Morning finally came and I put my puke covered clothes which I had washed in the sink back on. The smell was horrendous and it took all of my willpower not to gag.
Shortly after we woke up the neuro team came by to fill us in. They told us Luke was scheduled for surgery at noon. WHAT? How could he be scheduled for surgery at noon if he hadn’t even had an MRI yet? My heart dropped. I thought this was going to be a quick adjustment then we would head home. The team very kindly and thoroughly described to us what was going on. The catheter that drains the fluid in Luke’s brain had most likely clogged. Luke’s surgeon would be by soon to give us the details.
After Dr. Auguste answered all of our million questions it was about time to bring Luke back to the OR. We walked back to the operating waiting room and spoke with the anesthesiologist which for me is always the scariest part. There is always the risk that once you are put under you will never wake up. It is a terrifying thought that you are handing your baby over and you may never see them again. That being said, Dr. Auguste’s nurse, was amazing. I knew Luke was in good hands with her.
Then came the waiting. To kill time we grabbed lunch at the cafeteria in the hospital and sat and chatted. Where I am weak, Adam is strong. My mind wanders to deep and dark places when it comes to the unknown. Adam knows this and he is my rock. He pulled me right out of that place and kept my mind occupied on other things. He assured me that Luke would be fine, better than fine, he would be great.
And he was. After what seemed like a lifetime Dr. Auguste came to the waiting room and told us surgery went great! He even showed me a picture if the blocked catheter which was pretty cool. (I am posting a picture of the blocked catheter at the bottom after all the text so if you are squeamish don’t scroll all the way down) He let us know that Luke was waking up from anesthesia and we could go see him in a few minutes.
We were overjoyed to go see Lu. Besides looking pretty puffy I think he looked pretty darn good for just having surgery. And in true Luke fashion, the first words out of his mouth were, “Eat, Mama”
Ok, here comes the catheter picture, last warning to stop reading!
The ER doc came in and got the down low. He ordered a bunch of tests, X-rays, CT scan, and blood work. There is no worse feeling than pinning your baby down for an X-ray or CT while he is screaming “mama help, mama help”. I’m not sure who was more traumatized by that, me or him. The only thing worse than pinning him down for the X-Ray was pinning him down while the nurse drew blood and gave Luke an IV.
I was sure the blood work would come back fine, which it did. The X-ray showed that all of the pieces of the shunt were properly placed. But the CT showed that Lu’s ventricles were definitely enlarged. The ER doctor and Luke’s neurosurgeon were in contact the entire encounter. After seeing the images Dr. Auguste (Luke’s surgeon) told us to head on down to Oakland.
At this point Adam and I were still under the (false) illusion that we could drive down to Oakland, have his shunt adjusted which is a quick fix with a magnetic machine and then be on our merry way home. So, we ran home and grabbed a few things and hit the road to Oakland. Keep in mind, the few things we grabbed didn’t include a change of clothes or toothbrushes. Big mistake. Huge.
Once we finally made it to Oakland we checked into the ER we were taken back to a room and filled in a whole new set of doctors. We quickly realized that on a Sunday night at nine o’clock we probably were stuck overnight. I immediately regretted not having a change of clothes.
The doctors and nurses were insistent about giving Luke an IV “just incase” he needed surgery. In hindsight I should have realized that Luke needed surgery, otherwise they wouldn’t have given him the IV. This was the second time in one day Luke was held down for an IV and to say he was hysterical would be an understatement. Luke’s hysterics brought on another bought of puking……all over me…….in the only clothes I had. Believe it or not, there is not a Walmart closer than an hour away from the hospital and Target was already closed for the night so I was stuck in my puke covered clothes.
Lu was so tired he was out for the night. One of the nurses gave me a pair of scrubs to change into and I washed my clothes in the sink as best I could and prayed for morning to come so I could run to Target for some new clothes.
Luke was scheduled for an MRI first thing in the morning and we would be able to get some answers and hopefully get Lukey feeling better and home.
Exactly two years ago Luke was at Children’s Hospital Oakland. And that is where we found ourselves last weekend.
Little Lukey was a little whiny last Saturday afternoon. I didn’t think much of it since we had all been fighting a cold. I didn’t start to get suspicious until he started pointing to his head and saying “owwww”. I had a feeling in my gut that something was wrong with his shunt but I was praying it was just a headache. He didn’t sleep at all that night so I was becoming increasingly worried. I kept trying to talk myself out of the feeling I was having, but in my heart I knew there was something wrong with his shunt. I even sent my mom this message early Sunday morning.
After an exhausting night we jumped in the car and headed to breakfast at my in-laws house. Luke, who is usually a chatterbox, was especially quiet on the car ride to breakfast. The second we pulled into the driveway Luke puked. A lot. Then came the tears.
I jumped into mama mode. I ran inside to get help to clean up Luke and to call his neurosurgeon. That man is a saint. I spoke to him directly on the phone and he very calmly told me to take Luke to the local E.R. Thankfully, since we were already at my in-laws Jakey got to stay and play for a few days!
My dear friend Katy’s husband is a P.A. who works at our local emergency room so I immediately called her to see if he was working. Of course, he was not but he called to let them know we were coming. We received the royal treatment, they brought us right back to a room and we didn’t have to wait at all!
Here’s the happiest sick baby you’ve ever seen. Check back tomorrow to read the rest of the story!
I can’t believe my babies are two. They are turning into such funny little individuals. They had a construction themed birthday and all of their friends and family came. Take a peek!
That old Nancy Sinatra song has taken on new meaning in our house. Our boys we leg braces, the technical name is Ankle Foot Orthotics (AFO’s), but in our house their name has become “boots”. The boots help stabilize their legs to help them to (eventually) walk.
Getting boots made was quite the ordeal. The boys just had their second pair made so now they are old pros at the process. I wish I had some insight before our first appointment.
The first step is getting casted, which can be (and was the first go ’round) pretty traumatic. A mold of each foot has to be made and then once it dries it has to be sawed off. Ok, that sounds dramatic but I don’t know how else to describe it.
The boys hated every second of this on the first round but for round two I wised up. I came prepared with snacks, books, and toys. They hardly noticed that they were being messed with. Until that saw came out, then they lost it. But, it only takes a few minutes and before they knew it, they were done. Then in a few days, if your orthotist is awesome like ours, you have brand spankin’ new boots.
On a new and very exciting note Jake is pulling himself up to stand on everything and…. Wait for it….. Walking in his little old man walker.
Hearing the words nearly crushed me. But, in my heart I knew they’d be said. Hearing the neurologist confirm what I had previously considered to be my worst fear made it real. Luke has cerebral palsy. Typing it out now and blasting it on the internet is making it feel really real. Cerebral palsy sucks. If you’re like myself you will probably google CP and you will likely be terrified of what you read.
There are different types of CP and different severities of CP. Thankfully with each day that passes we are more and more certain that Lu is falling toward the less severe side of the spectrum. We are blessed that Luke’s struggles with come in the form of mobility and not in cognition.
What does this diagnosis mean for Luke? Honestly? It means nothing. It doesn’t change the physical therapy that he receives, it doesn’t change the doctors he will see it doesn’t change the way Adam, Jake, and I love him. All it really means is that Luke has to work ten times harder to do things that other people take for granted.
Luke has already blown the doctors expectations out of the water. Don’t get me wrong, it’s easy to fall into the trap of comparing Luke to other kids (Jake included) who are younger and are doing things that Luke can’t ( and maybe won’t) do and get down. But, I have to remind myself that comparison is the thief of joy and Luke will do things on his own time. Adam and I always joke that if you want Luke to master a new skill, tell him he can’t do it and he will prove you wrong.
People often say to Adam and I that we are so strong. It makes me laugh, I am not strong, if you want to see someone who is the true definition of strong- just look at Luke.
No, it’s not what you’re thinking. Although some days I think I need it! I’m talking about therapy. On top of all of the doctors appointments that the boys go to they also have therapy. Physical therapy, occupational therapy, and speech therapy.
We are so thankful for all of the boys therapists and all they do for Luke and Jake. The physical therapist comes to our house once a week and “workout” with the boys. Physical therapy is just like what it sounds like. The boys stretch and practice climbing up the stairs, standing, and walking. Our physical therapist, Christi, has become a sounding board and friend to me. Since I see her once a week I have become close to her and she has become a sounding board for me. I bounce my worries and concerns to her and without a doubt she always calms me down.
Also, once a week we go to occupational therapy. Occupational therapy is at a private business and the boys absolutely love to go. Occupational therapy consists of playing because at this point the boys job is to play. On the entire drive to occupational therapy the boys squeal with joy every time I ask if they want to go play with Lisa. At occupational therapy there are swings, ball pits, and slides so it is totally obvious why they love to go see Lisa.
The boys just started speech therapy as a preemptive strike. Thankfully, at this point the boys are right where they need to be in their language development. I swear they learn a new word everyday. Once a month the speech therapist comes over and checks in with the boys to make sure they are still on track.
Just this last week we started going to gymnastics with our physical therapist which the boys absolutely love. They had a blast! And, it was a workout for me which was a plus!
I am so thankful for the early intervention program that allows the boys to receive weekly therapy and services.