Samuel's 41st Update!

Okay, so I know many of you believe that I have probably fallen off the face of the earth. However, besides our typical busyness my computer was out of commission for 5 weeks. During this time a lot has been going on. Some of you may know that about 3 months ago we lost one of our three nurses due to health concerns and her long drive. We have since lost another of our remaining 2 nurses, leaving lots of uncovered shifts. This of course was an added stress on top of all the others since the family was now having to rotate shifts threw the nights and days not covered, sometimes up to five nights and two days a week. A few weeks ago we had an issue occur that our nursing company did not handle appropriately; this was the straw that broke the camel’s back. We have had nothing but problems, uncovered shifts, and management issues since very early on in our relationship with the nursing company. Some of the staff disagreed with our stand for Samuel’s life. They are not the first, but were unable to work as part of the team to provide the care, love, and support we needed. All of this was a huge stress on our family.

We have now made the transfer to a new nursing company three weeks ago, one that we are very excited about. The brief overview is that the company is run by a family who has a severely epileptic child now in her early twenties. The mother and a son are both nurses and other members of the family have accounting and management backgrounds. Their family went thru the nursing care system and had lots of problems which we (and other friends we know in similar situations) have experienced. They decided there had to be a better way that was family friendly and actually provided the allotted nursing hours. Their company now has over 200 employees and their approach to nursing care is more of what we have been looking for.

Sheila has made the transfer with us (big relief, Sheila has become like family) and remains Samuel’s primary day nurse. The caliber of nurses being sent to our home has been better, and their approach to Samuel is refreshing. These nurses have been very interactive with Samuel. They talk with him, count with him, sing the ABC’s to him, and treat him like a regular child. Samuel love’s one of the new nurse’s voice and lays in bed with big blue eyes gazing directly into hers when she talks to him. We believe that this change will be very beneficial for our family.

At this point things are still very hectic, especially for my mom, because of the nurse training period. Most every other night my mom is up all night, sometimes even having to train the next day as well. We have found that nurses trained by another nurse tend to be overwhelmed and have not come back. On the opposite side nurses trained by my mom usually continue with us. Most of this is my mother’s approach to Samuel’s care and training. My mom takes it slow and trains as things come up instead of giving a laundry list of do’s and don’ts. It’s just a slower paced, less overwhelming situation that way. Plus it gives us an opportunity to talk about who we are, where we’ve come from, and what our desires for Samuel are.

Apart from all of these changes very little else has gone on (thank goodness!) Samuel has now been fully switched over from the breast milk/milk based formula my mom was making to a food based formula. Now that he is getting older his body requires different nutrition. So far that is going well aside from watching for signs of constipation.

Samuel still deals with Edema (he is now 35 pounds) which is our biggest obstacle at the moment. He probably has about 7 pounds of Edema (based on his previous weight gain) that is taking its toll on his body and ours. It is becoming harder to manage Samuel’s care with his increasing weight. Our prayer is that Samuel would lose the excess fluid in his body and start gaining weight at a healthy rate. As a side note the Edema limits Samuel’s range of motion making it harder to move his joints (i.e. bending his arms to put a shirt on etc.).

Exciting little tidbits around the house include Samuel riding in a swing for the first time a few weeks ago. He wasn’t quite sure about the whole thing, and his eyes were freaking out trying to figure out what to focus on. Also Samuel’s new bath chair arrived. Some families become excited over new books or eBay items arriving, my family gets excited about new medical supplies (unless we are talking about Samuel’s new inline suctions, no one likes those!). And perhaps the most exciting bit of news is… due to the weather and Samuel’s increasing ability to regulate his body temperature he has been able to go to church 5 out of the last 6 Sundays!

I am finally beginning to work on Samuel's celebration of life video, so hopefully in the next moth I will be able to add that to the blog, although I make no promises. Thanks for your patience in waiting for an update; I don’t expect it to be a month before the next one.

In Christ,

Kaitlyn Emery