What a great time!!!

3rd Annual Drake Shoot

We had such a great time at the 3rd annual DNI, we hope you did too!!!

Second Opinion Time

At this point I felt the need for a second opinion and quick! Dr Y. was able to et me in with a Nurologist in GSO. I took the first thing available. Lucky for me I was warned of his personality and was prepared with Drake’s past medical history, current medications & dosages (Thanks Nan!), even a copy of his MRI on CD.
Even though my frustration with Dr.Hi was communication and trying to be seen, Dr.Hi had the same basic things to say as Dr.H. I was impressed by his promptness, but all and all I didn’t want to change due to the fact that Drake has practically 13 doctors at BCH and they do have the capability to communicate (even if it takes a little fire under their seats every now and then) when they need to.
What it boiled down to is if Drake started having these episodes more frequently, we would need to go back into the EMU to try and figure out what was going on. That’s not exactly the news we were wanting, but I’m learning with Drake to take each day as they come, not as I hope or expect them to be.

When what to my wondering eyes did appear?

About two weeks later, he had the big one. I’m sorry it had to happen to Ms. Lori, but I was glad that someone other than me and Shane had a chance to see him go out. At my usual 2:00, I walked in the school only to find Drake not in the class room, not anything too unusual. I asked where he was and the assistant said he was at the nurse’s office with Lori. When she said it wasn’t a weight check, I thought I’d better hurry up front. Grant and I walked in to find Drake limp and not responsive. His oxygen levels had dropped to the low 70’s. (I was told he had only been in there for a couple minutes) Connie the nurse said typically babies are blue at this point and suggest I call the pediatrician. Taylor Swink cleverly took Grant with her to the classroom. Yes, at this point I was getting ready for panic, trying not to cry, I knew I might never recover. How do you react to the sight of your child lying practically lifeless for almost 20 minutes by the time we got in the car? Lori (Drake’s teacher) suggested letting her take Grant to Grandma Carole’s so he wouldn’t have to go to the ER with us. Thank-You Lori!!!
Dr. Y said I needed to get him to the ER immediately; he would call ahead and meet us there. Of course Cone was the closest (5 min.) and I went straight there. As I stood in the line to check in for what seemed like an eternity, a nurse came up to me and asked what I was there for. I said,” My child has been unconscious for 30 minutes.” I had no idea how quickly people could move and we headed for the back. They immediately started an IV and he didn’t even flinch! Taylor showed up a little bit later. I was glad to see her; the ER is not a great place to sit alone with your unconscious child. She was nice enough to move my car away from the front door and turn off my hazard lights. Shane showed up a little while after that. Only to find out after x-rays, blood work and two hours, they didn’t know what to do….. I did!!! “Stop what you are doing and take me to Brenner’s Children’s Hospital!!!” By then Dr. Y arrived, called Dr. H and then we waited for the transport unit to show. No one could argue, no one knew what else to do.
When what to my wondering eyes did appear? But a boy with bright eyes and a grin from ear to ear.
Yes, Drake came out of his, whatever it was. They decided to transport anyway and run more tests at Brenner’s. Did they find anything? NO!!! Oh yea, I was still in my bathing suit from earlier in the day when I thought I was just going to pick-up Drake from school. I think we left the hospital around 9:00p.m. (Note to self; always keep a change of clothes in car for both Mommy and kids!)

EMU

As I sit here in line to pick up my 6 year old for kindergarten, it occurs to me what an ideal time to catch up on Drake’s blog. Seems the summer took more of our time doing nothing than I realized. After several requests for an update, I’m back and ready to share more of Drake’s story.
I’ll try and give a quick catch up from where I left off. After more episodes, Dr. H set us up in the Epilepsy Monitoring Unit. It seems Drake doesn’t like his head scrubbed with sandy like abrasives to help the EEG leads connected to his head. It took approximately 45 minutes for the nurse to scrub and stick and 45 minutes of crying (Drake that is.), his head was bandaged up so the wires would hold for the duration. We were told that the stay could run about a week at the most and we’d have to wait and see if they could possibly catch one of his episodes. (The passing out, oxygen dropping, etc.)
I have to say the room is about half the size of an ordinary hospital room. The stay was uneventful until the 3rd night when Drake was so upset about bedtime. He was in the middle of a screaming fit, when out he went. Shane and I looked at each other and couldn’t quite tell if he finally went to sleep or he was having an episode. There is a button to push which is connected to his wires to try and give the doctors a pin point in time to go back and review. Guess what it showed? NOTHING! So after 4 days they let us go home with “possible breath holding spells”. I’m not even going to give all the reasons why that was not possible, but after seeing the ENT and another Neurologist, they agreed with me. (Oh yea and the stay cost a whopping $27,000 for 4 days, crazy!)
Oh yea, and it took them 3 days to get his meds brought in at the right dose and time. Thank-you God for leaving me half a brain from my teenage years so I can keep up with my children. I think he only allows us that much as adults or we would still know everything and never have children.

A Time to Relax.

Then there was a friend, Wendy. Yet another person put in our lives to help Drake. She is a GSO firefighter, but more importantly, she is a message therapist. She hasn't worked often with children, but surprisingly enough she has done a few special needs kids. She never judged or felt insecure with Drake, she just had a way about her. She quickly figured out he liked to swing and that being held close was a comfort. With most people, he just cried no matter what we did. With Wendy, he found peace with her, he seemed to let go even if it was only for 15 minutes at a time. I tried not to watch everything she did, I felt he needed that break from me too. I would peek in from time to time just to watch her put her hand on his heart and listen. I almost felt guilty for watching such an intimate moment, but it was amazing to see him give in to her. We would joke later when I called it the "Jesus" position. He stayed so curled up and closed to the world. But, when Wendy started working both legs would stretch out, arms layed out flat, head turned to the side with eyes closed and he finally relaxed. It was a beautiful thing to watch, I even got a little jealous at times and asked how do you do that? She said I don't take it personally and I guess he could sense that! Since I knew I couldn't take the personal aspect out, I let her do her thing every other week and enjoyed the fact that Wendy was another blessing given to us through Drake.

YUCK

So shortly after meeting The G.I. doctor, DR.Hill, his first question was what are you doing here? Of course, he wasn't crying for the 45 minutes we were their, isn't that always the way? He seemed short and in a hurry, wasn't at all what I expected in a doctor. He changed a medicine he was on for reflux thinking this could be causing headaches. Seemed like a simple fix, I hurried to the pharmacy to get the pill which would help Drake stop crying.

Guess what, it wasn't the reflux medicine. So I hesitantly called the Dr. back only to find he was actually concerned and scheduled a 24 hour probe. Yes our first overnight stay at the hospital. I was secretly thinking, good, finally someone in the medical field can see first hand how much he cried.They put a horrible tube down his nose and strapped him head to toe on a aboard to get x-rays as he screamed in terror! I can't imagine not being able to hear or see well, what he endured that morning had to have been a cruel world to him.

We did get through the night and the results said he was refluxing something like 72 times a day. YUCK, I'd cry too. His meds were doubled and yes, It did seem to help. Didn't stop the constant crying, but it did help!

Priceless !

At this point Drake is 4 months old. Who puts their baby in school at this age? Wasn't I a stay at home mom? Didn't I give up a career as one of "Greensboro's Finest" to be with my children? All these thoughts ran through my head as we entered the school in January.

I made a plan for us, the four of us(T,S,G & D) would take Drake to school. I thought if I had Daddy and Grant to take my mind off dropping Drake at GSO CP, that it would be exciting. WRONG!!! I know you'll never guess this, but I cried, no actually I sobbed as we were leaving. I wasn't suppose to do this till kindergarten, the whole thing actually caught me off guard. I knew this was the place for Drake and our family, but dropping your baby to others, was a step I wasn't prepared for. I now know what it's like for parents leaving their children in daycare while they go back to work for the first time. And yes, I did leave crying that day, but once again, time healed that wound and quickly.

We started Drake at 3 days a week, that was my agreement and there weren't rules saying different at the time. I think by the end of the month I started 4 days and actually enjoyed dropping him off! I saw how he reacted to his environment for the first time, that he knew he was somewhere besides floating in space!!! I could tell he knew when we got there, don't ask how, I just knew.

I tried for several months to come up with ways of letting him know where we were going in the mornings. I forgot to mention, he cried for the 45 minute commute EVERY morning and EVERY afternoon. As I told this to Lori one day, she immediately jumped into action! She first came up with the idea of a vibration pillow, it worked 75% of the time. Then she came up with a way of taking a weighted pillow and laying it across his lap to hold his hands down. He had this severe hands flying, I'm falling type spells. This feeling would scare him and he would start crying all over again. As a reminder, at this point he still cried 85% of the day and had very little calming once he got started. And once again, God did prevail, these techniques helped at night time too. He actually started sleeping for a few hours at a time, in stead of minutes. What a miracle!!!

After several weeks went by, I found comfort in leaving Drake at the Greensboro Cerebral Palsy Infant Toddler Program. I started getting my "grove" back, as some call it. No I haven't lost the pounds I added during all this, no my house is still a mess and the laundry's still behind and yes, I still cry from time to time. I Do though have a good outlook about Drake, about my family, about how the world isn't so cruel after all. How does that commercial go, PRICELESS!!!