September Updates

The last couple of weeks have held lots of appointments for our little bird. First, we headed out to Houston for a cardiology follow-up as well as another chest X-Ray to try to get a better idea of what was going on with her lungs at her pulm appointment last month. Cardiology was happy with Abby's echo and highly underwhelmed by her X-Ray findings. We retrieved a few more X-Rays from their department, so that pulm would have more data points to use in gauging the condition of Abby's lungs and headed home. 

The following Tuesday, we saw the local pulmonologist, who agreed that her chest X-Ray looked much improved and we didn't have to start any aggressive treatments. Thank goodness! He still considers her at risk for issues and had her get an extra vaccine for pneumonia prevention, but we were otherwise in the clear, and I was happy I didn't put her through the nebs a couple weeks ago!

That night, Abby had a terrible night. She was puking everywhere and we noticed that her urine smelled funky. We got her into the regular old pediatrician on Thursday, and after waiting hours for her to pee, finally had to cath her to get a sample. Although our pediatrician was hopeful that it would just be concentrated urine due to it being so hot out, I had a sneaky suspicion it was more than that. Turns out, it was a good thing we waited, as I ended up being right and she was diagnosed with a UTI. Uggghhhh. So now she's on an antibiotic course and will hopefully be feeling right as rain soon. Once this clears up, I'm really hoping we can go for a least a couple weeks without anything new!

Abby is otherwise doing well. She's off of sternal precautions now, and is making lots of progress at therapy. We just got her back in the gait-trainer, and while it will be a bit before she builds her strength back up to walking, she's at least scooting around the house at turbo-speed again! She is also gaining weight like gangbusters! So much so, I think nutrition will probably want to back off on her calories when we see them later this month. It's amazing how much more efficiently she can use her nutrition when her heart isn't working so hard. Abby's been in a great mood for the most part and isn't letting any of these little hiccups get her down.

1 Month Post-Op

Aberdeen is one month post-op today, and since I couldn't get it together enough to do an in-depth birthday post, I thought I would provide a few more updates as we celebrate this milestone and deal with some difficult developments. 

Abby weighed in at 22lbs and was 31.5in long at her cardiology follow-up on Thursday. Her local cardiologist was thrilled with how well she was doing and so happy to have this myectomy done and successfully out of the way - he made sure that we understood that overall, her heart is still very thick, but that her obstruction is so much improved that her gradient could be considered normal. NORMAL! 

Abby's mood has been steadily improving the further we put the hospital behind us. We are able to get her down for a nap and bedtime again without a gigantic meltdown, and she's warming up to her therapy sessions more quickly each time. She still wants NOTHING to do with medical appointments and her intense reactions to minor things (like vitals) has me run pretty ragged. I hate that she's been through so much and that it's continuing to impact her in a way it didn't when she was an infant. I just want to give her a break.

But breaks we do not get, because if it's not one thing, then it's another - this time her lungs.

After Abby's cardiologist appointment, we had a routine chest X-Ray done, as requested by pulmonology. Results were "highly abnormal" - terms we're used to hearing, but not in reference to her lungs. Apparently there is indication of chronic airway disease, possibly due to aspiration. We don't really know if Abby aspirates, because she doesn't swallow enough to do a modified barium swallow study, which would diagnose such an issue, but there was enough gunk apparent on her X-Ray to make her pulmonologist (who is new to us) very concerned. He immediately ordered up all sorts of breathing treatments, including nebs and CPT (a technique used to break up mucous and fight atelectasis by banging on her back with a cup thing), at which point I had a big old breakdown in the doctor's office. I don't think I've cried like that at an appointment ever, and only very few times even inpatient. It's just too much right now. I feel like we just got over a huge hurdle only to run into a brick wall. I don't know why, with the 10,000,000 chest X-Rays Abby has had in the last month, NOBODY else has mentioned anything like this, and I don't know how her lungs could be in THAT bad of shape with zero clinical indicators. So frustrating. I agreed to the at-home CPT, since Abby doesn't mind it, but I could not bring myself to make her do a bunch of nebulizer treatments right now. We'll do another chest X-Ray in a couple of weeks and see how things look. Maybe by then, she'll be more receptive to the nebs and I'll be in a better place emotionally. 

I'd like to take a second to give major props to Jameson, who has been awesome and a huge help while Aberdeen and I have been struggling. He's always been an amazing husband and father, but I've been especially thankful for him the past few weeks. So thankful.

Praying for better news for our bird at the next appointment and a little peace for all of us. 

TWO YEARS OLD!!!

This past Wednesday, we celebrated Aberdeen's second birthday!!! At only three weeks post-op, we spent a quiet day at home summed up with cake, presents, and a visit from Auntie Jubie. I've had some trouble composing this post, as I can't quite formulate the thoughts and emotions I've had in relation to this day into coherent sentences, but suffice it to say, I'm extraordinarily proud of our little bird. I'm so incredibly thankful for these past two years and all of the smiles, laughs, tears, and triumphs we almost never had. This girl absolutely illuminates our lives, and while keeping us on our toes, has made us feel more blessed than we could have ever imagined. She is a true delight, and I am so thankful for every single day with her. Even the tantrumy days. Even the hospital days. Every. Single. Day. 

HOME!

We arrived home late last night, a mere two weeks after Aberdeen's open heart surgery!!!

Abby's post-op appointment went great! Her echo last week showed that, even awake and not super happy, her gradient is still less than 15. While this technically means that she still has obstructive hypertrophic cardiomyopathy, her heart is in a much more manageable place for now. Yay! Her X-rays have looked great, she isn't sweating or puking anymore, and we're hoping that this myectomy will buy us at least a few years before we have to talk about surgical intervention again. 

Abby was SO excited when we got home. She was squealing and laughing playing with all of her toys and rolling around on the floor again. She was decidedly less happy about having to go to bed and had kind of a rough night overall, but hopefully now that we're home, her temperament will start to even back out again - holy tantrums, batman. 

She is on sternal precautions for the next month, meaning we can't pick her up under her arms, pull on her arms, or allow her to put much weight on her arms or chest. This is a little tricky now that she's bigger and not yet walking, but we're managing. We also have to keep her away from busy places until she's off of sternal precautions, as we still need her to not get sick. So we'll be having low-key birthday celebrations at home this year, but we're seriously thrilled that we will actually be at home and not in the hospital as we expected! Woo hoo! I can't believe Aberdeen is turning two next week!!!

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!!!

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. 

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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.

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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. 

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Tuesday, July 26

I 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! 

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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! 

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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