chambliss and aunt Amanda also came up to see Ethan and so they could be with us the next day during and after surgery.
After a few hours Ethan started to be a more active as the sedation wore off and we had to make sure that he was wrapped up tight so that he could not pull at his surgery site and tube.
Here are some picture from when the nurse first unwrapped Ethan and we began using the feeding tube. For the first 18 hours Ethan got small amounts of pedialyte through the tube.
- We have been fighting insurance to cover Ethan's formula and feeding tube supplies. Our EI dietitian, primary doc, medical supply company, nurse at the GI's office, case coordinator at the hospital, etc. have all been part of the battle. It appear that we will have at least some real relief for at least the remainder of the year (since we have already met our deductibles and out of pocket max for the year). Our EI dietitian shared that our insurance said that they will cover the cost of his feeding tube supplies and 99 cans of formula a month (we haven't heard this from the medical supply company yet though). Once Ethan is up to his full daily goal, he will need around 120 cans a month (4 eight ounce cans a day will meet his current fluid and calorie needs) so while we will still be purchasing some formula on our own, we are very thankful that insurance is going to be covering just over 80% of the cost of his formula. Most insurance companies understand that formula for tube feedings is expensive and is a medical necessity, and most parents don't have to fight so hard to get things covered, so I am very very grateful to our team who went to bat for us and kept fighting to get these expenses and services covered. Thank you thank you!
- Three sets of very special and close friends of ours are having difficulties finalizing their adoptions. My heart aches for my friends and there is nothing besides praying that I or anyone can really do at the moment. Each situation is very difficult and unique, and I know I am very biased but I want to see these families officially united, ASAP! Each of these families love the Lord and are great parents who love the little ones who are already part of their families but aren't "officially" their's yet. Prayer greatly appreciated for my friends and for all families who are in the process of becoming forever families.
- Another little one with PBD-ZSD left the arms of her parent's for the arms of Jesus. She fought so hard but her little spirit was ready to be with the Lord. Please pray for comfort and peace for little Autumn's parents and for all parents who have lost a child.
- Other children and families in our group are experiencing difficult changes in their children and/or have children who are really struggling right now. One of Ethan's buddies had a feeding tube placed the same day as Ethan and has been having some complications as well, and two other of his little friends will be getting them soon -- so with all the difficulties that Ethan has been having I worry about his friends and hope and pray that they won't have any of these issues.
- Ethan has been missing therapy because he isn't going to STEPS right now. We need to figure out what is going on with his site and get it healing properly before we go back. But, I hate that he is missing out on therapy. He is restless being with me all the time. This little boy loves people and loves "school" but I'm not willing to risk it yet. We have spoken with our EI Service Coordinator and we are going to make arrangements for at least a few of his therapists to see Ethan here at home for a while, which I think will be helpful.
- We are working on trying to get the word out about our 2nd Annual Pancakes for PBD-ZSD event that we are holding on Saturday, May 18th to raise money for our family and hopefully other families to be able to attend the 2013 GFPD Conference in Lincoln, NE this summer.
- There are lots of layoffs at Jeff's work. At this time we are thankful that he seems safe although there are lots of people, Jeff included, that will be "forced" to take nonpaid furlough days. We have been told to be prepared for up to 3 weeks. I know it is hard to complain about losing three weeks of income when many are losing their jobs completely, but to be honest, it is still going to be difficult for us (and I would think most people). We are praising and thanking the Lord for Jeff's job. Please pray for those who recently found out that they are going to be out of work soon. These layoffs are going to have a major impact on families throughout our community.
- The next few weeks shouldn't be quite as eventful but we still have lots of appointments coming up and we really need Ethan to heal so we can begin the next step -- changing the tube out for the mickey button, which should be an easy thing, but with Ethan, nothing is easy.