|Tia's Heart Adventure||
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 very brave girl in her Bronchoscopy today. She was able to sleep until 8:00AM then was shuffled down to the Pre-Op area. At Children's Medical Center Dallas, it is the same Pre-Op area for all surgeries (that we have experienced, anyway) so it was a familiar place to us and Tia. We discussed where the PICC line was going to be placed first, then met with the cardiac anesthesiologist about her plan for the Bronch. She was very anxious and spent some time talking with her favorite gal, Ashley, in Child Life. After her Versed medication (equal to 3 margaritas we learned today!) she relaxed and was happy for the remainder of the time she was awake. Apparently, she was telling her nurses how to silence the machines that were beeping. That's our girl! She did very well through the PICC line procedure and her numbers stayed steady through the Bronch. Three samples were taken during the Bronch - one of her cilia, one of the mucus plug they found in her lung, and the third was from the wash that was injected in her lung, hopefully grabbing a sample of mucus that was deep in her lungs. There are so many more technical terms for the procedures that were done, but we're keeping a simple explanation here! It took her a few hours to come around fully from the anesthesia but when she had a Nutella Sandwich, we knew she was feeling OK. About 2 hours later, she was sleeping but was restless. When her Cardiologist came in to check on her, her respiratory rate was elevated and she had a 102 fever. Bloodwork has been ordered and we will see what is going on....
Good morning, Tia is going in for her Bronch at 9:00am. She had a good night of sleep, we were very lucky to have an excellent team of nurses. Most patients have one nurse, Tia had 3 last night that are all strong members of #TeamTia, preserving her sleeping time! Tia can't eat anything this morning, so we are thankful that she is sleeping through the morning and not realizing that she isn't allowed to eat. The Pulmonologists decided to add a cilia biopsy with the Bronch to see how well her cilia 'beats' (moving mucus up out of the lung). We asked that the Pulmonary team touch base with her Immunologist to see if there any particular samples that she wants during the Bronch. As a parent, its important that you act as a communication clearinghouse, even if you aren't sure about specific terminology or protocol. You have a great excuse for non-perfect questions if you never went to medical school! Your child doesn't have any other advocate to ask these questions. Tia's cardiologist is on-service this week which means that she is in charge of the floor that Tia is admitted to. We are glad that she is the Cardiologist switching out because she knows Tia very very well. The last Cardio Attending was lovely and all of the Attending Cardio physicians have been, it can be tiring catching someone new on 7.5 years of health history. We were just informed that the Pulmonologists want to start IV antibiotics as soon as they take the biopsies. To make the process of giving her the antibiotics easier, a PICC line will be inserted while she is under anesthesia for the Bronch. We don't know where it will be placed yet, we are waiting to sign the consent forms and find out more information. It's been 7 years since Tia has had a PICC line.
Late last evening we received the preliminary results of Tia's CT Scan. The good news is that she doesn't have any vascular abnormalities, which means that she doesn't have any defect in the lung as it relates to veins or bloodflow. The bad news is that her lower left lobe is showing signs of chronic disease. It was a positive experience having the CT scan so that the Pulmonologists know exactly where and what to target for the bronchoscopy. The "Bronch" is scheduled for tomorrow (Friday) morning at 9:30AM. They will use a flexible fiberoptic scope to see the lung from the inside and take biopsies of the tissue. We are worried that there is some type of infection hiding out in the lung. If that is the case, we could be looking at several weeks (possibly months) of IV antibiotics. When Tia had her first heart surgery at 3 weeks old, she landed a massive infection around her heart. We went home on two different IV antibiotics - one for 6 weeks and the other for 8 weeks, that we gave concurrently. She had a PIC line surgically implanted in the inside of her arm that dropped into her heart. It is not an experience we wish to repeat, but at least we have had real life training! Today she remained in isolation in her hospital room, with everyone gowning up and covering up when they come into the room. Please keep Tia in your prayers tomorrow morning as she will be under general anesthesia for her little lung surgery. We will keep everyone updated as best we can. Thank you for your kind words and support!
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!
On Jan 14 we went back to the Pulmonologist. Her left lung was still
in bad shape. He prescribed a steroid and a drug called Pulmozyme that is
given to kids with Cystic Fibrosis. The plan with the Pulmozyme is that it
will break up the mucus in her lung so she can cough it up well.
Unfortunately the medicine costs $2700 for a 14 day supply, and our insurance
company didn't see the need for Tia to have it because she doesn't have
CF. It took us 48 hours, dozens of phone calls and an adult temper tantrum
in Walgreens to get through 3 levels of denials to finally walk out with the
medicine and a reasonable copay of $100. We figured out a great trick with
the steroid. Tia prefers to take pills. The trouble with the steroid
pill is that it dissolves very quickly and tastes terrible. She was
prescribed to have 1.5 pills each dose. In an effort to NOT have her vomit
up the terrible tasting pill, we cut all the pills in half. Then used a
baby spoon with chocolate pudding wrap the pill half in the pudding. Tia
would take the 'glob' of pudding in her mouth, then use a straw to suck up water
out of a cup and wash the whole thing down. It's the little things,
friends that make life a little easier, that we are thankful for!
On Jan 11th Tia had sharp pains in the sides of her ribs. One of the
issues that can develop by using the Flutter Valve is a pneumothorax. The
nurse in the Pulmonary Lab warned us if she experienced any sharp pains to call
her Pulmonologist right away. Between Tia's Cardiologist, Pulmonologist
and Pediatrician, we were able to get the xrays done in the suburb where we live
instead of making the hike all the way to downtown Dallas. This worked out
well timewise, but in the end, it wasn't easy for the physicians to see how her
lungs had progressed. The Radiologist confirmed that there was no
pneumothorax and her left lower lobe looked poor.
Since we have been out of the hospital, it has been so difficult to send out updates. Besides getting back to 'normal life' with work, keeping up the house, putting away Christmas decorations (finally), Tia's little sister managed to come down with Strep! Today is January 22 and we are back in the hospital. Sadly, we finally have a few wide awake minutes to write up an update since Jan 2nd BECAUSE we are back in the hospital....
On Jan 8th we brought Tia for a follow up appointment to her pulmonologist. Her left lung was in poor condition. We reviewed the xrays and lab reports from her visit to the ER. Her doctor prescribed an Acapella Flutter Valve to use along with her Xopenex treatments to work out her lungs and help to clear them up. The valve basically vibrates on the nebulizer machine with the medicine in it so that the vibrations reach down into her lungs. We added some new allergy meds also. Finding an Acapella Valve is not an easy thing to do! After calls to 9 different pharmacies and medical device companies, the only place that had them was the Pulmonary Lab at Children's. Good piece of information!
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.