No Go Baltimore

Audree update: Audree had an EKG, Echo, and labs today. Her heart function has continued to worsen. Her ejection fraction is now 8. Her BNP increased as well. It was 10,359 last week and is slowly rising. Audree has also lost most of her appetite and has been tensing up saying "ow"... So we are at the brink right now. She is wearing a halter to monitor her heart for 24 hrs. If her appetite doesn't increase and no improvement is seen then we will be admitting her and starting milrinone which will change her status to 1A. So, it looks like the door to Baltimore is closed. After discussing Audree's situation with the transplant team today, their recommendation is not to move Audree at this point. It is just too risky. We have access to ECMO and the Berlin Heart here if Audree continues down this path and her heart fails before a donor is available and those options are not available in Baltimore. Thank you for your continued prayers and support. This next 24-48 hrs is critical as to what happens next. Thankfully, Audree is still energetic and happy. Plus her other organs are still happy and functioning well.

CELEBRATION

HAPPY 1ST BIRTHDAY

AUDREE ROSE

Audree celebrated her 1st birthday on June 30, 2011! Daddy, Avaree, Marky, Grammy, and Papa all were here to celebrate with us. Uncle Mike, Aunt Ashley and cousin, Colin, all flew down to be here too! We spent the first few days that everyone was in town, swimming and playing in our pool; and then we took the kids to the Children's Aquarium. Everyone had a wonderful time, especially when they got to pet the stingrays! Audree would try to pet every single stingray and was very excited when they would splash her. She was very gentle with them. It was amazing to watch her experience those amazing animals. The evening of Audree's birthday, we had a small birthday party at our transplant apartment. The theme was pink and brown with giraffe and heart accents, to match the outfit that Lora Hunter from Beary Unique Gifts in Canyon, TX made for Audree. (Audree was not wanting to stand still for her pictures, so the outfit was a little rumpled, but hey it was HER BIRTHDAY, right?!) It was not our typical birthday bash, but it was perfect! We had the best time watching all of the kids playing together, especially Colin and Audree, since they have not seen each other since September 2011! We are so thankful for the time spent together and the memories made. We will cherish them forever. Audree Rose, we love you more than all the words, in all the books, in all the world! Happy Birthday Darlin!

                                                           

               Watch the video of Audree blowing out her candle!

Audree's 1st Heart Cath

June 15, 2012

Everything went very well today! After Audree was checked in, they took us to the pre-op rooms where we met with the Anesthesiologist, the Surgeon, and the nurses. Once we had signed all of the paperwork, discussed all of the risks/possible side effects and the precautions the team takes to minimize the risks, the nurses gave Audree some "happy juice" to help her stay calm while they started her IV. We were able to walk her to the cath lab doors and give her hugs and kisses. Grammy, Papa, Daddy and I then started our wait in the waiting room until the procedure was finished. After a few hours the Drs came to speak with us and let us know that everything went very smoothly. While Audree's pressures are abnormal (due to her cardiomyopathy) they are not bad enough at this point to require the PICC and IV meds!! Audree also tolerated the anesthesia very well. Once she was wheeled into recovery, we were able to go 2 at a time to sit with her. Audree then had to stay for 4 hours, lying on her back with her legs strapped down to the bed. We took turns keeping her entertained, but after 2 hours she had reached her limit. Our wonderful nurse called the Dr to get orders for us to lay Audree on our laps. Once she was able to snuggle in Mommy's lap, Audree calmed down and fell asleep again. She was finally discharged around 4:30. She has to keep her bandages on until tomorrow and limit her "rough-housing" and swimming for 4 days. All of the nurses and Drs. were very impressed with Audree and loved her fun personality. Overall, it has been a good day. Audree will remain at Status 2 for the time being and we will continue with our regular transplant appointments and med dosages. Thank you all for your prayers and support during this time.

 

 

 June 14, 2012

 

Update from Mommy (Kimberly): It has been a long day. I took Audree up to the Solid Organ Transplant Clinic for labs, X-ray and a checkup this morning. Everything went reall well. Ms. Shi Shi was even there today! But since Audree has gone back to being freaked out during labs, she cried during her labs this time:( She felt better very quickly though, and Ms. Shi Shi gave her a neon pink bandaid, ...a bottle of bubbles, a pretty turquoise bracelet, and a fun little ball. Our coordinator, Whitney, called earlier this evening to let us know that everything looks good, as far as her white blood cells. We were needing to make sure she didn't have an infection, because they would have to cancel the cath if she did. Dr Barnes, one of our awesome cardiologists, checked Audree out today and gave the green light for tomorrow.We will have to be there at 6:15 am since she is the first patient on the schedule. If they determine that Audree will need the IV medications, she will have to stay in the hospital to get a PICC line and get her meds adjusted. If that happens, Audree will end up wearing a little backpack all the time that pumps the meds through the PICC. It's a little scary, but it will also move Audree to status 1A. Please keep her in prayer tonight and tomorrow. Thanks everyone!

Splashing Into Summer

                                      Friday, June 8, 2012

Update from Kimberly (Mommy): We are enjoying the beginning of our summer together! Marky and Avaree are staying with me and Audree for the majority of the summer. We spend much of our time in the swimming pool. Audree is definitely a water baby. She loves floating under her canopy and playing "shark" with her brother and sister. We have also spent quite a bit of time riding our bicycles. Audree is still not a fan of her helmet, but it helps that her brother and sister have to keep their helmets on all the time too. Daddy is spending his summer working and taking care of things at home. He flies down on Friday evenings and spends the weekends with us. Although it is not the ideal situation, we are making the best of it. We had Aunt Aline stay with us for a few weeks, while Grammy & Papa were on vacation in Europe. She has been teaching the kids to bake (we have had her scrumptious, chocolate cookies several times this past week :) and helping them with their "homework". We are having them spend some time each day practicing with some Kindergarten workbooks for the summer. It has been interesting having our country kiddos living in an apartment in the city.

Having all 3 kids here with me has made it a little difficult to keep the blog updated. Audree has had a few appointments with the transplant team over the past few weeks. Here are the updates from those visits:

Thursday, May 31, 2012

Update from Kimberly (Mommy): Well we had another interesting day... Things were a little different at our appointment this time around. Audree had her Echo first, which took more time than normal because we waited an hour before they were able to take her back. Thankfully, our favorite tech, Laura, was there and did Audree's Echo. Laura has such a calming effect on Audree and "goes with the flow"... of each child, and Audree does so well for Laura. After we got back to Solid Organ Transplant, I spoke with one of the Physician's Assistants who went back over the process for the heart cath and explained that they will be looking at various pressures of the heart chambers. The results of the heart cath will determine if Audree will need a PICC line and would need to start Milrinone. If that happens Audree will go to status 1A on the transplant list. After that one of our cardiologists looked at Audree's Echo from today and said it looks the same as her Echo from last Thursday. Audree then proceeded to vomit all over me, herself and the floor. Once the Dr examined Audree, we had to take her down for labs. Our favorite tech, Ms. Shi Shi, left 15 minutes before we got there; so unfortunately it was not a pleasant experience for Audree. We have not heard from the Transplant Coordinator yet with the results of her labwork. Once we get those results I will update again. Please continue to cover Audree in prayer! Thank you!

Tuesday, May 29, 2012

Update from Kimberly (Mommy): It has been one rough day for Audree. She has had a 101.1 fever even with the Motrin/Tylenol alternating regimen and has had some really bad diapers. The doctor is pretty sure that Audree has a virus that is going around. They did not want her eating anything, even her bottles, so her little bowels can settle down. She has only been allowed to have pedialite. Unfortun...ately, Audree has refused every consistency and flavor- frozen, slushy, mixed with ice chips, etc. We tried it in her bottle, We tried it in cups, We tried it with a spoon, We tried it with everything! (Starting to feel like Dr. Seuss) She was adamant with her refusals and was becoming inconsolable. I finally called the Dr to let them know she had stopped having wet diapers and was refusing all forms of pedialite. They decided it would be better for her to take her bottle and not get dehydrated even if she had some bowel issues. Her fever is up and down, but we are continuing alternation of the meds. The Dr is going to check in with us first thing tomorrow. Then on Thursday we will take her in for an Echo to see how her heart has handled this.

 

Monday, May 28, 2012

Prayers needed! Post from Kimberly at 4:30 am " UP... Audree was tossing and turning, yelling out in her sleep, breathing really hard, and when I touched her she felt very hot. I took her temp 4 times, but no fever is registering. She is now sleeping and I'm awake feeling uneasy..."
Post from Kimberly at 7:30 am " Well should have gone with my 1st instinct... Audree has gotten sick twice in the last hour. My thermometer is still reading the same temp, so I believe it is going in the garbage. Transplant said for me to watch Audree closely and let them know if anything changes. Attempting to keep fluids down this girl is going to be tough- she is stubborn

 

Thursday, May 24, 2012

Audree update from Kimberly (Mommy): We had quite the eventful day today. Marky & Avaree went with us to Audree's Transplant Clinic appointment. They did very well, considering how long it took, :) and were Mommy's big helpers. Today's appointment was one of the long ones - with labs, ECHO, and Dr visit. Audree is now 25.59 inches long and weighs 16.51 pounds. Audree's lab results showed us that h...er liver and kidneys are "happy"; however her BNP level (brain natriuretic peptide) is now at 8,000. To put it into persepective a BNP lower than 100 is considered normal. 900 is considered severe heart failure. Her level doubled since her last appointment. Also, her ECHO showed a decrease in heart function. Since Audree is still on the growth curve (at the 10th percentile) and her other organs are still healthy, she will still be a status 2 on the list. However, the Cardiologist, Dr. Das, wants to move up Audree's heart catherization to June. His findings from this heart cath will likely result in Audree moving to status 1B. Dr. Das wants to increase Audree's dosage of carvedilol and start her on an aspirin regimen as well. Since her heart does not "squeeze" properly, the blood tends to pool before it is pumped to the rest of her body. Dr. Das is concerned that she could end up with blod clots. Another thing that he addressed is that as Audree is beginning to walk, we will have to be extremely cautious. She cannot fall and bump her head or even bump into the furniture. He also discussed that after looking at Audree's heart function and levels over the past few months, he feels that she is right on the brink. If she was to get sick it could push her over the edge and she would likely not recover. This was some pretty tough news to hear today. Please pray for our Audree girl and for our family.

A New Season

Update from Kimberly (Mommy): I'm sorry for the lack of posts over the past few months. We have had some major changes recently, and have finally settled in to our "new" lives. We left the Ronald McDonald House Dallas and moved into a temporary transplant apartment in a nearby town for the duration of our wait for Audree's new heart. We made some wonderful friends during out time at RMHD and miss seeing everyone on a daily basis. However, thanks to FB we get to keep up with everyone pretty regularly. It has been nice to get into our own "home", though. Audree was initially pretty hesitant to crawl out of the living room. She was used to our room at RMHD. But within a few days, her curiosity got the better of her and now she crawls all around the apartment. She is also "cruising" along the furniture. It is so cute to see her tiny little legs, wobbling ever so slightly, as she gains courage to take those itsy bitsy steps. Audree's condition is still stable. She has not had any improvement in heart function, but she has not had any decline either. This past week I received some FANTASTIC news. Back in February I discovered some groundbreaking research conducted by Dr. Sunjay Kaushal, in which he and his colleauges were studying the effectivenss of using a child's own stem cells to improve their heart function. After a few weeks of searching, I was able to get in touch with his office. Last week his assistant called to let me know that Dr. Kaushal is just a few months away from having FDA approval for his method of using a child's own bone marrow stem cells to treat cardiomyopathy. Once they get FDA approval, Dr. Kaushal wants to discuss the possibility of treating Audree!!!! With Audree's situation there was no treatment option. Our only hope (medically speaking) was a heart transplant. This new research and the pending FDA approval for this new treatment option is a wonderful ray of hope for Audree and for our family! Please pray that this is the miracle that we have been waiting for! This week has been a busy one for us. Aunt Aline came to stay for a few days. We love having her here to help and to visit. She is that Aunt who can make even the simplest activities fun and is always there to lend a hand. Also, my parents (aka Grammy & Papa), Mark, Mark Aron and Avaree are here visiting for Mother's Day weekend. We have had a wonderful time! Mark and the kids gave me the best gift - a beautiful framed picture of all 3 of the kids! We are truly blessed to have our 3 angel babies. Thank you all for the continued prayers and the encouraging words.

Ecclesiastes 3: 1-11 "There is a time for everything,and a season for every activity under the heavens: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace. What do workers gain from their toil? I have seen the burden God has laid on the human race.He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end."

Audree Gomez Day at Hil's Burger

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In like a Lion

First transplant clinic appointment in March

March 5, 2012
From Kimberly: Just left Audree's weekly transplant appointment. We had to come in today, instead of Thursday since she has another speech therapy (swallowing/feeding) appointment this Thursday. We had some positives and negatives with this visit. Audree no longer needs her feeding tube! I had changed the nipple size of her bottles to a 4 and she is doing so well with her feedings! Audree has also continued to gain weight! She is now 14.96 lbs and 68 cm! Her bloodwork went smoothly, and her other organs look very good still. Before she got her shot of "liquid gold" (synagis) they used a numbing cream on her leg, to help with the pain - that shot is a beast! Now for the not so good side... Audree's blood pressure and BNP level have been consistently elevating. Both of these things indicate that her heart failure is worsening. We will have an ECHO in 2 weeks. Also, the Cardiologist increased one of her meds to 3.0 ml a day to try to bring her blood pressure back down. The max is 3.2 ml a day so we are getting very close to having to make some changes. Please continue to pray that we will receive a miracle! Complete healing or a new heart. Thank you!