Happy Easter!

Our Big Black Box

Lydia sleeps with a pulse oximeter to measure her oxygen saturation and pulse.  During the night on Tuesday and Wednesday her oxygen numbers were dropping into the 80s.  She's supposed to be 92 or above and usually is 94 and above.  We checked the equipment and the probe, thinking it may be out of whack, but nope, it was Lydia.  As soon as she went on the oxygen her numbers shot up.  

The home vent team that follows her at CMH said to keep her on oxygen until she can keep her levels up herself again.  They also put her on albuterol, an inhaled broncodilator, and QVar, an inhaled steroid.  Since Lydia has a trach, we have a contraption called a spacer that makes giving inhaled meds super easy.  

So what is causing all of this?  It could be a relapse from the pneumonia.  It could be allergies because the kid has some serious mucus.  It could be a combination.  She's not on any allergy/sinus meds because she's a heart baby with a trach.  Baby - supposedly no allergies.  Heart Baby - don't want to speed her heart up with the meds.  Heart Baby with a trach - don't want to dry her out too much because she needs moisture with the trach.  It's not that we can't ever have allergy/sinus meds, just not yet.

This is the oxygen concentrator and the little IV pole and feeding pump.

This is the carrot cake I made for Easter Brunch tomorrow. :-)

 

Surgery Follow Up Visit

Mom and I took the day off and accompanied Lydia to 3 follow up visits after surgery and discharge.  We stopped into the ultra crowded waiting room in the Radiology clinic for a chest x-ray.  Woke Lydia up, took a few pictures and off we went to the Cardiology Clinic.  We spent almost 2 hours there since Mondays are apparently busy echo days.  The nurse practitioner said her incision is healing nicely and the x-ray and echo looked good.  She then said that we could leave because the Cardiologist, I don't even know who was in clinic today, was just getting around to looking at Lydia's images.  She'll call if anything was not good.  Most days I wouldn't stand for that and I'd want all the details, but we'll be seeing Dr. Shah on April 6th and he'll give me all the details then. Plus, we had an appointment in 45 minutes and were starving.  We had lunch in the CMH cafeteria, which really isn't as bad as Dan and my Dad say it is.  We finished up in the Special Care - Home Vent clinic where Lydia steals the show and gets all the loving.  We scored a free book in the waiting room.  We were only going to get a flimsy little picture book, but after I told the lady I was a librarian she let me pick out a board book.  We got Olivia.  Lydia played with Danielle, Addie, Joan and Dr. Lachica.  Lydia is just under 26 inches, putting her in the 3rd percentile for height.  Lydia is 15 pounds 15 ounces, putting her in the 12th percentile for weight.  Yay!  Below are some pictures from Cardiology and Special Care clinics, Mom's hammin' for the cam, Lydia could care less.  

Run for LITTLE Hearts

Run for LITTLE Hearts is a 5k walk/run event on Sunday, May 1st in Lee's Summit.  I have started a team to show support for Lydia and help raise awareness for CHD.

Congenital Heart Defects are among the most common birth defects and are the leading cause of birth defect related deaths. Run for LITTLE hearts is a local organization that supports hundreds of families in the metro area affected by CHD.  They provide funding for an inpatient fund at Children's Mercy, care packages for children undergoing open heart surgery, support meetings for parents and more.

Lydia was diagnosed in utero with a CHD.  She had surgery at 11 days old to repair an interrupted aortic arch, VSD and ASD.   She had a second surgery at 8 months and 18 days old to repair subaortic stenosis.

Please join us as a virtual or an in person participant on Sunday, May 1st.  Lydia's team name is Love 4 Lydia and we have over 40 participants signed up.  Help us spread awareness about CHD and come have a good time or run virtually from your couch!

To find out more about the event go to: runforlittlehearts.com

To sign up for Lydia's team, Love 4 Lydia, go to: www.eventbrite.com/teams/1457313

Thank you to all of you who are on our team:  Kinsley Daniel Erica John Donna Becky Hope AJ Riley Jamie Kim Marcia Ronnie Chase Bethany Ashlyn Camille Chad Michelle Leslie Dennis Gabriella Harrison Victoria Kelsey Mary Beth Karsen Olivia Amy Elena Brian Jen Leah Jillian Angie Ian Nick Brian Emilie Dorian Steven Ken Pam

Recovery Day 9 and 10

Apologies for skipping yesterday!

No need to dwell on that because we're heading home! Like now. I'm writing this on the drive home.

Yay!!! Yay Lydia!!! #love4lydia

Recovery Day 8

Finally, after a couple days wait, we're out of the PICU and on the 4th floor.  The hospital is so full!  Darn flu bugs and RSV.

Wait?  What am I saying?  We can't stand the 4th floor.  

The PICU is lovely, secure, well staffed, organized, controlled chaos probably.  Great attentive nurses and you can find a doctor whenever you want.  Lydia's favorite place to be a diva.  

The 4th floor is just chaos.  There is about 1 nurse for every 27 patients and no supplies when you need 'em and stuff is just strewn all over the room.  Okay, that's an exaggeration.  The people are nice, the rooms are clean, the supplies are there, but try finding someone when you need them.  When they round, all 10 of 'em come barging into the room, flip on the lights and stir shit up.  They need to shadow rounds in the PICU where the mass of people in scrubs stay in the hallway, discuss the case, and come assess the patient calmly, quietly and one-by-one.  

Okay, thanks for listening to my rant.  I'm just happy we are making progress.  Also we have two of my favorite things about the 4th floor...a bathroom in our room and a big window overlooking the rooftop pigeon nests.  It's the little things.

It's the little things because tomorrow it's the big things.  Lydia is getting 5 vaccines and Synagis, the RSV booster shot.  Eek!  Please, no one tell her that's what she has to look forward to.

Recovery Day 7

Give me some oxy, I've got teeth! Lydia is doing well and weaning off her blow by oxygen. We have orders for the floor but no beds available. She's happy, playing with her toys, sitting up and flirting with the respiratory therapist...and then she erupts! Two teeth have broken through on the bottom and one is about ready to break through on the top.  She's a happy camper until she isn't and I'll give her that!

Recovery Day 6

Lydia is doing great and we're talking about being discharged!  She's been off the vent for 24 hours now and is keeping her oxygen saturation levels above 94.  She's struggling with the HME a little, but she works harder to breath when she wears it and will get it back with time.  Lydia's heart is doing great and her pain is manageable.  She's tolerating her bolus feeds and we're back to normal amounts and schedule.  

The only thing we're keeping an eye on is her incision site.  Her bandage was removed Saturday night because her trach mask was creating moisture on the bandage.  Then she went on the vent which was rubbing on her chest so they used mepilex to keep it protected.  Now that Lydia feels better she is messing with everything, including her trach mask, tubing and the mepilex.  So, they're dressing it differently and protecting it a little more.  If the sight is irritated it could open and lead to infection.  We don't need or want that!

I guess there is another thing.  The hospital is FULL.  Don't plan on checking in to CMH tonight, you won't be able to get a bed.  We won't be discharged to the floor until there is space on the floor.  If we get to leave this week we'll probably be discharged from the PICU.  Dr. Ortmann is talking about leaving tomorrow, Lisa the nurse practitioner is saying to wait and watch the incision site a couple more days.  Maybe we'll leave Friday or Saturday!

Mom, Dad and Lydia played this afternoon after her home nurse, TJ, visited and played!  By 3:00 Lydia was tuckered out and sound asleep.  Nurse Susan used suction tubing to rig up a zip line for Lydia's toys.  She'd be playing and lose them and get irritated, so this way they are secure and she can't lose them. 

I checked out the library today!  When we were here in June, July and August the Kreamer Family Resource Center was closed for remodeling.  Now it's open and it's beautiful.  They have some great seating and computer arrangements.  Everything is modular and can be moved around the room.  Love the colors!  LegoLand is going to create and interactive space for kids, too!  The collection is basic and small, mainly health and medical resource books for families and popular titles for all ages, kids to adults.  Their weeded items go onto a book cart for families to take books homes.  In the summer teen volunteers take a book cart around to the rooms for kids who can't make it to the library.  Yes, I even met the librarian.   

Recovery Day 5

Lydia is kicking pneumonia's butt!  Thank you for all the positive thoughts and prayers!

She's currently laying down, chewing on her fingers, playing peek-a-boo with her blanket and making sucking noises.  She's already pulled off her socks numerous times today, had her hair washed, and flashed many smiles.  She feels so much better!

She hasn't had much morphine or oxycodone in the last 24 hours, just Toradol and antibiotics.  They are ready to switch her meds to oral so she can receive them through her g-tube instead of her central line.  They really want to get her central line out but she's a tough poke and vascular can't get a midline or a peripheral line in.  We may have to get a picc line before all is said and done.  The 4th floor wants access and flips out if they don't have it, even if we never ever use it.  Picc lines are about the only sure bet with Lydia, she loses all the others fast.

We're going to start bolus feeds again soon, she's been on continuous.  Lydia has been getting her formula through her g-tube at a rate of 25 ml per hour.  That's about 1.6 tablespoons an hour!  When we switch back to bolus and work our way back to her normal amounts she'll be getting 143 ml every 4 hours for a total of 858 ml a day.  Mastering that is one step closer to the 4th floor.

The last thing keeping us in the PICU is the vent.  Lydia just came off the vent for her first trial run.  We're leaving her off for an hour to see how she does.  So far her respiratory rate is 58, but she's playing so it's higher and her oxygen saturation is 99.  That's great!  Once she can tolerate being off the vent for 24 hours we can go to the 4th floor and then get out of here!

    

Recovery Day 4

Lydia has pneumonia of the upper left lobe of her lung.  Blah.

Lydia will stay in the PICU for at least a couple more days until she is off the vent.  She is only on the vent to add some oxygen and pressure to her breathing.  CPAP.  It helps her keep her saturation levels up and keep her lungs open all the way when breathing.

Lydia is being treated with antibiotics, bag suctioning, cough assist and CPAP.  She's still getting Toradol, Oxycodone and Morphine.  The kiddo should be on cloud 9, but bless her heart she just feels crummy and is sleeping most of the time, or at least resting with her eyes shut.

Recovery Day 3

Lydia has caught a bug.  She has a bacterial upper respiratory infection or something like that...there seems to be no straight answer right now.  She is starting antibiotics.  She looks better and sounds better than she did yesterday.  Lydia is hooked up to the vent for oxygen and cpap, which is essentially keeping her lungs open wide for deep breaths, but she's breathing on her own.  It's helping her rest and sleep. 

Poor baby girl doesn't feel good at all.  She'll continue getting pain meds and lasix, as well as breathing treatments and antibiotics.  Let's hope this bug bites the dust in a couple days and we can get back to smiles and playing.  Miss my sweet girl from before surgery.  

Same Day Different Room

Last time we had an extended stay in the PICU we were in about 8 different rooms and moved about 16 times.  So far this stay two rooms, two moves.  We're in a shared room which isn't as bad as it sounds as long as you're with another tiny baby and you get the side with the windows.  
Lydia has continued her fits of rage all day long.  Sometimes it just takes the right group of people to figure out something that works.  Lydia's nurse, a nearby nurse, and Lydia's nurse in the new room all were chatting and we figured out that Albuterol and bag suctioning might help her clear out her lungs.  She's retaining a lot of fluid so she's back on lasix.  She's getting upset with every diaper change and can't catch her breath.  She hasn't rested peacefully all day.  

After the first round of Albuterol, which is basically an inhaler but she gets it as a breathing treatment through her trach mask, and bag suctioning, which is an ambu bag with high flow oxygen giving her deep breaths before suctioning, Lydia is finally resting and really restful.  She's been thrashing about all day until now.  She even opened her eyes and looked around for a few minutes.  Also, she's grabbing her lovely a little and playing with the string on her trach mask...two normal Lydia behaviors that I'm very encouraged by.  

All right, I'm signing off and if nothing eventful happens for the rest of the day, I'll update you fine readers and friends tomorrow.  

Recovery Day 2

Ah, Miss Lydia is being a little stinker.  Doctors and nurses yesterday were pretty sure she'd go to the floor today.  In true Lydia fashion, she doesn't want to leave the PICU.  I think she likes the undivided attention they give her.  The 4th floor is different and not nearly as attention getting, and if you do something to get too much attention you go right back to the PICU.  She's got this game figured out.

Heart is good.
Stats are good.
Temperature is good.
Tolerating her feeds.
Off the vent, on blow by oxygen. 

Cranky, mad, angry, anxious episodes that last for 45 minutes...yeah, that's her ticket to stay in the PICU.  The doctors expect Lydia to start acting like herself again, wanting to play and smile, though maybe not for long periods.  Lydia is just laying around like a lazy lady, not wanting to do much of anything.  Then, she has these fits of rage every few hours.  This morning it took her nurse and I about 45 minutes to calm her down and get her to relax.  We did two diaper changes, 4 rounds of suctioning her trach, a dose of Oxy, a dose of Morphine, I held her for a bit, we let her thrash around the bed for a bit, finally got her settled on her side with a bed roll to stop her from rolling around and the glow worm is playing on repeat.  

Dr. Ortmann is on this weekend and she's assured us Lydia is not moving on up today.  She's staying in the PICU for observation.  I was hoping for Dr. Ortmann or Dr. Tieves.  They're both a little cautious, but also they give kids an opportunity to prove themselves.  Needless to say, Dan and I are both relieved to be staying here for at least another day.

  

Recovery Day 1

**There are pictures of Lydia from yesterday and today at the end of this post.  She is hooked up to a lot of things in them and some people may not be comfortable seeing them.  She's sedated in the first one and just tuckered out in the second one.  Just wanted you to know at the top before scrolling down.**

Dan and I finally got to see Lydia around 3:30 yesterday and spent the late afternoon and early evening with her.  Without going into all the details of what was what, I'll just tell you that she had a central line in her collar bone area, an arterial line in one hand, a line in the other hand and both feet, she was intubated, had a drainage tube, stickers/leads totally about 6, pacemaker wires, a catheter, blood pressure cuff and pulse ox probe.  She was hooked up to 12 various drugs, drips and IVs.  Lydia just barely opened her eyes a couple of times for us.  When we first walked in her room she was getting her diaper changed and when she heard our voices her feet shot up in the air!  Happy to know she knew it was mom and dad!

When Dan and I left for food and sleep last night they were preparing to put her trach back in and hook her up to the vent for the night that way.  Her stoma had been open with no trach for about 12 hours.  By the way, since she has the world's best cheeks and a fat rub under her chin, they didn't even cover the stoma.  Her chin and cheeks created a natural seal.  Ha!  The 3.0 size trach did not go in last night so they put the 2.5 size in instead.  Well, Lydia had a rough night.  Not because of her heart or too much pain, but because of her trach, we think.  ENT came to get the 3.0 back in this afternoon and she was a whole new baby!  

As I mentioned above, Lydia had a rough night of not much sleep, obviously some pain, and she was going on 24 plus hours of no food in her tummy.  When Dan and I came this morning she was pretty cranky and grumpy until her larger trach was put in.  Before the larger trach, Lydia had some Oxy and took a 2 hour nap.    After some cranky behavior, a scope through her nose, and a trach change, Lydia nodded off for a good two and a half hour nap.  She also had some formula during her nap, which typically helps her snooze.  

So, it was good to leave a happier baby this evening.  When we left tonight Lydia only had the central line in her collar bone area, a drainage tube, 4 leads, a blood pressure cuff and pulse ox probe.  Yep, she dropped all the other lines and meds in less than 36 hours.  Rockstar!  The PICU doctors are planning to send her to the floor tomorrow and possibly remove the drainage tube.  She continue to take meds for the pain as necessary.  Lydia has tolerated her feeds this evening and is sleeping soundly now.     

Update: We're done!

Yay Lydia!!! Lydia is out of surgery and out of recovery. They repaired the subaortic stenosis and she did not need a valve replacement. That could still be in our future, but for now it's not reality. Thank you so much for your thoughts and prayers today. We can't wait to see our baby girl and give those cheeks some lovin'!

Where we are waiting

In case you're curious about where we have been waiting for the last 5 hours, here is a pic of the Ronald McDonald Family Room at CMH. People are so generous in donating tons of food,  drinks and snacks...though most don't meet Weight Watchers Smart Points specifications. :(

Update Number 3

No update. They are proceeding but no real details. Nurse said they were discussing whether or not to do the Konno, which is the valve replacement, but she doesn't know if they are. Dang it. Go ask!  This is worrisome because we don't really want anything to be wrong with the valve. If we start messing with the valve, aka replacement, then we continue to mess with the valve, replace it multiple times, as she grows. 

Update Number 2

Lydia is now on bypass and Dr. Pastuszko has opened her heart. He and Dr. O'Brien are preparing to determine their course of action and decide what needs to be done. Yes, they know what needs to be done, but they reevaluate once they can visualize the actual heart.

Update Number 1

Lydia is sound asleep, sedated, and Dr. Pastuszko has begun surgery. It takes awhile to open her chest cavity because of the scar tissue from the last surgery.  She should be on bypass in about 15 minutes.

Smiles all the way

Lydia had a happy smiley morning with mom and dad. We left the house a 615 and hung out in pre-op until 830.  We gave our hugs and kisses and parted ways at about 845. We'll be receiving updates from the nurse throughout the morning.

Be Brave Sweet Girl