We started 2015 trying to accept that Joshua would need surgery for a g-tube insertion in order to wean from his CVL. David and I both felt uncomfortable with the decision and after delyaing surgery, we ultimately declined the procedure against the recommendation of our GI team (mainly the nutritionist). Boy, are we so thankful and relieved we listened to our gut and didn't go through with the g-tube. It would have been a huge mistake for Joshua! Encouraging his eating by mouth is so important for long term progress and I have always thought he would eat more as his bowels were able to absorb more. However, getting his CVL out remained of utmost importance because of the high infection risk. It was a difficult risk vs. benefit assessment.
After deciding to stick with status quo and not go with the g-tube, in mid March our hands were pushed when I discovered blood dripping from a small hole in Joshua's central line. We knew for months that a weak spot was forming in the line where it would naturally twist and weaken the tubing. I attached multiple adhesive strips on both sides of the kink trying to keep it straight and it lasted for much longer than his nurse and I expected, but it eventually broke at the thinnest spot. When the regular clamp wasn't strong enough to stop the blood flow from the thin part of the line, I struggled with what to clamp it with to staunch the blood. I could use hemostats, but I knew they were so big it would bother Joshua from a sensory standpoint and he would keep grabbing at them making things worse. I had called David to calmly inform him we would be on our way to the CHOA ER in a few minutes when he suggested a binder clip that was currently holding a bag of chips closed. Ta Da! Once the flowing blood was clamped off, I could focus on packing both of our bags before rushing him to Decatur.
Joshua is a model patient, as long as he has his iPad, naps, and bananas.
We had to decide with the GI team and the surgeon whether the current line could be repaired, if he would need a new line placed, if they would trade the line for a g-tube, or if they would give him a chance with no implants at all (our strong hope and desire). We were overjoyed when the GI doc reported we would remove the line since it couldn't be repaired again and give Joshua a chance without a CVL or g-tube. This is really happening! Of course, we had been here 19 months before the first time they let Joshua try without a line. It was a dismal failure and set us back many, many months. Nothing was guaranteed this time around either. I have some PTSD-like memories of the time his line was prematurely removed in 8/2013 and we lived with 12-14 waterfall poops a day and 10% loss in body weight in 5 weeks. I was excited and frightened, optimistic and stressed, hopeful and anxiety-ridden. You get the picture. I couldn't let myself believe this time would be succesful lest I relive the crushing disappointment and regret from the first time around.
Joshua went into surgery on St. Patrick's Day to remove the line and we haven't looked back since! Although we struggled to get his stools stable for the first 6-8 weeks, our GI team eventually worked out the right dose of Imodium and maintenance antibiotics that he can live with. It is hard to put into words what a change this has been for our family's daily schedule. No longer do I need to prepare IV fluids every night after dinner, hook Joshua up before bedtime, stress over his every move at night when he was infusing and could get caught up in the IV lines, schedule and wait for deliveries of critical supplies every week, change his sterile dressing whenever necessary, unhook him from the IV fluids every morning, maintain a constant traveling supply of a crazy amount of medical supplies, and worry every time Joshua grabbed for the line or clamp that irritated him constantly. Wow, what a difference this has made for all of us!
Even after a lengthy ear infection and his first round of strep throat, Joshua has continued to maintain his weight in the 50th percentile since having the line removed. He is doing great in this regard, but has to keep up with a pretty hefty daily calorie intake. He continues to get the majority of his calories from a hypoallergenic form of Pediasure, but the extra calories he eats in solid food (bananas, cereal, chicken, rice, tortilla chips) was what put him in the clear to have the line removed. Joshua recently beccame enthusiastic about eating with a spoon which is huge progress considering early feeding therapy attempts landed him with an oral aversion to spoons - he would gag just watching me and David eat from a spoon. Often times with Joshua the best therapy is lots of practice at home with Mom in a natural setting, not a contrived therapy environment.
As Joshua's medical issues have become less immediately threatening, our priority has shifted to his sensory processing issues and speech/social delays. I am told his receptive communication level is about average, but his expressive communication is far below a typical 3 year old. He has still mastered just one word - Mama - even though he uses many vowel and consonant sounds. Despite his lack of verbal skills, Joshua is able to get his needs across pretty easily. He will grab your hand and take you to whatever he wants most of the time. We also participated in an 8 week Visual Supports program through Georgia State this summer in which we were provided with a picture exchange system that Joshua picked up on right away. It involves small picture cards that velcro to a series of boards. He can pull the card from the board and hand it to me to get what he wants. It is very effective for things that are immediately available, but the concept of setting up the daily schedule with a series of cards (the ultimate goal) is still a little abstract for him.
Give the kid an iPad and you really get to see what he's capable of. I have watched him count to 10, identify colors, pick out shapes, match tiles, identify animal sounds, and do puzzles in certain apps he likes. But try to get him to do those things outside of the iPad as part of an assessment and you get squat. So I'm not putting much stock in the testing performed by the school system to determine his eligibility for special needs preschool. Clearly he is capable of much more than he shows in a contrived testing environment. The up side to that is he is always eligible for any program we try to get him into. Joshua will start at the Clarke County Early Learning Center in a few short weeks! Since he will be the youngest student in the school, the decision was made for him to start with just 3 hours, 3 days a week which I think will be a good routine for him. He will be in a class of 6-8 kids, most of which have special needs. He will be getting multiple hours of speech therapy and OT a week which will complement his existing therapy schedule in Watkinsville. I am worried that Joshua will struggle with the change in routine at first, but I know being around other kids his age is the best possible thing for him and the fastest way he will learn.
Although Joshua has meltdowns in certain public situations like big stores, malls, and now airports, he generally does quite well with getting out and about. He loves going to the gym with me, restaurants, and the grocery store to get more bananas. But try to take him into Target or the mall and he turns into a screaming, hair pulling, biting badger. I have a lot to learn about sensory processing issues and how this effects Joshua's perception of situations. It's a bit of a foreign concept for me still. From the books I've read, I understand Joshua is constantly bombarded with sights, sounds, and smells that are hyperstimulating which can cause physical pain and anxiety that triggers a meltdown. Just the fact that he can deal with so many different situations relatively well is another reminder of what a warrior our little guy is - he is literally fighting to make it through every day.
He is simply amazing. And he loves cars. Happy Birthday, sweet baby, you deserve the best life has to offer!
