Kindness Like Confetti

Raising A Fighter - Guest post by Amee Jackson (KLC co-founder)

KLC

My name is Amee Jackson, and I am the mother of a beautiful little boy living with Cystic Fibrosis. Cystic Fibrosis is a genetic disease that creates thick, sticky mucus in the lungs. This mucus has so much bacteria in it that it's vital for my little fighter, Roman, to do his daily therapy and more to keep it clear. Even after all of the medicine he takes, all of the germs I try so hard to keep away from him, and even the hours and hours of therapy- sometimes it's just not good enough. Roman is almost three years old and has already been admitted to Primary Children's Hospital twice so far. Unfortunately, we know that there are more visits to come. Each time we are admitted, Roman has to stay for about 1-2 weeks. Not only is being confined to a hospital bed hard for a baby, but it's also extremely draining for the parents. No sleep with a very sick child who only wants to be held. It's not my idea of a "getaway". 

Our first visit was when Roman was about 9 months old. He was hospitalized simply because he just could not get rid of a cough. Let that sink in... BECAUSE HE COULD NOT GET RID OF A COUGH. People don't understand how serious Cystic Fibrosis is. Just a simple cough or cold can send them to the hospital. This visit was hard, but the team of doctors and the staff we had were amazing to us. They were always checking in with me to see if I needed anything and were so sweet to Roman, bringing him toys and little treats.

I am so thankful for the respiratory team and the nurses at Primary Children's Hospital because they deal with so much from us parents. It is very hard being stuck in a room 24/7 because your poor, sick baby has to be in quarantine. I could never leave his side. The nurses dealt with my frustration so well, though. I have so much respect for them. They did an amazing job taking care of my son. I also appreciate my amazing husband for coming up to the hospital as much as he could, given his busy work schedule (these hospital bills have to be paid somehow).
 

Our second stay up at Primary children's hospital was so much harder than the first. Roman was about two and a half when we where hospitalized this time. He had caught RSV and we didn't even have a chance to fight it. We went in for a check-up and his pediatrician was so worried about his breathing stats that she immediately sent us to Primary Children's. Another CF 'clean out' with a minimum of a 10 day stay. As much as we didn't want to be there, everyone was so kind and welcoming when we arrived that it helped a little, even while knowing we were going back into quarantine. Roman got very sick this time and had to be put on oxygen. They started an IV right away to get antibiotics started. When CFers are hospitalized they usually have to get a PICC line, this supplies 24 hour antibiotics into them. While they are hospitalized, they do four chest treatments a day. That's TWO HOURS a day doing chest therapy while being sick. So as a mother, seeing how much pain and how uncomfortable my baby was and not being able to do anything about it killed me. I was completely heartbroken. The only thing I could do was cry and hold my baby. 

A couple days later, the skin around Roman's PICC line started to become discolored. So I called for my nurse and she could also see the difference. Eventually, they decided to do an ultra sound to see what was going on and they found a blood clot in Roman's PICC line. After meeting with the hematology team at Primary's to figure out how to deal with it, we decided it would be best to put Roman on a blood thinner so that his body could dissolve the clot. This meant he had to have IVs for the rest of his hospital stay. This made things even more hard because IVs can go bad fast, especially on a kid who wants to get up and move around. They where going bad constantly and Roman kept having to be poked over and over.

No two year old on the planet is going to willingly take a needle. This meant my husband and I had to help hold him down or distract him with every poke and prod. It killed me. It was so hard, but the staff was very patient with Roman and always tried their best to get it done as quickly as possible. On top of all the IVs, being on blood thinners meant even MORE needles. Twice a day. For six weeks. 

I know Roman has many more hospital stays to come, but I also know he will be in some of the best hands thanks to Primary Children's Hospital. The Cystic Fibrosis team at Primary's are amazing and do such a great job with Roman. I thank God everyday for the blessed life that I have, for the technology advances that we have today to help my son stay alive, and for one of the best children's hospitals in the United States. 

-Amee Jackson