Tia's initial bloodwork came back with an elevated
white blood cell count. That confirms that she has an infection somewhere. Her
lungs are clear (no pneumonia). They sent us home for tonight. If her fever
spikes again tomorrow then we should return to CMC and they will admit her to
the Cardiac Floor right away. Tired Hacketts tonight.
Good news, Friends, we have been discharged from the
hospital again! After the first round of Potassium last night Tia was hooked up
for a second round. Her next blood test showed an adequate level so we could
come home for a few days anyway. She was de-satting a lot last night and her
blood pressure was up and down. Overall though her numbers aren't dangerous and
its best for her to be recovering at home. We are thankful for all the prayers
and kind words.
10:00PM Tia had a follow up appointment with the Cardiothoracic Nurse Practitioner early this morning. We had a hard time getting to the hospital thanks to all of the ice. Dallas/Ft Worth is not well prepared to handle such northern temperatures! We checked in at the Cardiology Clinic and were sent to the lab for bloodwork then to Radiology for chest x-rays. When we returned to the Clinic, the Nurse Practitioner came out right away and told us that her Potassium was very very low. She said, "Did they have trouble drawing the blood? Did they draw from her finger? Maybe her blood clotted?" We knew that none of these issues happened. Tia was lucky enough to land the BEST phlebotomy technician at CMC Dallas, our very favorite Ms Carleen! Tia is cool as a cucumber when she has her blood drawn and appreciates a great lab tech. We had her labs repeated and confirmed that her Potassium and Chloride were abnormally low which indicates arrhythmia. Tia was also running a fever and her heart sounded like there was an extra beat through the stethoscope. She heard the rumblings that she was going to be re-admitted and that was news Miss Tia did not want to hear. Her EKG didn't show any major issues, just some slight variations to a normal rhythm. Then she went for an echo cardiogram. Her echo was beautiful - her new valve is working very well and her right ventricle is responding well to it. After discussion with her excellent regular Cardiologist, we were admitted to the Cardiac Floor of the hospital rather than the ICU. A member of the IV team came to her room to start her IV for the Potassium drip and that didn't go so well. The IV Team member was fabulous - very kind and sensitive to Tia. Unfortunately her veins have been poked so much that she has bruises all over both of her hands and where there isn't a bruise, she has scar tissue. After a failed attempt, she ended up with an IV on the underside of her arm. Then 4 hours later, she had another blood draw to test her potassium... #5 'stick' of the day. Tia claims today to be "the worst day ever". It's been a long one for all of us.
Merry Christmas! Yesterday, on Christmas Eve, we were able to pack up Tia's hospital room and head home! There was some concern that we wouldn't find a pharmacy open that had liquid lasix (a drug used to pull excess liquid away from the heart) since it was Christmas Eve. After many many phone calls, it turned out that the Pharmacy at Children's Medical Center was open limited hours and they could provide us with the meds. (Initially we were told incorrect information that the CMC Dallas pharmacy was closed.) We were relieved - if WalMart doesn't carry what you need, you know it will be impossible to find anywhere else! Tia spent an hour in the playroom while we packed up her room. Tia was VERY excited to be going home for Christmas Eve night, she was really worried Santa wouldn't be able to find her in the hospital. Normal things like getting in the car, buckling herself and carrying her backpack out of the car, are things that she can't do on her own right now. In our discharge instruction we were reminded that her sternum is in two pieces, held together with wire loops. It will take 6 weeks for the bone to heal. She is about 50% functional right now. We had to carry her Christmas presents over to the couch for her to open. Usually she is the one whizzing around, giving orders as to who can open which present next. We have alot of recovery left, but we are glad to do it at home. Kicking off with a White Christmas isn't a bad way to start!
10:43PM Tia's O2 sats went back up to 100 today! She continued to improve all day today. She even got down on the floor with Luci to play with Sand Art. They bickered like sisters do, and that was music to our ears. When the dressings that covered the chest tube insertion sites were removed a few days ago, one of the sites had popped open. The nurse practitioner used a steri-strip to close it up. Today Tia had some pain near the other site. The new dressings will come off tomorrow and we'll see what we're dealing with. Hopefully we will not find anything but sites on their way to healing up completely. Tia asked the doctor doing rounds if she could be home for Christmas. She had such a good day today, that we are on track to head home tomorrow. She is very, very excited that Santa won't have to look for her anywhere but home.
11:16AM Tia is starting to bounce back! You know a kiddo is sick when you have to beg them to eat hot chocolate and pancakes. She was sick to her stomach at 5:00AM when we went down for x-rays this morning. After a few bites of breakfast around 10:30 she starting feeling a little better. She asked to have her braids taken out that one of the ICU nurses had put in on Monday. Tia was so pleased with her hair that she asked for a picture to be sent to Taylor Swift (@taylorswift13 - Feel free to RT, Twitter friends! #TeamTia). The pneumothorax is much smaller than yesterday and is hardly a threat any more! God is good!
9:28PM Tia walked around the floor a few more times today. She was very happy to see her Nonna and Luci when they arrived. Her blood pressure has been great and her heart rate is staying in the lower, more normal range. She has had to go back to the oxygen a few times today when she had bad coughing fits. If she isn't coughing, then her O2 saturation has remained in the mid to high 90's. She FINALLY had an appetite today and ate a little bit of everything! A turkey sandwich, an apple, a marshmallow, hot chocolate (delivered by one of her firefighter friends), it was like the Very Hungry Caterpillar in real life...We're looking forward to a night of good numbers and good sleep! One of our favorite night nurses is back on tonight so we are actually pretty relaxed. Good night everyone!
1:41PM We met with one of Tia's doctors yesterday and he put her on oxygen through a nasal cannula for 24 hours. Although her O2 saturation wasn't dangerously low, we all agreed that she would heal better if she was able to breathe better and get more oxygen to her body. This physician is more concerned about her developing pneumonia than he is of the pneumothorax getting worse. It's very interesting that different physicians, both excellent in their own specialties, have different priorities for the same patient. It took some bribing, but we were able to get Tia to walk around the floor. Her sister Courtney came by with some friends and played Monopoly with Tia on her bed. Then her sisters Shelby and Luci came to have dinner. The oxygen helped Tia sleep well. Her pain was worse but with medicine she was able to rest. When Tia woke up this morning, her numbers were great and she was feeling pretty well. She had 2 paramedics that were firefighters escort her down to the lab to get her blood drawn. The first thing they asked her was, "How's your friend, Tony?" They were very impressed that she had her photo taken with the Cowboys. She was impressed that they were firefighters! Tia was able to walk down to the lab, but took a ride in the wheelchair on the way back. That was about all the Princess could handle for activity. She's wiped out now!
12:24PM Tia perked up yesterday in the afternoon and got out of bed when her BFF's Amanda and Channing came to visit her. The brought her a beautiful sign for the front door of her hospital room with a photo of Tia and her new friends of the Dallas Cowboys. In the playroom, the girls did some arts and crafts, played games and visited with other patients. After some rest time we had some other friends visit and had a picnic dinner in her hospital room. Tia hasn't wanted to eat very much yet, but Angel Hair pasta from her favorite local Italian restaurant interested her enough to warrant a few bites. She had a good comfortable night, however her O2 sats fell again while she was sleeping. This morning we got the news that she definitely has a pneumothorax, which is a collection of air between the lung and the chest wall. Her pulmonologist made another trip out this morning to let us know that she needs to be up and moving, but needs to take it easy when she is walking around and coughing. She is in a tough spot, she needs to walk to help her belly feel better, but not exhaust herself. She needs to cough so she doesn't get pneumonia, but not cough so hard that she makes the pneumothorax worse. Best case scenario, the pneumothorax will absorb into her body. Worst case scenario she will have to have a procedure to release the air pocket. We are praying for the air to absorb, for her belly to feel better and for Tia's appetite to return.