Thursday, September 6, 2012

One week ago

One week ago, my world was getting ready to be turned upside down. We are doing very well. We have a new normal now that includes two oral medications sprinkled on Clive's food and a shot given to him by me everyday, but we are doing well. He seems to be responding to the medication as he has been seizure free since Sunday. He is laughing and talking and cooing way much more than he was too! And almost crawling! So things are going very well.
We just keep praying for a normal EEG at the end of the month!

Monday, September 3, 2012

For me to keep track

Friday, August 24. Noticed Clive rolling his eyes and raising his arms.
Tuesday, August 28. Took Clive to pediatrician.
Friday, August 31. Clive had his EEG. It was abnormal. Jo, the NP for our neurologist, was wonderful! She goes to our church. Made me feel so much better. Dr. Knowles is the neurologist and his wife used to work with me at PlayCore. God knew I needed some people that I had connections with. Here's is where we start to see His hand in all of this: Our pediatrician didn't wait and sent the paperwork straight to the neurologist. Jo, recognizing my last name from my singing a solo a couple of weeks ago, pulls the paperwork and immediately schedules the EEG. Clive is diagnosed with infantile spasms, which means that if these spasms were allowed to go on, in two weeks there would have been irreparable brain damage done.
Once the EEG was abnormal, then we are informed that we will need to be admitted to the children's hospital here and to be prepared to stay until Monday or Tuesday. My mind is going a million miles an hour at this point. I'm numb and just functioning on auto pilot. Aside from these minor episodes that he has maybe twice a day, he's meeting his milestones and growing normally. What do you mean he's sick?!
We are allowed to go home and get our stuff and then go back to the hospital. My mom takes Zoe with her just so she doesn't have to be alone. The other three are at school.
We get settled into a room and prepare to be there awhile. Clive weighs 20 pounds 5 ounces and is 27 inches long. Adam and I start doing online research on infantile spasms which causes great concern for Clive's future. Eighty percent of children who have this have significant developmental delays and learning disabilities. At one point, however, while we are praying, we have a reality check. We are not dealing with a life THREATENING issue, but a life ALTERING one. We can face anything. His life is not in danger. Still, prognosis is not great. An MRI is scheduled for Saturday morning. Dr. Knowles is preparing us for there to be some sort of brain deformation because 80% of kids with this have some sort of brain deformity. Friday they take blood and tells us he will start ACTH injections immediately.
ACTH is a steroid injection that I will have to learn to give him daily for a month. Deep breath... He gets his first injection on Friday.
Adam goes home to meet the kids after school, trying not to upset their routine as much as possible. Annabelle's birthday is Sunday so we are preparing her for only one of us being at her party.
While Adam is gone, a social worker comes to my room to talk to me about the injections. She tells me not to worry about the cost, if my insurance denies it, it will still be covered. I'm thinking, why is she talking to me about cost? She tells me it will be delivered to my house and a pharmacy will be calling me to arrange it. This is significant because we have been admitted specifically to get this medication. We can't go home until its been delivered and it is Friday before Labor Day weekend. At some point, my friend Karla shows up. It was around 2:00 ish. They had just told me not to feed him for the next two hours so they can do the MRI. I say I thought it was tomorrow? Nope, it's been moved up. I text Adam and tell him it's going to be at 4:00. They will be putting him to sleep but not to worry Karla was with me. Karla arrives as they are trying to get an IV in Clive's fat feet or hands. They can't do it, he's screaming, great fun. MRI comes back in, says we've been bumped until 9:00 the next morning. Sigh of relief. They stop trying on the IV and I feed sweet Clive. Karla and I spend some time crying and laughing together. Christine shows up and Karla leaves. The pharmacy calls. I talk to the pharmacy while Christine loves on Clive. The lady at the pharmacy says that five minutes later and the medicine could not go out on Friday. Which means that five minutes later and we wouldn't have gotten the medicine until Tuesday because of the holiday. Wow. God again. Then she tells me that someone has to be at our house to sign for the medicine. "It's $30,000 a vial and you're getting 30 of them." I about passed out. Yes, I have the equivalent of three very nice houses in my refrigerator. I jokingly asked Adam if we could hold one back and pay off our cars with it! Here's another God moment: the social worker told me she has only seen insurance pay for these injections one time. The pharmacy lady tells me our insurance approved it and how would I like to pay my $40 copay! God is so good. Of course, at that point I would have paid anything, but God took care of it.
While I am on the phone with the pharmacy, a nurse anesthetist comes in to discuss the procedures for the MRI in the morning. Nothing I didn't already know. They were going to give him IV fluids through the night because he can't eat after midnight. They will put him to sleep for it.
Funny side note here, this guy's name was Adam. My Adam was taking care of the other four kids so in the room when Adam the NA arrived was just me, Christine and Clive. The NA Adam thought we were a couple. Christine was holding Clive while he was talking to me and she asked a question for me. It dawned on both of us about halfway through his visit but then we both were trying not to laugh and didn't want to embarrass him. When he left, we were both laughing so hard, there were tears. It was a much needed release. He had definitely had his sensitivity training!
Mandy shows up bringing chocolate!! Very much needed! Christine leaves. See how good God is? I thought I would be alone, but God sent my friends for me. Adam was able to take care of the other kids without worrying about me being alone. And then I wasn't worrying about the other kids either. He is so good.
Mandy stays until Adam gets back and we have some good prayer time together. I'm also literally getting hundreds of texts, Facebook messages and calls. Phone calls from pastors at our church: Robby, Bryan, Nathan,
Hal, Mark and Barry and Joel. So great.
We hang out and get settled in for the night. Adam and I do some research which did not leave us with a good picture. Basically the only hope for him to be normal is a clean MRI in the morning and the odds of that are not in our favor. We promise to stop reading. Adam leaves because our room literally has a couch, a chair and a huge crib in it. We are both crying and exhausted.
Nurses come in at 11:00 to start Clive's IV. They still can't get it in his arms or feet so they put it in his head. Sounds terrible but I was actually relieved because this time, they didn't try to put it in anywhere before they decided to put it in his head. I feed him a bottle around 11:30 and he goes to sleep. He sleeps all night! Another God moment. I don't sleep well, but I napped a bit, read my Bible and watched some Downton Abbey. Around 6, Clive sort of stirred so I got him and laid him on my chest and we both slept.
At 7:10, a nurse comes in and says "Okay, they're ready for you in MRI." Oh my goodness! I wasn't even awake! I ask her to hold Clive so I can go to the bathroom and brush my teeth. Clive is talking and cooing and just happy. I text Adam who gets my mom to come over. She was planning to stay at my house and wait for the medication delivery anyway. They take Clive from me to put him to sleep and do the MRI. I cried but I felt such a peace. Can't explain it. I go fix me a cup of coffee and wait in the waiting room. Adam gets there and we cry and pray together. We know this is a big deal. It takes about an hour and they take us to recovery to wait for him. While we are sitting there, Dr. Knowles walks in, looks at us and says, "Oh, you're done! I'll go read the MRI then." We are reunited with Clive who is awake and happy. He promptly eats two two ounce bottles of sugar water which he keeps down and we are taken back to our room. About 10 minutes after we get to our room, Dr. Knowles comes in to tell us that the MRI looks completely normal!!!! No abnormalities at all! Praise the Lord! We are so happy that we are crying once again! He says that while we will have to watch him and we may deal with a learning disability of some sort, he fully expects Clive to grow up and have a normal life. He also says that as long as the medicine gets delivered and I am comfortable with giving the injections, we can go home! This is still Saturday!!! Again, God is so good. Dr says it will be about 8:00-10:00 tonight but still tonight. Unbelievable.
Adam leaves to go take Jude to his football game and Clive and I are hanging out. My mom and Zoe and Annabelle come up to visit.
The nurse comes in to show me how to do the injections. She tells me they will be in prefilled vials so she showed me the needles and I give my first shot! It went great! He cried a little but I loved him through it and we both survived. My mom and the girls leave and Clive and I take a much needed nap.
Nathan and Amber Frick come to visit and they stay until Adam gets back. We leave at 7:35, stop by PF Changs and get home!!! So nice!
Clive is so happy to be home. He's rolling around on the floor and so happy to be down!
Saturday night, I look at the medicine that they delivered. Not prefilled vials. My vials have mL on them, my directions are in units. No idea! So Sunday morning, I call the doctors office. Jo, the NP, calls me back. She asks how the MRI went and she audibly sighs and says "Praise the Lord!" Then I go on to explain my dilemma. She says she would be more comfortable if she could show me. At this point, I am afraid they're going to make us go back to the hospital. Then Jo said she would come to my house that afternoon! Again, God is so good! It was Annabelle's birthday and I didn't want to spoil that! She comes over and shows me exactly what to do. Amazing!
So that is where we are now. Waiting and watching but with a much better prognosis than what we thought a couple of days ago. God's hand was present throughout this whole experience and I cannot even talk about it without crying. He is so very good to us.