9/24 Walker update

Good afternoon everyone,

I am posting today because our little guy got his first cold and he isn’t doing so well with it. He started getting sick on Wednesday last week with nasal congestion, and a dry cough. Luckily we already have a lot of things at home that we need for this and we have been talking with his doctors everyday. On Saturday we took him in to urgent care due to the increase of mucus coming out of his nose and mouth. We had a deep suction done on both nostrils and nasal passages which is very tough to do with his very small nasal passages.

Sunday he was still sick but was looking better. We were also suction at home from his nostrils. Monday was the same situation with a little bit more of a cough. Tuesday he went to his wellness check and the doctors said that he was looking really good. At about 3pm that same day he started getting very sleepy and fussy. We thought it was his gasses as it matches up as his regular routine. I came home from work and he was still very sleepy and fussy. We then consoled him enough to get him in bed and was fast asleep. At 8:10pm we got a notification from his owlet (pulse oxygen monitoring sock) that his O2 had dropped to 77%, Brandi was laying down next to him and noticed that he wasn’t taking a breath she then shook him a little bit and he started breathing again. For the next half hour we put his other monitor on as well and gave him some oxygen for the machine we have at home. While this is was a temporary fix it gave us a little time to call children’s and talk to his doctors to see what the best plan of action was. Unfortunately that was him coming down to Children’s in an ambulance. We both looked at each other in fear and said okay let’s do this. Called 911 and got the ambulance coming and quickly Packed what we could for the trip to the hospital. Lake Stevens FD didn’t mess around, they were at our house very fast and he didn’t have just one but three ambulances show up for him. Luckily we had given them all of his information when he came home from the nicu so they knew how to handle him and what he is on. I will say it’s very nice and recommend to anyone that does have children with medications or medical issues.

After they did there assessment Walker and I got to take a presidential trip down the freeway while road construction going on to children’s. Brandi followed with the car so we had transportation.

Once we got to children’s the team got to work right they got him on high Flo oxygen, did some blood work, did some deep suctioning again and another mucus test and that came back positive for rhinoenterovirus (a strain of the common cold). There is no antibiotics for them to give him for it, just has to run its course. Once on the high flo his stats started stabilizing and they said he was going to be admitted. So we got to transfer from the ER to a regular room at 1:30 am this morning.

We got settled into our new room and wouldn’t you know it Walker wants to be awake and talk to all his new people at 2 am! We finally got him settled back down and were able to fall asleep around 2:30.

Then till 7 am during shift change he slept well and his stats looked great. We then met with all the doctors for morning rounds and got a better plan of attack for what he is gonna need, he will be here for a few days being monitored and on high Flo, we are gonna start a round of steroid drops for his nose to help with the inflammation and help break up some of the congestion that we aren’t able to get to with the suction pump. With this also brings back up his nasal passage surgery. It is back on the table and will likely need to be done before the other surgeries that we have scheduled. They are saying once feeling better will try and schedule in the next 4-6 weeks. I will be honest it is scary but this is also a surgery we think he has needed since the very early days of the nicu.

So the rest of today has been talking to doctors, coming up with a plan for him and most importantly letting him rest while on the oxygen. He has slept a lot today when he isn’t getting checked on by the staff and he is doing a little better. His oxygen is at 25% and 10L/h.

Thank you everyone that has read this and kept our little warrior in their prayers! He is having just a little speed bump but we all do.

Love you all

Walker, Brandi, Tyler

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