Thursday, November 28, 2013

The Thanksgiving Special

Since Thanksgiving is a time to reflect on blessings in your life and what you're thankful for, we decided to ask Nolan the Thanksgiving question. Here's what he said:

Now, I'm not totally sure, but I would guess Nolan's answer (before he chucked the mic) might have included some of his favorite things, like popcorn, movies, and his dog, Jetta. But, Nolan has much more to be thankful for. Since he isn't capable of deep contemplation and life analysis at this point, I'll extrapolate for him. Here are some of the more significant blessings in Nolan's life:

Health and Medicine

Especially given Nolan's recent surgical adventures, Nolan should be very thankful for his health and the medical community that helps him maintain it. As most of you know, Nolan recently had multiple surgeries and complications. I'm so thankful for Nolan's surgeon and how he managed Nolan's complications. And, I'm also very thankful for the other excellent hospital staff that cared for Nolan. We are fortunate to live in a city with a great children's hospital -and Nolan's Daddy just happens to work there too! It's like a second home...
Nolan had his most recent surgery 3 days ago. It was a simple procedure and he was able to go home the same day!

Daddy

Nolan loves his Daddy. To Nolan, Daddy is a book reader, swing pusher, funny song singer, and dancing entertainer. Of his two parents, Daddy is probably more the fun goofy one. Nolan doesn't realize it, but Daddy is also the main provider of Nolan's precious popcorn, his warm house, and all his cute clothes. Nolan is quite blessed by such an awesome dad.

Since Daddy had to work this Thanksgiving, I made dinner, and Nolan and I brought it to Daddy at work!


Therapies

In his short 2 years, Nolan has already received a lot of therapy. Because kids with Down syndrome have developmental delays, they need a variety of therapy services to help them (correctly) achieve the same milestones as typical kids. Nolan has received therapy from Linda, an Occupational Therapist, since he was 2 months old! Linda has been a huge resource and support to Nolan and me. She identifies areas Nolan needs to work on and shows us how to work with him. She has also been a blessing to me, listening to my concerns and frustrations, and it's obvious she cares a great deal about Nolan. And, Katie is the Speech Pathologist Nolan has been seeing for the past 6 months, first for feeding therapy and now speech. She also has been a great help to us, and I'm so thankful for her help in managing Nolan's dysphagia (trouble swallow, specifically liquids).

Katie and Nolan in a recent speech therapy session.
Linda teaching Nolan how to turn his wrist to drop coins in a piggy bank.

As you can see, Nolan is one blessed little boy! And he has been an incredible blessing to us as well!

Trying to help with the cooking?

Playing with the fun wall at the children's hospital.

Thanks for reading and I hope you all had a happy Thanksgiving! Even if you didn't, I hope you were able to reflect on the blessings in your life and find joy in unexpected places.
Special thank you to all the nurses, doctors, pharmacists, and other medical personnel who worked today so I could be home with a healthy boy, knowing if we needed you, you'd be there, sacrificing time with your family to serve strangers.

Saturday, November 23, 2013

Positivity: Got Down syndrome?


I’ve had so many positive experiences within my Down syndrome community lately that I honestly feel sorry for you if you don’t have Down syndrome in your life. :)

After several posts with a negative theme relating to Nolan’s recent surgeries and complications, I’m happy to share some positive experiences with you now.

Yesterday, Adam and I participated in a research project for a fellow Down syndrome parent’s doctoral dissertation. She interviewed us regarding how we coped with Nolan’s Down syndrome diagnosis initially and over time, what support systems we used, and how Down syndrome has affected our lives. 

I really enjoyed talking with her about our experience. Although each parent deals with the diagnosis differently, I think she is going to find some common threads throughout her research. I shed some tears as I recounted my reaction to receiving the diagnosis, but Nolan was there to pat my shoulder as I wiped away tears. Although the beginning -when Nolan was diagnosed- was painful, our perspectives have changed over time. I have noticed what an evolutionary process this is. As Nolan grows and develops, as we have more experiences, our attitudes and thoughts toward Down syndrome are constantly changing. Experience, knowledge, and understanding will do that to you. A small part of us will always grieve that sense of loss we felt when we received the diagnosis, but overall, Down syndrome has greatly blessed our lives. I've mentioned before how the Down syndrome community has supported and encouraged me. I have met some wonderful people, who have changed my life -for the better- because of Down syndrome. My heart has been opened in ways that I never anticipated because of Down syndrome. There was a time, in the beginning of this journey, when I wished I didn't have to walk this path. That mindset is completely gone. Even though it's not always rainbows and butterflies, in ways that I can't even fully articulate, my life is immeasurably better because there is Down syndrome in it.

Meeting with our interviewer and reflecting on Down syndrome in my life was a great experience yesterday. Here are some other recent positive experiences I've had:

We’ve discovered a new therapy service that utilizes a practice model vastly different from anything we’ve ever done with Nolan and plan to explore the opportunities there, as we are excited to learn how Nolan may really benefit from them. (Hopefully I’ll be writing more on this later.)

I had a positive encounter with a couple while shopping at Target with Nolan. They stopped me to ask if they could meet him, and then went on to tell me about their daughter with Down syndrome and showed me pictures of her on their phone. This happens to me on occasion, but this couple also had an encouraging report regarding their daughter’s schooling –a topic that weighs on us right now as we begin to explore the school options for Nolan (for when he turns 3), so I was grateful for their input.

And, I also received a text from a friend who had a positive and encouraging experience when she toured a potential school for her daughter (with Ds) who is Nolan’s age. (Also, look out for a future post on our school planning.)

I feel like this post is a little all over the place, but I was just very eager to share some “good” things with you after all the recent “bad” experiences I’ve written about. And, of course, this post wouldn’t be complete without some pictures of what Nolan’s been up to recently!

This week, we've allowed Nolan to watch Jeopardy every night with his evening snack. I admit, I've come to look forward to that half hour and really enjoy watching Nolan clap for the daily doubles.
Practicing stepping up and down during therapy this week. He did great!

So proud of himself!

This makes me so happy, and not just because of the pinky fingers in the air. Nolan's been working on feeding himself, and he did a great job last night! And, I was thrilled that he ate this entire mashed potato/veggie quesadilla without issue! Progress is a beautiful thing.
If you have 1 minute 21 seconds more to spare, I highly recommend watching the following video. It's of one of Nolan's favorite books, Shake a Leg.



Thanks for reading!

Thursday, November 14, 2013

The Wrap Up

I'm tentatively calling this post "The Wrap Up" because I think Nolan's surgery complications have resolved, but it wouldn't be the first time Nolan surprised us...

I debated not writing this post because, well, I'm sick of writing about Nolan's surgery and the all the complications he's had. I'm just ready to move on and share some fun Nolan adventures with you. But, I've already written the beginning and middle of the story, so I guess I need to wrap it up with an ending! And, I'm praying this is really the end!

The background: As many of you already know, Nolan had surgery on October 28. He had choanal atresia repair (opening up of his blocked nostril), and a tonsillectomy. Nine days later, he developed a post-op hemorrhage and had emergency surgery in attempt to cauterize the bleed. It was a temporary fix. A few days later, he bled again. And then again. And again.

The subsequent bleeds we watched at home carefully. It was discovered with the first bleed, during the surgery to cauterize, that a major blood vessel was not hemorrhaging, but some irritated tissue in his throat. So, each episode of bleeding eventually stopped on its own. The surgeon was aware of each episode, as we kept in close contact with him via phone. Finally, by the fourth bleeding episode this Tuesday (post-op day 15), he asked us to return to the ER.

By the time we reached the ER, the bleeding had pretty much stopped again. But the nurses started an IV and drew some labs to check his Hemoglobin level (to determine how much blood he'd lost). The surgeon decided that if his Hgb was stable, we could go home and continue to monitor him. If it was too low, he might need a blood transfusion and definitely a return to the OR. The results came back: Hgb was stable.

I wasn't sure how to feel at this point. Obviously, I was glad he hadn't lost as much blood as it appeared he was losing each time he bled. But, I also just wanted a solution to this seemingly never ending problem! When is he going to stop bleeding?! I was absolutely sick of finding Nolan in a pool of blood every few hours. I'd scrubbed more blood out of his sheets, his rug, his rocking chair cushions, and his clothes than I ever imagined possible. But, the surgeon was hesitant to go back to surgery and disrupt whatever healing process was taking place because poking around would likely cause further bleeding. So, we decided to wait and watch him at home.

Tired of seeing this. But, how does he still look cute covered in blood?
I joked that my house looked like a horror movie, but it was kind of true.
A few minutes after the surgeon left, we prepared to leave the ER and head home. Then we noticed a tiny trickle of blood coming from Nolan's mouth again. And when the nurses came in to remove his IV,  Nolan started crying. The crying set off a burst of blood that came running out like a faucet, spraying all over the stretcher each time he let out another cry. The ER doctor rushed in, then rushed out, saying he was calling the surgeon to come back. Within thirty minutes, Nolan was being rushed back to OR. (And, thank heavens the nurse hadn't pulled the IV yet!)

I prayed fervently the entire time Nolan was in surgery, as I know many of our friends and family did. Thankfully, Nolan continued to bleed during surgery, so the surgeon was able to pinpoint the exact source of the bleed and cauterize it. The surgery was a success and the surgeon felt confident the bleeding was over. Nolan came out of anesthesia well in PACU -the best he ever has- and then he went up to the floor to spend the night.

Doing good as he left the PACU!
The first few hours after surgery, I felt very positive. Nolan looked the best he'd ever looked just after surgery, and I was cautiously excited that the surgery had been a success and there would be no more of this bleeding nightmare. Around 11 p.m., Adam ran home to change clothes (he was still in scrubs from working all day) and let Jetta out. While he was gone, things went bad quick.

Nolan usually has some trouble clearing secretions after surgery and requires a little oxygen, as he was this time. But very quickly, he went from breathing clearly and needing minimal oxygen to using every muscle in his abdomen to breathe and needing A LOT of oxygen. I could hear the high-pitched stridor as his airway got more and more narrow every minute as his throat swelled. I noticed the retractions in his ribs and throat -the work of breathing becoming very laborious. As a nurse, I knew what was happening and I knew if he wasn't treated quickly, he would need to be intubated to keep his airway open. Thankfully, our nurse was very attentive and acted quickly. She paged the doctor and respiratory therapist, and after a breathing treatment and some IV steroids, Nolan's breathing started to improve. He remained on oxygen for several hours, and the stridor, while improved, didn't completely resolve until morning.

Later in the day, Nolan was doing well. His breathing had greatly improved, he had no further bleeding, and he was able to drink and eat a little. After talking to the surgeon again, we felt confident in taking Nolan home, so he was discharged in the afternoon!
Discharged and happy!
I've been a little on edge when I go to get Nolan from his room after naps, and this morning, half-expecting a bloody mess again. But, so far so good! I'm really starting to believe the worst is behind us -finally!

{Nolan is scheduled for a debridement (cleaning out of scar tissue) for his nose on November 25th, but it should be an outpatient surgery and if all goes well, he'll go home later that day and I won't be writing a blog post about it. Now that you're aware, though, if you wouldn't mind keeping us in your prayers that day... :)}

Now that all that nastiness is done, I'm just dying to share some cute pictures of Nolan from today! He's not quite 100% yet, but he's much closer than he's been in almost 3 weeks!




 Thanks for reading!

Monday, November 11, 2013

Answered Prayers


If you’ve been following this blog or my Facebook recently, you know that the last 2 weeks have been unusually stressful for our little family. Nolan had surgery 2 weeks ago today and has had quite a rough recovery, including issues with pain and bleeding. Just when he was taking major steps forward, he took another step back today. Even though he’s had bumps in the road, there are definitely ways in which the situations could’ve been much worse, and I’m so thankful they weren’t.

Last night, Nolan didn’t sleep well. Which means Adam and I didn’t either. Nolan fussed and cried several times throughout the night, but fell back to sleep on his own. I couldn’t tell if his extreme restlessness was from sleep apnea or pain or something else. But by 3 a.m. he was crying loud enough that I could tell he wasn’t going to fall back to sleep. I went in his room and comforted him, wiped his nose, and when he settled down, I left and we all went back to sleep.

This morning, I went in to get him when he woke up and saw lots of blood. There were pools of blood with clots on his sheets. Blood drips on his rug, smeared on his rocking chair cushions, the windowsill, his face, and soaked through his pajamas. Immediately I could see the bleeding was not active, as there was no fresh blood coming from his mouth or nose. So after calling the surgeon’s office, it was determined we didn’t need to do anything unless the bleeding started again. So, I spent the day cleaning blood off Nolan and everything in his room, and praying he didn’t re-bleed. Not what I had in mind for today, but at least I had the time and opportunity to do it.

The blessing in today’s bleeding episode is that it stopped on its own. And because it stopped on its own, the bleeding was likely from tissue and not a major blood vessel -same as the first bleed last week. There have been many blessings and answered prayers throughout this ordeal in the past weeks. So many, in fact, that I can’t even begin to name them all. But here are a few that stick out to me:

After Nolan’s emergency surgery for the post-op hemorrhage last week, he didn’t pee for a long time. He spent the night in pediatric ICU and we kept checking his diaper throughout the night but it remained dry. After about 14 hours of no urine, the nurses used a bladder scanner (an ultrasound tool) to determine he had quite a full bladder. The anesthesia from surgery was likely causing some urinary retention, which is not an infrequent side effect. If unable to pee on his own, I knew the nurses would need to insert a catheter to empty his bladder. I did NOT want them to do that to him, after all he’d been through. We tried repositioning him, waking him up, taking his diaper off and exposing him to air, dipping his hand in warm water. Everything we could think of. Nothing worked. So, I started praying. I prayed that he would suddenly pee so we could avoid another traumatic and uncomfortable procedure and the tears and fight that would go along with it. While I was praying over him, he flooded his diaper.

Also following his surgery for the hemorrhage, Nolan had residual “gunk” in his upper airway even after we came home. He usually has trouble clearing copious secretions, such as post-operatively, or when he’s been crying for a long time. But he just couldn’t seem to clear them thoroughly even days after surgery despite a decent cough effort. I was beginning to worry about how congested his breathing sounded and could feel the rumbles in his chest when I laid my hand on his back. A respiratory infection is the last thing he needs right now. So, a few days ago, I laid him down for his nap when his breathing sounded its worst. As I watched him sleeping but breathing noisily, I prayed that God would clear that gunk out and keep him from getting sick. When he woke up, he sounded much better. The congestion has returned occasionally, but he’s able to cough it out when it does. And he has remained fever-free this whole time.

While I am most thankful for God’s protection throughout Nolan’s medical issues, I am also thankful for the strength God’s given me. By Friday last week, I was spent. The week had been very stressful, with Nolan’s bleeding, rush to the ER, emergent surgery, and difficult post-op period. Saturday and Sunday were just what I needed. Time at home, with my husband, to get some things done, to run with friends on Saturday, and most importantly –to rest.

I’m also just continually blessed by our friends and family who have prayed for us and Nolan and offered love, support, and help. And, while this stressful season has not been fun, it has brought me many blessings and also brought me closer to God. I guess that’s the point of all trials, isn’t it? To draw us closer to God and make us more like Christ? I’m learning it’s a process.

And, in light of the recent tragedy in the Philippines and Veteran’s Day today, our struggles are really quite minimal. We have everything we need -including food, medical care, and the freedom to publicly ask for prayer when our kid needs it. That’s the real blessing.

A little blood loss isn't enough to get this guy down.

Looking forward to more of these smiles as Nolan continues to recover!
Thanks for reading (and again, praying)!

Oh, and P.S.! All the blood came out of everything! Another miracle! :)

Wednesday, November 6, 2013

Emergency

Some of you may already know what happened today because of my Facebook updates, but I'll fill in some details for you, as I've had people ask for specifics.

If you read my previous posts, you'll know that Nolan had surgery (choanal atresia repair and tonsillectomy) 9 days ago and that he's been recovering fairly well, aside from some issues with pain. The last few days, he's been more grumpy and painful than he had been over the weekend. So, this morning I started his breakfast with some applesauce/Lortab mixture to get his pain down so he could eat the rest of his breakfast. After only a couple bites though, he began to cry, like he has been at breakfast the last couple days. So, I got him out of his highchair so he could calm down. His crying suddenly got louder, though, and I looked down and saw bright red blood oozing from his mouth. As I picked him up, I noticed there was a lot of blood and it wasn't slowing down. I tried to contain the blood as I called the surgeon's office, but before I even talked to the nurse, I knew we were headed to the ER.

I threw some shoes on and called Adam, who was already at the hospital working, to meet me down in the ER. It was raining hard so I drove very carefully but as quickly as I could, praying the whole way. I noticed a bad accident that was shutting down the other side of the highway, and said a thankful prayer it wasn't on our side of the highway! While I was driving, I frequently checked the rear-view mirror, trying to make sure Nolan hadn't passed out because I had no idea how rapidly he was hemorrhaging and he had gotten very quiet. Once, I called back to him and he managed to "talk" back to me, letting me know he was still wide awake. Bless his heart!

Adam was there to meet us at the door of the ER and we went straight to a room. No waiting when mom and child are wearing that much blood! By the time the nurses and doctors assessed him, the bleed had slowed to a trickle, but they assured us he would still need to go to OR. Sure enough, within an hour, Nolan's surgeon had arrived and they were wheeling him off to surgery.

Surgery went well and the surgeon was able to find the bleed quickly and cauterize it, without any further issues.

Nolan is now resting in the pediatric ICU, where he'll spend the night. We anticipate discharge sometime tomorrow, barring no further problems. Nolan's breathing was pretty rough after surgery (it usually is immediately post-op) but it's already improved and he's requiring only a little oxygen while he sleeps.

As I mentioned in my previous post, redheads are more inclined to have increased bleeding, and I guess that was true in Nolan's case. After surgery last week, I had asked the surgeon about Nolan's risk for bleeding post-operatively, and he assured us there was only a 1% risk of a bleed after the tonsillectomy. The risk is highest between days 7 and 14 post-op, when the scabs at the tonsilectomy site usually fall off. If the scabs detach too early or they detach improperly, a hemorrhage can result. I should've known a 1% risk didn't apply to Nolan. He's already defied so many "odds." (Surviving a chromosomal "abnormality" at conception, having red hair AND Down syndrome, and being incredibly cute despite how much he takes after his dad :) -to name a few.) Hopefully now that we've gotten that complication out of the way, Nolan can continue to recover peacefully.

I haven't had much time to process today's events, so I don't have any great insights to offer. Instead, I'll just share my favorite and least favorite moments from the day:

Favorite~ While we were in the ER, I distracted Nolan with videos on my phone as doctors and nurses came in and out. But my phone didn't have much of a charge and I knew it would die soon, so I put it away and turned on the TV in the room to a Curious George movie. I tried to excitedly show Nolan the new movie he could watch but he wasn't falling for it. He gave me a big grump face and signed "movie" and "phone." I guess my iPhone videos are way better than some silly Curious George on the big screen. I was just in LOVE with how well he put together those two signs to tell me exactly what he wanted. Go buddy!

Least Favorite~ With all of Nolan's other surgeries (and CT), the anesthesiologist has allowed me to accompany Nolan to the OR and stay with him while they put him under with gas. That way he's never awake and without me. Today when I asked for the same allowance, I was told that I wouldn't be allowed to go back. So, we reached the hallway to the OR and they made us say goodbye as the anesthesiologist took a scared and tearful Nolan from me. It was hard. Adam and I were escorted out and I cried to Adam about how much I hated that anesthesiologist. She was a horrible person and how dare she not let my child be comforted by my presence when he needed it most. Later, she came to the PACU to apologize for not being able to let me go back and for not properly explaining why I wasn't allowed. She explained that being an emergent situation and that there was blood pooling in his airway, they needed to act quickly and weren't sure how difficult getting his breathing tube in might be. Obviously, a parent probably shouldn't witness that and they needed "all hands on deck," without parents in the way. Ok, so she's not a horrible person.
Resting on Daddy.

All in all, it was a very stressful day, but I'm so grateful for the wonderful care he received this morning and continues to receive now. The Lord is definitely watching over our little guy and I'm so thankful for His protection. Thank you to all our friends who prayed for us and Nolan today.
Taking a little snooze in the PICU. Poor guy had a ROUGH day!


Thanks for reading (and praying)!