The Good, The bad and The ugly...

Im going to start with the ugly becaue that is how i feel. Just ugly or really I guess mad but being mad is ugly and I dont like it at all. Maybe I'll feel better after I post this update. I am all kinds of mad right now. I am angry mad, sad mad, hurt mad, upset mad, the list could go on and on. Let me explain.... On Friday, I stayed home to allow my arm another day to recover from the surgery I had done last week for a compressed medial nerve. Thats a story for another day. My nurse came in about 7:30 that morning to get Lydon out of bed and she found his entire GJ tube completely pulled out and laying in the crib! This did not make me mad. So we started scrambling to make phone calls and try to make arrangements to get to the hospital to get a new tube placed before the weekend while Mommy was home and able to take care of it. That did not happen of course but this did not make me mad. We talked to the nurse and everyone else who needed to be informed and consulted and finally put him on the surgery schedule for Wed. In the midst of all this trying to come up with the quickest easiest plan to get Lydon taken care of is what upset me and led to me being mad. See, for the last year, every single time we have gone into the hospital for any type of procedure we have ended up admitted usually in the IMU unit because of respiratory distress or acidosis. So, the idea was brought up about replacing Lydons tube in Interventional Radiology instead of the OR with traditional anesthesia. This is where I got mad. I am mad because in a city as big as Houston and all of the WWW, I feel like I am doing all of this and making decisions like this alone. To clarify, I do not mean that in the truest sense of the word. I have my wonderful husband and my family and friends who often send us uplifting messages and words of encouragement and listen to countless conversations but it angers me that I feel alone with this diagnosis and everything that goes along with it. In the beginning, I felt like maybe having a close knit group of moms was the silver lining in having to deal with such complicated medical issues but now, I feel isolated from the mito community and I’m really not sure why? Maybe it was because I sought a second opinion? I dunno… I went to who I was referred to…we went through months of testing and we were then politely dismissed from that office. I sought a second opinion just like I was told to but somehow it seems like that is when things changed. Thats what so weird to me. I didn’t want for Lydon to have these problems. I’m not able to “wish” his stomach into working or not working. I’m not the one who makes him react to the anesthesia he receives. I am the one who holds his little body and feel the tremors during the night and sees the glassy look in his eye. I am the one who cleans up vomit everyday and sees when he is too exhausted to play. I am the one who gives the slew of meds several times a day. I didn’t look for somebody to label him anything in particular. I just wanted somebody to recognize his issues and connect the dots. That is what happened when we found/saw Dr. Frye. Now he has received an incredible opportunity at Arkansas Children’s Hospital. This makes me very sad for us and what we may have to go through all over again to establish ourselves with another neurologist here in Houston but I am sure he will be such a blessing to the people of Arkansas. So, that’s the ugly. I was mad because all I wanted to do Friday afternoon was call or text or email an experienced mom who lives with all of the daily issues that we do and get some advice about the Interventional Radiology route. I’ve never faced these issues as a mom before. So, here’s the bad. I’m sure you may have already figured this out but “the bad” is that Lydons tube is out and we will be having surgery on Wed. We have to be there at 6 am in the morning for the tube replacement. The good news is that Jono will be with me and our wonderful pediatrician is on service in the hospital if we do indeed end up admitted. The other good thing is that we have an incredible family, some incredible friends and a great group of doctors with one of the best hospitals in the country. And above all…we serve an awesome God who meets our every need. Say a prayer for us in the morning. I will update when it’s all over.