Raising Awareness for Apert Syndrome
We busted out y’all! Daws took a turn last night for the better! And this morning his lungs sounded so good, we thought it was time to come home! Now to keep him better for the next month!! Surgery is scheduled to start in February! Thanks to all of you for your thoughts, messages and prayers!
Updated: Apr 2, 2020
So, we have been in the ER since about 9:00 last night. The past couple of days have been filled with doctor visits and all hands on deck care. I so appreciate my nurses even more so during this time! Carly has been going above and beyond for us the past few days!
Dawson has now been diagnosed with pneumonia as well as coronavirus. They are treating him the same way they would RSV. He is on 3L oxygen, and might not need high flow oxygen, at least at this time. They got an IV on the first try, which is a miracle!! Also started high IV antibiotics and steroids. Every 2 hour breathing treatments and then all the regular meds. We are still waiting on a room for admittance, but they have set up the room here until they can move us. They said it could be another 12 hours.🙈 just praying that little man keeps fighting and pops out of this quickly! He has been sick for 10 weeks now, with about 3-4 days in-between each virus. So we’re ready for a miracle around here!
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So today, our Pediatrician gave us the go ahead to stay home and continue treating Dawson just how we have been doing; instead of headed back to the hospital as we thought we would need to. They wouldn’t do anything different there, so we feel it’s best he stay home, away from more germs and illnesses.
When sent home last Friday from PICU, unfortunately, he wasn’t at baseline... they just needed the bed. The hospitals here are all diverting to other state children hospitals, because of how bad the sickness is with all the littles here in OKC.
Being that we have 1:1 nursing care for many hours per day, I felt okay with coming home. But, since being home, Dawson has been having spells of respiratory distress where he desats into the 70/80s, turns blue, is unable to breathe because of mucus buildup and when doing this, we at times have struggled to pull him out in a timely manner! Too much of this struggling eventually would start affecting his little brain, and we’re already on alert trying to make sure swelling doesn’t exceed a certain amount monthly. Thankfully, we have come up with a set plan for these episodes that is now working in under 10 minutes to pull him out though, so grateful the routine is working well so far when needed. It is extremely exhausting to say the least; for Dawson, for Jess and I, and the nurses. He is still on 2 liters of oxygen around the clock and it is helping his struggle, reducing retractions as well as his body to heal. He is doing well eating wise finally, and seems to be just as hungry as ever lol! We have been having to do nebulizer albuteral treatments ever 2 hours and budesonide every 12. As well as an inhaler inbetween as needed to help him with his struggle to breathe. We started a steroid 3 days ago to see if that will help him over this virus, and honestly, as of tonight, I believe it just may be working! Thank Jesus! Today, we also got another x-ray of his lungs to see if they are clear or not, praying the results tomorrow will show they are!
Lots of love, time and prayer are going into this little munchkin so far and I believe in the power of unity!
Please continue to join us in prayer for Dawson and our little family during this sick season, it is much harder on him than it is on most babies, being that his facial structure prevents proper airflow even without sickness. Huge thanks to our nurses who help us every day! Thank you to each of you for reaching out and encouraging us! Christmas holiday is a rough time to be going through all of this for sure! We appreciate all the thoughts and prayers that help keep us going!
