So its the beginning of a new week, THANK GOD! I am really hoping that this week is a better week for my lil' man. Last week was horrible for him. He had been wheezing like crazy, coughing attacks everyday. Yesterday was the worst for him. When he gets sick, I try to tell myself to stay calm,and do not bring him to the hospital unless I know I have to, and most of the time I know when. I dont know why, but I always call and ask the nurses in the ER what they think, even though I already know he needs to,and everytime they say the same thing..lol. I think its me not wanting him to go (of course) but I know he has to so a part of me hopes that they say he is fine, even though they have never said that..lol.Crazy Me!!
Anyways we made a hospital trip yesterday. He had woken up in the morning with more drainage from his ear, so I knew it was an ear infection, but I thought I would treat it with his ear drops and Tylenol until we went back to the DR Tuesday. He was better with Tylenol and his ear drops, but he would change in within seconds. One minute he was walking across the room (YAY!) the next he was falling asleep trying to catch his breath while laying in my lap. His oxygen was running low, but he did not seem to be struglling to breath more than he already does. Finally in the afternoon, I could not handle seeing him that sick, so I packed the kids up,and we headed up there. His oxygen at home was going as low as 87 at times, in the hospital it crept down there but it pretty much stayed at 90 for the post part. They gave him a little supplemental oxygen and some breathing treatments with saline so that we could moisten his membranes. They did a RSV test, and that was negative THANK GOD. With the TBM he can get REALLLLLLY sick and it could potentially kill him. SCARY! They did a chest xray, NO PNEUMONIA!:) But he still has bronchitis, The amazing DR said it did not look much different from the xray we did the end of December.
I had a choice of letting them admit him or bringing him home, well the worst part with TBM is there is no treatment, so other than having oxygen RIGHT there when he needs to there is nothing else they can do at the hospital. And I can tell when he would start needing it so we would have plenty of time to get up to the hospital if we needed to. I just have to remember to stay calm, and remember what signs to look for. I feel so bad for this baby. Its soo hard for me to know that there is nothing anyone can do, I really hope one of our Drs somewhere agrees that we need an oxygen tank on hand at home. Not sure how hard it is to get one, but it would definetly make me feel A LOT better about things. I know he needs one and I am sure they would agree, but we were hoping it would not come to this point, but it has. I try to stay postive and remember that things happen for a reason, and God would never give me more than I Can handle, and I just need to have faith and trust the Lord with this. Kaesyn is in great hands from myself,family,friends, amazing Drs, Respitory Therapists Nurses, and the Lord. I know Kaesyn will come out of this and I know he will do GREAT!! We are truly blessed to have so much support, even though sometimes it felt like we had nobody. It makes me feel so much better now that I KNOW and FEEL that the Doctors know something is wrong and the are taking it seriously. Before his diagnosis I just felt crazy sometimes!! He is doing a little better today, he is still wheezing like crazy, but as long as we stay on top of the meds he seems to act okay for the most part. His stats are still at 88-92 92 is his baseline thats where it usually sits,sometimes its higher but most of the time 92.
His med list is now :
Pulmicort 2z daily
Atrovent Every 4 hours
Prevacid 2xs a day
Zyrtec 1xs a day or every 6 hours as needed
Amoxicillan 3 times a day until gone (for ear infections)
Prednisone once a day until we decide to start weaning him off of that again.

Anyways,
Kaesyn is starting to walk, he has been taking 6-7 steps at a time and I could not be more excited!!!! I am so ready to see my babies chasing eachother around the house laughing and giggling. They make my heart melt! Gabby is starting soccer here soon, Im expecting a phone call from the coach to let us know when practice is anytime now!!! SUPER EXCITED ABOUT SOCCER SEASON! Every season she progresses more and more. I totally LOVE watching her play, I turn all sappy and cry everytime she makes a goal! I am one proud mama!!!!! Hope everyone has a great Sunday and a Great new Week!