Friday, July 29, 2016

Officially Discharged!!!

Aberdeen has been discharged from the hospital, less than two weeks after her open heart surgery. We can hardly believe it, but are so incredibly thankful that everything went so smoothly. We are back at the hotel relaxing until her post-op follow up on Wednesday, and then we'll see where we go from there! Everyone was so glad with how she handled everything, but none moreso than us!!!

Sunday, July 24, 2016

Recovery Part 2: Daily Updates

Now that most things have calmed down, my plan is to do once daily updates as we continue through this recovery process. 

Sunday, July 24

Today, the infamous Day 5, was actually a pretty great day. I guess someone knew what I needed today, and a couple of hours after Aberdeen woke up, I got just that. Abby went from grumpy, sleepy, and unengaged, to suddenly smiley, playful, and very much herself. Last heart surgery, it was an entire month before we got any post-op smiles, but Aberdeen was full of great big smiles and giggles today. I am so thankful for that. Her breathing has remained stable, she finally started peeing, and she is back on her home feeding regimen (still slowed down, but the same volumes as at home). She is unfortunately still having some diarrhea and her belly is pretty distended. They've sent cultures to try to pinpoint what's going on in her gut. Tomorrow, they are planning on removing the pacing wires that have been in place in case of heart rhythm issues, and possibly moving her out of the ICU! There are three tiers of care here, and I think we'll be in the middle one, since she will still have the chest tubes in. Looking forward to a change of scenery, but incredibly thankful for the CVICU team and the wonderful care they've provided our bird.


Monday, July 25

It is Monday, right? I feel like the days are starting to blur together. So, pacing wires didn't get taken out. Because her surgery puts her at high risk for heart block, they want to make extra super sure she's ready for those wires to come out, so they decided to wait until tomorrow. Not a big deal, but now that she's fully acting like herself again, she's starting to fiddle with all of the extra things on her chest, and those wires are a favorite. They have been taped and covered and seemingly thoroughly hidden from sight, and then she'll suddenly have them again. So it would be super great if they could go away. Chest tubes aren't ready to come out yet, but they don't seem concerned about the nature of their output anymore. Thank goodness. Still waiting on the labs to rule out gut issues, and I think we made it through the whole day without spiking a fever. Oh, and she was moved out of the CVICU to step down. That's right, out of the ICU before even being a week post-op! Woohoo! We are completely exhausted today and hoping for a quiet-ish night out of the ICU. 


Tuesday, July 26

was pretty sure today that it was Monday again. Days so blurred. Today was another good day. We tried something different with Aberdeen's overnight feed (we mixed her formula ourselves, instead of having the hospital's formula room do it), and her diarrhea was much improved. All of her labs came back fine, so hopefully it was just a sensitivity to whatever made their formula different and her GI symptoms will dissipate. They added in a diuretic to help with any additional fluid issues leftover from being on bypass, which may help with some of that belly distension. The surgical team also removed Abby's pacing wires today and performed an EKG. Daily chest X-Ray is looking good. Chest tubes are still in, but will hopefully come out soon, and then we'll be pretty much ready to be discharged. Crazy. We'll have to stick around Houston for a week or so post-op, just to be safe, but we're ok with having that safety net close by. I think tomorrow will include an echocardiogram to see what Abby's gradient looks like now when she's awake! 

Got that crazy chlorhexadine hair tamed and some clothes on! 


Wednesday, July 27

Woof. Today was kind of a marathon of a day. Abby woke up in meltdown city and decided to hang out there most of the day. I think she's maxed out with people bugging her. She wanted nothing to do with pretty much anyone but Larry the Cucumber. Can't say that I blame her, but unfortunately we had a lot of things to accomplish today. Abby got her morning chest x-ray, the lab came up to get a blood sample and failed miserably. The surgical PAs came in and removed Abby's chest tubes, while her nurse removed an IV that was shot, and another nurse removed the dressing where her central line had been. Then x-ray came back to get another image, post chest tube removal, EKG did their thing, the vascular access team came up to get her blood sample via ultrasound, the surgeon came by to check on things, and PT came to work with her as well. The plan is to be discharged on Friday, fingers crossed, and then we'll hang out at the hotel until her follow-up with the surgeon in about a week. Tomorrow, there should be an echo and more chest x-rays, but hopefully not much else. I think we're all a little burnt out by everything moving so fast - though, of course we're thrilled that she's done well enough to even be looking at such an early discharge date. Hoping we all sleep well after such a busy day! 


Thursday, July 28

I'm convinced that Abby is experiencing something akin to cabin fever, that I'm going to dub "the hospital crazies." She did this when she was inpatient in San Antonio with all that GI junk back in February/March too, but the tantrums are just bonkers. She goes from zero to 100 with no warning or apparent reason and then eventually goes back to zero if you leave her be for a bit. Can't wait to get her out of there and back in familiar surroundings with no one bugging her (except us of course). The echo and X-rays went smoothly today, so hopefully we're still on track to leave the hospital tomorrow! We are so ready! It will be weird leaving with incision care and on sternal precautions, but I think we've got it under control. All the fingers crossed!

Day 5

Dear Aberdeen,
It is day 5 of your heart surgery journey, and while that might not mean much to you, it means a great deal to your mommy and daddy. You see, last time you had heart surgery, day 5 was not a very good day. Day 5 was terrifying, heartbreaking, and lifechanging. Day five left an impression in your mama's heart that may never fade, and day 5 has impacted every single day since. I've had this completely illogical idea in my head, that if we could make it through day 5 this time around, that we'd be in the clear, that everything would be fine. Of course that doesn't actually make any sense, since every heart surgery is its own unique beast to tackle, but I've had a lot of anticipation and anxiety leading up to this day. Thankfully, everything indicates that this day 5 will be completely and utterly calm. You've been doing so much better during this recovery period than you did last time. These last few days haven't been without their wrinkles, but overall, you are moving in a positive direction. You are bigger, stronger, and handling this phase like the fighter we've always known you to be. We love you, feisty girl, our baby bird. Forgive your mama if she seems a little extra weepy today, she just really really loves you and really wants you to be ok. Let's show this day 5 who's boss!

Love you forever,
Your Mommy

Wednesday, July 20, 2016

Recovery Part 1: 7/20-7/23

7/20 9:30pm CT: Oh, recovery, you are difficult. After an uneventful surgery, Abby has made sure to make her presence known in the CVICU. Nothing too serious yet, but they are having a terrible time keeping her sedated, and her temp spiked soon after we got to see her. She's on a cooling blanket now to get her temp back under control, and they are throwing every form of sedation at her that they can seemingly think of. We've had this issue before, but Abby is burning through all of their super heavy duty meds like gangbusters. We really need her to settle out so that she can rest and start healing, but she has had her eyes wide open and is moving all over the place, despite having had enough meds to knock out a large adult man. We're praying that things settle down overnight and that she's looking great in the morning.

7/21 8:15am CT: Abby had a decent night. Her fever broke shortly after my update last night and lots of other things settled out along with it. She was able to get some rest and is on track to be extubated sometime today. Despite her history, it is still considered best to remove the breathing tube sooner rather than later due to complications that can arise from being intubated for extended periods of time. It also means that she can be less sedated, which would be great at this point since it is requiring so much medication to keep her still. They will extubate to CPAP, so she will still be getting support, but noninvasively. We'll see how today goes and I will update again this evening. 

7/21 8:30pm CT: It hasn't been a horrible day, but it hasn't really gone as hoped either. It seems as though all of the meds that Abby fought off so valiantly yesterday finally caught up with her and she was zonked the entire day. While she got some good rest, it meant that she could not be extubated. She needs to be awake and alert in order to cough up any remaining post-op secretions in her lungs (while intubated they can suction them manually) and give her airway a chance to reacclimate itself to being free of the tube. Luckily, because she was so out of it, she's been off of sedation meds all day. If she wakes up enough overnight, they may decide to extubate then, since the ICU attending on tonight is also a CV anesthesiologist and prepared to deal with any mischief she may pose, but it may also be put off until tomorrow. Her temp has fluctuated quite a bit throughout the day, so they're running a bunch of labs to make sure there isn't an infection brewing somewhere. So again, not perfect, but not horrible. Hoping that the night is either super productive or totally uneventful! No mischief!!!

7/22 7:20am CT: Last night went well overall! They decided to extubate her to CPAP around 11pm and she's done great with it! She has had some atelectasis of her left lung, so they might be doing some breathing treatments today to keep that from getting worse. Her temp looks good again, so hopefully it stays that way this time. She's been doing a good bit of retching and vomiting up bile, so they've given her some Zofran to help keep that under control. She hasn't had any food yet, but we're going to start her off on feeds slowly today and see how she does!

7/22 9:00pm CT: Another day that was good overall with a few bumps here and there. Abby is doing well extubated. She was on CPAP for about half the day, and then on a little bit of oxygen support via cannula for the other half. She started to show signs of discomfort late in the day, so we put her back on the CPAP to let her rest. She's still been pretty sleepy, but is at least waking up for short periods now and reacting when people mess with her. PT came in and got her muscles moving a little bit, and we were able to start her feeds up today. She's actually tolerating her feeds pretty well so far. She isn't on anything close to her home regimen, but we're really happy with her progress on that front. Things we're less happy with: there is still quite a bit of fluid coming out of one of her chest tubes. It might be fine, but they're keeping an eye on it to make sure she isn't developing a lymphatic issue like chylothorax. Also, she is producing almost no urine. Some of this might be a side effect of all of the meds she was on, some of it might be because she's dumping a lot of fluid from that chest tube, but no one's sure. There are a lot of labs in the works, so hopefully we'll have some answers to these questions in the morning. I think the goal for the night is just to continue her feeds and lay low. Praying all goes smoothly.

7/23 7:25am CT: Not much to report about last night, no real changes. Breathing over the CPAP was good. She did ok with her breathing treatments and feed. Urine and chest tube fluid are still a concern and will probably be the main focus today. She seems a little more alert and was even snuggling her lovies overnight, so hopefully she's starting to get back to being a bit more like herself!

7/23 8:40pm CT: Our days seem to have established a distinct pattern of up and downage. 
Ups: Abby's oxygen saturations have continued to be great - she was on room air for a good six hours today with no issues. Yay! Feeds are also going well. We actually started her back on her blended diet today (pushed waaaaay slower than usual, but still awesome).  The amount of fluid draining from her chest tubes decreased today, which is great. They were able to pull her arterial and central lines, leaving her with only two peripheral IVs.  
Downs: Her temp is still creeping up to fever status occasionally and then slowly going back down. She's having terrible diarrhea today, so we can't even tell if she's peeing, but they don't want to keep cathing her. Because of this, they had to start IV fluids back up to keep her from becoming dehydrated. Her respiratory rate was also a little high today. So far, her labs have looked ok, but they are still keeping a close eye on things to make sure none of these little issues becomes a big issue.
She was a little more engaged today, but still clearly feels pretty puny and tired. Praying that her labs continue to come back looking ok, and that she starts feeling less crummy. 

Actual Day of Surgery

7:40am: It's actually happening. The anesthesiology team just took her back. We'll do our best to keep you all updated. Thank you for any prayers you can spare.

9:15am: Just talked to the PAs (we love them!). So far, so good. She went to sleep well, which was the part the anesthesiologist was most concerned about, and they've done the transesophageal echocardiogram (internal echo) to confirm her left ventricular outflow obstruction gradient. Actual surgery will begin shortly.

11:30am: Things are still moving along well and as planned. Dr. Heinle had to make his way through a lot of scar tissue from Abby's last open heart surgery (to be expected), and she is now on the heart-lung bypass machine. The next step is the actual resection of the overgrown muscle.

2:00pm: We just saw Dr. Heinle. Aberdeen's surgery went better than we could have hoped. They were able to remove a substantial amount of muscle and some other fibrous tissue that brought her previous gradient of 160ish down to less than 10. LESS THAN 10!!!! She came off of bypass better than anyone expected and is not currently having any heart rhythm issues. There are a lot of things to look out for in the next few days (as we know too well), but as far as the actual surgery goes, we could not be happier. It will still be at least an hour before we get to see her, but we are so incredibly relieved to hear that everything went so smoothly and successfully. Thank you for all of your prayers and positive thoughts; thank you, thank you, thank you!!!

Hoping now for a smooth and uneventful recovery!!!!

Monday, July 18, 2016

Surgery Wednesday?

We're starting to feel a little ridiculous with these updates, but ah well...

Abby's surgeon, Dr. Heinle, was called into a heart transplant this evening, which will push Aberdeen's surgery to Wednesday. Numbers in the ICU look better this week, so hopefully everything will work out for an admission tomorrow evening, and surgery on Wednesday. I actually feel good about this change of schedule, not sure why, but I'll take the peace of mind. Though this past week has been full of ups and downs, this is apparently par for the course when you aren't already inpatient and looking at an emergency surgery. We just haven't been on this side of things before. We don't feel frustrated currently and know that if Aberdeen were the one receiving a new heart, we would fully expect everyone else to be bumped for her. We'll just set our sights on Wednesday for now and keep the families involved in tonight's transplant in our thoughts and prayers.

Thank you all for sticking with us through this saga. We appreciate you!

Friday, July 15, 2016

Day of Surgery

It looks like everything is a go for this morning. I will do my best to update this post periodically throughout the day to let you all know how things are going. We are so thankful for all of the prayers and words of encouragement over the last few days. Thank you all so much.

Well, after sitting in holding for an hour, we just found out that there are no ICU rooms available post-op, so they can't do Aberdeen's surgery today. Apparently the whole team was in arguing with the chief of surgery about it, but ultimately there isn't anything anyone can do. We are now scheduled for Tuesday, but obviously, we'll see what happens. Our nerves are shot. We may head home for the weekend, but haven't decided yet. Thanks again for the prayers.

Wednesday, July 13, 2016

Surgery Postponed until Friday

For logistical reasons unrelated to Aberdeen's health status, the septal myectomy has been moved to Friday. Abby should be admitted tomorrow, once a bed becomes available. Abby is Dr. Heinle's only case on Friday, and the surgery will last most of the day. Thank you for your continued thoughts and prayers!!!

Sunday, July 10, 2016

23 Months Old and Septal Myectomy Info

Our baby bird is 23 months old today! She has about 20 signs that she uses regularly now and seems to be understanding more and more every day.  In the last week she decided that she can stand up from a bench-sit without using her hands and even balanced for a couple of seconds with zero assistance! Abby has also recently started using one finger to point at everything! She would be happy to have us read book after book after book to her all day long (her current favorites being Chicka Chicka Boom Boom, Llama Llama Red Pajama, Baby Beluga, and Sandra Boynton's Doggies; Moo, Baa, La La La; and Snuggle Puppy). She likes to open all of the doors and cabinets in the house, point to the babies in her books, torment the dogs, pop bubbles, and make hilarious faces at herself in the mirror.  Everything is a phone, and if you don't "answer" whatever she hands you, she is clearly unimpressed. We are loving this fun age and seeing her vibrant and spirited personality blossom.

Heart symptoms have been holding steady over the last week or so.  She's still grunting quite a bit, especially in the afternoons, has continued to vomit daily, and is frequently sweaty, but we are incredibly grateful that these things haven't gotten noticeably worse since her surgery was scheduled. We've been on total germ lockdown for about a week now, and will be until we head to Houston - it would absolutely disastrous if she got sick going into open heart surgery, so we're doing our very best to limit her exposure to unnecessary risks. While we've been confined to the house (no therapies or appointments even), it has been so nice being able to spend this pre-op period at home, instead of inpatient.

Though we've been a little isolated from the world, we were thankfully able to visit with lots of family recently for Jameson's promotion ceremony as well as the 4th of July. Other notable moments from the last few weeks include a lovely Father's Day, and getting to squeeze in our annual family pictures before going on lockdown.

We will be heading to Houston on Tuesday, Aberdeen's pre-op appointment with the surgeon, child-life, and cardiac anesthesia is on Wednesday, and surgery is scheduled for first thing Thursday morning.  Apparently there have been a number of emergency surgeries in the last week that have required shifting of the surgical schedule, so there's always a possibility that Abby's surgery could get bumped - but due to her current symptoms, we're hoping that doesn't happen.

Thank you all for your continued prayers and well-wishes.  We are very very nervous heading into this surgery.  Some of that anxiety stems from the fact that it has been a long time since Abby has had a major surgery, or even a sedated procedure at this point.  Additional anxiety is coming from the memory of how tenuous things were after Aberdeen's first heart surgery.  Ultimately, we don't know what Abby's recovery period will look like this this time around.  Some things are much improved with her health, but her hypertrophy is much worse, which can complicate recovery greatly. We hope that because she is bigger and stronger now, she will do better, but still anticipate that she will do things in typical (or atypical), exciting Aberdeen fashion. We are concerned about having a major surgery away from the comfort we found at CCHMC with the doctors, nurses, social workers, and facility we came to know and trust so well - as well as the concern about having a surgery that is over three hours away from our home, if her recovery is lengthy.  We're trying to trust that this is what Aberdeen needs to continue to grow and thrive, and just enjoy these next couple of days, but we are admittedly on edge. We appreciate any prayers and good thoughts you may be able to spare. Additionally, we have a couple of Aberdeen's buddies on our hearts as they celebrate challenging anniversaries this month and face their own surgeries, if you could spare a thought for the families of Ben, Ellie, and Tillery, I know they would be most appreciative.

I can't believe that only one month from today, we will be celebrating Aberdeen's second birthday.  My heart is so full of love for her and I am so incredibly proud of the spunky little fighter that we've been blessed with.

For those interested, I have included below the Cleveland Clinic's description of the surgery Aberdeen will be having performed: a septal myectomy.  While this article is geared toward adults, as opposed to pediatric patients, most of this information seems to be consistent with what we have been told thus far. 


What is septal myectomy?

Septal myectomy is a surgical procedure performed to reduce the muscle thickening that occurs in patients with hypertrophic cardiomyopathy (HCM). Septal myectomy is one treatment option for HCM when symptoms persist despite optimal treatment with medications, or if obstruction severely restricts blood ejection from the heart.
During the septal myectomy procedure, the surgeon removes a small amount of the thickened septal wall to widen the outflow tract from the left ventricle to the aorta. This eliminates the obstruction and the mitral valve regurgitation that occurs with this condition. Patients often experience rapid relief of symptoms after the procedure.
Septal myectomy is a surgical procedure performed to reduce the muscle thickening that occurs in patients with hypertrophic cardiomyopathy (HCM). Septal myectomy is one treatment option for HCM when symptoms persist despite optimal treatment with medications, or if obstruction severely restricts blood ejection from the heart. 

During the septal myectomy procedure, the surgeon removes a small amount of the thickened septal wall to widen the outflow tract from the left ventricle to the aorta.

Who is eligible for the myectomy procedure?

Patients with a diagnosis of hypertrophic cardiomyopathy should be assessed at an experienced center to determine the severity of their condition and to develop a treatment plan. 
It is estimated that obstruction occurs in more than 70 percent of patients with HCM. The severity of obstruction, symptoms and the patient’s response to medications vary greatly. Many patients have no symptoms or mild obstruction and can be treated with medications like beta blockers or calcium channel blockers. 
Septal myectomy is the safest, most successful and most durable procedure for patients with severe symptoms or severe obstruction. Elderly patients or those with advanced medical conditions may be better served by percutaneous alcohol septal reduction.
Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease associated with a thickening of the heart muscle, most commonly at the septum (the muscular wall that separates the left and right side of the heart), just below the aortic valve. If the septum becomes too thick, the passageway to the aorta becomes very narrow, limiting or blocking the flow of blood from the left ventricle to the aorta, called “outflow tract obstruction.” The septal thickening that results in obstruction varies from a few millimeters to centimeters. Mitral valve abnormalities are common and impact repair techniques.

What tests are needed before the surgery? 

What are the possible risks of the surgery?

Your doctor will discuss the specific risks and potential benefits of the septal myectomy procedure with you. The procedure is generally very safe. However, as with any surgical procedure, there are risks related to your age, the presence of other medical conditions and the number of procedures you undergo during a single operation. 
Specific risks may include: infection; irregular heart rhythm, such as ventricular arrhythmia; chest pain or angina; heart attack, stroke or death. Special precautions are taken to reduce these very low risks.

What can I expect before the surgery?

Before your surgery date, you will have a presurgical appointment where you will receive specific instructions about when and where to report for surgery, what to expect before and after surgery, and whether additional tests are needed. If you need to see another health care provider or need testing during this preoperative appointment, you may be at Cleveland Clinic all day or you may need to return another day. 
During this appointment, you will have the opportunity to talk with a nurse or patient educator about the procedure. You may also meet with your surgeon and anesthesiologist. 
If you are already in the hospital and surgery is recommended, your health care team will give you information about pre-surgical tests and how to prepare for surgery.

What happens during surgery?

Anesthesia: General anesthesia is administered by a cardiothoracic anesthesiologist before surgery. The anesthesiology team uses state-of-the-art equipment and monitors to ensure you are safely anesthetized during the procedure.

Type of incision: A 6- to 8-inch incision is made down the center of the chest, dividing the sternum (breastbone) to provide the surgeon direct access to the heart. 
The thickened muscle is approached through the aortic valve so that no direct incisions into the heart muscle are required. The cut muscle heals on its own without needing to be sutured.
Heart-lung machine: The heart-lung machine, or cardiopulmonary bypass, is used during the procedure and takes over the heart’s normal functions so the surgeon can perform the procedure on a “still” heart. 
Blood is routed through the heart-lung machine, and oxygen and carbon dioxide are exchanged in the blood by the machine and then pumped back into the body. By doing the work of the heart, the heart-lung machine helps protect your other organs while your heart is stopped. After the procedure is complete, the heart-lung machine is turned off, the heart starts beating on its own, and the flow of blood returns to normal. 
Pacing wires: Temporary pacing wires and a chest tube to drain fluid are placed before the sternum is closed with special sternal wires. Then the skin and subcutaneous tissue is closed with internal, absorbable sutures. Sometimes a temporary pacemaker is attached to the pacing wires to regulate the heart rhythm until your condition improves. 

How long does the procedure last? 

The actual surgery lasts from 3 to 6 hours, however your family should expect additional time before and after surgery. 

What should I expect after the surgery?

You will be transferred to an intensive care unit for close monitoring after the surgery. The monitoring during recovery includes continuous heart, blood pressure and oxygen monitoring and frequent checks of vital signs and other parameters, such as heart sounds. 
Some patients may require an implantable cardioverter-defibrillator (ICD) to treat a serious abnormal heart rhythm. If this device is required, your cardiologist will discuss the details about the device and the implantation procedure. 
Under certain circumstances, you may have a test called an EP study (electrophysiology study) before you go home to evaluate your heart rhythm. 
Before you leave the hospital, you will receive specific information about incision care, medications, activity and diet guidelines, warning signs to look for and who to call after you go home.
Medications after surgery: You will continue to take your preoperative medications, as directed, until your follow-up appointment when your cardiologist may make adjustments to your medications.

Will my symptoms improve after surgery?

Yes. Surgical results indicate that most patients experience significant symptom improvement and an improved quality of life after surgery.