30 Days Post-Op

We are still here, we are still home – for a few more days at least. Colten has done pretty well recovering since we got home. He’s taking his injections like a CHAMP – no need for a second person to even hold him down or keep him from hitting me. I really wasn’t sure I would be able to do this after our first couple days home because it was just pure overwhelming – he hated the shots, he hated the meds (and threw them up a couple times), he couldn’t move himself anywhere, and we went from a quiet hospital room of just us two to our bustling home with all six in our family.

Two weeks later though, we are in a pretty good place (that will all get disrupted Wednesday). As I said, his shots are going quite well finally. He takes his oral medicine with ice cream now. Not my ideal method, but he has continued to lose weight (one pound this past week, two pounds after discharge). He’s down five (5) pounds total since he was initially admitted, before surgery. He is struggling to regain his full eating habits and I’m struggling with feeding a kid ice cream just to get him to keep his weight.

We are on a constant mission to get him to consume enough liquids to flush his system and keep him hydrated – along with getting him to eat enough protein and fat. All the other stuff we need to do to care for him now is going well. Home visits from the nurse have all been positive (minus the weight loss) – incisions and stomas look great! We finally switched to a different type of drain bag that is smaller and can strap to his leg and this gave him quite a bit more independence (perceived and real). He’s finally walking SOME around the house. Today has been quite an off day though and he’s refusing to walk anywhere. When his aunts were here earlier, one of them had way more sympathy for him than I did. Lucky for him ūüėČ

(Eating some homemade pumpkin pie from Cousin Pat.)

Wednesday we go in for the second part of this surgery which is definitely easier than the first part!! The surgery should be less than two hours. We should expect to be in the hospital through Friday. Then we are home! Our road is far from over at that point – and in fact, our lives will then be lived in two-hour blocks with him as his bladder learns to adjust without a constant drain. This two-hour window, in time, will hopefully become a four-hour window. Only time and his body will tell though. Once the tubes are removed though (on Wednesday), he is free to swim, free from drains/tubes, and will be much less sensitive to touch around his belly (hopefully).

(This picture was the first shot he took without screaming and having someone hold him down.)

I know I can never say this enough – so I’ll say it again. Thank you! Thank you to those of you that sent food, came to visit, mailed cards, sent gifts, delivered goodies, texted, called, cut our lawn, watched our kids, gave us a hug, had a drink with us, and on and on and on. It’s always an awkward position to be put in when people bestow some of these things upon your family and child, so if we’ve been caught off guard or in the moment, our responses might not always be the best. Often we’re quite emotional about it inside and not sure how to react. Thank you though. Thank you from the bottom of our hearts. And thank you to all of reading along and following. Your support is much appreciated and we can tell how much this little boy is loved and we hope it’s something that carries with him for his entire life!

We are HOME!

Actually we’ve been home since late Thursday afternoon, but I’m finally getting around to having time to post something here on the blog. If you watch the Facebook page, you already knew we were home ūüôā

Now we spend the next four weeks carefully making sure no other children yank, tug, or trip on the tubes connected to Colten. Including Colten. It’s already a bit challenging and he’s tangled himself a couple times. He’s not super mobile yet which is good. I’m not sure how we’ll manage his “accessories” once he’s independently walking. Thankfully the older boys are out of the house most of next week (and they were the end of this past week too), and Sophia has been swooped up countless times by her Gaga (Grammy), Papa, and aunties – so all is usually good when it’s just me and Colten at home, or just Richard and Colten. A bit chaotic when we’re all here!

Colten was so excited to be home finally and once we got settled in Thursday, wanted to go outside. Can you blame him after being cooped up for 2 1/2 weeks?! So we strolled the neighborhood a bit, collected sticks, and just enjoyed a relatively quiet evening.

The home nurse came Friday afternoon just to check in on him. Most of the big medical stuff is done by 11am here – fighting over medication, struggling to get the injection done, bathroom time, etc… So we’ll just be lazing about. Ha. Ha. It’s nice to have him up at the table playing with stuff though – we are hoping that being at the table and not on the couch or in bed will help the alopecia on the back of his head start to resolve. Due to the extensive time on his back with 13 hours of surgery and 13 more hours under sedation, then 2 more weeks laying around, he’s developed a temporary type of alopecia (hair loss) and has a huge bald spot on the back of his head!

There’s not a ton to report or update on. Things are easier, in a sense, having him here. He’s doing better and it feels good to be home. But it is also a bit more complex. Any house with four kids ages eight and under (8, 6, 4, and almost 2) is chaotic enough. Add in that it’s summer, then add in that there is a child needing cautious movement, vigilant observation, and medical “stuff” done throughout the day… I think you can begin to imagine!

For me, the daily resistance is hard. He takes medicine that he hates twice a day. Two different meds each morning and another in the evening. One of those he will be on for life. He puts up a fight EVERY. SINGLE. TIME. It’s mentally and emotionally exhausting for me. I know it’s tiring and aggravating for him. He’s actually always been a pretty good medicine-taker up until now. He takes small bits of each at a time, followed by swigs of lemonade (I’ve never given a child so much non-water to drink in a day!). And of course, we follow both medicines up with a small candy treat (I’ve also never given a child so much candy day after day!). The lemonade part is okay – he has to consume tons of liquids so it’s helping that he does that. But I’m really hoping we work towards not having to bribe so much with the oral medications over time.

Then there’s more resistance with his injection for the blood clot. After two weeks of having nurses do these, and me hold his hands, and a couple times of me giving the shot and experienced nurses blocking him from grabbing at the needle or my hand, it’s now me giving the shot and Richard attempting to hold him back. Yesterday went okay but it is really hard to restrain your child when they’re yelling and screaming and you know you’re about to hurt them. Today was more rough. I thought I could have Richard not quite hold him down but just block him, but then I got so nervous that Colten would get through the block that I balked on the shot twice. I think it took us 10-15 minutes to get it done and I was spent after that.

This afternoon I walked down to a neighbor’s house. She is a nurse and I asked if she would be okay coming to do the injection on morning’s she’s home. Even if I can get a break from some of the days, it might do us good. I just don’t think I can do this for four weeks. Richard seems to think he could do it, so we’ll probably have this nurse show him. Thankfully, I got some practice needles from the hospital so he can try it out and see.

It’s draining and overwhelming. I won’t lie or sugar coat it. From about 8am-12pm, it feels like a spattering of medical stuff all morning. Then all day, staying on him to drink, drink, drink. Moving him, checking him, handling additional medical needs as the day goes on. Plus the rest of the kids, the house, life. At least in the hospital it was JUST US, and we had tons of medical people around if we needed help. People warned us before the surgery how much of a toll this surgery had on their families and lives, not just for the in-hospital portion but afterwards before phase two and during all the recovery. It’s hard to picture, and you certainly never know for sure because you don’t know what additional things you’ll encounter, but for sure, this is going to be difficult for a while.

He did tackle this the other day though…

‚ÄčHe needs to stay home for the most part. He can go places, but should avoid most public settings due to germs and the increased likelihood of an infection. He can go outside, but shouldn’t get wet (no sprinkler play, water gun fights, etc). So we are splitting the family here and there as needed and will continue to dole out gifts to him at home as needed when most of the family is gone for a special event. We had so many amazing friends and family send stuff to us, we didn’t even go through them all while at the hospital!

So onward we go. We are tentatively planning on being back in the hospital July 12th for the second stage surgery. It’s a very minor surgery, a couple hours in length, and only one or two overnights in the hospital. To close this off, I want to capture here what I posted the other day on the Facebook page because it needs to be said again and should be shared with all those that may need his help one day…

Major props to our urology surgeon, Dr. Zach Liss, with Michigan Institute of Urology! He’s the primary doc on this case and has seen Colten every single day in the hospital, sometimes twice a day (even on weekends and Father’s Day), and calls to check in on him 1-2x/day. Even now that we’re home, he texts or calls each day. His pre-op consultations with us were always thorough and personal – we ask a billion questions and it never phased him. Better yet, he’s retained a very fun, positive relationship with Colten, who hates all the pokes and pricks and prods Dr. Liss has to do to him! This phase of the surgery went better than we could have expected (minus the blood clot of course). We still have a long road at home and a follow up surgery in about a month. We highly and strongly recommend this man for anyone needing pediatric urology support.

Dr. Liss – thank you!

Surgery #8: Day 14

It’s been a while, but that’s a good thing! Yes, we are still here at the hospital but we make steps every day getting closer to leaving!

Here are the highlights from Day 9 through today…

DAY 9: Had some play/work time with Occupational Therapy – he had a lot of fun but is clearly still very weak and in a lot of pain. Special visits from Grammy, Auntie Kara, and Aunt KiKi. We got moved out of PICU into the general pediatric wing. We were in a semi-private room (the “Transformers room”) for this evening, night and a little of the next day…

DAY 10: The NG tube came out of his nose! Woohoo! This means he can start drinking and slowly work towards eating. Enjoyed time with Sophia and in Music Therapy. Mom learned how to do some of the necessary, long term procedures that go along with this surgery. We moved into our own private room for the long haul (the “Aladdin room”) and quickly decorated the walls with all of Colten’s goodies and cards. He ate about 35 little ice chips today. Also had visits from Auntie Kara and Aunt Coury today!

DAY 11: Random bloody nose at 1am. Thanks. Worked with Physical Therapy and Occupational Therapy today. Took about 6 very supported steps using his walker and screamed and cried the whole time. All done with that, Momma says. NO need to push it right now. Was happy as a clam once he was in his wheelchair and got to go swing in the therapy room. All smiles then! Propelling himself a little in his wheelchair now, while we pull IV behind him. Went to a summer luau party with his Grammy & Papa and REALLY wanted a cookie, which he could not have. More ice chips; said popsicle was “gross”. Little sips of water. Finally got his first visit from Max today! They enjoyed seeing each other!! Momma also got a special visitor friend – thanks Melissa!

DAY 12: Lots of wheelchair time today, and did a special craft for Father’s Day with Child Life. Very nice visit from his Grandma Cathy and Great Aunt Carol all day! Consumed a little Jello and some lemonade. Had a visit from Cousin Pat, too! And the day was capped off by a visit from his Papa, who came wrapped in a box to fulfill this little boy’s wish from before surgery…

DAY 13: Finally on injections once/day (blood thinner / anti-coagulant due to the blood clot in his arm from the PICC line) – still HATES them and is actually really mean to whoever is in the room during the injections. He’ll start somewhat nice – “please stop it – stop it please”, then moves to shouting, “I hate you, get away from me, stop that, you’re crazy” – he HATES HATES HATES these injections. On this day, I gave him the first injection I’ve ever had to give anyone and I felt like I was going to throw up after it. Struggling to have to do this for 6 more weeks to the little man. He ate more this day (Sunday)… a little ice cream cup, some apple bread, and drank some lemonade. Spent quite a bit of time in his wheelchair and the whole family came up to visit for Father’s Day (and when Richard asked the next day if he should bring them all back, I quickly said “absolutely not”!!!). I took a little break to visit my dad with a couple of my kids – Richard and Parker stayed back with Colten. So now Richard also knows how to do some of the procedures we’ll continue doing at home.

DAY 14: Today! We are two weeks in and the end is closer. We hope to head home later this week sometime but this little guy needs to EAT some more food. He’s very picky and finicky right now, and his stomach is super tiny from not having eaten in two weeks. We’re starting to ask a lot of questions about home care, since when we leave here, Colten will still have numerous tubes and bags attached to him that we will have to lug around with him and care for throughout the day. The surgery and initial recovery is just one part of this process. The next 4-6 weeks will be difficult for him still, then we return for another minor surgery to remove the tubings. I’m sure he’ll be delighted.

He ate a bit more today – some pushups, a bite of egg white, couple bites of cream of wheat, half an English muffin, a good amount of an ice cream sandwich, some bites of crackers and bread, and a Swedish Fish as a treat for some evening torture (oral medication and replacing the PICC bandage on his arm – which if you’ve never had before, apparently hurts like mad according to Colten).

Today was pretty busy, with PT/OT working with him again, as well as Music Therapy. We also added in another procedure for the first time today, that will be something we continue long term. It was a success and again, puts us that much closer to going home. He spent so much time with his Grammy today! He also had about four hours off his IV, as they’re starting to pull back on the TPN (PICC line nutrition), and he took off raring to go in his wheelchair! It was good to see him moving around so easily. We know walking will come slowly – he is such a “trunk” walker, using his hips and abs so much, that it might take him quite a bit longer to feel comfortable walking with all that was done to him during surgery. Oh, and did I mention I made him throw up today? Yeah. Got a bit ambitious on giving him medicine – forcing it, really, that I pushed it through the syringe so fast it shot into the back of his throat and caused him to throw up both doses of medicine he had, plus some of the food he had consumed. Thankfully we had a much better second round of that medication this evening. When I bribed him with candy.

We are so ready to be home. He’s tired of everyone poking and prodding, removing bandages, checking incisions, doing injections, wiping things with alcohol (he hates the smell), moving him around too fast or too slow, taking medicine, etc…. We need more sleep, we need more “home”. We’re working on it! He’s trying to eat, I’m trying to bribe him!

Again, a huge thank you to our family and friends. I am overwhelmed and often just in shock over people’s generosity and care. Thank you for being in our village. Our amazing Elmwood family has continued to provide food for the family at home and we are so appreciative of this. Our families have come day after day to spend time with Colten. He so enjoys these visits, and it gives this mom some breaks from 24/7 care and entertaining. People have sent cards, gifts, and more. We haven’t even opened everything – we are still rationing it out because we know he’ll need some things back home when it’s not so easy to take him outside and out and about. So thank you for finding a way to make him smile and to ease the daily grind for us. Thank you so very much!

Hopefully the next time you hear from me, we’re busting out of here or already home!

Surgery #8: Day 8

Nights have been pretty rough and days are for the most part great. Colten is healing, improving, and getting challenged. This isn’t easy for him or our family and we know we still have a long road ahead. We are still in the PICU, possibly moving to the general pediatrics floor later this week. Colten is stable and doesn’t really need to be in the PICU, but he’s provided more full-time, dedicated care over here, at a 1:2 or 1:1 ratio. In the regular floor the ratio is much different. Since the PICU has space and they aren’t pushy, our doc is milking it and no one seems to be opposed. Probably because this kid is such a dang charmer. And I have some good pictures so I’ll try to inundate you in this post!

Playing I Spy with Grandma…

Colten is his regular self in terms of alertness, charisma, and asking a million questions. Today when one of his aunts visited, I’m pretty sure he didn’t stop talking for 15 minutes straight. He’s smiling, laughing, and wanting to play. He really wants to go home and he would love to be able to eat or drink something.

Visiting with Aunt Kara… with stuffed animals, giving her a ride on the bed, and snuggling while watching Beauty and the Beast.

He’s still on TPN feedings (fluid through his PICC line), he is getting twice a day injections to stop the blood clot from progressing (these will continue at home for a total duration of 8 weeks, but hopefully go down to once a day – and by the way, NOT looking forward to giving my child injections!!), and he continues to get a variety of medications to help stave off infection and keep pain at a minimum.

Bubbles with Papa…

While he doesn’t have a lot of pain, it was quite disconcerting last night when he had such spasms inside his body that they gave him valium, followed an hour later by morphine. Thankfully, the other medication that is supposed to help with the spasms appears to have kicked in a little more today and while his spasms still occur, they are less intense and for a shorter duration. Still hard to see him in pain but he really has done AMAZING with this entire ordeal. Very impressive.

Today he finally said, “I hate doctors”, as the nurses were removing his PICC line dressing to replace it. In my very sympathetic-motherly-nature, I said, “Well, good thing these ladies aren’t doctors!” Then he had to think a bit through the pain of getting the adhesive removed, and finally it came out, “I hate nurses!” I feel bad that these wonderful ladies we’ve had with us have to be seen as “bad” in his eyes, because of course, they’ve been incredible! But he does hate when dressings need to be changed, or anything adhesive needs to be removed, and anytime they mess with his PICC line or do injections. Doesn’t seem to be bothered at all by that NG tube up his nose though, as long as it’s not getting yanked back!

Overall, everything in this process is going well and as the doctors would expect. The blood clot was unexpected but it’s being handled and his arm is hardly swollen at all anymore and he plays with both arms very well again. They are keeping a keen eye on blood counts, as his hemoglobin dropped a bit this morning. The surgeries aren’t without long recoveries though, and often have complications in the process, and that’s where we are at. Dealing with multiple incisions, some leaking, draining, and of course, waiting for his organs to wake up so he can eat again.

For a kid that has SEVEN tubes of various sizes coming out of him in various places, he is being incredibly patient and compliant. He hates anyone messing with them, of course, but he isn’t yanking at anything, he isn’t pulling anything out, and he isn’t being in any way what I would expect a four-year-old to be like going through all this. We even have the injections down to a process, where we count 1-2-3-POKE, and then immediately count down, 5-4-3-2-1-and-done, then it’s all done He picks the thigh and the location, demands a bandaid, and puts up with it quite well.

He has also started PT and OT now. He tried standing, requiring a LOT of support, and even tried to take a few steps yesterday (Dad was holding him up but still – he tried!). Today he wasn’t interested in steps. He enjoys going out in his wheelchair to the play areas though – we can only be gone about 30 minutes right now though, due to the NG tube needing to stay on a suction. Thankfully he has SO MUCH to keep him occupied in the room while sitting down. Lots of table-top activities to do, and of course, as much TV as he could possibly want!!

We were allowed to give him a sucker to get his body moving, but he took a few licks and wasn’t interested. We’ll try again tomorrow…

As for the rest of the family, Richard/Dad is at home running the roost (and since I usually don’t let him do that, I’m sure he’s delighted by that!), Parker and Max are still in school through Friday, and Sophia gets to hang out with her dad all week!

We all FaceTimed yesterday – the boys had fun talking, and Sophia just kept saying “Hi Momma”. They got a kick out of the fact that they were all watching the same show from two different locations, at the same time!

Colten continues to get visits from  a small circle of people we can have back here in PICU. He seems to enjoy snuggling with anyone that will snuggle, and is always up for games and crafts. And stuffed animals. So. Many. Stuffed. Animals.

A huge thank you to our Elmwood village, who has helped supply meals at home to the family so Richard has one less thing to worry about in the evenings. I know that’s helped a ton!

We don’t have an end in sight yet here, and are just trying to be patient with this big waiting game. Even when we do get to go home, it will be an adjustment as Colten will still have a few tubes coming out of him (for about 6 more weeks after we get home), and will likely still be regaining strength and mobility. And of course, going home means lots of follow-up appointments to check on progress, and no 24/7 help from these lovely nurses (I am in awe of them)!!

Thanks for keeping up with us, and for the loads of well-wishes, prayers, good vibes, messages, cards and more!

Surgery #8: Day 5

Today was a good day! Colten continued to progress in the right direction and as expected. The doctors continue to monitor the blood clot in his arm and bumped him up to a full dose of the anti-coagulant today. He seems to be feeling a little stronger and used both of his arms to play today while in bed.

Our morning started with the usual rounding of all the doctors for a few hours, then after his surgeon finished up, I quietly and sneakily escaped from the room and left Colten with my mom, his “Grammy”. He was very active (compared to the past couple days) using his hands, and talked a bit more, even smiled quite a bit! He also had some more visits from some of my sisters / his aunties today – they’ve allowed us to extend the visitor list a little bit and he seems to really be awake more when they’re here. Probably because they bring him stuff. All I do is snuggle!

Grammy got him to do some big smiles today…

I enjoyed getting to see the other kiddos today and hang out at the park. The 90 degree weather was a bit of a hinderance (for us, not the kids) so we left after a while and went back to the house. Richard and Parker then took off to the hospital to relieve my mom, and I got some great snuggles in with Max and Sophia, cleared away piles of school papers and mail, enjoyed a couple cold beers, watered some flowers my wonderful green-thumb mother planted for us, and then topped it all off with a delicious dinner (thanks Dan and Ro!).

Parker brought up for Colten some gifts from the boys’ school… Both Parker’s class and Max’s class worked on a banner together that is too stinking cute! Colten’s class made a huge card with all their handprints – LOVE IT! And more gifts were sent! 

This child is being inundated with stuff. It’s been a little overwhelming because he’s just not “ready” yet for much, but I know as he gets more active and we are stuck here longer and longer, they’ll be used so much more. So thank you to everyone! Right now he mostly gravitates towards the influx of stuffed animals, and we use a lot of hand-held items/games/crafts to encourage him to use his arms and hands more. We have a growing stash of unopened presents waiting for him to perk up a bit more. His room is getting plastered in cards – thank you so much to the many, many people that have sent various well-wishes. We really appreciate all of the thoughtfulness, care, concern, and generosity so many people have shared. And if anyone wants to help us move this stuff when we transition to the other wing… ūüėČ

We might not post every day moving forward as we are really in a waiting game here. Or who knows, we might post every day. But just in case we do not, no need to be alarmed. We’re waiting for some of his internal organs to wake up, for him to regain strength, and for his body to start healing. We will go back and forth between posting here or just throwing a picture or two on his Facebook page. So stay tuned for more – he still asks to go home, but that’s just not on our radar at this time.

Sleepy time… he’s getting his first bag of TPN as I finish this up so hopefully he will have energy to go to the playroom tomorrow…

Surgery #8: Day 4

We are now 2 days post-op (“Day 4” is based to our initial admission date, then day 2 was surgery)… And we already broke hospital rules! Our surgeon wanted Colten to get up and moving today a bit so the goal was to do some upright sitting and a short wheelchair ride. He chose the wheelchair ride first because he insisted on going to the gift shop, which Richard and I supported – seriously – give this kid whatever he wants right now! As the nurse heard us talking, she said under her breath, “Well, you really aren’t allowed to leave the floor but since you already promised him, I hate to tell you ‘no’!” So she ran it by the attending doc and got his approval. Score. So whatever I tell this cute kid, you’ll just oblige? WINNING.

Today started with the first round of docs coming in at 6:45 AM, waking me from my blissful slumber snuggled up in bed with Colten, who groggily asked me at about 11:30 PM last night, “Momma, snuggle?” ABSOLUTELY! Back to this morning, we had docs come in at 6:45, 7:30 and 7:45 AM. These people seem to think we have nothing better to do here than talk to them at the early rise of the sun ūüôā More docs rounded at 9:45 and 11 AM, then we got a nice long break. At 11:50 AM we started the process of getting Colten into his wheelchair, down to the gift shop, and back up. This all had to be done in 30 minutes because that’s as long as he could be disconnected from the NG tube suction. It took all 30 minutes, and then a little (ok, so we broke two rules). But we succeeded in finding a new stuffed buddy. Apparently you can never have too many. Or at least Colten can never have too many!

When we got him back in bed and situated, he fell asleep fast and hard, for over two hours, stayed awake about an hour, then back asleep again for well over an hour. This time when he woke, he had the most beautiful smile plastered on his face for what felt like five minutes! I began to think something was actually wrong! But he smiled on, then said, “I want to sit in the chair.” So we moved him to the chair – no easy feat when your child has multiple lines going in and out of him, some plugged into things, draining into things, or draining things into him. Nurses are amazing!

Once in the chair we forced a bit of occupational therapy on him, playing with removable stickers (AKA “Colorforms” by all of us 80s kids). He is really resisting using his arms, likely because they’ve been poked, prodded, and still have IVs in them. His one, the one with a blood clot, is also a bit swollen so it’s hard to really use it and that’s his right arm, which he would rather use. But, he pointed, held stuff, and placed his stickers on the sheet, which was a huge step from earlier today when we could barely get him to hold onto a toy. And he made a scene from Charlotte’s Web (I’ve been reading that book chapter by chapter to the boys recently.) He wanted to hang out in the chair longer – I can’t blame him for wanting out of the bed – so we watched Toy Story until his eyes got a bit heavy.

After relocating him back into bed, the surgeon rounded one last time, checked him over, and between him and the nurse, they got him all prepped for a good night’s sleep. Today was a good improvement day. This is just one stage of many in the process and there’s a long way to go as his body “wakes up” in various places to enter into the next phase. The good thing is he doesn’t seem to be experiencing a ton of pain, so his frequency of morphine is pretty low compared to what they would expect. This is good because morphine will slow down his recovery.

Tomorrow brings some changes – increasing the anti-coagulant to help the blood clot more, and likely starting TPN in the PICC line. The TPN (total parenteral nutrition) will hopefully give him an increase in energy at the same time the sedation effects continue to subside. According to his labs, incisions, and everything else, the doctors are very happy with how everything is looking and responding.

We also got to FaceTime Colten’s older brothers and Dad today (Sophia was already sleeping)… Colten and I haven’t seen or talked to them since Tuesday morning at school drop-off, so we all missed each other. It was great to see and hear them, but it definitely made Colten sad. He continues to tell me multiple times a day, “I want to go home.” It’s a good thing kids that age don’t have a strong sense of time. I’m using his desire to go home to urge him to move his body more… “If you want to go home, we have to start moving around more. We have to sit up, go in the wheelchair, start standing and walking…” Hopeful he continues to progress in the right direction!

Now I’m off to snuggle, even though he didn’t ask me to yet ūüėČ

Surgery #8: Day 3

Today started early. EARLY. Before I get into it, I’ll quickly recap yesterday.

Wednesday, June 7: Colten was taken back into the operating room and fully sedated by 8:00 AM. Surgery lasted 13.5 hours. Because surgery crossed the 12-hour mark, they decided to leave him intubated indefinitely. We went up to his PICU room and settled in for the night. Thankfully, both Richard and I stayed overnight. (Thank you Anna!)

Onto today, Thursday, June 8.

1:40 AM – The “night” sort of ended around 1:40 AM when I heard someone come into the room. It was an ultrasound tech with a machine. I asked what she was doing and why and she responded, “All I can say is that I was called up to do an ultrasound, stat.”


Jen, Colten’s night nurse (last night and the night before!), was right behind her and said she had noticed his one arm was slightly more swollen than the other and they wanted to check for a blood clot.


The ultrasound technician completed the ultrasound and provided preliminary results to the staff outside the room. Jen returned and informed us that the test was positive and he had a blood clot going from his PICC line up to his shoulder.

While everyone in the room seemed to remain calm, my mind blew up around the idea of a blood clot and I instantly had a sinking “pit” feeling in my stomach and continued to be extremely nauseated for the next NINE hours. At that moment, they needed to remove all the lines going into the PICC line and relocate them to the IV in the other arm (which we thankfully had not removed sooner!). Normally, blood clots are treated with an anti-coagulant, but seeing as he just had major surgery, they didn’t want to thin his blood too much. Since that was all they could do for him at that time, so I proceeded to freak out for the next many hours.

Sometime shortly after that, Colten started to stir, but they weren’t ready to have him come out of sedation or get the tube removed from his throat. Since they were concerned that he would get upset about all the wires and the tube in his throat (can you blame him?!), they had to restrain his hands to the side of his bed. While this was bothersome at first for me, Colten only had a few brief episodes of being pissed and trying to get his hands, but quickly fell back asleep each time.

3:00 AM – One of the residents came in to let us know that the current treatment plan is to leave the PICC line alone as it is (not being used, but still “in”), and just monitor it. All was okay, his vitals were great and there was no reason to worry.

Sure. That helps. NO worries, just a big clot in our child’s arm!

7:00 AM – Dr. Hiller came to check-in. (He is our primary urology surgeon’s “2nd in command” and was in the surgery the entire time yesterday too.) He let us know they were getting the hematologist (blood doc) on board due to the blood clot and we would have more information later. He did some checks and flushes of the surgical sites. All good.

7:30 AM – Dr. Liss (our primary urologist) visited for a brief check-in, looking over what Dr. Hiller did, and said all looked good as well. He reiterated the next steps for the blood clot and expressed his concern about it. (Finally, someone else concerned about it! Not that no one else was, but he was the only one not completely at ease about it.)

(By the way, a LOT happens in hospitals before the sun comes up!)

10:30 AM – Our nurse, Shawn, came back in with a wonderful shot of Lovenox, kind of like Heparin, a blood thinner. The hematologist ordered a small dose of it to get started – small enough that it would not hopefully cause any issue with the surgical sites bleeding but would at least start the process for stopping the clot from growing.

11:05 AM – EXTUBATED! Colten started coming out of sedation, fighting the breathing tube and was finally able to be extubated (remove the breathing tube). When the tube came out, it was a quiet murmur of “Momma… Momma… Momma…” (heart melting). As soon as I saw him awake, my stomach returned to normal. It was all nerves. Once I got to him, his murmur changed to, “I want to go home.” I know buddy, I know. He started asking for water, and was able to take some in with just a sponge on a stick thing. Never seen that before – very cool. It limits what he gets to just drops. Since his bowels are asleep from the surgery (likely for 6-10 days), he cannot eat or drink anything until they start to wake up, and then has to carefully return to eating. The NG tube running up through his nose and into his stomach will suction out any little water that does get down there.

1:40 PM – Dr. Hiller returned and explained in more detail what we were doing with the Lovenox (small does now, increase about 48 hours post-op – sooner if needed due to negative changes). He also explained that our hope is to be able to leave the PICC line in because we will  likely start TPN (Total Parenteral Nutrition) in a couple days and need it for that. TPN provides more nutrients than just sodium chloride IV fluids. Colten can be okay on standard IV fluids for a few days, but will need more sustenance after that to help him heal and stay strong. However, feeding tubes aren’t allowed because we need to keep the stomach and bowels completely clear right now, so fluids directly into the blood stream are the only way to do this.

2:00 PM – Dr. Berman came to meet us. He is the Chief of Pediatrics here at Beaumont Children’s Hospital, and our hematologist. He further explained the Lovenox usage/dosing, topping it off by telling me that he would be on this for 6-8 weeks. This is given in shot format, so I assumed, and asked, “So, we take him somewhere to get this every single day for 6-8 weeks?” He laughed. Said, “no, you’ll give it to him!” Hm. Yeah. I don’t do needles! Richard had left the hospital by this time to attend Max’s Kindergarten Celebration, so when I texted him the information, I followed it with, “NOT IT!!!” I’m not sure he thought that was amusing.

6:15 PM – Dr. Liss returned for an evening check-in, flushed Colten’s tubes, applied some dressing to the surgical sites, and carefully reviewed all the work that was done and how Colten seemed to be responding. He’s extremely cautious with everything, which we are grateful for, and is leaving no stone unturned. He hopes to leave Colten in the PICU until they kick us out onto the regular peds floor. This situation gives him the most attention, care, and monitoring, so we’re all for that.

The rest of the evening was fairly quiet. Richard and I were again able to both be with him – my parents had the other children. They have been amazing every single day. My mom even came up this morning after finding out about the blood clot, and stayed through the afternoon when she turned and went to Max’s Celebration. My sister Kara came up to visit this evening which Colten loved – he was the most awake for her and was quite expressive with his eyebrows as she pulled out the various gifts she brought for him!

We definitely try to read every message and comment sent our way and appreciate all the love and support. Right now, we’re in a waiting game of getting his body to fully wake back up, have him regain strength, get some rest, and also start moving. He has a long road… Tomorrow the goal is to get him out of bed (yikes) and sitting in his wheelchair. We’ll start by just sitting on the edge of the bed!! Wish us luck ūüôā


A Non-Political, Political Post About Spina Bifida [Michigan HB 4584]

I imagine most people right now think I’m about to go into a post about the current situation with the Affordable Health Care Act, pre-existing conditions, and all that jazz. No. Not today. Not here. That topic is so overwhelmingly difficult for me to process, and painful to think about, that part of me wants to just wake up one day and it will all be a bad dream.

No, today I want to talk about a bill that has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs YOUR help!

You follow Colten here four plus years later. You know what Spina Bifida “looks like”. If you started with us early in our journey, you know that what Colten does today is absolutely NOT what we ever expected him to do when he was born back in 2012. We were given grim outlooks. Complete¬†lower body paralysis. Wheelchair use full-time outside the house. One doctor even said we could leave him to die. Most of you know that information already¬†from either following our story over the years or from jumping into our lives anytime since and hearing me spew about it – because I do. Every chance I get. I repeat that story because we are proof that doctors are providing families with outdated, inaccurate information.¬†I still have never worked up the nerve to tell that doctor in Lansing what I want to tell him. Partly because at the end of that day, we transferred Colten to Mott and it was the best decision.

But the reality is, we aren’t the only ones that got¬†this type of information and we aren’t the last. Too many families get this outdated, inaccurate information at 18-20 weeks. They are vulnerable and having to make a decision – whatever it is: abort? fetal surgery? post-natal surgery? What is even scarier is that ultrasounds¬†can be wrong. There have been people given a diagnosis, and then the child is born with NO Spina Bifida of any form. So information needs to be accurate. It needs to be current. Kids with Spina Bifida and adults with Spina Bifida don’t have easy lives. No one does. But let’s be clear about one thing: they do have high quality, enjoyable, successful lives.

I’m veering away from the point of this post, somewhat. I’m not here to retell our story to you, I’m here to ask for you help. Let me try again.

Today I want to talk about a bill that has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs YOUR help!

If you live in Michigan, please give me¬†TWO minutes of your time. Literally, it will not take you more because I’ll give you text to copy and paste, below my letter. And I’m supplying you a list of¬†local representatives before the letters so you can find yours! (Mad props to Adel for this work… thank you lady!)

If you’re so inclined to read before you commit, here is a link to the entire bill. This bill is not republican, democrat, or any party. It is PRO-INFORMATION. We are not trying to encourage or discourage abortions, adoptions, or births of any particular nature. We are not touching anything to do with insurance. We simply want ACCURATE, UP-TO-DATE information shared with families that find themselves with a Spina Bifida diagnosis.

Below are THREE resource sections:

  1. List of Michigan legislators that are members of the MI House Committee on Health Policy. We want their support of this so it moves forward. This is the SECOND year this has been in front of them and it stalled last year.
  2. A copy of what I sent my legislator
  3. Text for you to use so you can literally copy and paste it to your legislator. Feel free to edit as you see fit, but I’m giving you something easy here.

Thank you! If you can take a few minutes and do this, thank you! We greatly appreciate it and need all the support we can get here. There was a lot of positive support already for this the last time it was in committee but it stalled out. We need more backing and more people saying, YES, this is what needs to happen. Hopefully you are one of those people.


Contact these legislators (Members of the Michigan House Committee on Health Policy) today to share your story and to indicate your SUPPORT of Michigan HB 4584:

Hank Vaupel (R) Committee Chair, 47th District
CONTACT Rep. Vaupel: http://gophouse.org/representativ…/southeast/vaupel/contact/
Howell area

Jim Tedder (R) Majority Vice-Chair, 43rd District
CONTACT Rep Tedder: http://gophouse.org/representativ…/southeast/tedder/contact/
Clarkston area

Joseph Graves (R) 51st District
CONTACT Rep Graves: http://gophouse.org/representativ…/southeast/graves/contact/
Fenton area

Daniela Garcia (R) 90th District
CONTACT Rep Garcia: http://gophouse.org/representatives/westmi/garcia/contact/
Holland area

Jason Sheppard (R) 56th District
CONTACT Rep Sheppard: http://gophouse.org/representat…/southeast/sheppard/contact/
Petersburg/Milan area

Julie Calley (R) 87th District
CONTACT Rep Calley: http://gophouse.org/representa…/…/calley/contact-rep-calley/
Portland/Hastings area

Diana Farrington (R) 30th District
CONTACT Rep Farrington: http://gophouse.org/…/diana-farring…/contact-rep-farrington/
Sterling Heights area

Roger Hauck (R) 99th District
CONTACT Rep. Hauck: http://gophouse.org/representati…/…/hauck/contact-rep-hauck/
Mt. Pleasant area

Pamela Hornberger (R) 32nd District
CONTACT Rep. Hornberger: http://gophouse.org/…/so…/hornberger/contact-rep-hornberger/
New Baltimore/Richmond area

Bronna Kahle (R) 57th District
CONTACT Rep. Kahle: http://gophouse.org/representati…/…/kahle/contact-rep-kahle/
Adrian area

Jeff Noble (R) 20th District
CONTACT Rep. Noble: http://gophouse.org/representatives/southeast/noble/contact/
Plymouth area

Winnie Brinks (D) Minority Vice-Chair, 76th District
CONTACT Rep. Brinks: http://housedems.com/contact-rep-brinks
Grand Rapids area

Andy Schor (D) 68th District
CONTACT Rep. Schor: http://housedems.com/contact-rep-schor
Lansing area

LaTanya Garrett (D) 7th District
CONTACT Rep. Garrett: http://housedems.com/contact-rep-garrett
Detroit area

Sheldon Neeley (D) 34th District
CONTACT Rep. Neeley: http://housedems.com/contact-rep-neeley
Flint area

Abdullah Hammoud (D) 15th District
CONTACT Rep. Hammoud: http://housedems.com/contact-state-rep-abdullah-hammoud
Dearborn area

Kevin Hertel (D) 18th District
CONTACT Rep. Hertel: http://housedems.com/contact-state-rep-kevin-hertel
Eastpointe/St. Clair Shores area


Dear Rep. Hertel,

I am writing to you today to encourage you to support House Bill 4584. In all of the medical/health politics today, this bill is not focusing on any political party – simply providing families with up-to-date, evidence-based, written information about Spina Bifida. It strives to get contact information regarding support programs and services to expectant and new parents of children with Spina Bifida.

This bill has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs your help!

Seems like this sort of bill wouldn’t be necessary. Unfortunately, many parents are given inaccurate, outdated information upon diagnosis. I know – we were given outdated information over four years ago. We were even told we could leave our son to die.

The public trusts medical professionals. It is too dangerous for the future of our country to have those professionals sharing inaccurate information. Babies are being aborted or given up for adoption due to grim outlooks, or even blatant misdiagnoses that the family cannot come to grips with. It needs to stop. This isn’t about abortion, adoption, or insurance. This is simply about getting ACCURATE, UP-TO-DATE information to families in a very vulnerable place so they can make the best decision for their family.

We hope you can support this. I am happy to discuss this more via email, phone, or in person.

If you are interested in what Spina Bifida really looks like, I invite you to read through my son’s blog:

Thank you for your time today!

Kathleen Pojeta


Please look for the bold, capital letters – replace that with your information, including your own name at the end.


I am writing to you today to encourage you to support House Bill 4584. In all of the medical/health politics today, this bill is not focusing on any political party – simply providing families with up-to-date, evidence-based, written information about Spina Bifida. It strives to get contact information regarding support programs and services to expectant and new parents of children with Spina Bifida.

This bill has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs your help!

I know a little boy, Colten, who was born with Spina Bifida. His parents were one of the many given inaccurate, outdated information upon diagnosis. They were even told they could leave him to die after he was already born. Thankfully, they didn’t listen to the negative, found a better support system, and today, have a vibrant, healthy, smart, determined four-year-old! You can learn more about Colten here: http://coltenrobert.com

The public trusts medical professionals. It is too dangerous for the future of our country to have those professionals sharing inaccurate, outdated information. Babies are being aborted or given up for adoption due to grim outlooks, parents are missing opportunities for fetal surgery because of outdated medical information, and there are even cases of blatant misdiagnoses that the family cannot come to grips with. It needs to stop. This isn’t about abortion, adoption, birth style, or insurance. This is simply about getting ACCURATE, UP-TO-DATE information to families in a very vulnerable place so they can make the best decision for their family.

We hope you can support House Bill 4584.¬†We certainly¬†do, and we know Colten’s family does too!

Again, if you are interested in what Spina Bifida really looks like, I invite you to read more about Colten: http://coltenrobert.com

Thank you for your time today!