“These last few days have been a blur. This little man has been put through the ringer… but tonight he is finally resting.
Saturday: Snotty nose, low grade fever and I noticed he had a molar coming through. So I just assumed it was from the tooth.
Sunday: Decreased energy level, high fever and coughing
Monday: Lethargic, deeper cough, high fever that wouldn’t break. We started this journey with Jase’s pediatrician who instantly saw a very tired little boy. Jase was admitted Monday afternoon and started on IV fluids, breathing treatments and Tamiflu.
Tuesday morning: I saw my little boy interested in his surroundings. But within a few hours it all changed… and for what we thought was the worse. Jase started to vomit but it was different. He couldn’t bring everything up. The cough progressed. He became very lethargic again and his breathing started to decline. Without hesitation, we elected to transport Jase to Munson Medical Center in Traverse City where he would have a better chance of recovering.
Tuesday afternoon: Jase took his 2nd ride in an ambulance. Within minutes of being seen by the next doctor she ordered chest radiographs and additional blood work. Hours later this little boy was fading. His oxygen saturation was declining. He needed 100% flow to keep his saturation in the mid 80’s.
After observing him and making adjustments in his meds, the doctor started to see him decline. He was really struggling to move air on his own. He started to become very mad when we touched him. He would cry out in sheer pain.
Wednesday morning: Within minutes of getting the blood work back at 4:00 a.m. an AreoMed chopper was ordered and our baby boy would be airlifted to Helen DeVos Children’s Hospital in Grand Rapids. At this point he was not critical but we didn’t want to wait any longer.
By the time Ryan and I made it to DeVos, Jase was put on a bypass machine to help move oxygen. Jase had now been on a continuous albuterol treatment and multiple doses of steroids. Needless to say he was being very hard to handle. He was upset with the mask he needed to wear. He was crying because he wanted water. He would panic for no reason. After talking to the doctors we elected to give Jase a small sedative to help him relax. All the medications were making him upset, but these medications were needed in his recovery.
We watched him struggle, panic, cry, scream, hit — and the numbers continued to decline.
For the last 12+ hours Jase has been on a very powerful ventilator and it was pushing a lot of pressure on his lungs. During this time he was put into a chemically induced coma to assure he does not feel anything that is going on. It also assures he will not move while these machines are running.
We can only see him for short periods throughout the day due to everything that is going on. There are multiple people in the room with him at all times plus all the machines. So physically you just don’t have room to move around and not be in the way.
Friday, Feb. 2: This machine is the one healing our little boy! Last night and today has been an uneventful day and we will take that. Jase is showing small signs of improvement. We will take the small victories. Stats are looking good. Blood work is slowly improving. EEG looks good – no signs of seizures. O2 levels are looking great!!
Saturday, Feb. 3: The doctors needed to replace his ET tube to a bigger size. Which they have been talking about for a couple days. When Jase was first intubated they were only able to pass a small (3.5) tube (this size would normally be for a 1-year-old) which has caused some issues trying to remove the crud from his lungs. So now he has a much larger (4.5) tube to help suction out the mucus in his lungs. Unfortunately even with the larger tube the ventilator kept stopping. They where unsure if the mucus was creating a plug at the end of the tube? The next step is to try a few different treatments to help break up the sludge in his lungs.
He had a sudden heart arrhythmia that had everyone on their toes. With a few meds, that heartbeat quickly went back to normal. There is a possibility Jase had a mild heart attack. He had a follow up Echo to make sure his heart was still healthy. And it is!
Jase was put on blood pressure medication due to an increase in pressure. Now that he has been on the medication the numbers are much better.
Jase is still on dialysis but over the next 12-24 hours we maybe able to remove him from that. His kidney levels are looking better and he is still producing a good amount of urine which tells us his kidneys are still working.
Jase has slowly been removed from the medication that keeps him paralyzed. He is still fully sedated so he can’t feel anything but he is starting to move. He started to react when we talk/touch him. Today his eye lids moved when I was talking to him, and when Ryan was talking to him and holding his hand, he moved his fingers!
Sunday, Feb. 4: Here we are seven days into battling the flu. I am still in shock that a week ago our little boy was sleeping on my lap, throwing the football, running around with the dog and just starting to show as being sick. And today he is on life support.
Jase is becoming stronger and stronger. The doctors are happy with his improvements but still have some concerns. They increased the amount of fluid that was pulled off of him today with the dialysis machine which is making Jase look more and more like himself. He is no longer looking so puffy. His eyes look better. His nose, fingers and toes are almost back to normal. And his tongue is no longer sticking out. There is talk about disconnecting the CRRT machine tomorrow. His kidneys are still producing urine and blood work looked even better today.
Monday, Feb. 5: I can finally run my hand on top of his head…no more wires. Step 1! Hopefully soon we can wash his hair to get all the EEG glue out.
Tuesday, Feb. 6: Today was a HUGE day for this little trooper. This morning the doctors decided his body was strong enough to be rolled down to the OR to remove his cannulas that were connected to the ECMO. Since Jase has been off ECMO he has been doing well. His stats are stable, his oxygen levels have been good as well as his blood work. These are all baby steps in the right direction.
Jase is still sedated and currently on the ventilator. He will continue to be on life support until his lungs are healed enough to function on their own without assistance from the machine. We are unsure how long this will take.
His kidneys are working hard to get rid of all the extra fluids, but as long as his output is meeting the hourly goal, he should be able to stay off dialysis. Because Jase has been sedated for six days, his muscles are very weak and may take a long time to recover. His poor little feet are falling down to the side. A therapist came yesterday and measured him for boots/braces to put on his legs to keep his feet flexed. This way when he wakes up, we can help Jase get moving faster. Hopefully we will get those tomorrow.
Last but not least, Jase has only been able to lay in one position since starting ECMO, but now that the cannulas are removed the nurses can put him in different positions to help prevent bed sores! I have not been able to see or touch the left side of his face until today! Like I said before we are going to celebrate the small victories! This little man is fighting so hard not only for us, but for everyone that is praying for him. We have a very long road to recovery but we are counting our blessings.
Thursday, Feb. 8: So the MRI didn’t show us what we wanted to see. The virus has attacked Jase’s brain and brain stem. This is a VERY rare complication from the flu. Many of the doctors have never seen this. So as of right now, Jase is going to go back on the EEG so they can monitor brain functions. He will receive high doses of steroids to help with the inflammation, and high doses of a heavy-duty antibiotic. They took a swab to see if Jase is still shedding the virus. If the test comes back positive for the flu they will start giving him an IV antiviral medication. We were told that there was a nationwide shortage of this medication but thankful there are a few vials here at the hospital that they will use on Jase.
After having multiple days of good news I felt as if we were hit with a baseball bat this morning.
The more prayers we can have surrounding our son to heal him, the better. Thank you.
Saturday, Feb. 10: Tonight as I lay down, a few tears rolled down my cheeks! Why??? Because I am grateful!!!
I am grateful for my husband who holds me when I am weak. Who supports me, who calms me down, who asks the tough questions.
I am grateful for my family and friends that check in to see not only how Jase is doing but how we (Ryan and I) are doing. For the ones who make the 1 to 3 hour drive just to say hi, or help break up the day.
I am grateful for the community that has wrapped their arms around our family during this time of unknown. Words can not expresses our gratitude. We are truly blessed to be surrounded by so many amazing people.
Today I am extremely grateful for Dr. Winters telling me that today I would be able to hold Jase!!! This morning Dr. Winters looked directly into my eyes and said we are going to make it happen. Thank you to Alyssa and Vanessa (Jase’s nurses) for making room in Jase’s bed for me to climb in next to him. I would have stayed there for hours if I could have! I was worried that I was stimulating him too much and increasing his blood pressure… but his nurse said during the time I laid next to him, his blood pressure was as low as it has been all day!!!
I am grateful for Amanda (his night nurse) who takes care of him while dad and I get sleep. She has even picked up extra shifts just to stay in his room each night. Knowing that he is in good hands I am able to sleep a little better!!!
Today was a good day…we are starting to see little changes…others may not 100 percent agree at this moment in time, but Dad and I see it!!!
Sunday, Feb. 11: An early morning coughing spell turned into something worse. Jase started to have pulmonary haemorrhaging. He was coughing up blood through his ET tube. There could be multiple reasons for this hemorrhage, but they were unable to hang their hat on a specific reason. Jase is now sedated and paralyzed again. He needs to have these medications to prevent any more coughing spells. The rapid bleeding has stopped, but we want to make sure it doesn’t happen again.
It is so hard to sit and watch him struggle. Today I broke down again. No one should have to see their child like this. No one should have to ride this horrible roller coaster. This little boy is fighting so hard for his life. Can’t we catch a break??? Hasn’t he already been through enough???
Monday, Feb. 12: Remember I said we would have good days and bad days??? Well yesterday was definitely a BAD day and a day full of tears and added more fears.
But thankfully today was a good day. After speaking with the doctors they decided to make some changes…and we are very excited!!! Why??? Because this puts us on the path to recovery.
Today his lungs sounded clear and looked great on X-ray…it was Jase’s last day of his anti viral medication, they started to wean his steroid dose and ventilator setting.
Jase was very wiggly last night… but we were unsure if it was pain related, neurostorming or withdrawal symptoms. But today we saw that his movements were becoming more purposeful, stronger and frequent. He was starting to fight the nurse when she was trying to do his eye care and oral care and he found his ET tube (which is NOT something you want a 3-year-old to grab on to). He kept bringing his left arm up and at first we didn’t know why, then he finally got it up all the way and kept it there and he feel asleep. This is a normal position for Jase.
He was started back on a constant pain relief drip to keep him comfortable. He is starting to show more emotion on his face. This was extremely hard for Ryan and I. Watching the tears roll down Jase’s face and the frightened look in his eyes was heartbreaking but he was so much more relaxed today! We were able to see his big brown eyes so clear today!!!
Wednesday, Feb. 14: Yesterday our little fighter had a repeat MRI. The doctors sat down with us this morning to go over the results.
We knew ahead of time that there was a possibility that the images could look worse even though Jase was improving. The images showed some changes. Some of the swelling has decreased…which is good! The fluid pockets in the middle of the brain are bigger… this shows that the brain tissue is shrinking. This could be caused from the virus or it could be steroid related. Further down into his brain stem we saw multiple black lesions. This is old blood, this is dead tissue. We knew there would be a possibility that Jase would have permanent brain damage from all of this. The MRI showed the damage. But what we don’t know is how severe that damage truly is.
The doctors gave us a lot of possibilities, but it really depends on Jase. Children’s brains truly are sponges, and unlike ours they can compensate much easier. It’s hard not to freak out, get upset or demand answers. But I have faith that Jase will continue to improve. Tonight I played a video of him and I singing ‘This little light of mine.’ His response was heartwarming. His eyes opened so BIG, he turned towards me and was moving his hand/arm much more rapidly. This made me so happy!!! Him and I sing this song all of the time.
Tomorrow is a very big day!!! The doctors have weaned his vent settings low enough that are ready to extubate. Part of me is super excited while the other side of me is freaking out. Ryan and I know that there could be complications with this, but we know we need to try. The sooner we can remove the tube, the sooner we can start the next chapter of therapy. So I asked that you pray for Jase. Pray that removing the tube will be uneventful. Pray that his body can handle everything on its own. Jase has been on a ventilator for 15 days. His lungs are healed, but we need his brain to tell his body what it needs to do!
Thursday, Feb. 15: After a good night in decreasing Jase’s vent support the doctors have decided today is the day to removed his ET tube. Planning on around noon to remove the tube! I pray that this is a step in the right direction.”
This story was submitted to Love What Matters by Abby Kay Burns-Amesbury of Boyne City, Michigan. She has been recounting her son’s journey on Facebook. Submit your story here.
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