Dear Friends and Family,
Thank you for continuing to pray for us. The month of March is speeding past and it’s hard to remember what I need to catch you all up on! Our last update left off with the ENT appointment being pushed out to yet another appointment. I can’t tell you how many times that’s happened this month! It seems like we are always going to an appointment to make “the appointment” only to find out it will be later. I suppose that’s the nature of medical things but it sure adds up to a lot of trips to that feel unproductive.
Anyway, Amos was able to get the ENT scope of his airway shortly after our last update. Dr. Camilon conducted the scope, which involved Amos being sedated for a short period of time. Dr. Camilon is the same doctor who did Amos’ tracheostomy last July so he’s a familiar face and one whom we’ve come to trust and appreciate very much. We continue to be blessed by so many excellent doctors here at CHOC. Ones who give us time to ask questions, listen carefully, and respond with genuine concern, helpful suggestions, and their direct phone numbers. We are very grateful to the Lord for them, knowing that this kind of care is not something to take for granted. Dr. Camilon said that Amos’ airway looks perfect and there was a small granuloma (kind of an internal scab from the trach) that he removed. While that is all good news, we were a bit disappointed that there wasn’t a significant granuloma because that would have been a very easy answer to the respiratory issues we’ve been puzzling over. So we continue to work through possibilities.
The plan is to have another scope done with Dr. Camilon on the 24th, this time a nasal scope to ensure there are no obstructions there and also to take a look at Amos’ tongue while he is awake (apparently there is no sedation needed for a nasal scope- yikes!). What we are trying to determine is why Amos’ last sleep study showed obstructive sleep apnea and why his nighttime oxygen levels dip more than they should on occasion. As far as we can see it’s a sticky situation to parse out because there are so many different factors that could contribute to or cloud the situation. After the nasal scope, we have another sleep study scheduled for the end of April. It’s very possible that Amos could have gotten stronger since the January sleep study and will have no apnea at all. Or it’s possible that the apnea will still be present and we will keep the trach until further notice. Please pray that Amos would indeed be much stronger and that the respiratory issues would resolve completely resulting in the trach being removed.
Amos also had a swallow study done recently. This was pretty interesting as Amos had to eat foods mixed with a substance that showed up on an x-ray machine as Amos swallowed. What they found was a bit surprising but we hope it’s a helpful discovery. It seems that Amos is occasionally suffering from “silent aspiration” when he drinks clear liquids. This means that basically his muscles aren’t responding fast enough to protect his airway when he drinks a thin liquid and some of it goes into his lungs and then he coughs it out. Basically, things are “going down the wrong tube.” This was a surprise to us and to his therapists but it simply means that Amos needs to get stronger and that we’ll have to modify his liquid intake (i.e. thicker liquids like smoothies rather than water or milk). Healthy swallowing is a muscle thing, after all, and Amos has only been eating for about two months now.
Amos continues to work hard at speech, feeding, Physical, eye, and hand therapy. It’s an exhausting routine for us all but we’ve been told that from here on out, rehab is the single biggest determining factor of Amos’ continued recovery. We are specifically working hard on exercises that get Amos moving and building stronger core muscles to help with his balance (and bowel movements!). In addition, we are working more on speech therapy that focuses on Amos’ tongue movement. As we’ve mentioned before, the right side of Amos’ tongue moves much more than the left. His ability to lift or stick out his tongue is limited so we are really working on ways to help him try to recover muscle strength there. His eyes are improving with the use of his patch and we are thankful for Amos’ willing cooperation. The vision in his right eye has improved dramatically though the range of motion remains about the same. We have an eye surgery scheduled for March 23rd to try and realign Amos’ eyes. The surgery that we’ve opted for is the least invasive and we are unsure how much it will accomplish. However, we are happy with this decision and hopeful that this will give Amos significant improvement. Pray that he will not need further surgeries for his eyes beyond this one.
I did not intend to write so much but as you can see, there is a lot happening this month! Please be in prayer for:
- Amos’ tongue. That particularly the left side would “wake up” and that full range of motion would be restored.
- For the eye surgery on the 23rd, that it would be successful with no further operations needed.
- For the nasal scope on the 24th to be a helpful piece of the respiratory puzzle.
- For Amos’ port removal surgery on the 25th (yay!) to go well.
- For continued strength and endurance for Amos as he works on so many things.
- For nights to be more restful – mostly for Will and I as our nights have been severely disrupted by Amos’ respiratory issues for many months now.
- For Lukey as he sees so much attention being necessarily directed towards Amos. Pray for Will and I to know how to include him and how to be patient with him when he is impatient with us – and vice versa!
- For a favorable decision from the British Home Office regarding our VISA status. We are very much hoping to be able to keep our VISAs but the decision lies solely in the hands of the folks who are currently reviewing our case. Please Pray!!!
- For the Lord to clearly lead and guide our return to Cambridge in His time.
If you are still reading this, thank you. We are facing many challenges but we are also reminded of the many many good things that are happening for Amos. He has overcome so much and we can’t help but be encouraged by his progress. It’s true that there are days when the big picture of what has happened overwhelms us and we feel the weight of this burden. This is not what we anticipated for our family or for Amos and it is hard bear simultaneously the joy and thanksgiving with the burdens and griefs. Some days we see and hear and know and remember more clearly that the Lord is good. And other days we struggle to do these things.
But I am grateful that there is always room to remember and know that the Lord has preserved us all in countless ways. His goodness and kindness is evident in the many details of our life. We might forget and falter but He finds ways to bring me back to the truths I know about his love for each of us and especially Amos. I was very encouraged this morning by question 1 from the Heidleberg Catechism which we professed together in church.
Question: What is your only comfort in life and in death?
Answer: That I am not my own, but belong with body and soul, both in life and in death, to my faithful Savior Jesus Christ. He has fully paid for all my sins with his precious blood, and has set me free from all the power of the devil. He also preserves me in such a way that without the will of my heavenly Father, not a hair can fall from my head; indeed, all things must work together for my salvation. Therefore, by his Holy Spirit he also assures me of eternal life and makes me heartily willing and ready from now on to live for him.
Love in Christ,
Kelli, Will, Amos, and Luke