This Could be the Start of Something Good

Well, this could be the start of something good, wouldn't you agree... Tomorrow Sophia makes her 8th trip to the Operating Room. She will be put to sleep yet again to have her airway checked and her nose dilated again. This means she will have an instrument go up her nose and stretch and widen her nasal passage and she will have a bronch scope go down her throat to check to see if her airway is open and no longer collapsing. The past scope showed that her airway remained open when they performed the scope so we are optimistic that it will look good again. After her last trip to the OR, we were able to bring Sophia home that night. We hope that to be the case again for this trip. She will be very sore and tired afterwards but we can manage that at home granted everything else is good too. She normally has bleeding afterwards from her nose and trach, it looks scary but it doesn't last long. I am sure it doesn't feel good either. Prayers are appreciated for a smooth 8th trip to the OR and great outcomes. After the results from scope in the OR tomorrow, doctors will then be scheduling that long awaited sleep study in which they will pull Sophia's trach and see if she can breath without it. Scary thought. Therefore, hidden in tomorrow, could be the start of something wonderful. The official start to working towards getting Sophia's trach out. During our last appointment to pulmonary, the doctor informed me of something I had never been told before. Something that somewhat, floored me. She came in stating, "I must tell you forehand, that many children with CHARGE do not ever decannulate (get their trachs out)." What?!?!? I never have been told this. She then went on to tell me, "However, with that said, developmentally and physically Sophia looks great. Many children with CHARGE syndrome that do not decannulate have very serious heart conditions and do not come off the vent as quickly as Sophia has. With that I am optimistic for Sophia, and it is worth a try now." She then went on to say, that "I needed to tell you that upfront so that you are not devastated if this does not work, and I honestly do not think it will work on this first try but like I said I am optimistic about Sophia. If she fails, we will try it again 6 months later." I then asked her why she thought she was going to fail this time around and she explained to me that it could simply be that her airway still isn't strong enough and by age 2 the airway grows wider on its own despite the floppiness that it will most likely be wide even to stay open. Very worse case scenario is that it is a cranial nerve issue attributing to her breathing issues, in that case, well in that case I will just cross that bridge if we come to that. I cannot let my mind wonder down that path right now. So basically, with that said, the doctors our very optimistic that it is time to start this process with Sophia given her continuing improvements, but the reality is that she simply may not be ready at this time, but it is worth a TRY. I certainly believe you will never know how something turns out unless you try, so try we will. I honestly think it would take a miracle and many prayers for Sophia to pass the sleep study the first time around. We could use them. I cannot imagine our lives with Sophia without a trach. Actually, I can. I daydream about it all the time. Being able to drive around with Sophia on my own, the freedoms it will bring, the less worry and sleeplessness for all of us. It would be a beautiful change in our lives. We could go where ever we want and need, we wouldn't have to worry about having an outlet near by or the battery life of our suction machine. We wouldn't have to haul around an emergency bag and oxygen. We wouldn't have to worry about oxygen running out or ordering more medical supplies. We would be able to freely stay over night places. We wouldn't have to have a nurse with Sophia all the time (granted I love having my nurse support) but what people don't get it is that I would love to be able to have Sophia with me without a need for a nurse. A nurse isn't a free babysitter. She is present because at any moment an emergency could occur with Sophia and it would be neglectful on our behalf not to have a nurse with Sophia, especially when I cannot be there. I do need to work and sleep some times lol. Having the trach out would mean Freedom, on soo many levels. Thinking about those days ahead of us brings tears of joy to my eyes. So I ask for many prayers, that this truly is the start of something good, that perhaps she could pass the first sleep study, that she continues to grow stronger and stronger, that her airway heals, that she can decannulate in the near future, I pray for freedom. I pray for good changes. I pray for the wonderful healing days ahead. I pray for miracles. I thank you all for doing the same.

On a side note, I would also like to ask for prays for myself and my career. I had an initial interview for an art teaching position starting in August. I was told I could expect a second interview and my resume was at the top of the stack, however the second interview wouldn't be until May. I really need this job, so prayers are welcome.

Signing Time with Sophia

Rainbows and Cupcakes

It is not always rainbows and cupcakes, some days are blessings in disguise. I swear suction is going to be the death of me somedays. It's nonstop. Now add a sickly baby into the mix. I can only imagine that seeing/ hearing any baby with a cough is horrible, now add a trach into the mix. Sophia's coughing can be so hard that it causes her trach to bleed. That is a scary sight. This coughing only increases the ever constant suctioning. Do you know how awful it is to hear that cough- a coarse, strained cough being pushed through a straw in her airway, it's heartbreaking. Can you imagine seeing your baby cry, tears coming from their eyes, streaming down her red/purplish face from straining so hard, but never hearing a sound. It is the most deafening silence I have ever experienced. To watch her cry and hear no sound. I have tried to stay upbeat in my blogs because in most days I really do see the goodness in my life; however, there are days when you think hard enough and it becomes too much, too serious. I guess for those whom read this blog, the reality is that some days are exhausting and stressful. It is reality. It is okay. I do not need pity. I am just sharing the good bad and the wonderfully ugly. I have yet to have a sound nights sleep. I am up and down several times a night. Answering alarms, adjusting and reconnecting wires and tubes, waking out of sheer worry when things are too quite for too long. It's my life. Welcome to parenthood, yes welcome to parenthood where your child is trached and on oxygen and needs almost 24 hour a day suctioning. Yes, welcome to parenthood.


Tomorrow there will be rainbows. Tomorrow will someone bring me a cupcake. A chocolate cupcake!