April 10 evening update
COHENS MOMMY’S TUESDAY EVENING UPDATE
So we didn’t get great news today.. some of the cultures that were sent off last night is growing yeast pretty quickly. Meaning Cohen has a yeast infection in his blood stream which is pretty serious I was told by infectious disease. They don’t know what degree or anything it is yet because it hasn’t finished growing so they aren’t sure 100% what antibiotic will cure it until then..they are going to start him on a wide spectrum antibiotic now to get something started quickly. They also said it potentially could be affecting his heart, kidneys and eyes (all of his major organs) so they will give him 24 hours and if it keeps coming back a strong positive they will start getting eye exams, Echos and pictures of his kidneys. They are pulling the PICC today to make sure the yeast is not sticking to his PICC line and will start an IV for his meds. (Which isn’t ideal) but it’s what we have to do..
He just came back from his sedated CT of his tummy so hopefully I should know something about the abscesses this afternoon. (They want to make sure they are gone because If not the yeast could possible be growing through them.)
I needed this reminder today!! 💗
It’s so so hard battling through all these trials everyday but I know my God is in control and he has a plan. I just need to BREATHE. I walked out side for a few seconds while Cohen was back in CT and I just took a breath.. I breathed fresh air for the second time in 29 days!
April 10, 2018
COHEN’S LOLLI IS A LITTLE BEHIND ON POSTING. I APOLOGIZE FOR THAT
So as a lot of you know Cohen got really sick really fast. He started to get sick Sunday and was pretty much lifeless throughout the day.. not wanting to do much of anything but lay there. Yesterday we thought he was getting better he sat up and played with his toys for as long as he could and then started to get pretty lethargic again. He ended up spiking a pretty high fever around 3 yesterday and we haven’t been able to break it since. He is very much miserable and we aren’t quiet sure what’s going on. They done blood work/and sent a urine off last night and they all came back good.. so we will go for imaging today on his tummy to look at the abscesses and possible have to go back in and drain them. Please pray!! Pray that we can figure something out very soon so we can get back on the road to recovery. 💙
COHEN’S LOLLI IS A LITTLE BEHIND ON POSTING. I APOLOGIZE FOR THAT.
COHEN’S PRAYER WARRIORS
We are asking for immediate prayer for Cohen. He has spiked a fever and is lethargic. Please pray for Cohen and for the doctors to listen to his Mommie! Please pray they find answers.
Cohen’s Mommy’s Sunday Update
We haven’t had a good day today. Cohen has been nothing less than miserable since about 12:30 am this morning. We started trying to spike a temp again today and we aren’t quiet sure why. We also had to hop on bored with strong pain meds today (which we’ve been off of since Friday) 😔
Hopefully by tonight or tomorrow morning we will have an answer as to why. Please pray for comfort and rest for my little bug tonight. 💙
Cohen’s Mommy’s Friday Update
Making the best out of life here 💙
I don’t really have anything new to update we have spent our days playing and making pictures for Cohens door. He’s doing great for the most part as long as no one enters his room. His procedure went great yesterday and we have started feeds today. (He is currently not tolerating them).. we will see how he does throughout the night. Overall we had a pretty good day!
“Be happy in the moment, that’s enough. Each moment is all we need, not more.” -Mother Teresa
Cohen’s Mommy’s Thursday Update
Cohen woke up this morning and wanted to sit in a big boy chair.. so that’s exactly what we did! 💛 Last night was the first night I got to put pants (or any clothes on him) in almost a month.. I feel that he is progressing so much! He is starting to get his silly happy self back and I couldn’t be happier! Although we are still having set backs daily we are still progressing and that’s all I ask! God has been by our side through it all!! 🙏🏼 He has answered so many prayers!! They have talked to the team and plan to start a medication today for Cohens PTSD and Anxiety which are both severe..so that itself will be a long process of getting things under control. He goes into the operating room today at 2:30 for another minor stomach procedure so please pray things go well and he will be able to tolerate feeds this evening!
Cohen enjoys looking out our big window in our room and watching the cars go by. He thinks they are funny! We are still isolated because of his infection so going out of the room in not an option for him.. but we are trying to make the very best out of it. We are still not looking forward to going home anytime soon. We’ve been here 25 days and I have been in the parking garage once to run to the car and haven’t left the hospital once.. Cohen got to go in a wagon ride around the unit while we were in PCICU almost 2 weeks ago and that’s been the last time he has got to leave the room other than going for surgeries..
So our excitement of “looking forward to” eventually going home is an understatement!
Cohen’s Mommy’s Tuesday Update
We have had a very long couple of days.. let’s just start out by saying that Cohen is literally physically, mentally and emotionally drained and traumatized. They have actually brought a Psychiatrist in today to see if they can get his anxiety under control. They also diagnosed him with PTSD from being in the hospital and having so much done to him throughout his short little life. It takes at least 5 people to hold him down for a dressing change (and these are sometimes multiple times a day.)
I know right..5 people to hold a 20 month old baby down..
he lashes out with everything his little body can.
It takes me to hold him down for them to just give him medicine through his PICC line.. when they enter the room his heart rate jumps from 1 teens to almost 200s.. we are all terrified he is going to give hisself a stroke. They started feeds yesterday at an extremely slow rate and had to turn them back off last night because he wouldn’t stop vomiting.. he will go into another procedure tomorrow morning to replace his Jejunum line because it’s border lining his stomach so we are hoping that was what was making him sick. I enjoy these smiles more than anything in this world.. they are pretty rare now days but I will never take them for granted ever again. Therapy is very happy with him and we are working on being able to stand up a little at a time.?We go through major improvements and major set backs daily but we are hopeful that one day this will all just be a memory and a story. My little love bug is my whole world and it crushes me every day to see him suffer. Please pray that they can find a medication that will help him cope with everything because right now we need that the most so his body can start to heal and take over again.
“I asked God for strength, and God gave me difficulties to make me strong.”