We have spent Wyatt’s 8th bday, Chloe’s 8th bday, my bday, Father’s Day, Halloween, Thanksgiving, Christmas, and now we add Memorial Day to the list. Soon we will be able to add Flag Day and Juneteenth!
Exploring the teen room and going out and about! Sitting upright strains Wyatt’s neck but that means the process is working. Traction works more effectively sitting or standing according to the doctor. Our plan is to get out of bed at least 3 times a day. The goal is to add weights up to about 1/3 his body weight or as much as he can tolerate. So far the plan is to add two additional pounds a day- one in the morning and one in the evening. He has 13 lbs so far and seems to be tolerating it fine. All this seems so old school! It works but I feel there is a market to modernize this method to prevent human error and make it more efficient such as the angle of the pulley when laying down, tension of the rope, and adding additional weight. In order for restroom use, sitting, getting out of bed, the entire system must be disconnected and reconnected to another system. It takes 3 people. During the process of getting out of bed and walking to the chair, etc… someone has to pull on the halo so traction isn’t lost, while another person connects and disconnects the weights and the third person helps to keep him steady. I feel like someone can invent a portable system that can travel with the child. Most nurses here are familiar with traction but it’s not common. The last child here having traction was in February.
Wyatt has been eating more, which is a good thing for him! What I have read, the stomach has more room to expand in his abdominal cavity. Everyone has been wonderful here! I saw that a nice sun-filled larger room was available and since we are here for almost a month, I requested we move and they moved us last night. A small change makes a huge difference. Dr. Berkowitz, Wyatt’s original doctor who placed him on ECMO at birth and resuscitated him at 1 day old from cardiac arrest just called me on a holiday weekend, on a Sunday to check in and see how he’s doing. Hopkins is a special place! The nurses have been great and so accommodating. Several people are asking for Wyatt’s contact info and if he can have guests. Yes! Up to four people are allowed in his room. His email is wyattkoger@gmail.com. He is also checking his school email and you can email him or contact me for his phone number to call or text.
Wyatt and Dr. Berkowitz, who has been with him from birth. An exceptional doctor!
Mrs. Fitzsimmons, his counselor gave him this sloth. It’s so cool, you can warm it in the microwave. Thanks to Aunt Tori for the snake. It makes great head support!
The weights
Double windows is a commodity in a hospital!!
No comments:
Post a Comment