As I begin to write this blog, I’m empty for words. As you can imagine we have gone through every emotion this last week. Im lost on how to start it, I have Pandora playing as lincoln and adam play cars and I’m amazed by them and lose focus on writing. I ask God to guide me in how I should start this, and all of a sudden I’m aware of the song playing.
I am not alone
You will go before me
You will never leave me
I see Your light is breaking through
I am pressing into You
Lord, You fight my every battle
And I will not fear
You call me as Your own
You’re my defender
You’re my refuge in the storm
You’ve always been faithful
You bring healing to my soul
In the midst of deep sorrow
I see Your light is breaking through
Lincolns brain fluid has had 4 negatives in a row! they started his intense antibiotics on Saturday and it looks like he may have surgery this Saturday to place a new shunt it. Then he will stay for 24 hours to do another dose of antibiotics and if all looks good he can come home Sunday or Monday!!
With every day that passes he starts to act himself. The giggles are contagious and the Joy that he brings to everyone he meets is heart melting.
Through these trials, You’ve always been faithful
I was angry, I was praying for God to take all this from Lincoln, I asked why about 540,000 times. I pleaded over and over to him. We can’t do this anymore. I needed him to show up and my knees ached.
A friend reminded me that even though I didn’t feel like he was here, he was. and just because he didn’t provide in the ways I WANTED, doesnt mean he wasn’t there, working in his perfect way, molding us.
When they told us infection we knew it would be 10-14 days. Adam and I started worrying about Money and this time of year, I just had surgery, medical bills are piling up. We both heard God say he would provide. Thank you to those who have donated or provided in other ways, God is working through you in this.
Back stepping about 11 months ago, adam and I were in washington looking at houses, we were defeated and couldn’t find anything. We Googled a restaurant and sat down. Tears in our eyes, lost. The sweetest waitress came up and saw our distress. She briefly heard our story about lincoln and started praying for us, we can never forget the comfort she brought us that night, God confirming to us we should be there, in Washington. we haven’t had the chance to see her again.
Her husband happens to be a pastor and came down to seattle, sat and listened to our many questions, shared the truth, genuinely loved on us.
He shared Psalm 34 with us. didn’t just read it to us, but took the time to have us imagine how David felt in that moment.
Praise of the Lord for deliverance in answer to prayer
Psalm 34:2-4 my soul will boast in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exhale his name together. I sought the Lord, and he answered me; he delivered me from all my fears.
Psalm 34:17-18 The righteous cry out, and the Lord hears them;
he delivers them from all their troubles.
18 The Lord is close to the brokenhearted
and saves those who are crushed in spirit.
I just wanted to share how God has really worked on us this week and Bring Glory to him in all of this.
Thank you for all the prayers, and the constant communication. We read everything you send and all the comments.
Lincoln was gifted this prayer shawl, and will be sleeping with it tonight!
Here’s our timeline from the last week via facebook.
Dec 1. This is always so hard. I can’t describe the pain that goes into just a “simple” MRI. He’s still at an age where he doesn’t understand why we are allowing them to strap him down to a table for 7 long minutes to get brain images. With lincoln we were finally above the water. The last couple of weeks he had been showing some odd symptoms that have progressively gotten worse, super shaky, off balance, fussy, prominent forehead veins, and his head has grown 1cm. Dealing with a bit of anxiety, so Adam took him back for his MRI, we will meet with his neurosurgeon to discuss results. #lovinglincoln
Dec 1. My little wonder boy. My pal.
Usually when someone goes through a shunt malfunction they throw up, they’re irritable, their eyes do this sundowning. When they live 90 miles from childrens they get placed on flight for life because they can’t risk driving and have something terrible happen on the way to the hospital.
But you lincoln. You are different my son. You have been a little irritable and haven’t been showing the typical malfunction signs. But mama, nana, and daddy knew something wasn’t right. The MRI confirmed lincoln’s shunt is in fact malfunctioning. The doctors are always amazed at this little guy. He will be going in for surgery hopefully this evening and be back home in the next couple of days.
Please be praying for Dr. Browd and his team.
I was stubborn this morning and insisted on coming to his appointment, my recovery hasn’t been going as well as planned. Please pray for me as I’m still trying to get healed up.
It kills me I can’t pick him up.
The pic on the left is his scan in June, those are his ventricles. The one on the right is today, his ventricles are full of fluid.
Dec 1. Change in Plans.
Lincolns team is amazing.
They decided to do a Shunt O Gram. This procedure consists of placing a radioactive dye in his shunt reservoir/valve, and measuring the speed it moves his tummy while being filmed by radiography. By performing this procedure a valve malfunction, catheter obstruction can be detected.
The good news- everything seemed to be moving normally.
The bad news- that was even worse than my sappy mri post earlier. Adam sang him to sleep and I made sure to keep him cool while he was wrapped up. It took about 20 minutes. ((He loves to be sang to.))
When they tapped the shunt they were able to check the pressure in his head. Normal pressure is 7-15. Lincolns was 24 and jumped to 35 when he was crying.
They are confused to why he is acting so normal and happy, kiddos with this much pressure and this large of ventricles tend to be way worse.
The plan now- they changed his shunt setting to drain more than it was. They will Keep us overnight because his brain is in a dangerous place, at any moment it can turn for the worse. In the morning they will do another MRI and we will go from there.
They are doing everything in their power to make sure he positively needs surgery!
Dec 1 . This little man has been such a trooper today. 15 minute nap and now just getting his baba and going to bed at 9:15. Hes been a cute slap happy all night 😉 Will update tomorrow as we know more. Thank you for all your prayers♡ #lovinglincoln
Dec 2. Nothing like falling asleep to the voice of your daddy.He just got back from his MRI, we are now waiting for results to determine surgery or not. Thank you for all your thoughts and prayers. #lovinglincoln
Dec 2. Riding off to surgery in style.
His MRI showed that changing the settings didn’t help, meaning his shunt is in fact malfunctioning.
His ventricles were actually a bit bigger this morning. It was just a matter of time before he started showing scary symptoms. His team and Adam and I are so thankful we caught it in time!
Will update as soon as we can.
Dec 2. Lincoln came out of surgery just a couple hours ago. His shunt was in fact malfunctioning. His valve was broken. With the amount of pressure he had and the size of ventricles on the MRI, they were in shock that he was so happy and not showing any signs. I’m just thankful we caught this when we did. He woke in a lot of pain and needed 3 doses of morphine. His lungs don’t sound the best, they are going to start respiratory treatments and if those don’t help we will do a X-ray. They are a bit concerned because he puked quite a bit, praying he didn’t get any in his lungs.
Also his IV isn’t working so they will have to do a new one. Hoping this little guy can catch a break and get some rest.
Thank you for your prayers!
Dec 3. Lincoln deserves his vanilla scone and steamer.
His fever broke last night and after oxygen treatments his lungs are clear.
He was tested for viruses because he has a cold and it came up that he has 2 different viruses. It’s making his recovery a bit tough because he’s really not feeling well.
As soon as he starts walking around and eating they will allow him to go home ♡ #lovinglincoln
Dec. 3 Prayer Warriors! Get on your knees and Pease pray for lincoln and our family. We were so close to home, 20 minutes away to be exact, to hugging our sweet kids, having normal food and getting a full nights rest. Unfortunately we just got a call from his NS that the brain fluid they tested last night just came back positive for bacteria which could turn into meningitis. He has had an on and off fever this last week but we figured it was from his cold. Please pray this is just a false positive. Last time it was positive it was because some of his skin from his head had bacteria on it due to his ichthyosis trapping it under the skin. Im having a hard time believing it’s just his skin because his scalp has been so clean and scale free.
Lincoln was full of joy as we were packing the bags and getting in the stroller to go home. We were in the elevator and he kept saying issy bubba and nana in anticipation to go see them, now we have to take him back.
We are both feeling sad, confused, drained and letdown. This is hard and we are loosing strength.
Dec 3 . Feeling a bit numb writing this. This is lincoln sharing his respiratory treatment with daddy before he goes back for surgery. He gives us Joy and completely and utterly amazes us.
He is in surgery right now to take everything out. We are starting from scratch. Back to square one. If you have read my blogs than you can imagine how we are felling right now.
The type of bacteria that is growing in his fluid is extremely rare, and very threatening. It would have eventually caused him brain damage. We did an MRI this morning and it showed his ventricles didn’t go down in size, from what they were before. The infection has caused them to be inflammed.
Feeling so thankful we turned around and came back.
The only way to get rid of the infection is to take everything out and place an external drain that will be coming out of his brain. This is basically a “shunt” outside of his head. He can’t have any devices in his body while tackling this infection. The tricky part is every little move lincoln makes with this drain externalized needs to be monitored by a nurse. We will have someone bedside 24/7 to clamp it shut when he moves. They expect it to take 2 weeks for this to clear. He will also have a PICC line placed tomorrow or Monday to reduce the amount of pokes. Imagine having your two year old monitored and not able to get out of bed for 2 weeks… just asking for your prayers as he’s in surgery and we will be taking this day by day. #lovinglincoln
Dec 3-4 It’s 2:40am and linc just got out of recovery and to his room. We have been waiting for him since 9.
They got everything out and placed the EVD successfully. Because he’s sick lincoln’s oxygen stats haven’t been good, they like him to be above 94 and he’s around 75 and was at 30 for a bit. Needless to say it was very scary. Because of his breathing problems we are in the Intensive Care Unit. He is on oxygen and now stable and sleeping.
Thank you for your prayers and keep them coming! ♡
Dec 5. Adams post -Well here we go again…back to the OR for another operation. Lincoln is getting a Pic-line put in to his vein so that they can access his heart directly with the antibiotic for his bacteria. This is a good thing however it is the 3rd time going under in the last 4 days. It’s real hard on the body but it’s what is best for him. We are still waiting to hear back on results for a negative culture. Once we see the first negative over 48 hrs then that begins the count down for the duration of his antibiotics. He will keep the EDV the entire time and then have a new shunt put in. Hopefully this bacteria is not too stubborn and is easy to fight to allow for a shorter stretch of antibiotics. We have an amazing team here fighting for the best scenario for our little Lincoln. Thank you so much everybody for the support and prayers and contributions to helping in any way possible. GOD is so good. Please continue to pray as he goes through this.
Dec 6. I know a lot of you are praying for our family and Lincoln specifically. Every day it has been something new. He had his PICC Line placed yesterday and woke from sedation upset and it started gushing and they had to push pressure dressings on him, which is really hard on his skin. I ask you to set your alarm for every hour or every other hour and pray for him, give thanks to God that we still have him with us, and for the rest of his stay to go smoothly, for the negative cultures to start showing up. When my alarm goes off I stop whatever I’m doing and take couple minutes to do this. Thank you!!
Dec 6. Making the best out of this hospital stay♡ #lovinglincoln
Dec 7. Bathtime!!