(If you didn’t know, I’m writing these posts in numerical order so go back and read 1 and 2 if you would like.)
Ive been putting off writing this post because its a sore spot and I dont like to harp on things but I do need to write it.
A few weeks ago I was staying home with Jude, who was two months old at the time and now 3 months. He seemed pretty grumpy from the time he woke up till around 11 when I felt his forehead and all of a sudden he was burning hot. He smelled like a straightening iron. I was terrified. He was too young to be getting sick already. Since he has CF getting sick is a much more serious issue than it would be for the average baby. I took his temperature with my Kinsa thermometer, which is the most usefull thermometer Ive ever used and has been the most accurate. You plug the kinsa into your phone and it connects to an app that you read the temp from. You can use it for the underarm, anal or mouth. It will tell you what you should do about the temperature and asks you if you have certain symptoms so when you go to the dr you can keep a record of it. Judes temp was 102.3 so the kinsa app told me to get to an urgent care immediatly, based on his age. I took Jude straight to the urgent care kids that is connected to his pediatrition. I prayed and prayer the whole way there that he wouldnt be sick and it wouldnt escalate any further. We saw the Dr at urgent care, which was an ordeal trying to do the paperwork and waiting to be seen. A bunch of people that came after us went first because they had done the paperwork already and I had to pay a 40 co pay to even be seen. They make you pay that and then after insurance goes through they charge your card with the remaining amount which I think is wrong. Anyways after all thay Jude was finally seen. The nurse was really sweet and Jude was totally flirting with her! The Dr looked at him and listened to his chest. He said his chest sounded clear and no ear infection or red throat. He did have a fever still at 102.3. The Dr ran a flu test and it came out negative so no flu. We did a chest XRay and the dr said he didnt see anything to be concerned about but he wpuld send it to a specialist and call us if anything came up.He told me to give Jude tylenol every 4 hours untill his fever went away. Jude and I went home and when we got home I took his temp and bam, no fever. He still didnt feel good though and was screaming and just being very angry. After a couple hours I finally got him to calm down. Then my husband came home and told me that we need to get to the hospital asap. I had left my phone in the car for the past few hours. The dr had been calling me and I didnt answer. Im terrible about answering the phone but I make sure to check my phone more now. I returned the drs call and was informed that Judes xray showed pnemonia in his lungs. They had a room ready for him at Childrens hospital in dallas so we went right away. Ive never had to go to the hospital on such short notice so I had no idea what to bring so I paniced and didnt bring the things we would need. I did get everything Jude would need but nothing my husband and I would need as Jude was priority. We got to the hospital seamlessly with no traffic or getting lost which was nice. We only had to wait about 10 minutes to get to his room.
He didnt have a fever anymore once we got there.
He was given a bag from a Cf program with a blanket and toys for him and toiletries for us. It was so nice to know that someone cared and understood that the 1st hospital visit is hard for New CF parents. They provided a cool mobile for jude to look at during his stay.
Because they found pnemonia in his lungs they gave him IV antibiotics and wanted to keep him overnight and see how it goes.
I was so unprepared to stay overnight! Next time I will be sure to bring pillows, blankets, clothes and toiletries because my husband and I would have felt alot better with those things. We know now for next time and I keep a bag packed at all times now.
Jude seemed happy the whole time we were there besides having gas and not wanting to breastfeed there. I dont know what it was but he would not latch on at the hospital which led the nurses to think I needed a lactation specialist. They didnt understand or believe me at all. He breastfeeds perfectly fine everywhere else. I think the antibiotics made his tummy hurt and made him feel bad.
We ended up staying for 3 days to make sure the pnemonia cleared up and it did! This hospital visit resulted in more home care treatments. We were told to give Jude twice as much enzymes before every feeding. We were given a nebulizer and would need to begin breathing treatments daily. He was prescribed albuterol twice a day and pulmozine once per day until further notice.
These new treatments were scary to me. I didnt know how we were going to afford them. I hated that Jude would need these treatments everyday for the rest of his life just so he can stay healthy.
Going home from the hospital!!
I think the hospital visit was a wake up call to me as for how much CF would effect Jude and our whole family. When I got home I got serious and more organized. I wanted to make his treatments feel normal and his schedule to be fixed. I wanted the house to be clean and dust free. I wanted to find programs to cover his meds. All of these things had to be done and now if I wanted to make the best of things.
My husband and I got rid of all the curtains in the house as dust is horrible for Judes lungs and the rest of us too. Curtains are too hard to clean so we got rid of them. It brightened up our home and made it seem bigger anyways.
We bought a dyson vacumm cleaner that was recommended by the athsma and allergy foundation to keep our carpets dust and allergen free. We put a humidifier and air purifier for Judes
I got a dry erase board and wrote a list of his treatments so we can make sure we did everything he needs for the day.
I put together a home binder to keep all of our info organized. I also filled out Judes info in the CF binder that the CF clinic gave us. We bought a cart to keep Judes nebulizer in. It has room to keep his vest machine once he needs that as well. The cart is nice to have so that we can do his treatments anywhere.
I use this boon spoon to keep applesause in to feed Jude his enzymes. Hes lucky he gets to eat applesauce. He loves it! We never had a problem getting him to take his enzymes. I use a eat poo pee book to keep track of treatments and feedings.
I found a few programs that cover a percentage of his meds. I found a grant for Jude that will pay up to 15,000 this year for his meds so hopefully all of his meds will be covered for now. Im so grateful to have found these programs!
We are so lucky so have a great team of doctors to help Jude on his CF journey! Iam more confident than ever that Jude will have an amazing life. We are doing the best we can and I leave everything else up to God.
If you or someone you know has CF Please let me know of any other ways I can make my sons treatments and life easier.