Sweet B was very close to being admitted to the hospital today. Against our better judgement, we met our friends at the zoo. She had been doing decently yesterday so we thought that her episode had passed. This morning when she woke up the retching and begging to go back to bed began. In my heart I knew that we were doing the wrong thing, but we had already made plans with our friends. Inside the zoo, her face became very pale and she began retching hard. I knew that it was time to call the hospital. Our normal protocol is to wait 24 hours and give her meds to try and stop the attack. I got very scared and didn't feel that I had it in me to wait. This has been going on and off for almost a month. I called the on-call GI who agreed that she needed a room. We left the zoo and began driving to the ER but then realized that we would be waiting hours in the ER and it would just be better to go home and wait for the room.
As soon as we got home, after an hour of driving, we got the call that the room was ready (of course). The state of my house is a disaster because I simply have not had the time or the energy to clean it. My plans were to clean for an hour and do as much as I could. I couldn't bear the thought of my mom or anyone coming to pick up stuff for us during our hospital stay and seeing what had happened to the house. I ran around desperately picking things up and doing dishes and meanwhile Sweet B seemed a tiny bit better. We decided to keep her home for the full 24 hour period to see if we could abort the attack. I called the GI and she agreed to trust my instincts as the mom.
A few days ago it was brought to our attention that Cyclical Vomiting Syndrome (CVS) could be due to other problems such as metabolic disorders or other things. This lead me to google which lead me to very bad things. I've seen that CVS can be a sign of fatal diseases such as mitochondrial disease. I told the on-call doc that Sweet B needs to have this particular test done to see if it is a metabolic syndrome. She agreed to it. Embarrassingly I asked her if Sweet B was going to die and if she had these diseases and she couldn't assure me of anything--she doesn't even know Sweet B. I began crying and told her I had been googling and instead of telling me to get off google, she said that these things could be wrong with her and that's why we have to test. CVS could mask a deadly metabolic disease. In one-third of children with CVS, they have metabolic disorders or mitochondrial disorders, some of which are fatal.
I've not been well and frankly, I've had two friends tell me that they are concerned about me. My weakness is google and obsessing on all of the things that could be wrong with her, and for the last few days I have been a wreck--googling and researching and looking at studies that have been done. Sometimes knowing too much is not a good thing. The fact that she went into full-on episode today was enough to almost throw me over the edge.
The plan is to re-evaluate tomorrow morning (Sunday morning), and if she is still in episode, then we must go. Meanwhile tonight I am packing and cleaning because I just don't want my house like this. It makes me feel like a terrible homemaker and mom and I'm praying that I will get a lot of it done tonight, in the middle of administering meds and nursing the baby and watching him of course. So far I've done dishes and organized a lot and Mike has vacuumed. There is still so much more to do but I will have to let it go. I have done what I can. I think I will sleep with Sweet B tonight. I am scared of all of the meds we have given her.
It has become clear to me that I need support with raising a child with a chronic illness. CVS is devastating on the lives of the person who is ill and their families. Adults are unable to work and children miss so much school and it is completely disabling. We have gone from having a micro preemie who didn't eat and was given a g-tube, to a child with a tethered cord, to a child with cerebral palsy, to a child whose CVS diagnosis makes the quality of her life and our lives diminished. I obviously need some sort of support group and a counselor who can give me strategies to get through her episodes, because by day four I am a mess. Watching your child suffer endlessly and not knowing why and not knowing if she is going to live, is something that should only be reserved for the people in hell, certainly not a family who has given up everything to give this child the best shot at life. (And maybe, just maybe, God could have had a little empathy for me and realized that I am not the strongest person in the world, and maybe another mother would have handled this much better).
It has been a really terrible month that began with a car accident that I was in with the kids while on the way to a friend's home. It was very scary and it was very much not my fault, but there were no witnesses and therefore her insurance has refused to pay, so we are left with a deductible to pay, which we don't have it all, and a dinged up car (our only car). Then began the retching, which turned into a virus which all of us got, and then turned back into retching and this is when I lost it I suppose and I could not clean my house. Where was I going with this?.....Oh, I guess I was just saying that this has been a crappy month.
I have learned through speaking with other families of special needs children, that you quickly learn who is there for you...Who will take the time to pray for you or offer you kind words of encouragement, through texting or message. And you unfortunately learn who won't do these things. It is an eye-opener certainly. Was that a bit too honest? Probably. But it is the truth and I've been so fortunate when I see such good character and empathy in people. I am endlessly grateful to those who are keeping me above water right now and have been there through this most difficult journey over the last three and a half years. It is my promise to do the same for you when you experience hardship and need someone to hold your hand and tell you that it's going to be okay. Humans need other humans. I've met a few friends recently who are very much encouraging me right now and I hope to one day repay that favor.
I will try to give you an update tomorrow, but I cannot promise anything. Today I was completely unable to talk to anyone due to fear. I wrote a very small group text and sent it to those who knew what was going on today. It was difficult to even do that. I just don't have it in me to explain the meds and what I'm doing to help her and what our plans our. It's exhausting. So it was a very general message.
It must be of no surprise to you that my faith is struggling. Hell, we haven't even been able to go to church consistently because she always is having an episode. When we finally decide to try a certain church, she is either in an episode or we or too dang tired, or we know that we have to take advantage of a good day and go and do something fun.
So while my faith is really not there, it is about as big as a mustard seed, and according to God that is all that I need right now. I accidentally spilled mustard seeds in my kitchen and they are very small, but I'm thinking that pretty much sums up the size of my faith right now. So I call on you, my faithful Christians, or whatever the hell you are (see--if I was a faithful Christian right now I would not be using such words as "hell"), please pray, or send out light, or do a rain dance for our Sweet B...She really needs it and so do we.
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