Kaesyn is one years old, he was born Nov 24th 2008. He is a happy beautiful litle boy who lights up my whole entire life. I sometimes think back before he was even thought of and wonder, "well where was kaesyn" Even though I was a mom before kaesyn, (and not that I love my beautiful daughter any less, and nothing will break the bond her and I have together or take away everything her and I have been through) Kaesyn saved me, I was a young mom with my daughter (As well as Kaesyn) and did a lot of irresponsible things i shouldnt have done (thats how Kaesyn got here ..lol) After I had Kaesyn, I realized how fast they grew up, how happy they made me, and how important our time was with eachother (even though we wake up together, spend every waking moment;as well as sleeping moments, together) I was not interested in anything BUT spending time with Gabby and Kaesyn.
So this is where it starts, March of 09 Kaesyn got sick, coughed a lot, ran a fever, the whole 9 yards of having symptoms of pneumonia. The DR did a chest xray, and it infact came back as developing pneumonia. We got a nebulizer, stayed up night after night, got oral steroids, and it eventually got better. He still had a cough and every few weeks would even have coughing attacks (as a 3,4,5 month old)
Everytime he did so I would go ahead and give him a breathing treatment of albuterol through his nebulizer ever 4 hours. This went on and on every few weeks, hed have a little regular coughing but every 2-3 weeks it got BAD. I wasnt sure what to do as we live in the country and by the time Id get him to the DR or ER hed be done and theyd look at me like I was stupid. One day LUCKILY (finally in OCTOBER) we were out and about and he had an attack, we took him to the DR since they had a walk in clinic. The PA sent us to the emergency room ASAP since he was breating 90-100 times a minute. (little did I know anything over 50 is dangerous) We get to the ER they give him a breathing treatment(which i could have done at home) and they sent him on his way. The next night, he couldnt breath, he was groaning and making one of the scariest noises I heard. I headed to the ER, but of course, he had stopped, they did a chest xray which came back EXACTLY like it did back in March, infiltrates at the bottom lobe in his right lung,and he got a breathing treatment and the DR suggested we test for cystic fibrosis. OH yeah I was scared, for the whole 3 weeks it took them to get him in and tested, and get the results back. Ill never forget the way my heart pounded everytime my phone rang after the test was done. It came back negative. whew. But as soon as they came back negative everyone assumes, whew its not that he is okay. We seen a pulmonologist for the first time in November (8 months after the first episode he had) , he says its reflux, REFLUX FROM FOOD?!?!?!? We treat him for the symptom and he says if this does not help, we will do more tests. And also gave me an asthma treatment plan. We do the asthma plan, and treat him for reflux. He also did another xray, which showed THE SAME EXACT thing, infiltrates in his right lung. So a MONTH later we go back, and we discuss an UPPER GI test, and a bronchial scope. Well in between the appt and these two procedures he got sick. He was running 104 fever, coughing, wheezing and ear infection (dont think I mentioned the tubes put in in november) We took him to the ER , they treated him for his ear infection and went about our way, through the feilds to get home due to the horrible blizzard and the crappy roads we have leading to our house. Monday came and I took him bacdk to the dr, even though the ear was better, he was still coughing like crazy and wheezing. His oxygen level was at 93%, ?!?!?!?!? okkk soo a toddler/infant whatever a 13 month old is considered should be at 99-100%. But apparently it wasnt to terribly horrible, just horrible. ?? Doc put him on a steroid. Prednisone. 1.5 tblspoons a day. added on to his Albuterol Atravent every 2 hours, pulmicort 4 times a day (since his asthma is in the "yellow" zone, normally itd be twice a day) His prevacid and his antibiotic for his ear he got two days before. Two days of the prednisone did nothing, so I take him to the ER his cheeks are bright red, kinda like rudolphs nose. His oxygen was 93-92, but he was acting okay, he was happy and playing and flirting with the nurses. They went ahead and admitted him. Our DR here was trying to get a hold of our pulmonologist in KC at childrens mercy, but never returned his call. The next day we were released since he was doing better, and we figured the pulmonologist would want to see us in KC, so we packed and was ready for a trip to CM hospital two hours away. Never got a call. That night Kaesyn had the worse "attack" I have ever seen. He coughed from 5:30-10:00. He got his breathing treatments, didnt help. He broke into sweats and became limp and would pass out in between his coughing. I called the ER and they siad to give him cough medicine. (ugh!) he finally passed out frmo being exhausted and stayed asleep most of the night. In the morning I called the pumonologists nurse and she said he wouldnt be able to see Kaesyn until FEBRUARY! FEBRUARY!?!?!?!?!? Im pretty sure he needs to be seen now, im sure we HAVE to figure out what is going on NOW!!! So with a appt with the ENT doctor in topeka, I call his pediatrician that is in topeka as well and we squeeze into an appt there. She was irritated at all of this, SO AM I! His oxygen level ( ON A GOOD DAY) was 92% she said, if she seen it any lower than that she would definetly admit him. Niiice. He is already on everything we can give him, no more medicine was even an option. However, she is going to set up an appt with the asthma specialist and she is going to call the pulmonologist and try to get him in before then. If not she will set us up with another. (i really hope she does) Yesterday was a GREAT day for kaesyn, we had a normal day, he was happy all day, didnt have a coughing attack . He played, and laughed and was the Kaesyn I want Kaesyn to be. I hate how with every cough I want to panic though, cause who knows what is going to happen in between coughs. I just want answers. If it is something we cant do anything but what we are doing now for ,ok let me know. I want to move on with our life and be thankful for a healthy child, because other than this he is healthy. Im tired of my daughter being scared, and worried. I am tired of taking time away from my daughter because all these specialists have more important things to worry about.
So from now on, I will be posting here, for myself. For other moms maybe going through this. And just to keep as a record. :)
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