Tonsils? Gone. Lydia? Home.

 

"Sock Hands" during Pre-Op boredom.

Lydia's Gtube Site Revision went well.  The general surgeon cauterized some granulation tissue and resized her button.  That should be more comfortable for Lydia.

"Don't bother me" during Pre-Op Magnadoodling.

Lydia's tonsils were reportedly huge, as were her adenoids.  Dr. Arganbright removed her tonsils and 25% of her adenoids directly behind her nose.  Maybe she'll quit mouth breathing, snoring and holding her breath at night.

"Counting Ceiling Tiles" during Pre-Op boredom.

Lydia's ear tubes were both in her ears but had come out of place.  Both were replaced today.  No fluid or infection today, just waxy ears and new tubes.  

"Coco Poses" during Pre-Op Coco watching.

Lydia's trach site revision was also completed by Dr. Arganbright.  She essentially roughed up the skin where her trach used to be.  It should heal up and close the hole that was left after decannulation.

"Nose Trumpet"  I'm not kidding, that's what it's called.

Lydia had a rough patch in recovery.  She wouldn't come off oxygen and needed this green nose intubation due to the swelling behind her nose.   While in recovery and waking up they typically don't have the parents come in.  The nurse called us to see what might calm her down.  I said nursery rhymes and Moana, so they played her music on an ipad.  Finally they let me come to recovery, I crawled in bed with her and we watched trumpet videos on YouTube.  Things got better. 

"What have you done to me?"

The nose trumpet fell out later in the evening and Lydia didn't need any oxygen overnight.  We were admitted and placed in a room around 5:30pm.  She was pretty cranky all night and fell asleep around 9:30 or 9:45.  I fell asleep just an hour later.

"Mom, I'm up!"

5:15am.  Get up Mom.  Get in bed with me Mom.  Let's watch Moana Mom.  Mom!  Also, she refuses to wear pants.  She refuses to be covered up.  The only things she complains about are the IV in her ankle that is not being used and the pulse ox probe on her finger.  She thinks it's a boo boo and will not use that finger or hand.  Uh, doesn't your throat hurt? 

"Double Dipping"

Lydia is just chilling out in bed with a tablet and the tv on.  Currently scrolling pictures of herself on the tablet and watching Frozen, again.  We've watched Coco once, Frozen twice and Moana twice.  I wonder if we'll get round two of Coco in before leaving today.

"Hallway Legos"

We're free, by word of mouth, not on paper.  We checked out with ENT, GI and General Surgery.  Just need to get our meds and sign the discharge papers.  Meds to Beds, running late since 2015, at least.

"Killing Time"

Mama works across the street from CMH so it was convenient for her to come by to pick us up while Daddy had an appointment.  We loaded up and left the building around 11:45 am.  Lydia was alseep within 10 minutes and took a nice nap.  

"Wash that hospital outta my hair."

I think the bath water had sugar in it that seeped into Lydia through osmosis because she's turned into a typical bouncy wild three year old.  The pain meds must be doing their job.  We're going to calm down for a movie and hit the hay.  Lydia is a quiet sleeper now, which is completely foreign to us.  I think I might have to put the pulse ox probe on her tonight to make sure I can hear something.

Thanks for reading this far!

  

What a week. Happy to leave it in the past.

Starting last Thursday night, the 5th and lasting until Saturday around noon, Lydia had a fever of 99 to 100 axillary.  She wasn't tolerating her food but was keeping water and Pedialyte down.  She was very lethargic and napped for hours.  Not typical Lydia behavior at all.  Then Sunday was looking up!  

Monday the 9th, Lydia began to show all the same symptoms and started to complain about her Mini button or gtube hurting, that’s the way we feed her.  By Monday night she was crying, wincing and grinding her teeth in pain every time we fed her or gave her water.  Heart breaking!  After way too many emails and phone calls with GI, pediatrician and the ER, it was determined that Lydia's Mini button or gtube stoma or interior of her stomach was infected.  We started antibiotics Tuesday night and her pain is now gone.  But that wasn’t all.  

Tuesday night and into the morning Lydia developed a rash.  This rash is exactly like the measles rash and we are assured it is only a normal and typical reaction to the MMR vaccine that she received 12 days before.  The doctor cautioned us that this could appear in 10-14 days.  Right on time. It is not contagious…I’ve asked a million times and it’s not contagious but I still won’t take her out in public until it’s gone because I don’t want to be that mother on the news that took her measle-rashed kid to Hy-Vee!  It almost cleared up in two days, like they said it would, but how scary.  Geesh.  Lydia had to miss speech and gym, two of her favorite things.

As you can see in the pictures, things are entirely back to normal.  

Double Rainbows over our house!  Winning!

Monster Truck Jam bucket = Marching Band Hat

Bad Happy Birthday Great Papa Selfie Stick Photo.  So bad it's good.

This is how Dad gets Lydia ready for the pool.  Cheeks out!

Did we forget to tell you Happy 4th of July?

4th of July Pinwheels from Melinda!

Matching Whiskey Hats!

Thanks for our fireworks show, Sam! 

Ready to party!

The best way to spend the 4th of July!

June Medical Update

Cardiology: On June 6th we saw Dr. Forsha instead of Dr. Shah, just a one time substitute.  All of Lydia's repairs look good and are functioning well.  She still has and always will have a murmur on her Left Ventricular Outflow Tract.  Her repairs are a little oversize so that as she grows and her heart grows, she grows into the repairs.  Her heart muscle is still a little big from how hard it was overworked for the first 9 months of her life.  This will not necessarily go down in size, rather it won't continue to grow and her heart will catch up to it.  In the next couple years, we will consider a CT/MRI to better visualize her IAA repair.  When she is older we will discuss sports restrictions, but for now she has none.  Lydia is cleared for typical anesthesia, nothing fancy due to her heart but cardiac anesthesia is still contacted when Lydia is in the operating room.  She is also cleared to see the dentist without any pre-meds.  #love4lydia #chdwarrior

Endocrine: On June 6th we saw Dr. Feldt's nurse practitioner Terri Luetjen.  She was very happy with Lydia's growth, now that she is back on the growth chart.  Weight is at the 10th percentile. Height today is at the 1.7 percentile. She has grown 6.3 cm over the past year.  Lydia will continue to have her calcium, thyroid and IGF-1 checked annually.  All are in the normal range but we will continue to monitor growth due to the increase chance that Lydia will be small in stature due to the 22q11 deletion.  #22q11 #growinglikeashortweed

Immunology:  On June 6th we saw Dr. Raje's nurse practitioner Brenda Snyder and we all happy danced that Lydia can now receive her live vaccines!  Lydia has had no illnesses other than upper respiratory infections and not hospitalizations because of them, so in Immunology's eyes she is super. #happydance #vaccines  #mmrshots

Gastroenterology: Dr. Cocjin was at a conference.  Sad.  I enjoy visiting with him.  Next time! #tubie #tummytalk #poop

Ear, Nose, Throat: Dr. Arganbright was on her honeymoon in Italy.  Yay for her!  We'll see her next on July 24th for Lydia's Tonsillectomy.  #favoritedoctor

Speech Therapy: We saw Anne at Children's Therapy Services on June 7 for our weekly visit.  Lydia is doing so well with her speech and is a sound machine.  Talking, singing, counting, spelling.  It's so much fun and I just love listening to her, especially when she's avoiding bedtime.  We are listening for glottal stops and airy or nasal sounds through her nose.  We can better assess post-tonsils.  #cts #anneisawesome #opah #nonono

Tiny Tots Gym: Lydia was finally able to go to Blue Valley Rec for Tiny Tots gym.  The measles scare kept us away for a few months.  She loves going to gym and gets so excited.  She tumbles and climbs, jumps and spins.  Her favorite thing is the trampoline and she will beeline for it when you're not looking and when she's not supposed to be on it!  #tinytots #gymnastics #jumping

Summer Reading: We took the day off as an opportunity to go to the Central Library and pick up Lydia's Summer Reading log and get her free book.  She picked out Pete the Cat!  We played a bit in the 6 by 6 Ready to Read activity area and said hi to all our librarian friends.  #jocolibrary #6by6 #books  #summerreading

Infant Toddler Services:  Carrie & Dana came for their last in home visit on June 12th.  I'm really going to miss seeing them every month.  They weren't just there for Lydia, they were there for me and became friends.  Luckily, we'll continue seeing Dana every couple of months for Lydia's nutrition, just privately and not through ITS anymore.  #itsjc #helpedhercrawl  #helpedherwalk #signlanguage

TA Waiver: Kipp came for an in home assessment of Lydia and whether or not she continues to qualify for the technology assistance waiver.  Due to her g-tube and ankle-foot orthosis she does still qualify.  This means that when Lydia start pre-school 2 days a week we'll still have our nurse, Stacey, 2 days a week and grandma keeps her on Thursdays.  Just days after Kipp's visit I found out that the State of KS did not contract with Amerigroup for Kancare next year and we will have to switch secondary insurance providers for Lydia.  #hassle #willmisswanda #amerigroup

Home Vent:  Lydia delivered tons of toys to the Home Vent clinic for graduation gifts for when little kids get their trachs out.  Thank you again for all the donations!  They were so thankful and happy to see how well Lydia is doing.  We saw Kelly, Sarah, Addie, Dr. Winston and Dr. Lachica.  #happyhearts #memories #nomoretrach

Neurological & Behavioral Development: Lydia spent about 3 hours with Dr. Willen and assistant on June 21st.  This is a nerve racking appointment because Lydia "plays" while she is being assessed and rated on skills that are not telling by watching.  Every time I think she is succeeding and Dr. Willen is scribbling I think "oh what could be wrong?" or "should she know how to do that?"  Lydia is followed by Dr. Willen due to her heard defect and will be seen by her annually.  Overall, Lydia is at or above average on all things tested.  The two main concerns and things we will watch as she starts pre-school and advances are low muscle tone and constant movement.  The low muscle tone is common for 22q11 kiddos and the constant movement is common for CHD kiddos.  Lydia may not have the option of competitive sports because of the her heart and the low muscle tone.  She may be clumsier than other kids and notice a difference on the playground or in gym.  For now we'll keep her in gymnastics and swimming, maybe some soccer this fall.  I am actively working on accepting this and celebrating all the other amazing things she will do.  The tears are coming now, so let's move on.  The constant movement may or may not develop into a diagnosis.  It could just be that Lydia will need options in the classroom like balls to sit on or kick bands.  These things are very commonplace in schools these days, so that's nice to know.  #smartypants #clumsy #sharpasatack  

Run for Little Hearts:  Originally we were not supposed to attend Run for Little Hearts this year but we signed up to get our awesome t-shirts anyway.  Turns out our plans changed so I was able to go with my mom and Lydia to walk the 5k.  We saw a lot of our heart family friends and had a really good hot time.  #5k  #norunningthisyear #oz #chdbabies #love4lydia

Plastic Surgery Clinic: On June 28th we showed up for what was supposed to be a quick 30 minute check in with Dr. Goldstein and it turned out we were scheduled for a full clinic visit. Oops.  After I questioningly greeted every specialist that walked into the room, one finally listened when I told her we aren't seen in this clinic and were just here for the doctor.  In true Dr. Goldstein fashion, he was taking his sweet time and didn't get around to us before we had to leave.  His physician's assistant saw us and let us go on our merry way to the next appointment.  Guess what?  All this and no one even looked in her mouth at her palate repair!  #wtf  #ugh

Dentist: Dr. Parks was our next visit on June 28th.  Best office in town.  There is a climbing gym, video game station and a boat in his waiting room!  When you go back to the "office" for your visit you get to play with tons of toys and tablets, plus you get to brush a shark's teeth!  The hygienists and Dr. Parks are unbelievable at what they do.  Lydia did fantastic, letting them brush and count her teeth and even polish and and treat them with fluoride. She got to wear the pineapple glasses and sit with Spider man while she saw the dentist.  #brusho #teeth #openwide

3 Year Old Check Up: Dr. Davis completed our very long day on June 28th.  I don't remember how I found her but I'm so glad I did.  She's seen it all and is very connected to CMH.  I bring my list of updates and she brings her list of reports from the doctor visits Lydia has already seen throughout the month.  She is so familiar with her chart and that makes me very happy.  We are working on getting Lydia off some of her meds, most of which are maintenance type meds for her gut motility.  #byebyemeds #onthegrowthchart 

Optometrist: Lydia's 4th eye doctor appointment and her 2nd with Dr. Kennard was on July 3rd.  Lydia and Dr. Kennard have pigs in common so they get a long great.  Lydia brings her pig and Dr. Kennard has pigs on the wall, pigs that move, and a pig light she wears around her neck.  Needless to say they hit it off.  Lydia's eyes are stable so we don't have to return until she is five! #dilated #shades #piggiesforlife

Valley View:  Lydia and I visited her preschool on July 3rd so that we could educate the staff on her g tube and eating routine.  She was immediately curious and started playing, excited by the playgrounds and exploring the hallways.  I think she's going to have a great time! #zebraclassroom #preschool #3yearolds

Pre-Admissions Testing: We wrapped up our appointment extravaganza at CMH downtown yesterday afternoon.  Lydia is ready to go and in good shape for her combo surgery on July 24th.  She will have an approximately 2.5 hour procedure, close to 4 hours with the pre and post op.  Dr. Arganbright will remove Lydia's tonsils and upper adenoids, check and potentially replace her ear tubes, and revise her tracheostomy stoma that never fully closed after decannulation.  Another general surgeon will remove the granulation tissue around her gtube, essentially removing one small ridge of extra tissue growth that will allow her button to lay flat against her tummy again.  #pat #g2g #takemytonsils

Whew.  Later.