Colten had two more tests before being discharged, a VCUG and an MRI. The VCUG came back showing that Colten has urinary reflux back into his kidneys. So he needs to stay on antibiotics indefinitely. Urology will follow up with us in 3-4 months; surgery will be required to correct this issue – it is not urgent though. The MRI has not been read by neurology but it was really just a baseline MRI to have on file.

The great news is that I’m posting this from the car on our way home!!! We pulled out of Mott Children’s Hospital at 9:00 PM. I’m so happy, and Richard is so scared (nervous about hydrocephalus). But we have our 11 page discharge summary, supplies to get us started, and I have to take Colten back to Mott Monday morning for his follow-up cranial ultrasound.

So we are almost home… Parker & Max will get home tomorrow, and we will enjoy a family weekend before all the various appointments start flooding out schedule.

Thank you everyone for your support, for reading and learning with us, for the visits and well-wishes. We are amazed at how many people have reached out to us and we appreciate every bit of support! Thank you for joining us on Colten’s adventure!

We are getting discharged! Colten has a few more tests tonight – a VCUG (please don’t ask me what it stands for – go look it up if you want to know) which will test reflux into the kidneys (schedule for 3pm), and an MRI (scheduled for 4pm) that will go “tip to tail”. The MRI isn’t really looking for anything, it’s more of a baseline of what his brain, specifically the Chiari II Malformation, and his spine look like now so we have something to compare to as he grows. As long as Colten sleeps through the MRI, or is at least mostly still, they won’t have to sedate him and we can go home TONIGHT. If they need to sedate him, we go home tomorrow morning. I CANNOT WAIT to get home with ALL my boys! And my bed. I miss my bed.

The other day I had this long post ready to go about what a shunt is and what it does. Then it got erased when I lost my internet connection. So I decided I would not rewrite it unless Colten actually needed a shunt. The past three days, the biggest question has been whether or not Colten will need a shunt, and when he will need it. We were kind of on a roller coaster between thinking it would be safer to have one going home than not, not wanting to deal with a shunt at all or at least not yet, not understanding why the surgeons would want to delay it, measuring his skull, waiting for ultrasound reports, and on and on and on.  While he isn’t having a shunt placed during this stay, the neurosurgeon seems pretty confident that he’ll need one in the next few weeks. So why not place it now? With a wound on his back from his spinal surgery, and then adding another surgery in his brain, he would be at a higher risk for infection. If he were to get an infection in the shunt area, he would be at risk for brain damage. We don’t like brain damage. Plus, the less a newborn has to be under anesthesia, the better. Every day an infant can go without needing a procedure/surgery, the better, so long as the benefits of waiting outweigh the risks of waiting.

We have to come back on Monday for a followup ultrasound of his brain. At that point they’ll determine that it’s time to place the shunt or we’ll come back again the next week for another ultrasound. We’ll do these weekly followups until a shunt is placed. The good thing is that the stay in the hospital after a shunt placement, barring any complications, is usually only about 24 hours. That sounds odd to me because they’re probing my son’s brain. But whatever. I am not a doctor.

So why will Colten need a shunt eventually? Because of the hydrocephalus, or excessive fluid in his brain. We all have cerebral spinal fluid (CSF) – it is produced and reabsorbed in the ventricles inside the brain (think of a tootsie pop – the chocolate is the ventricles and the sucker portion is the brain). The CSF coats and protects the brain and spinal cord. Normally, our body processes and moves CSF in and out of the brain, up and down the spinal column, to keep the amount in an around the brain safe and steady. When someone has hydrocephalus, the body is unable to regulate the amount of fluid, causing it to build up in the brain. Too much fluid in the brain causes brain damage by forcing the brain tissue to press into the skull. Remember?  We don’t like brain damage. So a shunt is placed to pump CSF from the brain down to the abdominal cavity where the body can absorb it.

Ventriculoperitoneal Shunt (VP Shunt)

If you want to know more scientific information about hydrocephalus, you can read more HERE. But I’m not typing anymore about that because you probably don’t care THAT much about the science behind it!

So WHY does Colten even have hydrocephalus? Because of his Chiari II Malformation. The easiest way for me to explain this is to take the text right from the Spina Bifida Association’s website [you can read the full text here – just note that Colten is NOT symptomatic Chiari; he has the malformation but not the severe symptoms – thankfully]:

Chiari Type II or Arnold-Chiari malformation, is a more severe form in which the cerebellar vermis and some portion of the brain stem descend into the cervical spine. Many changes of the brain are associated with this abnormality. Although some degree of this malformation is present in the vast majority of persons with Spina Bifida, it appears to be symptomatic in about one of three individuals.

So to note again, Colten is NOT symptomatic Chiari, however, this malformation does add to the occurrence of hydrocephalus.

We personally kept going back and forth regarding our feelings of having a shunt placed. On the one hand, not having a shunt would be awesome but would require weekly monitoring once discharged from Mott – meaning driving back to Ann Arbor every week. While the drive isn’t a big deal, we would feel like we were constantly worried about an increase in pressure and brain damage. Even in just a week, every little bump or change in his skull shape sends Richard into a bit of a panic. On the other hand, having a shunt would mean less stress and immediate follow-ups, but shunts are not “one and done”. Here’s the statistics on shunts, again from the Spina Bifida Association’s website:

Most people with Spina Bifida and shunted hydrocephalus will need the shunt for life. The most common problem with shunts is that they can get blocked up, break or come apart. About 40 percent of shunts will fail and need changing (or revision) within one year, 60 percent within five years and 80-85 percent within 10 years. About 20 percent of people with Spina Bifida will need more than one shunt revision.

So we are still waiting on the final “go” but we know that a shunt is in his immediate future. For now, we’re just incredibly excited to get HOME. Mott Children’s Hospital has been wonderful to Colten and to us and we are so grateful for the incredibly family-friendly staff and atmosphere here. But we want to take our little man home.

This morning Colten had his first physical therapy appointment with Dan Santioni. We already have a great feeling about this man and are excited to work more with him. He started with some basic muscle response testing, sensory responses, visual and auditory preliminary testing and some stretching. Clinically we should clarify that most of the doctors do not refer to his condition as Spina Bifida because that is a more vague term and most people associate that with Spina Bifida Occulta. Colten’s diagnosis is myelomeningocele. [Read more about the different types of Spina Bifida here.]

Now, back to PT… It was fascinating, and a bit difficult, to watch Dan explore Colten. He started with a lot of muscle and sensory testing. He would push and poke and pinch different areas to see what sort of response he could get out of Colten. He did some stretches to see what sort of baseline angles Colten could move his legs and feet into. The dermatome testing was the most intriguing. He would pinch an area on Colten that corresponded with a certain level of the spinal nerves. If a response was received, those nerves are in good shape. No response? Bad nerves. So even though we already had a handle on where Colten’s defect was, there was a comfort in Dan also finding that L3 seemed to be the location.

Dan helping Colten stay “organized”

Dan measures Colten’s range of motion

Dan checks Colten’s visual responses

Based on Colten’s responses today, here’s the good list / bad list.

Positive responses were seen in the:

• hip flexors –  (moves your leg forward and upwards: rectus femoris, psoas)
• knee extension – (allows you to kick out your lower leg: “quadriceps”)
• knee flexor – (allows you to pull the lower leg back and up: “hamstrings”)

No responses were found in the:

• calf
• foot
• hip extension (pulls leg back behind body; includes gluteus, or butt muscles – required for walking stability)

So what does that mean? For now, it doesn’t really affect him, since we’ll be carrying him around anyway. As Colten begins to get to a crawling age, he will most likely find an adaptive and creative way to crawl. At around nine (9) months of age when babies begin to stand, he will work on standing with the aid of braces (at a minimum a Knee Ankle Foot Orthosis – KAFO) and other assistive walking devices. At around twelve (12) months of age when children start exploring walking, most likely he will need a Hip Knee Ankle Foot Orthosis (HKAFO). Picture Forrest Gump’s “Magic Shoes”. Because he has little to no response in the hip extensor muscles, his chances of walking are slim to none without any assistive device. With aids, hard work, upper body strength and will, he might be able to walk with braces and orthosis.

Here are images of a KAFO and HKAFO…

He addressed Colten’s feet as well but has to meet with the orthopaedic surgeon for clarification on whether we will actually brace them or use manual manipulation and therapy to stretch them. If you missed a previous explanation of the issue, in short – it’s the opposite of club foot. Instead of going in and down, his go up and out. Getting Colten’s feet to point out/down past 90 degrees (flat-footed) is nearly impossible because his tibialis anterior muscle (front of the shin) are too tight. While loosening the muscle will allow his feet to provide some stability during the use of an orthosis, he still won’t have use of the muscle.

Dan, the PT, said that most of the kids he works with that have similar leg/hip function, or lack thereof, will often go from various devices and/or orthosis to a wheelchair simply because they can be faster and more independent. The orthosis is cumbersome, requires a great amount of energy, can cause sores and pains, and takes extra time to move around. A wheelchair allows the child/teen to move about more freely at a community level in a more comfortable setting.

There still are moments of grief and sadness for Richard and I as we think of what Colten will go through during his lifetime, and what we will endure alongside him. It’s a roller coaster of wanting to feel empowered and helpful, then feeling angry and sad. So while we certainly won’t take anyone’s word about what Colten can and cannot do – we’ll let him show us, we have a better understanding of the future in front of him and how things could possibly progress and what’s in store for us to test and explore with him. Dan also shared with us a great story of a young man, now 25, with myelomeningocele at an even higher defect level than Colten. I won’t retell the story but suffice it to say that the moral hit home for us: treat Colten as you would your other sons. We need to demand the same from him as we do from Parker and Max. We must expect him to do things on his own and “figure it out” (a phrase Parker is already used to hearing!). Every child has challenges in life – some are harder or more frequent than others. But it’s our job as parents to help them find the best “me” that they can become. The rest is up to them.