Chase is Back Home and Adjusting Well

Yesterday was an extremely long and stressful day. In order to be able to discharge Chase, the Pediatric Ward had a long list of things that we needed to get done, such as training, obtaining the equipment for home (oxygen concentrator, suction machine, pulse oximeter, etc.) and we also had consultations with several doctors. The Neurosurgeon reviewed the shunt incisions and felt that Chase was recovering fine – most of the stitches are dissolvable (other than a few staples, which we’ll probably take out at home). The ENT specialist examined the trach and felt the site was also healing fine, so he could change the trach and then set the next appointment for another week out for us to change it ourselves under his supervision at his office. We also had a Urologist consultation who explained that Chase’s difficulty with urination lately is likely due to the fact that he’s been sedentary (based upon his right side paralysis) as well as the fact that the nerve center to control this function is in the Pons, which is right where his tumor is and it’s probably interfering with some of the signals. So we ended up going home with a foley catheter, which is actually a blessing in many ways since the ANP treatments require large volumes of fluid flushing and the frequent urination won’t be a problem (particularly at night).

We also met with an Eye Doctor who examined Chase and confirmed that there isn’t any issue or damage to his eye lenses or function – just the pressure on the 6th nerve which controls the lateral movement of his left eye. We were relieved that his inability to blink or completely close that eye hasn’t damaged it – we just need to use a better lubricant to continue protecting it. Then we met with a speech therapist who wanted to assess Chase’s ability to move his tongue, swallow, etc. He was still having a lot of difficulty with this, which isn’t clear if it’s due to the trach procedure and intubation for the previous few days, or nerve interference from the brain stem. We ended up not conducting a swallow test, because it really wasn’t going to change our short-term plan for his care – since he certainly can’t swallow very well yet, we’re going to have to use a feeding tube for a while. Once again, this is a real blessing since we can completely control his diet and ensure he’s getting all the supplements he needs with a great balance from the recommendations of his Nutritionist. We’re going to use this opportunity for the next few weeks to take his nutrition up a notch and barrage his system to see if that can help to accelerate his recovery from the tumor.

After all of that and getting the various doctors to sign off on the plan for his continuing care, we managed to get a homecare provider to set up all the equipment we need at home (including a hospital bed). We were finally getting released to take Chase home and he started to have one of his tantrums – as usual because we couldn’t understand or decipher what he wanted. In frustration, he pulled his feeding tube out and this caused another delay – we had to have a new one inserted and it wouldn’t go back in, probably due to swelling or other trauma to his nose and airway passage. After a few attempts, we ended up going to a smaller diameter and getting it to work through his other nostril – hopefully that was enough trauma to discourage Chase from doing that again. We certainly don’t want to be learning how to insert these ourselves since it’s a pretty gruesome procedure. If this feeding tube ends up being a prolonged part of his recovery, we may end up having a surgery to insert a tube directly into his stomach – but we’re hoping to avoid that, if possible, since we just had the shunt installed in the stomach and we don’t want to risk interfering with it or disturbing it’s recovery.

We finally got Chase home around 9 pm last night and then it took quite a while to settle in with all the equipment we have to keep with him. He ended the day in great spirits and was very happy to sleep with mommy in her bed – that was really therapeutic for him. Today he was better than we could’ve predicted or imagined – he was alert and in great spirits most of the time (no tantrums at all). We got him a picture book to be able to point out what he wanted and this really was encouraging to him to be able to communicate again. He took several small swallows of liquid and was sucking on ice chips most of the afternoon. We’re still a bit worried about the risk of aspiration, but he seems to have a very strong cough reflex and he’s been able to get used to clearing his trach himself.

The best part of our holiday was when Chase discovered how to talk with the trach and said several words, including “I love you mommy” – we were ecstatic as though they were his first words. I was thrilled to be by his side and realized that although I was too busy to be around much when he first learned to walk and talk, I’m extremely blessed to be there for him now. We’re holding firm in our belief that Chase is on his way up the mountain of recovery – ironically, during my prayers yesterday I had a vivid vision of Chase running up Apparition Hill at Medjugorje next summer as we celebrated his complete recovery with all of his cousins. He was so overjoyed – this vision was a true blessing in strengthening my faith as we prepare ourselves for the next difficult trek in his recovery climb.

We hope you all had as blessed 4th of July as we did. Thanks for lifting Chase in prayer and boosting him to a rapid recovery from these surgeries. He’s now settling in for the night and is breathing more peacefully than he has in a long time. The tracheotomy was a real success and a necessary part of his recovery - although it's a lot more work for us (hopefully, we'll settle into our new normal" soon). After a few more days of focusing on praying for and visualizing Chase's complete recovery from these surgeries, we’ll get back to attacking the tumor. Thanks again and God Bless!


John & Carol Sammut
Chase & Barbara Ann