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.