This weeks conclusion......

I am very confused and I just do not understand. I feel so alone. Our neurologist "thinks" Kaesyn will be fine, and he does not need to be shunted. I have a copy of the dictation of the CT scan, and of course it did not make any sense to me at first, just because I knew nothing about what these medical terms mean. Now that I have researched, I understand these medical terms, however to me they make no sense what so ever. He is sending us to a neurosurgeon, why? I dont know. As a paranoid mother, for other medical issues my son has, I automatically think, he does infact need a shunt since most children his age with similar head circumfrances do have shunts from what I have read. (Kaesyns HC is 54.5 cm and he is 18mo old). Everything I read indicates that my son needs a shunt, and it scares me, more than anything. I feel so confused and so alone, and obviously very scared. I just really need someone that has gone through this to talk to, so I Can ask questions and see where Kaesyn stands with this. Is he really okay? Will he be okay? Do I need to fight to the core for an answer I am comfortable with? Will I even ever be comfortable with an answer. Through Kaesyn and his medical conditions, I have learned everything happens for a reason, even though we may never know we have to accept things the way they are and I have been able to do this, up until now. His airway disorder was so much easier to accept, even though I still had a hard time with it. I find my “job” is to research everything I can whenever Im not busy running him here or running him there or doing homework. I feel crazy at times. This is my whole life. I hate that this is taking over my whole entire life. We added 4 specialists this week over the 4 we already had. That does not include our PCP. List of Drs now include….
Pulmonology
GI Doctor
Neurology
Ent (who wants us to see a pediatric ENT so this is kind of ENT Xs 2)
Neurosurgeon
Ophthamologist
Heart Doctor
I took him to the ENT doctor, because CHOP wanted us to get an ENTs point of view on his TBM before we got up there. The ENT doctor was awesome. He said you need to see a pediatric ENT, for his TBM.
We need to get his heart checked. You need a caseworker to help you, so that way you have someone to help you out and go to whenever YOU need a question answered. The Caseworker can ask the drs for you and get back to you a lot more faster than the Doctors can and help you understand it better. Well duh of course this is what I need. This is why we were going to CHOP. I was never offered this so I thought that maybe our hospital we use, doesn’t have this service. But of course it does. All hospitals do.
I am so tired of feeling this way. I just want more info, and more after that and even more after that. I want a crystal ball to see what the future holds for my family. This is not fair to neither one of my children, even though this all has to do with Kaesyn, and he is the one with the “special needs” (if that’s what its even considered) it probabaly effects him the least. Gabby worries about her bubs, and I know it bothers her. She has to sacrafice time with me, so that I Can be there for Kaesyn. Its hard to take her to appointments because she is only 6 and well that’s just never been easy on anyone. She sees me stressing out and how emotional I can get. Kaesyn however, has no idea whats going on. Sometimes its hard for him to breath, but other than that, unless there is something that happens that Im not aware of since he can not say, there is nothing. I NEED answers July 7th when we see the neurosurgeon. I am demanding this to happen. I am tired of the waiting game. I swear that if we get through this summer, and find a way to make Kaesyn better, and even if we don’t, and he does better this winter than last winter, I then will believe that he will be okay. But last fall/winter/and some of spring (3 out of 4 seasons in the year!!) I know I cant deal with more hospitalizations, or Ivs, sleepless nights of watching him desat, ect ect. Please Lord just help me get answers and fix my baby so we can focus on other fun things and be positive about our future, so that we can SOMEWHAT know what to expect through this great life I know that have!!