Last week on January 30th I woke up to go to boot camp. Nurse Lois told me Jordan had a great night and had slept 7 hours. Which of course was great news. When I got back from boot camp Lois was a little shaken up and told me Jordan had thrown up a dark brown color. I helped her clean the mess up and went upstairs to shower. When I got down he had thrown up 2 more times. I got the kids off to school and scheduled an appointment with the doctor. Nurse Donna came and we took off for Dr. Pai's office. Jordan performed for the doctor perfectly, he threw up for her as well, dark brown again. They then sent us off to the emergency room. We went to Randall's children's hospital and he performed for the doctor in the ER. They admitted us after confirming he was throwing up old blood.
Jordan threw up 2 more times that night. His ENT came and visited him. I asked if it could be his G Tube that was causing problems. He did not think that was the problem. They first thought it had to be something viral going on. They tested his blood to see what he platelet count was. The tests came back perfectly. It was absolutely confusing to the doctors and frustrating. The next few days were spent waiting for some of the tests to come back seeing if he had anything growing on his sample.
Here are my facebook posts I posted about the event:
I have an amazing friend! I had to take Jordan to the hospital today because he has been coughing up blood. I have been gone all day. She took care of my other kids, did my laundry, got my kids to do their jobs, brought me dinner at the hospital along with my pj's, phone charger,ipad, bar of chocolate and even remember to pack in my toothbrush! Thanks Angela! Everyone deserves/needs a friend like you!
I am sitting here at The hospital holding my sick little baby. Here's a quick update for those who have been asking. He has thrown up large amounts of blood twice today. Once with only me in the room. Talk about scary and heart wrenching. The docs are still speculating and ruling things out. His ENT Doc traded out his trache and scoped him checking out his lungs. All clear there. Now we've narrowed it to GI problems or a virus. He has been given ulcer meds to hopefully keep throw up at bay. Now we are watching and waiting. Please keep him in your prayers. Thank you to Jana and Rockelle for breakfast and lunch and chatting with me, Kim for taking my boys, and Ang for taking Brooklyn to dance. Wow, I appreciate all who are constantly helping us! Thanks!
Wahoo! Good news! After 2 more rounds of throwing up they docs decided to do an endoscopy (upper GI scope). They didn't choose to do it before now because they'd have to put him under. After the scope the doctor approached me and said you might laugh at this. Remember the question you asked me the 1st day? Which was, "could there be something wrong with his G tube?" That is what it was! His G tube got dislodged and blocked off his intestines. It rubbed on the stomach lining and caused bleeding which couldn't go anywhere but up. Amazingly simple. He replaced the G tube with a smaller size and we are starting him on small doses of pedialite and will hopefully get to start on food tomorrow. If all goes well, home by Monday! Thank you all for your well wishes and prayers! Can't even begin to tell you the load that was taken off my shoulders. So happy for the outcome!!!
It took a couple of days to get Jordan back to his normal eating schedule. Once he showed his body could handle the feedings we were released on Monday. It took the rest of the week to get his stomach back to digesting as quickly as it should. It is amazing how before a feed I can check the residual left in his stomach to make sure he is ready for his next meal or if his feeding needs to slow down. Having a GTube is an interesting experience. A baby without eats when he is hungry. Overeating and getting the right amount of calories is not a problem. When you depend on your feeding tube everything is calculated out perfectly as to what he should be having for his weight gain.
As of today he is about back to his pre hospital weight. He is 11 pounds 6 ounces. Really filling out his 0-3 months clothes. So nice to see his growth and to see him starting to do all the things a 3 month would do. He is 4 months old, but he is catching up. He smiles a lot and warms the heart so much. He is a sweet boy. He has the nurses that take care of him wrapped around his finger. I am so glad they all love them like they do and take such good care of him.
After we got out of the hospital we got some extra nursing hours for his transition back to home. It was nice to have the extra help since I came home to sick kids. Now, we are all healthy and doing well. And our nursing hours are sadly back down. Even though I am going to miss having my day nurses who I also refer to as my in home therapists, I am thankful to have night nurses so I may get a good nights sleep, exercise and get the kids mostly ready for school before they leave. I think I mentioned it before, the state through the "Medically Fragile" program gives us $10,200 dollars each month for nursing care. That ends up being 283 hours divided up in the month to be 9.2 hours each day. So, even though I am bummed I don't get more nursing ours, I am SOOOOO thankful to have the hours I do. That is over $120,000 each year paid by the state that Ryan and I don't have to come up with. That is a lot to be thankful for! Amazing too what insurance will pay for a child with issues. I remember always complaining because of what our insurance wouldn't cover, now I have a whole new respect. They cover all his supplies and even his formula. When does insurance pay for formula? Crazy! So, don't feel bad for us when I say we are losing nursing hours. We are pretty blessed to have what we do!
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