22nd Update

Hello everyone. My Father has just handed over the task of Samuel’s updates to me and I hope that I will be able to fill you in as well as he did. This has been a major task for him because of his many other obligations as Husband, Father, boss, employee, and the many other hats he wears during a day. I will try my hardest to keep these updates short and readable, since I am known for rambling on and giving too much detail. I’m sorry if this first one is rather lengthy.

Our family was tremendously blessed last Sunday when we were able to take Samuel to church without the use of his ventilator. Our church has a fellowship meal after every 2nd and 4th Sunday and Samuel was also able to stay for that which totaled to about 5 hours off the vent.

Samuel now has a Physical Therapist, Occupational Therapist, Special instructor, and Speech Therapist (not for speech) who come to the house weekly. Saturday his Special Instructor had scheduled to be here at the same time as OT to learn some of Samuel’s range of motion. So instead of one person working with him for an hour he had two people working with him for 1 hour and 45 minutes. Samuel decided he had had it for the day and the poor guy slept for a few hours after they left. He also made sure to protest whenever any of us messed with him after that. He did really well in spite of all of this and even tried to use some head control while Sue was working on him.

Obviously we would like continued prayer for all of the things previously mentioned in Samuel’s updates, but there are two very specific areas that we would like everyone to pray for that would increase Samuel’s daily comfort. The first of these concerns is his swallowing. There is a difference between Samuel swallowing, and Samuel developing the gag reflex. You can have one without the other. The second is his difficulty with regulating his body temperature.

Samuel has basically no down time. He has care twenty four hours a day (16 hours from nurses and 8 from us when nursing is staffed properly). For Samuel this means he has no uninterrupted sleep. We cannot let him sleep for a few hours without getting him up because it would put him in jeopardy. If he’s not suctioned he could aspirate his oral secretions and this could cause pneumonia.

If Samuel were able to swallow this would mean he could rest more because we wouldn’t have to suction. The suctioning is also shooting us in the foot in some ways because the more you suction the more desensitized his gag reflex becomes. His lack of swallowing will also become a bigger issue when the time comes that he needs more nourishment than the breast milk can provide. Artificial liquidized nutrients are not the best option.

Samuel’s temperature is a big issue for two main reasons. Again we come back to not being able to let him rest. We’ve tried the thermometers that you place on the forehead, but they are not accurate enough. Samuel’s temperature can be 97.4 one time when you check, and shortly after you have to strip him down to his diaper because he’s now 99.8. The end result is that when Samuel’s temperature goes up, so does his risks of storming.

Samuel’s temp struggles will also cause him to become house bound. He usually ends up cold despite all our efforts to keep him warm while he’s out. He usually has three to four layers of clothing and a blanket and still gets cold. Cold and flu season also poses a threat. Samuel has a direct passage to his lungs for germs to travel through. For him exposure means life and death, for us as his care givers it means guarding ourselves as well. We might not be affected by the germs but they could infect Samuel if we are carrying them.

We would like to thank everyone for their prayers, support, and many e-mails sent. We love reading them and knowing that the body of Christ is there to weep with us when we weep, and to rejoice with us when we rejoice. We wish we could thank everyone individually, but know we couldn’t possibly because of the number of people from around the world who have gathered together in prayer. Our reconciliation is knowing that one day you will be rewarded for your service and prayers to our family. The Lord will bless you for your faithfulness in prayer and your love. The Lord has afflicted Samuel with a great trial to bear, but he has also blessed Samuel abundantly for it. He has had the tremendous blessing of ministering and impacting hundreds of people in his short little life. One day Samuel will come before the Lord when his work here is done and the Lord will say “Well done my good and faithful servant.” I look forward to the day when Samuel will have his new body and we will be able to hear him testify of the Lord’s mighty hand. Until then we daily pray and wait for God’s plans and healing of Samuel to unfold. The Lord is faithful, even though the road is hard for Samuel and all those who love him, but on that day when Samuel is given his new body, you will never hear him complain, but praise the Lord his maker for ever breath given.

May God bless you,
Kaitlyn Emery