“Reality is that which, when you stop believing in it, doesn’t go away.” ~ Philip K. Dick
I know many of you have been waiting most of the day for an update since I brought Chance to the E.R. It’s been a crazy day and I’m finally finding a moment to share just how hectic the last day or so has been.
This past week Hope & Jaylen decided they’d like to join in the fun of visiting the doctor. Both presented symptoms of allergies/cold…at first it started with Hope who had been coughing for a few days. My kids are so much like me with having allergies that we hoped it’d pass. By Monday she some how had an upper respiratory infection and was put on an nebulizer. Jaylen began coughing the very next day. By Wednesday he sounded worse so I took him in and he had an ear infection and was congested. Two doctors visits and lots more prescriptions later and the kids are finally on the mend and feeling much better. Fast forward to Friday and Chance started coughing and sounding a bit congested. After having three kids the symptoms of allergies or colds don’t worry me much…I just knew to keep an eye on it and do the things I’m use to and prayed we’d be spared going back to the doctor again. As the day progressed his congestion and cough sounded a bit worse. After he woke up from a nap later in the afternoon he had a low grade fever and his soft spot seemed a tad bit more full. Jason and I felt his shunt too and for the first time with this new shunt it felt a bit more squishy like it was beginning to swell. I began to get nervous and feared something might have been going on with his shunt. I sent a picture and update to his neurosurgeon and she decided to put him on antiobiotics to be safe because the incision looked a bit red for the first time since it was put in. It was also suggested to begin to clean his incisions with betadine twice a day. I went about the rest of the evening thinking…no biggie…just antibiotics, keeping it super clean, and we’ll keep an eye on it and it’s going to be fine.
Later last night I went to check on Chance and my heart sunk the moment I saw his little head with a very swollen shunt. I sent a photo to his neurosurgeon and she agreed it was concerning. Aside from being a bit irritable (likely from being congested too) he was presenting none of the other symptoms of a shunt malfunction. The big concern was that we didn’t want the swelling to cause the incision to open up. We agreed to try to wait until the morning to bring him in to the E.R. for more tests.
Chance is becoming a frequent flyer at Arnold Palmer. Some of the people working remembered him the moment we walked in. He looked like such a big boy waiting to be seen by the doctors.
The last day has been tough…he’s been pretty fussy a lot more unless he’s eating or sleeping.
I’m pretty sure the little stinker is teething too. These days everything gets gnawed on. Don’t be surprised if we see his first tooth before long.
While we were at the E.R. Chance underwent an CT scan of his head. The important thing was to ensure his shunt was taking care of his hydrocephalus that he developed due to his spina bifida. As much as we hate his shunt…we love it too because it’s what’s keeping our baby boy functioning. Good news is that the scan showed that his shunt was working…it’s draining the excess fluid from his brain like it should. They shared two photos of the scan with me. The one on the left is from just before his last shunt revision – you’ll see the black areas which essentially are the enlarged ventricles showing fluid on the brain. The image on the right was taken this morning and I was told it’s a great sign that the shunt is working.
So the question is…why is his shunt site swelling? I was told that congestion can cause the pressures in the head to change and I’m sure all the coughing isn’t helping. A shunt is a man made devise inserted into my baby boy’s head…it’s not meant to be there…but it has to be there for him to live and function with hydrocephalus. I’m sure if this shunt stays in long enough it may someday be a bit more fused into his head but right now it’s fairly new so it is possible for some fluid to leak out of the area where the catheter is inserted into his skull which in turn causes the swelling. Yes, the parent in me freaks out seeing it…but I get it. I won’t say it calms my nerves any but knowing this certainly helps me every time I see his shunt swollen. So now we wait and see. As his shunt swells we’ll keep an eye on it and ensure there’s no external leaking or that no other shunt malfunction symptoms arise.
Once we finally got the word that we’d be discharged they gave me the green light that he could be fed again…it certainly helped him feel better. Shortly after he was in a much better mood. I of course spent time waiting by taking pictures. I’m sure some people may think I’m crazy for taking so many photos of my little man in the hospital…but it really is like therapy for me. And well…I suppose it helps tell this little story I’ve been writing for quite some time now.
You can thank the 365 photo project I did in 2009 for this shot. I don’t quite take a picture a day like I did back then…but back then that little project forced me to look for the moments…the little ones like this one – and find value in it. Here I was waiting to get discharged and passing time. I have lost track of how many of these hospital name bands Chance and I have gotten this past year. They always seem to fall off of his little legs. But today it stuck and his little toes were poking downward…I saw this picture in my head and took it a moment later. Thankfully it worked out considering how limited I was.
Thankfully we escaped the E.R. without a surgery or getting admitted…here we both were feeling very relieved.
A couple hours after we got home there was a moment where Chance was fussy and I had pretty much done all I could. I sat him down for a moment and he continued to cry. Moments later his big sister scooped him up and walked around talking to him sweetly and he had stopped crying. I looked over and this was the sight I saw…yes, a priceless memory.
She really is the best big sister ever. Last night when we were worried we’d be back in the hospital she was asking “Will he have to have another surgery?” I told her I didn’t know…but that we’d pray he wouldn’t. She told me she didn’t want him to have any more surgeries. The more that happens to Chance I admit it does make me wonder how much it has begun to wear on Hope & Jaylen…I can only pray that instead of them feeling burdened or heartbroken that we’re not there for them quite as much…that they instead embrace one another…and their baby brother…and somehow all these trials will hold our family together and protect my little one’s hearts. I know every time Chance is hurting they worry about him and want him to be better.
Chance wasn’t fussy all day…but he definitely wasn’t himself. He still had moments where he was content on his own…the moments like these that I admire so much.
This morning Jaylen had a tough time when I left for the E.R. with Chance. He still doesn’t know much about what is wrong with Chance when things happen like today but he knew I had to take him to see the doctor. As I was about to walk out the door Jaylen ran to me crying and said “mommy don’t leave me.” He’s never said that. I’ve been working all these years so I know he’s gotten use to me leaving home. Sometimes he cries but most times he’s been just fine. He’s never verbalized that he didn’t want me to leave…certainly made my heart skip a beat. I reassured him I was going to take Chance to the doctor to make sure he was okay and we’d be right back home. He cried big huge crocodile tears and gave Chance and I both a hug and kiss before we left. That moment left me thinking at times today about how much his life has changed since Chance was born and how much his baby brother’s life is beginning to impact his own. I just hope years from now he’ll understand…I can only imagine how hard it’s been for him to go from being the baby to having his Momma consumed with another baby who has required a great deal of attention at times due to his medical needs.
We arrived home to Jaylen so happy to see his baby brother. Of course he made my day saying to me “you’re my best friend” followed by a hug and “Momma I lub you”. How can I not be totally in love with this kid?!
He was more than happy to let me take his picture too.
And he wanted to take pictures with me. We took a few photos and he had fun with it. I never take “just one” photo. I’d take a few and check them and then say “just one more”. Of course each time I’d take a few at a time. He agree to let me take “just one more” picture…not knowing I’d ask to take “just one more” a good ten times. Fifty photos later I have a few photos worthy of sharing of me and my little man happy and silly.
Thank you all again for the prayers and sincere thoughts. Now we just keep praying that this little guy gets better and has no reason to return to the hospital.
I care for such information much.
by Amanda Kern
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