Tia is doing great!! The Bronchoscopy and the amazing drug Mucumyst cleared her lungs beautifully at Children's Medical Center of Dallas. Once her lung capacity was back up, we were able to bring her back home to recover. Unfortunately, there was a national shortage of the drug and even though the doctors prescribed it to her, we could not convince a pharmacy to release the drug to us. We tried EVERYTHING!! We also had her on the vest treatments four times a day along with all her other heart and lung meds. She continued to improve then would decline, then would improve again but not back up to her optimum lung capacity. Tia's heart has continued to improve and her right ventricle is not getting any larger any more! After several trips to the Pulmonologist, a visit to the Endocrinologist and a visit to Immunologist all physicians have decided that she just needed more time to recover from her surgeries. We thought she would be able to return to school last week, but she contracted a virus and had to remain home for another week. We are so excited to share that she is going back to school tomorrow! So please break out your #TeamTia t-shirts and support Miss Tia tomorrow as she catches up with all her school friends. We pray that her immune system is helped by the antibiotics that she will continue to take while she finishes the school year. We will keep everyone updated on her progress.
Tia was a tired girl this morning and anxious because we didn't have a solid plan. After several hours and LOTS of doctors/nurses/techs in and out of the room we had a plan devised. One of the tests that Tia had done yesterday tested for 50 different viruses including flu. Until those results come back, every medical professional that comes in contact with her has to put on a full sleeve gown, blue gloves and yellow mask covering half of their face (nose and mouth). Kind of scary for a 7 year old that is already anxious and not feeling well! We finally have a plan....we are going to do a CT Scan on her lungs today (with contrast) then do a Bronchoscopy tomorrow morning. We were nervous about the CT Scan because Mama and Uncle are both allergic to iodine. Tia has NEVER been exposed to iodine because of Mama & Daddy's fear that she could be allergic. Since Tia was born, all of the doctors have told us that an iodine allergy is not genetic but that they would honor our wishes not to expose her. We really didn't have an option today. The only way to do the CT Scan accurately was to use contrast. We asked about alternatives to iodine and was told that there are none. After being grilled by Mama in the CT Procedure room regarding the plan to counteract an allergic reaction , the tech set up the machine to run the iodine. It was a pretty frightening couple of minutes watching the iodine inject in her IV by a high pressure machine. Tia opted to stay awake for the CT Scan so that she wouldn't have to endure being intubated and more importantly, so she could eat something right away. Luckily everything went very smoothly - the whole procedure didn't take more than 10 mins and the actual 'reading' time that she had to stay still was less than 2 minutes! So easy for a big, brave girl that really hates being intubated. On to the next challenge...
We had such a great weekend! The weather was beautiful, Tia was feeling well and staying on top of all of her medications. She was able to go outside and get some fresh air. It really almost felt like things were getting back to normal. On Sunday night she started to not feel well with body aches all over and a low grade fever. By Monday morning we had to cancel our plans for visitors and teachers for the day. The body aches continued and the misery worsened, Tia was not feeling well at all. On Tuesday morning she spike a fever and had pains in her abdomen under her rib cage. After a call to her Cardiologist we packed up and headed to Children's for a workup. Her x-rays show the same issue in her lung that we have been fighting for 2 weeks. Her bloodwork showed a confusing picture with a normal white blood cell count, but indicators of inflammation. Tia's Pulmonologist decided to have her admitted to do some additional testing and therapy. Poor Tia had to endure 4 pokes to find a place for the IV. The nurses and the IV team were very kind and sympathetic toward her. There is a device called a 'J Tip' that uses pressure (no needles) to inject lidocaine (a numbing medicine) to the site where the IV will be placed. When the pressure is released it sounds like a soda can opening. After 3 tries and 2 hours (total with breaks) with the J Tip, we decided to go without it. Tia was a champ and in 15 seconds the IV was placed. She was able to get an hour break before her next respiratory treatments. Finally, at 3:00AM Princess Tia was able to go to sleep!
11:00PM We had a successful trip to Children's today because we are HOME tonight! Tia's blood culture from Saturday came back negative which means that she doesn't have an infection near or on her heart (praise God). Her white blood cell count is down which means her body isn't fighting infection but her antibodies to allergies are up. This may
be why she is fighting fevers off and on. Unfortunately there was a discrepancy in the reading of her X-ray on Saturday night. The initial reading said her lungs were clear and later the
Radiologist report said that there were some concerns. We found this out today. Our rock star nurse in the ER heard the problem in her lung. We should have pushed back harder when the initial x-ray reading didn't agree. Anyway, she is on increased breathing treatments and will be followed closely for the next several weeks to be sure she doesn't develop pneumonia. Also, she won't be going back to school until mid-February at least because her recovery has been so tough and the new strain of the flu is so bad. So....local friends, we would love for you to visit but only if you are 100% healthy!! Love to everyone, thank you for the amazing support.
12:00PM We had a long night last night with Tia fighting a
fever and hurting all over. We are back to hopefully get the results of Saturday
night blood cultures, new labwork and new xrays. The OU football coach and
cheerleaders are here to cheer up the patients.
— at Children's Medical
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.
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!
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.