44th Update

Not much news on Samuel. He is somewhat calmer than last night, although his fever is still up (102.7-103.0). Mom will be consulting with the Renal Doctor later this morning to early afternoon. Nothing much has changed since we left the hospital five months ago, he is still having the output and Edema issues. The major difference since our last hospital stay is that Samuel has gained fifteen pounds of fluid weight. Some of the test results show that Samuel’s white blood cell count is high. This could mean a possible infection or overexertion. Over exertion is possible since his heart rate and breathing has been elevated for the past 12 hours. However they are going to be running a culture on him and starting him on antibiotics as a precaution. He was admitted into a room late last night. If anyone would like to have the room number you can e-mail me and I will send it to you. I’ll keep everyone posted.

Kaitlyn

Samuel is on his way to the ER. His heart rate is up in the 170, he’s hyperventilating, running a fever, posturing, twitching, and his output for the day has been 25%. There are many more factual pieces of information I could give you, but for now I need to take care of Elianna and get her settled into bed for the night. Please pray for him! We are very concerned about how his body is responding. None of us are sure what is going on. I will let everyone know when we have any information.

Kaitlyn

Join Samuel's Walk for Life!

On September 18^th 2010 Samuel and I are going to be participating in the 2 mile Life walk to raise money for the Pregnancy Care Center. The Care Center provides free ultrasounds for women, free parenting classes and counseling, and they offer parent and baby supplies donated by the community. But more than these physical needs the Care Center provides hope and encouragement for those in tough situations. They offer the truth about abortions and the devastation it causes not only to the baby, but also to the family members who are left behind. The Center offers alternatives to families on how to preserve their child’s life instead of destroying it. This organization is purely donations funded, and during the last year they have really felt the financial strain of the economy. The Life Walk is an effort to raise money to continue defending the valuable life of the unborn.

So, Samuel would like to ask any who feel called to please sponsor him in his walk to raise money for the Center. The way this works:

If you feel the desire to Sponsor Samuel in his walk for life then please send me an e-mail at kaitlyn@contractcallers.com, indicating the amount you desire to donate to the Pregnancy Care Center. Include with this amount your first and last name, Address (zip codes are important!), and Phone Number. I will then fill out the Sponsor Pledge form with your information to be able to hand to the Pregnancy Care Center at the walk. They will then take your information and bill you after it is processed. It’s as simple as that! Please help us in our fight for life.

If you know anyone who would be interested in sponsoring Samuel please give them the opportunity by giving them this information.

Thanks to all,

Kaitlyn

Samuel's 42nd Update

Just wanted to update everyone and let them know that Samuel has broken his right shoulder. He fractured his humerus bone just below the ball of his shoulder. We do not know what caused the break. Nothing occurred other than his normal daily routine. The one thing we know for sure is that no one did it intentionally, but Samuel’s lack of activity and excess weight create extra risk factors.

The break occurred sometime Monday night or Tuesday morning. By Tuesday afternoon there was a definite increase in his heart rate and discomfort. By Thursday night my mom was able to identify that Samuel’s right shoulder was causing him noticeable pain. It took awhile to settle on his shoulder being the problem because he became very sensitive to being touched. He postured and cried if you touched his leg, he postured if you touched his arm; he cried just being touched period.

So Friday morning my mom and our nurse loaded Samuel up for the ER at Glennon. Upon arriving at the hospital Samuel was taken in for x-rays. When the results came back we found that the right shoulder had fractured. The good news was that it was still in proper alignment and was starting to heal. The ultimate decision was to create a strap that immobilized his arm against his body by wrapping around him. This would be something we could remove to give him baths and allow us to isolate his hand and elbow to be able to do range on them and keep those joints from freezing up.

Samuel is being given Tylenol with Codeine every 4 hours for pain management instead of Ibuprofen because of how much harder Ibuprofen is on the stomach. Since Samuel has already had the bleeding ulcer the decision was that the Tylenol would be a better option for him. However the Tylenol is only taking the edge off Samuel’s pain. His trip home from the hospital was not fun for anyone. He cried and his heart rate was in the 180’s (typically between 106-114) most of the way home.

We are trying to stay ahead of the codeine’s constipating effects; we had just gotten a handle on that earlier this week with the addition of a magnesium supplement. As you already know, any changes we make to his medicine or food causes Samuel to have a decrease in his Urine output. So after 12 hrs on Tylenol he was down to 39% output (our goal is 75%) and had gained 14 oz. overnight. It continues to be down today (24% so far). Samuel’s response to his Diuretics hasn’t been good in the past so we’re not sure that increasing diuretics will take care of the problem or just make things worse.

The concern with continued fluid retention is the stress it will put on his body which can ultimately lead into congestive heart failure and fluid in the lungs. It’s a vicious cycle. Anything we do for pain management compounds the problems he’s already been having. We already didn’t know how to deal with these issues in the first place.

Samuel has a follow up in two weeks with the doctor. Because he is a baby his body should heal very rapidly. Our prayer concerns primarily are for Samuel’s distress and fluid retention. Please keep our nurses in prayer as well. They are all distressed by the situation and blaming themselves even though no one knows how it happened. We thank you all for your prayers. I will keep you posted on his progress.

Kaitlyn

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

What a wonderful time of fellowship and celebration we had this past weekend. Friday morning our first visitors arrived at 10:30 and our last group of visitors left at about 9:15. During that time there was about a thirty minute period that we did not have someone in our home. Saturday arrived bright and early and at 10:00 exactly our first visitors came. From then until 9:30 at night our home was filled, at one point with over 20 people at once. What a tremendous blessing!

There were some of you that we had never met before. What a blessing it was to be able to put a face with your name. Many of you are friends and family that we have known for years and came all the same to visit and celebrate with us. It never ceases to amaze me how many wonder friends and family continue to keep us supported in their prayers. Nor does it cease to amaze me how many lives a little one like Samuel can touch. We had the privilege of getting to have another little miracle in our home with similar physical struggles like Samuel. He and his parents (they lived in the Ronald McDonald house with us during our stay) can also attest to the amazing power that the Lord gifts to these little guys, not only to endure the sufferings that they do, but to bring blessings and encouragement to a world in need of these living sacrifices. They make us so much more aware of Christ’s daily presence in our lives and are living proof that miracles do happen. Both of these little guys continue to touch lives every day in countless ways that we could never imagine. Yet society as a whole says that they and so many more like them, the sick, the infirm, the elderly, and the unborn, have nothing to offer. I live with a little guy who defies that lie with his every breath, and I am so blessed to have been given the gift of life with Samuel. To know that when he hears my voice he will turn towards me, to know that when I look down at his angelic face he struggles to focus his vision on me. This is why we celebrate the life of not only Samuel, but every precious life. Because there is so much that those society looks down upon have to offer.

Another highlight of the weekend was being able to introduce Samuel to one of his youngest and most faithful prayer warriors. There are two young girls we know of specifically who have been prayer warriors for Samuel since birth. Each of these girls have prayed daily for Samuel and both families tell how their daughters are quick to remind the family not to forget baby Samuel in their prayers. One of these young soldiers of Christ attends our local church, while the other (pictured above) lives some distance and has never before met the little boy she has prayed so devotedly for. This little three year old actually crumbled to pieces when one of her older sisters wanted to pray for Samuel during their evening prayers and have her pray for someone else on their prayer list. What a blessing to let her finally hold and touch the child she has so diligently loved and interceded for.

We were also very excited to have collected a large pile of supplies for the Pregnancy Resource Center, a gift given to help further their mission not only in sustaining and saving life, but also in educating about life. Those resources will be heading over to the Festus Center by the end of the week to be put into use for the sanctity of life.

Thanks to you all who came in support of the miracle of life, and to so many more of you who were unable to make it and yet kept all of us in your prayers over the weekend. I have compiled quite a few pictures over the weekend and plan to create Samuel’s fourth DVD. As a side note, anyone pictured in these images have given me prior authorization to post their pictures on the blog as well as use them for this update.

May God richly bless you as He has our family.
Kaitlyn

Due to the recommendation of a friend I am sending out a quick reminder to everyone that this weekend (Friday and Saturday) is Samuel’s open house (our doors will be open from 10:00 am - 10:00 pm). If anyone is still in need of directions you can e-mail me at kaitlyn@contractcallers.com . Hope to see you all this weekend.

Kaitlyn