27 February 2013
25 February 2013
Tonight as I rocked Luke to sleep, he slipped both of his chunky little arms covered in the sweet perfume of baby lotion around my neck and hugged me. It warmed my heart so much to cuddle with him tonight... I can hardly remember my life before becoming a mom, surely it was no where near as wonderful as it is right now...
24 February 2013
Growing up on a dairy farm... owning and breeding registered Jersey cattle and being highly involved in 4H and FFA activities to help reinforce what I was learning hands-on while working with my cattle at home gave me a pretty good foundational understanding of bovine genetics. I learned the importance of genotype, phenotype and not to be underestimated, environment and the role it plays in an animal's development.
Genotype V. Phenotype: Easily understood as the entire genetic makeup of an individual (under the skin) versus the phenotypic traits that can be visualized (things you can see on the outside). In Luke's case, we have a picture of one of his cells, also known as his Karyotype and it shows us that from a genetic makeup perspective he has three copies of the 21st chromosome - validating that he does indeed had Down Syndrome. In attempting to visualize the phenotypic expression of his genetic anomaly, one might notice the wider than normal space between his big toe and his second toe, his slightly thicker neck and the subtle differences with his facial features.
When factoring in environment, one has to wonder what impact it might have on Luke's life long-term. Some of the environmental factors that I know are meaningful with developing cattle are relevant in human development too..... nutrition, medical care, housing, and loving / nurturing caregivers amongst other variables.
When visiting with our Medical Genetics team, we typically spend the time learning more about Down Syndrome, what the genetic condition might mean for Luke's life and what we need to screen and test for to make sure he is getting the best care possible. We always review what I lovingly refer to as "The List" [Insert sarcasm here]. "The List" is published by the American Academy of Pediatrics and is the source that our doctors use to make sure we are treating Luke's development according to the proper guidelines. The link above only takes you to an abstract of "The List" and I wasn't able to find the same version online as we were given by the doctor, so I typed up a copy, here is what is looks like:
Although I hate it to admit it, I guess "The List" is kind of important. I should be grateful that we know to have a heightened awareness of the potential for these medical issues as the future unfolds for us, but I hate the picture it paints for Luke's life. I wish they would mix in something positive... I've read about folks with Down syndrome being described as sweet, caring and loving individuals, what about that? I've read about them dealing with some of the medical issues listed above and somehow, still thriving in our world, doesn't that count for something? I wish they would share a vision of hope for families of children diagnosed with DS instead of a life of doctor visits and pain. Medical genetics is necessary, I know that but I will say the general message they have to share and the way they deliver it is my least favorite of all the groups of doctors we've met with so far....
23 February 2013
Since learning of Luke's heart defect, I've used their website on multiple occasions and I've come to rely on it as a trustworthy resource... and their information on Congenital Heart Defects has really helped me to learn more about what's happening inside Luke's little body and since peace of mind comes with better understanding of your situation, it's been very meaningful to me!
The American Heart Association's mission is to build healthier lives, free of cardiovascular diseases and stroke. "That single purpose drives all we do. The need for our work is beyond question. We use dollars raised through Jump Rope For Heart to help children, schools and communities through initiatives such as":
- Fighting childhood obesity. Numerous national and community-based programs are educating children and families about the risks of obesity — and empowering them to take action against it.
- Cutting-edge research. Ongoing discovery of new treatments, technologies and preventions are vital to saving and changing lives. Since 2003 the American Heart Association has committed more than $76.2 million for research projects related to children.
- Keeping PE in schools. Volunteers and staff urge lawmakers at the federal and state levels to support quality physical education for all public school children through grade 12.
- Better nutrition in schools. We support national- and state-level legislation so schools will offer healthier food choices to students and staff. Getting more fresh fruits and vegetables in schools will help reduce obesity, high blood pressure, diabetes, and other risk factors for heart disease and stroke.
- Teaching CPR in schools. CPR can be the difference between life and death for a loved one. We offer a number of courses and awareness programs to train middle school and high school students in CPR.
Please join me in supporting Chloe and her efforts and make a donation in her name to the American Heart Association! You can donate and help her get credit by using this link: Chloe Schumaker Fundraising Page If you do decide to donate, please be sure to choose "Donate Now" directly from the link above instead of donating from the School's page so we can make sure Chloe gets credit for the donation! Also, a call to any of my "Jersey" friends reading this... Chloe is Dale Kauffman's granddaughter from Margandale Jerseys in Shreve, Ohio!
P.S. I paid with Paypal and it was super fast and easy!
22 February 2013
21 February 2013
I learned tonight that a very special girl named Chloe from the West Holmes School District has dedicated her participation in the American Heart Association's Jump Rope For Heart program to our dear little guy Luke! Chloe, if you read this, we want you to know how special we feel that you chose to jump in Luke's honor! You are one awesome and thoughtful little lady!
20 February 2013
On Tuesday at Luke's 2 month check up, our pediatrician discovered a heart murmur... this was a new issue discovered with Luke's heart and it got me to thinking about congestive heart failure (CHF). It's my understanding that Luke will begin to show symptoms of CHF before he his open heart surgery will be scheduled. I found a great resource from the American Heart Association regarding CHF and wanted to share: Heart Failure in Children and Adolescents.
We don't know yet that this particular murmur is a sign of CHF (the AHA resource doesn't indicate murmurs as a sign), so we will wait for our cardiologist to confirm or deny the idea before getting all worked up, but it's good to go into things with eyes wide open knowing what to expect. One take away from the website above is that while Luke has had multiple echocardiograms or ultrasounds to view the structures of his heart, to my knowledge he's only had one electrocardiogram (EKG) to evaluate heart rhythm and it was performed immediately after birth when he arrived in the NICU. I missed the test because I was still in recovery following the c-section. I'm wondering if this murmur will create a need for him to have an EKG in the near future?
19 February 2013
- Document! I've used this blog to document what's happening with Luke. It helps hold me accountable to learning all I can so I can write about what's going on with a certain level of accuracy. It helps me to keep all of the details straight and to know exactly when something has happened. And it's helped me to communicate with loved ones, helping them to be up to date with his progress. I think it's also helped to keep me from being that annoying person on Facebook writing a status update once per hour. If someone wants to know what's up, they can read the blog, if not, I don't have to be responsible for pushing it down their throat! For the instances that I feel it's appropriate to mention something on Facebook, I can share a short snippet of what's up and attach a link to the blog for folks to read in more detail if they are interested.
- Keep a calendar. After Luke was born, I purchased a Vera Bradly 8 x 5 inch zip up wallet for myself... I specifically chose this particular one because it will fit a generic pocket size calendar inside and I can zip it all together to keep it closed. I can move my wallet and calendar from my purse to my diaper bag to my computer bag, etc and always have our schedule, check book and credit cards handy. I've also copied all of the names, emails and phone numbers of our specialists, therapists, pharmacies, support groups, etc into the back of the calendar into the contacts section so I always have those numbers handy if I need them while out and about.
- Ask questions! Don't understand something? Ask! We are spending lots of money to pay the people who are helping Luke and we are deserving of their time. I try to write questions down as they arise and keep them handy when heading to an appointment. If I had a question while Luke was in the hospital, I learned to write it on the board in his room.... it was a place that his doctors always looked and it helped to keep the questions from fleeing me when they would ask "Do you have any questions?".
- Research! But don't research too much! The internet can be your best source of information and also your worst enemy! When I've found something I want to learn more about, I research it to learn as much as I can, but before self diagnosing our son, I've learned to share the general concept with our doctor and ask them to educate me on how the idea applies (or doesn't apply) to Luke. There are some crazy people out there and they publish some goofy stuff on the internet....
- If you have an instinct about something, don't give up until you're satisfied with either the response you get or have been educated to think differently by someone who has real facts to back up their opinion. If you aren't satisfied, ask someone else. Especially in the hospital, if you feel strongly about something (within reason, of course), ask everyone you can until you get the response you believe you need.... even if that means every nurse that gets assigned to you, every staff doctor or every resident until they approve the test, a support therapy, a medication, etc. If whatever you believe your child needs doesn't work, what are you out? Your pride may be a little hurt, but better safe than sorry and peace of mind is a wonderful thing when your child is sick.
- Stay on top of the people who you are paying to help you... doctors, nurses, secretarys, etc. If you need something, don't rely on them to just take care of it. Call back the next morning if you haven't heard anything. Ask who you are speaking to and write it down. If they don't give you the answer you need, talk to their manager. There is no need to be disrespectful, but your child is #1, don't forget it.
- Find a support group and ask for their advice. I've found a number of closed support groups on Facebook that have helped connect me with moms dealing with the same challenges with children the same age. We live in a rural community and the issues that have presented themselves in our situation aren't really common amongst our relatively small population so it's been great to find people that understand what we're dealing with.
- Love your child! Hug, cuddle, snuggle, play with, talk to, bathe, massage, kiss, and do whatever else you need to do. It works. Let your child know that your love will help them grow, learn and be safe.
- Weight: 10 pounds, 8 ounces
- Length: 21 1/4 inches
- Head Circumference: 36 centimeters
- Pulse Ox: 100%
The rest of the check-up was uneventful other than him detecting an aortic heart murmur. This was the first time anyone has heard a murmur and it could be an indication that Luke's heart and lung function is beginning to change. That possibility is why they decided to check his pulse ox (which was great at 100%) as he wanted to rule out the beginning of congestive heart failure. We have another appointment with Luke's cardiologist scheduled for a month from tomorrow, but our pediatrician went ahead and sent her a note to let her know of his discovery in case she thinks it would be reason to see us sooner. I haven't heard from her yet as to if she thinks it warrants a visit in the interrim.
Luke also received another prescription today for additional physical and occupational therapy. Last week when the home health care nurse was out to administer Luke's Synagis injection, I learned that her company, Personal Touch Nursing offers in home PT and OT. We have gone to a therapy facility in our hometown twice so far and while they've done a fine job with the therapy, it's pretty tough to get out with two small children (Luke's older brother turned 18 months old today) so in-home care would be so much more convenient... and would help to eliminate him coming into contact with more germs... a hot topic for me since he's already had RSV once and we know he needs to be healthy going into surgery once it gets scheduled. Luke is also seeing a physical therapist from the Wayne County Board of Developmental Disabilities once per month.... I think it's great to have two sets of eyes on him and am hoping that our insurance will approve the in-home therapy this week.
Oh, and - Luke has slept 10 hours each of the last two nights! Rock on baby Luke, rock on....
18 February 2013
It was easier coming back to work after having our second child than it was having our first. Not because I love Luke any less than Matthew, but rather because I knew what to expect it to feel like to leave our baby. I also have a lot of trust for our sitter and that helps so very much! Lastly, since I'll be working four 10 hour days, I kept reminding myself that I will get to spend a whole day at home later this week.
Just before lunch, I had a fun phone call from the receptionist at the visitors's entrance who said, "Ms. Taylor, you have had a special delivery! Please come to the front desk to pick up a bouquet of flowers!" I was excited to see who had sent them and walked the entire way up in anticipation of reading the card. It said, "Have a great first day back at work, Love Mom"! Thanks mom, you're the best and the purple roses (my favorite color) are beautiful!
17 February 2013
Possibly it was a blessing in disguise however as I had plans to complete a project today (homemade flash cards for Matthew - I had all of the supplies ready and was even going to laminate and hook them together with a metal ring so we could keep a set here, but also have one for his diaper bag to entertain him when we go out and at the sitters). Instead of crafting, I snuggled with Luke literally all day in the recliner, only putting him down maybe three times since we awoke this morning. In addition, I've watched almost all Downton Abbey's Season 3!
Since I wasn't mobile enough to accomplish anything today, I'm feeling behind this evening as by this point in the night had wanted to get the kid's diaper bags ready for tomorrow and also plan out an outfit for me for the morning as beginning tomorrow I will be working four ten hour days and am hoping to leave here by 6 or 6:15, supposing I can get myself ready and also feed Luke before its time to go.
On another note, Dustin is giving Matthew his bath right now and I can hear them playing together. As I listen on the opposite side of the closed bathroom door, I can visualize what's going on... Matthew squeals and Dustin laughs as he calls him a "crazy kid", probably because he's decided to use the wash cloth as a make believe hat and I can hear Dustin reviewing colors with him as they play with the primary colored foam letters and numbers that stick to the side of the bathtub when they are wet. Finally, Dustin is bribing Matthew with brushing his teeth since he loves the bubblegum flavored toothpaste to get him to agree to get out of the warm water. It can be so easy to let all these little moments, splashes and giggles pass us by through the course of each day... I just wish I could memorize every little experience we have with our boys and never forget all of the excitement and wonder each day brings us. I can't imagine how life could ever get any better than it is right now...
Here is a photo of Luke resting in his swing while I type... Speaking of Luke resting... Over the course of the last three nights, he's slept 7 hours twice and one night he slept 9 hours. He has pretty much slept all day today so I'm hoping that doesn't mean that he decides to be up all night tonight! Oh and one more thing... He has been smiling all weekend! I haven't been quick enough with the camera to capture one yet, but they are so beautiful they melt your heart! Here's to getting one on camera soon!
15 February 2013
Beginning at 5 PM today, I'll have one weekend left before returning to work. I can't believe that full days and entire weeks with our babies is over already... I've chosen to go back to work after only eight weeks in an attempt to save four weeks of FMLA for Luke's open heart surgery if it ends up being scheduled before the end of this year. In addition, I'll have vacation and sick time to take when needed throughout 2013. Over the course of the last two months our lives have been forever changed:
- We greeted a new life, a beautiful boy who has filled an emptiness within me that I didn't even know existed before his arrival. We have learned lots about love from baby Luke, but also from friends, family, acquaintances and people we've only met in passing. We've grown closer as a family and are thriving as we've become more tolerant and accepting of one another.
- We've dealt with medical issues as we've crossed them and I've been struck by comments that we've heard directed to Dustin and I from friends and family that center around "you're so strong", "you're an inspiration" and "I don't know how you do it". I know they have been meant as compliments, but in all honesty, it hasn't been that hard. Luke is our son and the strength that he's given us with his cuddles, coos and even the sleepless nights early on have made it worthwhile... Actually, the other stuff hasn't seemed like such a big deal so far, maybe because we're still in the honeymoon phase with him or because we haven't crossed the big stuff yet like his heart surgery and the developmental delays we've been told to expect, but the real deal is when you're in the moment you just do what you have to do and you just love. I had one of my first mommy milestones with Luke last week when he was in the hospital, on Wednesday when he was the sickest, I forgot that he had Down Syndrome. It was the first time that an entire day passed that I didn't think about it... not that I think about it and am sad, but more like I think about therapy, doctor appointments, tests, etc, etc and all of them seem to have some link to DS. On Wednesday, he was so sick with RSV that all I thought about was what was happening in the moment with the nurses, doctors, respiratory therapists, PCNAs, etc. and it wasn't until Thursday that I remembered that he had DS and realized that I had gone a whole day without thinking of it. I expect as he grows older and our life continues to evolve and our new normal emerges I might have more days where I forget... but not because he's sick, because he's full of life, energy, love and just being a little boy.
- I have a new take on abortion. Before Luke, I'd always considered myself pro-choice. Not because I thought abortion was right, but because I'd always felt like it wasn't my place to judge others and their circumstances. Since learning prenatally that Luke would have DS, I've read that somewhere around 90% of all pregnancies with a prenatal diagnosis of DS end in abortion. That's 9 out of 10 lives. So sad. One of the coolest things about Luke is that he survived in utero on his own (upwards of 75% of embryos with chromosomal anomalies miscarry and less than 25% of them actually survive until birth because up to 10% are stillborn), which proves to me that he is supposed to be here and a part of our family. He is part of God's plan. I still don't believe in judging others, but I would love to have an opportunity at some point to counsel another mother who receives a prenatal diagnosis. I would love to share with her that way that Luke has changed us and how his presence has filled us with hope and love.
- Other ways we've changed: I've figured out how to shave 15 additional minutes off of my morning routine, the home we purchased last fall and moved into before Thanksgiving still isn't completely decorated and somehow.. I'm okay with that for now. I've developed a desire to cook more elaborate and different types of meals and desserts than I did before Luke (I think it may end up becoming a method of escape for me at some point, if I can find the time to dedicate to it). Finding a deal has become less important - I'm growing happier with just getting the things we really want and need, but fewer of them. Friendships have become more important to me than ever and I would love to re-pay all of the kindness that has been shared with us from our family and friends.
Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.
The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. (http://www.uky.edu/DSAging/what.htm)
The Medical Genetics department at The Cleveland Clinic emailed me this photo of Luke's DNA today, via his final Karyotype study, showing the three copies of chromosome # 21. It was confirmed that Luke has the most common type of T21, "Nondisjunction". Pretty cool to be able to take a look at one of his actual cells!
As I was researching information on Down Syndrome today, I came across this website stating current clinical trials seeking individuals with DS. I'm including the link for future reference: clinicaltrials.gov.
14 February 2013
This morning we had a home health care nurse come to our home to administer Luke's second Synagis injection to help prevent RSV. After all of the phone calls I've had to make over the last month to get this lined up, I felt so relieved to finally get this taken care of!!
PS: During the nurse's exam Luke weighed 9 pounds 12 ounces.
Today is Valentine's Day 2013 and this coming Saturday (3 days from today) marks the beginning of the 8th week of Luke's life. I was shocked when I woke up at 6:55 this morning, noticed a little light coming in through the window and realized that I hadn't been up with Luke overnight! He was pretty fussy last evening and was awake from around 6:30 until 10:50. He fell asleep towards the end of the show Nashville and I stayed awake and watched an episode of Downtime Abbey just so I could hold our peaceful guy a little longer. I laid him in his pack and play a little after midnight and he slept just over 7 hours and he's beginning to wake up now!
Below is a picture of what I woke up to this morning... A sleeping baby!
13 February 2013
Laryngomalacia is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.
For most infants, laryngomalacia is not a serious condition — they have noisy breathing, but are able to eat and grow. For these infants, laryngomalacia will resolve without surgery by the time they are 18 to 20 months old. However, a small percentage of babies with laryngomalacia do struggle with breathing, eating and gaining weight.
As of now Luke has been gaining weight beautifully and the ENT didn't appear to be overly concerned. It is suspected that the low muscle tone associated with Down Syndrome is to blame for his "floppy airway" and hopefully it will resolve itself as he grows. We are going back for a follow up in 6 weeks.
09 February 2013
I haven't posted since Wednesday, so I thought it would be a good idea to share what's transpired since then...
Thursday morning was pretty emotional for me as I struggled to communicate with one of the residents on our floor. This particular doctor seemed a bit out of touch with what was going on with Luke and during rounds he insisted that it was time to take him off of the blow by oxygen. Overnight his needs had been minimal, however he had been bouncing from an oxygen saturation in the mid 80's to the mid 90's, so I didn't feel like he was ready to be totally off of the blow by as we had previously discussed him needing to consistently be in the 90's while breathing room air before we could go home. This doctor also made me feel like he thought I just sat in Luke's room fixated on the monitor that tracked his pulse ox 24/7, overreacting each time it dropped below 90. Not true. As a parent, I'm entitled to understand my child's medical issues and I felt like he was speaking down to me and I also felt like Luke still needed the oxygen, which he apparently didn't agree with. It shouldn't come as a surprise I was a bit ticked off. We agreed that they would complete two "spot" checks during the day when they did his vitals and based on the numbers, we would go from there (although this doctor spoke like he thought we would be heading home by the end of the afternoon). Later in the day, during his second vital check, his pulse ox was in the low to mid 80's, requiring he be put back on the blow by, thus securing us another night in the hospital. Also that afternoon, we were blessed to have a great visit with our pastor!
Friday morning Luke was looking much, much better with a pulse ox ranging from the high 80's to the high 90's. Also his chest retractions had lessened some, making them much more like the baseline retractions we had been seeing before we were admitted to the hospital. With conversations of us being discharged around noon, I decided to take a load of clothes down to the washing machine in the Ronald McDonald Family Center so I didn't have to pack up clothes covered in Luke's spit up. Upon arriving both washing machines were full of clothes, but one of them was finished with the clothes just waiting to be moved to the dryer. I didn't want to mess with the clothes so I went back to our room for another half hour and when I went back, the clothes were still in the washer. I had been losing patience over the last day as I had been annoyed with our doctor and was irritated at whomever was so rude as to not take care of their own laundry. Embarrassingly, I made gloves out of plastic grocery bags in the room and decided to transfer the clothes on my own so I could get my clothes started. As I was mid transfer, a guy walked in and caught me transferring the clothes. They belonged to his daughter. I felt sheepish. I think he said she was 11 or 12 and as we talked, I learned that she had mitochondrial disease and had lots of medical complexities, including the mental capacity of a 3-6 month old. Apparently that morning, he had come to the hospital to find her diaper hadn't been changed overnight and she had wet through her clothes, which were what he had been washing. What a powerful lesson for me to have learned... I felt like a jerk. No matter how bad you think things are in your life, someone always has it worse. I learned that his daughters name is Faith and I prayed for her and her family for a long time last night. I also prayed for myself, that I would be able to see past my own selfish needs and have compassion for others. Also last night, I said a prayer for a baby girl named Bryleigh whose family lives in Florida. Bryleigh is only a few weeks older than Luke and also has Down Syndrome and the same heart defect. I've become friends with Bryleigh's mom on Facebook and the sweet baby girl had her open heart surgery yesterday morning. Sounds like it went well and she's beginning down the road to recovery. So back to getting discharged... Once we got home it was great to see Matthew and Dustin's mom who watched Matthew while Dustin came to get us said that Matthew squealed and got excited when he saw us through the sliding glass door! It was great to get home... I was exhausted and slept much of the evening and through the night too with the exception of getting up to feed the baby.
Today we had a follow up with Luke's pediatrician, he is still dealing with the congestion and nasal secretions but is otherwise doing well!
Thank you all for your prayers and concern for our family, we are so truly blessed on this earth with wonderful family and friends and we love you all!
06 February 2013
Yay for Luke!!
He's been feeding well over the course of the last day and a half and we are going to be removing his feeding tube this morning, yay! Doing the deep suctioning (nt) treatments that have been going down into his throat have really seemed to help him get rid of the secretions, thus helping him to breathe better through his nose while nursing. I'm thankful that we seem to have gotten past the sluggish feeding... I was pretty nervous about the potential for him to become dehydrated and need an IV.
I've been reading a lot about RSV and have learned that it often turns into an ear infection once the bronchial distress has passed. Considering that Luke is more susceptible to ear infections because of the low tone associated with Down Syndrome, I've asked for him to have an ear exam today to determine if fluid is starting to build in his ears so we can potentially get ahead of the infection and know to expect it so we can get him on antibiotics if an infection shows up and becomes necessary.
We might be having the echocardiogram today if they can get it fit into the schedule with cardiology. I know that the doctor was going to make sure it gets ordered, but I haven't heard anything more since rounds were completed earlier today.
Lastly, I've been feeling bad for Luke not only because he's sick, but also because he's spent the last five days laying on his back in his crib without much mental or physical stimulation. Now that he seems to be breathing better and hopefully will have more awake and alert time today, I think he might be ready for some fun and have asked that they bring in a mobile or something interesting to look at when he's awake and alert. I'm also going to try some of his therapy exercises and tummy time today too.
I've had a lot of Facebook and text messages over the last few days. Thank you to everyone for keeping us in your thoughts and prayers, we really appreciate it! The love and support we've felt has been really amazing and has really helped me get through that last few days as I've sat here worried about our little guy. Hope you're all having a great week!
05 February 2013
Here are a few pics of the little guy this afternoon:
Luke continues to get a little worse... Although the nurses and doctors keep reminding me its expected and he will hopefully turn the corner today or tomorrow. Today is "Day 4" and overnight we had to begin using Luke's feeding tube as he had some difficulty with feeding and essentially getting comfortable enough after a feeding to go to sleep. Respiratory also was in twice overnight to do deep suctioning treatments where they put a tube through his nose and into his throat to suction out any mucous that might be sitting down there. The last time they did the treatment, it really helped to improve his oxygen saturation although it must be really uncomfortable because Luke really hates it and screamed both times. His eyes are red and watery and he seems more restless than before. Now that I've said that though, I just looked up at him and noticed that he's just fallen asleep.
Hope the poor guy gets better soon... It's heart wrenching to watch Luke go through this. One nurse did remind me though that this will be a great way for Luke to build some of his own immunity, although its certainly more stressful than it would be otherwise.
Okay, so the doctors were just in for rounds and they didn't have anything new or surprising to share other than one of the residents described Luke's left lung as sounding "coarse"... This is the first I've heard anyone describe his lungs that way, so I'm going to follow up with his nurse later on this morning to ask her what that really means. Yesterday Luke's cardiologist mentioned that she wanted an echo completed before we are discharged and apparently it was ordered and its in the system so we don't have to worry about it being missed before we are released. Things seem to be pretty controlled and Luke is currently on .40 liters of oxygen... He needs to be off the oxygen and on room air for us to begin discussing being discharged.... Here's to hoping he's feeling better soon.
Thank you to Pat Winkleman for the beautiful blanket she made for Luke (and for the one she made for Matthew too). We brought it with us when we came up here on Saturday night and its been really nice to have something handmade from home! I used it on Saturday night when I needed an extra blanket to sleep since Luke had on a warm sleeper and one of our Halo Sleep Sacks (during those few precious hours that I was able to rest) and Luke has been using it for at least the last 30 hours or so.... All of the nurses have been giving us compliments on how nice and soft it is! I'm including a pic of him snuggled up with it...
Note to self: when the nurses placed the ng tube yesterday, they initially tried placing it in Luke's left nostril and had quite a bit of difficulty and ended up having to use the right side. When we meet with the Ear, Nose and Throat doctor next week, I want to ask him to take a good look at the left sided structures to make sure there isn't some sort of physical blockage that might normally be restricting some of his breathing and causing his baseline retractions.
04 February 2013
Before lunch, our cardiologist came in to check on Luke. I'd been concerned with potential implications RSV could have on his heart and/or lungs and after receiving a so so response from one of the resident nurses (who supposedly called someone in cardiology to make sure things were okay), I decided to specifically call Luke's cardiologist and leave a message telling her what was up and within 30 minutes she was in his room to take a peek at him. She felt okay with the way he looked and said she'd like to complete an echo on him once the virus has run its course and we're close to being discharged. I felt much better after she looked at him and I feel like I can rest a little easier today. She is planning to stop back over in the morning to see him again.
Also, I continue to get the run around on getting the Synagis shot for Luke. The shot is very expensive and it sounds like insurance companies in general are very selective in how they approve the shot. We are finally approved, but now that we're in the hospital, we won't be home for a home health care nurse to come to our house to administer the shot. I am currently waiting for a hospital case worker to come visit us to help me figure out if we can have the medication sent to the clinic and have a nurse here give the shot to Luke. The conversation now is centering around potential legal issues and inpatient / outpatient rules for an inpatient nurse to give an outpatient medication. The worst part is that Luke needs the shot and there seem to have been so many hoops for us to jump through in getting it for him. I will continue to stay on top of this and follow up.
Here are a few pics of Luke from this afternoon...
Luke seems be be getting a little worse.... His coughs are more disruptive and when combined with his congestion, kept him from eating easily at his 11 pm feeding last night. It was a chore for me to get him to eat although we eventually got through the feeding and he did well at his next feeding at 3:50. His vitals have included his heart rate generally ranging from 130 to 160 and for the most part his oxygen saturation has been above 90, although they did have to increase his oxygen flow from .10 liters to .25 liters because his respiration rate had been ranging from 80 to 90 breaths per minute, higher than the guideline of 60 breaths per minute. Now that they've increased his oxygen flow, his respiration rate is back down between 40 and 50 breaths per minute.
Last night we should have begun the infamous "Day 3" that we keep hearing is when the symptoms and distress from the virus generally peak. Apparently between now and "Day 5" is when this is supposed to be the worst and he should begin to improve after that if he follows the typical trend with the virus.
If he isn't able to maintain a normal respiration rate with the oxygen flow they have here in the general pediatric unit, which is up to 1 liter (and now he is on .25 liters) we will have to be moved to the pediatric icu, so please pray that his respiration rate doesn't exceed the capabilities here which would mean that his condition is worsening. I had our nurse teach me how to take his respiration rate (it's pretty easy... I'm [almost] embarrassed that I didn't know how to do it other than the fact that I've never had to think about tracking it on someone). I plan to monitor his respiration rate on my own so I can make sure I'm taking an active role in consulting on his need for oxygen with the nurses and folks from the respiratory unit.
One of the residents was just in to complete a general exam of Luke. His lungs still sound clear, although she mentioned that she can hear his nasal congestion all the way down in his lungs and his belly too. I've been hot and heavy on the staff here to consult with his cardiology team to make sure his heart isn't at risk because of how hard he's working in response to the virus and she shared that they did talk with cardiology yesterday and they aren't concerned unless he's turning blue and having other clinical symptoms, although she didn't share what else they have indicated as red flags. I think I'm still going to stay on top of that today just because I feel uneasy about him needing to work so hard.
Rounds are supposed to be around 9:30, I'll update later once I have time to sit down after they're in to talk about Luke.
03 February 2013
We haven't learned much new this afternoon and Luke has spent much of the day sleeping. I think his cough might be getting worse, but on the other hand his breathing seems better especially because of the nurses suctioning the mucous from his nasal passages. He is still eating pretty good and hopefully that continues so he doesn't end up needing an IV.
Dustin went home tonight to spend the evening and overnight hours with Matthew so tonight is my first time ever being in a hospital by myself (obviously Luke is here too, but this is my first time without another adult). For now things seem pretty controlled so I'm feeling pretty confident at the moment... Hopefully that continues.
Thanks for your concern and continued prayers!
As of this morning, he is still eating well and isn't showing signs of dehydration, which would be a red flag and would require him to be put on IV fluid so hopefully that doesn't happen. They have a pretty powerful suctioning device that beats a bulb syringe hands down and they are using it to remove mucous and similar secretions from his nasal passages. Also this morning he began de-sating some so they put him on oxygen via a nose canula, which has helped him to stay oxygenated.
Apparently RSV peaks between symptom days 3 and 7, which is a pretty big range. Today is day 3 for Luke so hopefully we will have a sense today or tomorrow of how severe the virus will hit him.
I'll update things here if Luke's symptoms get worse or as we learn more from our doctors. In the meantime, please keep him in your prayers!
01 February 2013
Today, we had visitors from the board of DD, one of them being our future physical therapist (who I loved by the way). We did some enrollment paperwork and they completed an evaluation of Luke, who they said was doing very well - yay! I was so proud! She specially commented on his neck and trunk strength and praised the ways we are working with him and how we have already incorporated some therapy activities into his daily routine, which made me feel really good!! It's different than how we cared for Matthew, in that I feel like I'm much more intentional with how things are completed with his care and it felt really rewarding that someone seemed to notice that we are taking an active role in helping him... It also was so awesome to receive some good news with his physical progress! Lastly, we spent more time just visiting and getting to know each other. She's coming back in a few weeks for another session!
I already have another session scheduled with the private provider we saw last month for both physical and occupational therapy for one evening next week. I'm looking forward to seeing what they have to say and I'm wondering if it will be best to continue with both versions of therapy? I'm kind of thinking it would be nice if they complemented each other and we could continue with both, but I guess we will think on it and decide later.
I finally was able to get some traction with getting his RSV shot scheduled and apparently the home care nurse is supposed to be calling me this afternoon to get it scheduled for either tomorrow or Sunday.
PS - today Luke weighed 9 pounds, 8 ounces! I can't believe that this kid has grown one pound a week for the last two weeks. It seems too good to be true and since that usually means it is, I am skeptical of his gain and am fearful that its not true weight gain, but rather fluid building up around his heart or lungs. This is on my list of questions and concerns for our visit with the cardiologist next week.
"Perfectly Normal" isn't a diagnosis we've gotten real often over the last few months. Until today! As a newborn, Luke failed his hearing screening for both ears, not just once but twice. This morning we had a follow up full blown hearing exam with an audiologist within the Cleveland Clinic's Ear, Nose and Throat (ENT) Center at main campus. The testing took a long time, mostly because Luke needed to sleep soundly for the entire test, which meant that I had to feed him at the beginning of the appointment and then rock him to sleep and cuddle him throughout the exam to keep him in a deep sleep. When the doctor shared that his hearing was "Perfectly Normal" I actually cried tears of relief! I had suspected he had some hearing since I've noticed him startle at loud sounds over the last few weeks, but obviously I couldn't tell if he might have some sort of partial loss or if he might be hearing from only one ear. The doctor did note that he missed one of the pitches in his left ear during the exam, but since it wasn't a trend, she wasn't concerned and attributed it to the equipment being placed incorrectly at the time the noise was sounded.
Following our visit with audiology, we had lunch in the cafeteria and ran into one of our NICU nurses, Audrey... We had her most of the time we were admitted and loved her so it was neat to run into her and have a chance to say hi!
We ended the day with an appointment with the Medical Genetics department. My least favorite of all the different disciplines of medicine we've met with over the last 6 months or so... Again we were told of all of the problems they "predict" Luke will experience. Today's list included painful recurrent ear infections that will keep our household up all hours of the night because of crying, with the highly likely result of him having tubes eventually placed, potential severe constipation (and I felt like they were telling me that my breasted baby who doesn't have a poopy diaper every day is constipated... my understanding from breastfeeding Matthew is that it's normal for some breasted babies to not poop everyday because momma's milk is designed so perfectly for baby that baby's body is able to utilize every ounce for growth and maintenance, thus not having any waste to get rid of), we also "learned" that he will have gastrointestinal esophageal reflux disease or GERD... not to be confused with normal "spitting up" and lastly that he might likely develop Naso-lacrumental Duct Obstruction (not 100% on the spelling of that one) which is an obstruction of the tear ducts in your eyes that causes painful hardness and swelling of the tear ducts... All of these things because he has Down Syndrome... Last time we met with them, we "learned" that Luke would have a 75% chance of hearing loss, which I guess could develop over time, but for today our baby boy's hearing was "Perfectly Normal"!
I can't live in fear of what "might" happen. It's not mentally healthy for any of us to do that. I received a piece of advice from a mother in my area who has a pre-teenaged daughter with down syndrome early on with our prenatal diagnosis and it was to take things "one day at a time". In addition my mom always tells me to not "borrow trouble"... Our Luke is one of our family's special gifts... To heck with those genetics people, I appreciate knowing that we might face some obstacles as our future unfolds.. But seriously, who on this earth doesn't have challenges ahead of them?
PS - I should also mention that we did some bloodwork to verify Luke's white blood cell count today since leukemia is a risk factor for individuals with Down Syndrome and also re-tested his thyroid function as its more common for those with Down syndrome to have a hypo active thyroid.