Tuesday, March 31, 2015

A thankful heart, Part II

Continued from Part I, which you can find here.

The PICU room was huge! Joci was in a regular bed in the center of the room. In the PICU, there is one nurse per patient. So we had Nurse Patty all to ourselves. When she wasn't in the room with us, she was sitting at a desk outside the door watching Joci's monitor. There was a couch that converts to [what is called] a bed. And then we had two chairs. They keep the lights on all day and all night. There's one toilet and shower down the hall for everyone to share. And you're not allowed to have any food or drink in the rooms. It wasn't ideal, but at least we could be with our girl.

We sat with Joci for a few hours, holding her hand, giving her kisses, and talking to her whenever she opened her eyes. Eventually, she started keeping her eyes open for longer periods of time, but was still sleeping a lot in between. I decided I should take a break to eat sooner rather than later, when she was more awake. So I left her with Jon while I at lunch/dinner down the hall in the kitchen. Of course, not long after I left Joci woke up and said "mama." I felt so sorry that I'd missed it!

That evening, Uncle Jared and Aunt Kylee stopped by to visit. Joci was awake, but not very responsive. But Jon and I welcomed the distraction! She did manage to raise her eyebrows when she saw the humongous princess balloon and "'Rella" stickers they brought though!

Originally, Jon and I were going to both sleep there that first night. But one look at the "bed" and the two chairs in the room and we decided it would be better if Jon went home to actually get a decent night's rest. I did notice that the other rooms had recliners in them. So I asked the nurse and a few minutes later she was pushing one into the room for me. We rolled it right up to the side of the bed so I could hold Joci's hand through the night... except I couldn't keep the back of the chair in a "reclined" position.

By 1:00am, I gave up and moved to the "bed-like object" in the back of the room. I hated being out of her sight, but I was still getting up every one or two hours to click the PCA for an extra boost of morphine. They started her off at the lowest recommended dose of morphine and then Jon or I or the nurse would use the "clicker" if we noticed her getting uncomfortable. At first, I was little unsure. Just how do you know when a 20-month-old is in pain? But it quickly became obvious, during that first day at least, that whenever she started to move or cry it meant she was uncomfortable. And she'd usually fall back to sleep within a minute of getting an extra "shot."

Some of the "treats" we received while staying in the hospital.
The worst part of the night was when Joci was upset and wanted me to hold her. She'd try to reach her arms up to me but couldn't get very far with all the tubes and wires, which only made her more frustrated. So it was almost more of a relief to have her sleeping. She also got thirsty in the middle of the night, something to be expected, especially after having a tube down her throat for several hours! We offered her some watered down juice which she guzzled in a hot second and then asked for "mooore!" We didn't want to overdue it so soon, so we let her fall back asleep and then gave her another cup when she woke up an hour later. This one didn't fare so well. And when she threw-up her third serving an hour later, they decided to put her on some Zantac.

And this is my frustration with pharmaceutical drugs. Obviously, I'm not going to argue with my daughter's need for some pain control those first few days after heart surgery, but unfortunately, there are side effects to morphine. Itchiness is one. The poor thing kept scratching at her face--no small feat when both your hands are bound up with gauze to keep the IV lines in. She was already started on a pump of Naloxone (a morphine reversal medicine that they give to those who overdose on heroin to reduce side effects.) It can also cause constipation, so they gave her two different medications to deal with that. And now we had to add a fourth ingredient to her cocktail. You can see the potential for a slippery slope, and it just made me appreciate even more that our daughter is otherwise healthy.

I ended up moving back to the recliner sometime after 4:30am. Up until that point, Joci had only been mumbling "mama" and "ow" a few times (and "more" whenever she finished her drink!). But later that morning, she woke up, looked me right in the eyes and said, "Hi!!" It was so cute and encouraging!

Now that she was a little more alert, I didn't feel comfortable leaving the room. I was hungry, tired, dirty (still wearing the clothes from the day before that I'd "slept" in) and patiently waiting for Jon to arrive with some hot coffee! They delivered breakfast--chicken broth, cherry italian ice, jello, and juice. It was Joci's first taste of jello and she loved it! Later they let us bring out the goldfish that Nonnie had sent in a care package and she went to town on those as well ... and even remembered to share with Mommy and Daddy!

Joci was already looking much better, and when the PICU team made their rounds (when a large group of doctors and nurses comes to each room to discuss that patient's case) they were hopeful that we could move off the PICU later that day. The cardio team and pain management team (see what I mean? Sooo many people working with us!) also agreed things were looking good! We just needed to wait for a room to open up on the 9th floor (the wing of the children's hospital for babies and toddlers).

It didn't take long for us to figure out that "waiting" is just part of the hospital game. And "soon" could mean several hours. In the meantime, Joci was more and more awake and wanting to be held! I sat on the bed next to her and snuggled her as close as I could without messing with her wires. The nurse came in and asked if everything was alright. Well yeah, but she just really wants her mama. She asked if I wanted to hold her. Yes!!! A thousand times YES!!

But before we could do that we had to start removing some of the tubes. Little did I know it would be over an hour between "would you like to hold her?" and me actually getting her in my arms! First to go was the catheter. She didn't seem to notice it's absence but I felt relief on her behalf! Next up was the neck line. Remember when I said Jon and I didn't realize how far into her little body it went? Well we were both watching when the nurse pulled it out and we both about keeled over in the process. *shudder* This is the one that was stitched in, and removing the stitches was a bit more traumatic to Joci than removing the actual line. The regular IV would stay until it was time to leave the hospital. And the temperature sensors came off easy-peasy. They waited until right before we moved to take out the arterial line in case more blood draws were required in the meantime.

That left just that lovely drainage tube/bulb and then the electrical sensors. She was down to 1/3 of the tubes and wires she had started with but it was still difficult to maneuver her out of bed. Of course, we made it happen. And approximately 31 hours after we had kissed her goodbye in the OR, I had her back in my arms. Best.moment.ever.

She fell asleep within seconds. And, while this is purely my unmedical opinion, I'm quite certain her need for pain medication significantly decreased once she was in her mama's arms. I don't think we need science to prove that mommy's touch is an analgesia all on its own!

I held her and held her and held her until I really had to go to the restroom. And they finally notified us that they were ready to move her to the 9th floor. That meant removing just that final arterial line (which was a doozy and required a massive bandage!), and then we were sailing down the hall. Okay, not exactly. There were two nurses pushing a full-size hospital bed down the hall, and then Jon and I with all our bags--to get stuffed into an elevator. But when the doors opened onto the wing you could already sense the freedom! So bright! So airy! Not to mention a shower and toilet right in our very own room!

This room was a bit smaller but oh, look at those views! Jon and I celebrated our 9th anniversary during our stay there and if you stood at the window, and turned your back to the nurses and machines and hospital bed, you could almost pretend you were staying at a luxurious hotel in downtown Baltimore. Almost.

Things were so much more relaxed in the new space. I could hold her whenever I wanted. We could eat and drink in the room. She was gaining an appetite for more than just goldfish and jello. And when I pulled out my secret stash of Middlewarth BBQ chips, Girlfriend wanted in on the action! Unfortunately, the gauze wrapped around her hand smelled like BBQ chips for the rest of our hospital stay!

The nurses on the 9th floor were so sweet ... and young. Jon would ask them where they went to school ... and then we'd find out they graduated in 2013. It definitely made me feel old! Margaret, the night shift nurse, was my favorite. Jon went home again our first night out of the PICU. I tried to sleep on the "bed-like object" in the corner of the room, but Joci was up every hour, on the hour, until early in the morning. I finally crashed sometime after 3:00am and didn't wake up again until I heard voices in the room at 7:30 the next morning!

That shiner above her right eye isn't from the surgery, that would be from falling out of bed earlier in the week ...
I was so excited that Joci had slept a solid 4 hours on her own that night! It wasn't until the following evening, when Margaret came back in, that I found out that she had sat up with her for awhile, around 4:30 in the morning, because "I get to sleep during the day and you don't." So they were super nice to me, and extra-super nice to Joci! By Wednesday (second day post-op), we were told that she could get the chest tube out. They brought our original nurse practitioner in for this (the one we met with the week before who walked us through the entire procedure.)

This is "serious Joci"--how she was our first day on the 9th floor.

Not only did the tube enter in under her incision but it wound up and around in her chest cavity for several inches. When they originally placed it, they made a special stitch that allowed the incision to be quickly "cinched" closed after they removed the tube. These are Joci's only visible stitches and they'll come out at the pediatrician's tomorrow! It wasn't an easy task to remove the tube and Joci got a little upset. But by the end she was free of yet one more tube AND they gave her some plastic Care Bear bracelets for being brave.

The fleece bunny blanket with crocheted trim was a donated to the PICU. We brought it home and she still sleeps with it at night!

And lemme tell ya, Joci LOVED those plastic bracelets. She asked me to take them off and put them on a gazillion times that day. She slept with them on. Somehow they got separated from her person for a few minutes one day while the cardiology team was making their rounds. One of the few male doctors we saw while there was absentmindedly playing with Joci's precious plastic bracelets during the whole briefing bit. Joci noticed and immediately started pointing and yelling at the poor guy, disrupting the entire presentation, and forcing him to not only return the bracelets to her but put them around her wrist as well. Meanwhile, the rest of the team had a good laugh!

One of our goals for Wednesday was to get her up and walking around. We got sidetracked by hospital bingo--a game played throughout the hospital by watching a live feed on the TV. This was a special day with parents' bingo first. Jon and I won a Barnes and Noble gift card! Afterwards it was the kids' round. There were so many prizes available! Since Joci had already received lots of toys, books, and stuffed animals while staying at the hospital, we decided to pick out some Star Wars Legos as her prize. She didn't know any different, and her brothers certainly appreciated her generosity!

Big Brother Jack is slightly jealous of Baby Sister Joci's new stuffed animal collection she brought home with her!

As soon as bingo wrapped up, we got her on her feet in some of those fancy hospital socks. She was a bit wobbly at first, but soon enough she was cruising down the hall faster than we could push her IV pole behind her! We discovered the Child Life area, which is basically a big playroom, with yet even more amazing views of the city. She had the time of her life making me dinner in the play kitchen and stealing toys from a boy twice her size. She didn't even seem to remember that she was still hooked up to an IV.

By the time we got back to the room they let us know it was time to take her off the IV meds. Soon afterwards, Marmie, Poppa and the big siblings stopped by for a visit. Jack, Jude, and Julia were thoroughly impressed with Joci's digs and especially the playroom at the end of the hall. The boys even said they hoped they could stay in a hospital one day. Finally free from all her tubes and wires, Joci was climbing, pulling herself up on furniture, and chasing her brothers and sister just like old times.

It was a long day and a busy evening, and soon after our guests left, she fell asleep in my arms. She was due for some oral pain meds before bedtime, but since she was sleeping so soundly we decided we'd just give them to her as needed that night. It turned out that she didn't need any! Although Nurse Margaret had told me to come get her when Joci was awake, every time she woke up she ended up falling back to sleep in my arms before I had a chance to find the nurse. It was her third night after surgery and she was already making it through the night within any pain meds!

Small things we brought to keep Joci busy.

And my collection to keep me busy ... I think I read approximately 2 chapters of my book, watched 1 hour of "Wives and Daughters," forgot my laptop the first two days, and never turned it on the other two. Don't ask me what I did there all day, I have no idea either!
By Thursday morning she was definitely back to herself! Jon was coming in later that morning, but I didn't trust her wild little self alone long enough to take a shower or grab a coffee. At 6:00am she was asking for jelly beans ... and then threw a screaming fit when I said no. (I caved a few minutes later. I mean, open-heart surgery patient. I just can't say no.) Finally free from any tethers she was constantly climbing in and out of the bed, chairs and couch... and asking for my help whenever she got stuck. She discovered one low light switch and flicked it on and off a dozen times ... laughing with each and every blink! She grabbed the box of tissues and pulled them all out one at a time. And then, when I was on the phone, she decided to push all the buttons on the remote controller, including the one that calls the front desk, three times.

This is not-serious-Joci--she's baaaaacccckk!!!
I think Jon could tell I was at my wit's end, because after he arrived he offered to take her on a walk. It became her new favorite activity. And so between the two of us we walked laps and laps and laps around the pediatric wing, with a little girl who would growl every time we suggested a rest.

We took a bunch of selfies that morning, it was the only time she stood still!
Between the med-free night and the energetic morning, the cardiology team agreed that Joci was recovered enough to be sent home. The nurse asked Joci if she was ready to leave and Joci started to cry. I, on the other hand, was more than ready to finally feel the fresh air again! Of course, there was more waiting and paperwork. But we made it out to the car in time for Joci to catch her afternoon nap on the way home. We stopped to pick up "anything-that's-not-a-sandwich" for lunch and also to get Joci's prescriptions--a laxative (that we stopped using after the first day when it proved itself to be a "smashing" success one too many times), Tylenol (which she's only taken a few times since coming home), Aspirin (she gets a half pill once a day for the next two months to prevent blood clots), and iron (she was anemic in the hospital but they told us to hold off on this until talking to her pediatrician this week.)

Surprisingly, the girl who was parading around the house in *only* snowboots the night before her surgery is a little modest about her scars.
It was a beautiful day to come home! Joci was thrilled to spend some time outside, and Marmie gave her a special tubby to wash off all that hospital funk. Our first night home was a little rough--she was up crying a few times in the night, my guess was that it was more of a constipation issue than a heart one, and our morning started very early. But no complaints here as she is already back to her smiley, feisty self! 

Life is slowly getting back to normal. I spent a few days utterly exhausted. But little by little we're getting caught up on laundry and cleaning and, if we're lucky, I may just get out to buy some groceries tomorrow! Thankfully, between my MOPS friends and Jon's work friends, we've been well fed this weekend. We even made it to church on Sunday! Joci's not supposed to be in any "childcare" settings for a little while, so I spent a good portion of the service walking up and down the lobby with her. But for the most part, she rarely complains--just the occasional "ouch." We do have to be very careful that we "scoop" her up (rather than lift her under the armpits) for the next few weeks since her sternum is still healing. It's actually much harder than I expected. Lifting a baby under the armpits is so instinctual, we've definitely forgotten more than once!

Thankfully, we made that random decision to move her to a "big girl bed" the other week, because I can't imagine getting her in and out of her crib (that was under a bunkbed) without bumping her chest in the process. But other than all that, we're just amazed at how resilient she is!

And finally, a massively huge thanks to all of you who called/emailed/texted/messaged/posted/prayed/whatever it is we do these days to let us know you're thinking of us! I didn't have a chance to write back much (heck, I didn't have a chance to do much of anything last week!) but I want you to know I read each and every comment and everyone's love and support was so very much appreciated! I've kept all the cards, I'm saving all the messages, I took pictures, and now I'm finishing up this story because, while I'm thankful that Joci will forget much of this ordeal, I want her to know how special she is to our family, to so many people that she's never even met, and especially to God, who's held her little life in His hand from the very beginning and has continued His hold throughout this difficult week.

I've said it before, but this little girl is such a gift! And we are so happy and thankful to have her healed and whole today!

1 comment:

Kylee Wineberg said...

We are so grateful for that little love!!! I'm glad to see she's back to her feisty self! What an amazing answer to prayer!

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