Picking up from my previous post.......(and continuing to write like I think with little regard to proof reading)
So, Case gets off the phone with Le Bonheur, and we start walking out to the parking garage at UAB Children's. We are a bundle of nerves driving home, trying to get home and get C's script filled before her 7pm dosage. We left B'ham and were pulling into the Walgreens on Co. Line Rd. at 6:30. AGAIN, thank you UAB for leaving us hanging for several hours with NO MEDS to give C. No Diastat, and no Keppra, grrrrrrrrrr! Thank god we didn't have car trouble or hit road construction. The Pharmacist at Walgreens was an angel! She was so sweet. She took my script, glancing at the hospital bracelet on my wrist, she asked who the prescription was for. I answered her, "my daughter". She then asked how old she was. I answered, "8 mo old". She then looks at me with the most concerned serious look on her face and says, "I know you need this now. I will get this medication for you as quickly as I can.". I said, "yes ma'am we do, thank you so much". I had hardly said 3 sentences to this lady and somehow she knew exactly what my situation was and was taking me serious. I waited about 5 minutes before the pharmacists called me up to the counter. "Ma'am, I have the Keppra, but I don't have the Diastat. I have called every Walgreens in the area and none of them have it. I also called the CVS at the corner of Balch and 72, they do have it. They close in an hour so if you hurry, you can get there. I told them to expect you." How awesome is that for the Walgreens pharmacist to call their direct competitor, just to help a customer. Thank you sweet pharmacist at Walgreens on Co. Line Rd., you guys will get my business! Case and I run home with the Keppra and give C her first dose while my parents ran to CVS to pick up the Diastat. WHEW! we made it. Home again! These hospital visits were starting to grow old. It was also so nice to come home to a warm welcome and some hot pizza on my kitchen table, all provided by my parents. Their support has been amazing, I honestly don't know what I would have done without them. They say it takes a tribe to raise a child, that statement couldn't be more true.
Case and I were shocked and excited (and scared, and a whole list of other mixed emotions) that we would be taking C to Le Bonheur in just 2 weeks. It was very odd telling people that we were "excited to take our kid to the hospital". People would come up to me and apologize for all that was going on and offer their sympathy. I got a few strange looks when I would tell people we were "excited" about going. It is hard to explain the feeling. Other parents that have had children in a similar situation would always comfort me and tell me that they understood our excitement. On one hand, we were taken back by the 2 week notice to spend a week in Le Bonheur in Memphis, we were expecting at least a 6 month waitlist to get into the best Neuroscience research hospital in the country. On the other hand, it was the longest 2 weeks ever. Within a day of being back home, I had ordered us a home security camera to watch C. Case got it up and running. I went back to work the very next day, Case did not. Case volunteered to stay home with C, but wanted the usual caregivers around, "because he doesn't know C's daily schedule that well and may need back ups". Understandable. Day 2 came around and Case stayed home again to, "get a few things done around the house.".....wait shouldn't you have done that yesterday? A double check of my nanny cam video feed confirmed that I couldn't keep Case away from the baby. Day 3 came and I begged him to please go to work, or go workout, or work on the jeep or DO SOMETHING; but hovering over the baby for days at a time was going to wear on him and her both (trust me I know). Bless his heart, he has been the best husband and daddy I could have ever imagined. He was so worried about C I couldn't get him to do anything except be with the baby. Case spent a week at home with C and it was all I could do to get him to go back to work that next week. I was also thankful that Case was so concerned and wanting to be so involved. It would have been easy for myself or Case to try to ignore everything that was going on and just "check out" because it was all just becoming so much; but neither of us did, instead we both buckled down to try to do everything we could to get C the help she needs. We are only humans and aren't perfect parents, but I think we make a great team!
Those 2 weeks went by pretty fast, and thank God they did because those were 2 really hard weeks. From our talks with Le Bonheur, we were told that "we don't leave without an answer", that is a pretty stout promise. You know that hopeful feeling you get when you see one of those "As seen on TV" items that looks TOTALLY handy and you imagine how awesome it is going to be and easy it is going to make your life; so long as it works as promised? Well I had that same feeling but without the reservation. It is a very poor comparison, but I was just so hopeful and excited about my promise of answers, information, data....SOMETHING to let me know what all was going on with my baby, I was excited. I know deep in my heart that something isn't quite right, and to have someone tell me that they can confirm my mom instinct; and work with that diagnosis to help my baby, that is amazing. I am completely hopeful and not for a single second did I have any reservations that this promise wouldn't hold true. For the next 2 weeks it seems like I am working a new part time job juggling phone calls and emails from Doctors, nurses, and my work HR dept. Isn't it funny how things work out. When I was on maternity leave, I had the opportunity to use all 12 weeks of my FMLA. I opted not to. Thank God my angels over my shoulder were watching for me when they whispered in my ears to not use it all up. I remember telling my mom that I wasn't taking all 12 weeks because, "you never know what might happen, C could get bad off sick or something. I have plenty of friends who have juggled hospital visits and complicated illnesses, I don't want to take my chances". SMART MOVE GENA, SMART MOVE! When I am not on the phone and answering emails between our nurse and work; I am packing. This is our 1st trip with our new baby. I have never really had to plan travel with a baby before, so I am not sure what to expect. I end up packing and repacking C's bags over those 2 weeks. I am very nervous about the drive and my worry starts to stem over into my working hours. Ooops, that isn't professional. I work with some awesome folks and my co-worker who is from Memphis sits down with me and helps me plan our journey, finding ever hospital that is on our route, in case we have to duck and run should C have a generalized seizure while we are on the road.
The weekend before we left was another mix of emotions. I had been looking forward to the batchlorette party of one of my best friends. She was getting married soon and this is big stuff to her, and it meant a lot to me that she wanted me to join her at her side and help celebrate the occasion by traveling with her and a group of girls to New Orleans for a fun weekend to relax and EAT CRAWFISH! (yall don't even know how much I LOVE me some crawdads!) Since she is from that area I was going to get to meet her mom for the 1st time and give her a big hug and tell her what a great friend her daughter was to me. I had been planning and looking forward to this trip since before C was even born! Train tickets were purchased, reservations made, there were even t-shirts made for the event... and I end up missing it because I wouldn't have arrived back in time to take C to Memphis. Again, I am a mix of emotions. I am totally heartbroken that I won't get to celebrate and share this fun time with my friend, but my baby girl is far more important than any fun vacation. Luckily my friend was so supportive of me not going on the fun festivities and offered her love and support to us as we headed to Memphis. That is a awesome friend.
Sunday morning rolls around. C's usual wake up time is around 7am. During the week she wakes when we do at 6am, on the weekend she sleeps in until about 7:30 (give or take about 15 minutes). I get up and feed her breakfast, hiding her Keppra in her food. I get her dressed and we go wake up Case. Waking up Daddy is one of my favorite parts of my morning (I hope it is C's too). It reminds me so much of when I was a little girl and I would wake up about 7 in the morning and go cuddle in between my parents. I would sleep about an hour before I would start working on waking up daddy. I would watch him sleep, tickle his nose, pull his hair and poke at his face with my finger. Pretty much anything to irritate him, it was so much fun. C isn't quite old enough for those antics yet. I usually cook breakfast after feeding C, then take her into our bedroom to "wake Daddy" so Case and come eat. This morning was like any other morning, C eats, I make coffee and have donuts waiting, and we go wake Daddy. This is where my morning changes. The goal was to keep C up as long as possible, to the point of cranky! Case packed the car with our bags and I kept C active and moving, trying my best to tire her out so she could nap for most of our trip. Our strategy was to leave at C's nap time and get as far as we could. If we were "lucky" we could get to Corinth MS. before she woke up. I sat in the back seat with her to keep her occupied, Case drove. I had her Diastat within arms reach. I had a bag packed with shelf stable formula (I weened C when she was 6mo old) and food at my feet. A DVD player was just a arms reach away, and a bag of toys occupied the other seat in the car. God must have been with me because our plan worked. C was slow to go to sleep but she didn't mind the ride. About Town Creek she fell asleep and slept until Corinth. It was lunch time when we arrived in Corinth, so we stopped for lunch. We had actually planned to stay a while in Corinth, stretching our legs, maybe finding a park to help C burn off some energy, but she was a champ and was ready to roll on. From Corinth to Memphis she played with me in the back seat and we watched a DVD. We were driving along the interstate in Memphis when we saw "Le Bonheur Children's Hospital" off to our left. OMG we are here... WE CAN SEE IT. Our answers are less than 5 miles away.
Before this post gets too long, I will pick up our story in the next post.
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