These are the original Facebook posts of our son’s final days, spent at the Riley Hospital for Children NICU.
FEB 13, 2014
The prognosis the doctors have given my little boy is not a good one. They said he had severe strokes in both hemispheres of his brain and that the underlying brain tissue looks severely damaged. To be honest, they said they don’t have high hopes he will survive. They said if he survives, he will be severely mentally retarded. He’ll never walk, eat normally, drink normally, say his name, or even know that Stephanie and I are his parents. This is the report of the doctors.
However, much like my father and mother did almost 32 years ago, we reject that prognosis because we know that God has raised the dead. He is the Master Physician and the Great Healer. We need a miracle —
FEB 14, 2014
This little baby has had a rough time. After an MRI last night, the doctors confirmed their previous diagnosis/prognosis. However, the good news is that the MRI didn’t reveal more than what they originally expected. Also, we have a suspected name for the metabolic disorder that is causing all of this. The doctors believe Lincoln has Leigh’s Disease. There are many many types and variances within this disorder, but they are testing for a wide spectrum.
As far as the stroke and brain damage is concerned, the doctors showed us the images from his MRI and talked us through what we were looking at. The damage is indeed severe, but there are some things to be hopeful for. We have witnessed Lincoln move his fingers, arms, lips, tongue and even his whole body several times throughout the day. The doctors were present for a few and said that the ones they witnessed seemed purposeful. Lincoln even tried to make a sound!
He hasn’t had anymore seizures or strokes, but we’re still not out of the woods in regards to brain swelling. We have been informed that brain swelling may not occur until 3-5 days after an event. Fortunately, there has been no swelling in his brain as of yet.
They are beginning to wean Lincoln off of the ventilator to see if he will breathe on his own…he is doing very well with this! They have also stopped his pain meds and sedation to try to get him to wake up.
Lincoln has a long road ahead of him, and this metabolic disorder is something he will have as long as he is on this earth. But we have the hope of Jesus that he will be with us a very long time and that he will be healed.
This invincible shirt is perfect for such a tough boy..and he know with God on his side he is!
FEb 16, 2014
Due to technical difficulties (i.e. my phone dying before I could get it on the charger), I did not post an update about Lincoln yesterday. However…
We received another possible part of the final diagnosis late Friday evening (after I had already posted the daily update). Lincoln’s urine test indicated that he more than likely has Maple Syrup Urine Disease. Although this is the most ridiculous name for a disease, it means that Lincoln’s body does not break down certain proteins. Although this is technically “bad” news, it does help the doctors get closer to figuring out which of the 664 genes they are currently testing is the gene that causes the Leigh’s Disease to be present. As I said, this helps bring us one step closer to the final diagnosis and treatment for Lincoln.
Bubby did have a good day yesterday, overall. Friday, the doctors decided to slowly lessen the support Lincoln was getting from the ventilator to see where his breathing was. Lincoln knocked the ball out of the park. They brought the vent all the way down to 12 breaths per minute, and Lincoln continued to take 33-36 breaths per minute. The doctors were very worried about his ability to breathe on his own because of how much damage was done to that portion of his brain during the stroke.
Because of how well he is breathing on his own, the plan was to take him off the ventilator today. However, we have elected to allow the doctors to give Lincoln a minor surgery so that he can have a G tube placed. Currently, Lincoln receives his feeds through an NG tube which snakes up his nose, down his throat and into his stomach. This is very uncomfortable for him, which is why he constantly tries to pull it out. The G tube goes through his belly directly to his stomach. Since this would increase Lincoln’s comfort level considerably, the doctors highly recommended it. Since Lincoln would need assistance breathing during the surgery, he will remain on the ventilator until after the surgery. The surgery will happen sometime Monday afternoon.
We have been able to hold Lincoln every day that he has been in Riley. During these moments, we have noticed some rather incredible gains each day. Thursday, Lincoln just lay there, being held. Friday, he squirmed around and moved for a little bit while Stephanie held him and we talked to him. Then, he peeked open one eye. His eyes were a little crusty so he was struggling to get them open. We cleaned off his eyes, and watched as he cracked open one, then both, the opened then a little more, and a little more, had both eyes open about halfway. He looked at Stephanie, then flicked his eyes towards me. He did this a couple times before locking eyes with Stephanie. When he locked eyes with me, I could see that I was looking at my little boy. He stared at us with recognition that we are Mommy and Daddy. It was one of the most amazing moments I’ve ever had in my life. Our son still knows who we are, even though the doctors said he would never again recognize us. God is so good! When we shared this information with his doctors on Saturday, they had big smiles and a few had tears in their eyes. His night nurse told us that he opened his eyes Saturday morning. He also opened his eyes and looked at us when we were holding him last night.
Lincoln is doing much better than his doctors ever thought he would. They told us that they love being wrong in this way! He’s still not out of the woods, but the forest is getting less dense and more light is beginning to show. We ask that those who are praying would continue to pray for Lincoln. We also would like to thank everyone who has been praying, passing his story around, sending such encouraging thoughts and stories, sending balloons and cards and for those back home who have been taking care of our home while we’re away. —
Feb 17, 2014
Just a really quick update:
Lincoln has surgery scheduled for today at noon to get his G tube placed. Please be in prayer that his acid levels go down and his ph goes up so that the anesthesiologist will allow his surgery to happen.
We were told this morning during rounds that his acidosis has slowly begun trending in a negative manner since late yesterday. His levels are approaching what they were when he was admitted. However, the doctors are keeping a close eye and his metabolic doctors have reminded us that it can take a few days for the treatment they’ve prescribed to really begin to take effect. So it’s concerning, but we can only stay the course.
As I’ve said since we received the first bad news, we understand what the doctors have said, but we reject their reality. For we know “I Am That I Am” is always here.
FEB 18, 2014
Another update about Lincoln:
Lincoln did not have surgery yesterday. His numbers weren’t what the doctors wanted them to be in the morning. Even though they consistently got better throughout the day, the surgeon wanted to wait one more day. He was supposed to have surgery today at 3pm to put in the G tube, but we were literally just told they are going to wait a few weeks. Please be praying for his numbers to stabilize where they need to be. They are going to try to take Lincoln of the ventilator later today instead.
The doctors are a little concerned because he isn’t stabilizing his acid and base levels by himself. They have been giving him a dose of sodium bicarbonate every four hours to keep his ph level where it needs to be. Bubby has a very difficult time ridding his body of lactic acid. We were informed yesterday that a normal number for lactic acid is 2 or less. Lincoln has consistently been reading between 12 and 14. The best way to think about this is that when you work out, your body builds up lactic acid. This is why you get so sore. At that point, your lactic acid level is around 2-3, so you can imagine that Lincoln is not very comfortable at all.
Yesterday, his doctors were talking with me and they used the word “amazing” twice. They said that neurologically, he is amazing them and that, neurologically speaking, they hope that he will be the same as he was before the stroke! They also said that his ability to breathe is amazing. The portion of his brain that suffered the most from the stroke is the area that controls his breathing, heart, basic motor skills, etc. They told us he would always need to be on a ventilator and would likely need a tracheotomy. However, they now say they believe he’ll be just fine without the ventilator because he is already doing almost all the work!
He is continuing to rest today, which is what his body needs. Last night, Stephanie and I spent some time, just the two of us, in his room singing to him. He fell asleep within minutes and just lay there looking so sweet. Even though the circumstances are not anywhere close to ideal, I couldn’t help but to be reminded of how blessed we truly are. We are parents to a beautiful baby boy named Lincoln Robert Huff and he has brought so much joy and happiness to our lives. We are so thankful for the impact he is having on not only our lives, but on so many others. I’ve had a phrase stuck in my head for a couple of days now. “But then God…”. We have already had many moments where we have been able to say “The doctors said this, but then God…”. I cannot wait for the next “But then God…” moment in Lincoln’s life! Thank you all for your continued prayers and sharing of Lincoln’s ongoing story.
They finally were able to start Lincoln’s feeds again. Please be praying that his blood gas levels stabilize and that his lactic acid/ph levels stabilize so that Lincoln does not have to go back on the ventilator.
FEB 19, 2014
Unfortunately, Lincoln is going to be put back on the ventilator. We knew this was a possibility when they took him off of it yesterday. It isn’t an issue with his ability to breathe, he’s doing very well with that. It’s that his body needs help getting rid of all the lactic acid. So his doctors are going to put the vent in now and allow his body to have less stress for a few more days. His prescribed treatment is for a high calorie, high fat diet. With the two cancelled surgeries, he was unable to have his treatment for almost one full day total time. The doctors are hoping that having the vent and being able to get the calories he needs will allow his body to regulate itself. They are going to monitor him and try to take him off the vent again in 4-7 days.
Stephanie and I thank you for your continued prayers and support.
FEB 20, 2014
It is with a very heavy heart that I inform everyone that we have been told to stay by Lincoln’s side tonight. My son has been fighting and is continuing to fight very hard. Unfortunately, his levels just won’t stabilize. The doctors, nurses and respiratory therapists have been doing everything they possibly can for Lincoln. Without a divine touch, this may be his last night with us.
We thank you for your prayers. Even though our hearts are breaking, we maintain that God makes no mistakes and all things are for His purpose. We are blessed to be Lincoln’s parents and he will always be our little bubby.
FEB 21, 2014
Surrounded by people who love him, Lincoln Robert Huff met Jesus face to face this morning. Although our hearts are shattered, we are ever so thankful for the time we had with him. Stephanie and I are truly blessed to have been given such a special little boy. His healing is complete and eternal and we anticipate the day when we will hold our little bubby again. Thank you for all of your prayers and the outpouring of love.