29th Update

I am very sorry it has been so long since my last update, but there have been lots of medical complications running through our household. Since the last update two of our three nurses have gone to the ER, three different virus strains have run through the family one right after the other, and I was diagnosed with strep throat and tonsillitis.
Samuel has also been having a difficult time threw all of this. His elevated heart rate has not changed much since his last update and he has been running a fever pretty much every day. We are typically able to bring it down without medication but it takes some time and finagling on our part. When he runs his temps he still ranges from around 99.8 to about 101.8, but he has spiked up to 104. We are still trying to determine the cause of all of this.
Samuel has not escaped the plague that has been running its course through the family. Despite all of our efforts to protect him we had to begin treating him for strep throat 10 days ago. Samuel developed a rash that did not respond to topical Nystatin (yeast med), this coupled with the temps, general discomfort, and the rest of us having been sick, prompted us to treat him for strep throat.
On Wednesday of last week we began seeing some old blood in Samuel’s G-tube. We had hoped his button had just been bumped, causing a little bleeding in his stomach, but we have continued to see additional blood leading us to believe he may have an ulcer. We do not want Samuel to have to be sedated for testing so we are going to treat him symptomatically with medicine and a broader spectrum antibiotic. An ulcer could possibly explain many of the issues he’s been having as his body responds to the terrible pain an ulcer would cause. The very nature of Samuel’s situation places his body under stress every day. Time will tell. We pray for quick relief from the obvious pain he’s in.
My next piece of news is the one that we would like the most prayer over. On Thursday of last week one of Samuel’s Doctors expressed great concern about his kidney function. His decreased and concentrated urine, rash, and dry skin could be symptoms of this. He said that this could be very serious but hopes the reduced kidney function is due to an infection and will only be temporary. This was a very difficult visit for our Doctor as Samuel’s life greatly parallels his own son’s life many years ago. It was this very thing that he ultimately lost his life over at 5 months old.
As my mom said to our doctor, this is part of loving Samuel. We know there will continue to be ups and downs along the way. Our prayer is that we will be faithful servants who look too and lean on Christ first, not last. We know that Samuel’s days are numbered. We also know that medically those days are expected to be very few. However we serve a great God who has brought an amazing little boy this far when medically he should never have drawn his first breath. Every day is uncertain for Samuel. We pray the Lord will give Samuel a long life where he can continue to defy the laws of medicine and glorify the Lord in every breath he breathes, but we recognize those may not be the plans God has for Samuel. That said, we continue to cry out to a loving Father for His healing.
This has been an amazing journey for our family, every stress, trial, and emotionally rendering moment worth it. We continue to live life believing that God has lots more in store for us and Samuel. We believe that we should not go about our day to day life afraid of Samuel being taken. Every moment is special and it is times like these that remind us that life is a vapor and we should treasure each moment given to us.
As a final note I would like to ask for prayer for my mother who has been run very thin through all of this. We have not had a full week of nursing coverage (10 p.m. to 6 a.m. 6 a.m. to 2 p.m.) since November. We have three nurses right now (we are supposed to have four plus back up), and they are pulling some double shifts to try to get us more coverage (pray for their stamina). My mom leans on the Lord’s strength every day but her body is tired. Please pray that the Lord upholds her (we know He will) and that her three year old will stop waking up one or two times in the night disrupting her sleep.
Thank you all; may the Lord bless you and keep you.
Kaitlyn