The A-Team

We are officially drawing the proverbial “line in the sand.” We will have 1 final procedure for Abilene on Friday and should none of these tests prove anything, we are no longer going to pursue this “mystery” illness. Abilene is doing great and actually showing improvement! We are so blessed to have such a sweet and happy little girl. She is in no stress and we see no reason to continue to subject her or us to any more tests. We love her so much and we already feel robbed of some of her infancy that we do not wish to continue. It has been one crazy ride but we are officially done. We are leaving this (whatever it is) in God’s hands. He is the great Healer – what more could we do?

Abilene’s heart has been cleared. It is not the cause and/or contributing to her symptoms even though the Cardiologist would like to followup on her ASD when she is a year old. Fine.

Her CT scan showed collapse of her posterior lungs but it is far improved from her original CT scan. She may be outgrowing this? The pulmonologist is just as puzzled as we are. She is glad that Abilene is doing better but curious as to why her lungs look the way they do. So, we agreed to have her airway more closely examined via a scope on Friday. She will be sedated once again and submitted to this exam in the OR at Riley. Should this final test give us an actual diagnosis, then we will move forward with that. Otherwise, she is just a happy, sweet little girl who is growing and beating all the odds – so we will leave this alone.

Prayers for her continued healing would be greatly appreciated. It has been a trying time for all of us. I believe God has been leading us to this point for a reason…time to let go and give it to Him completely. Even in my daily devotional last night (just minutes after Aaron and I had this discussion) it talked about “doing the best you can but giving your kids to God.” It doesn’t get much clearer than that! I heard God’s voice and now I am trying to obey.

Sorry for my lack of posts…life is…well, crazy to put it lightly. I have many things I wish to put on here for you all to read and understand where we have been over the past couple months. It has been an interesting road but I am tired and ready to SLOW DOWN.

– Be still and know that I am God. ~Psalm 46:10

Miss Abilene at 6 weeks!

Saddest picture ever! This is her all wrapped up for her sleep study of which she only slept 35% of the 3 hours. Poor little baby. It broke my heart to see her like this.

Notice the hair. It was STUCK like this! The “glue” they used for all the leads from her sleep study did a number on her do. I made sure we washed up in the room:)

This was a favorite spot for the boys when they came to visit us at Riley. It was great to escape from the testing and just go play with my boys.

Now that my computer is up and running and I have gotten us pretty well settled here in OKC, I will be getting more posts up! Thanks for waiting!

Yeah! We are released! We are going home!!!!

Wednesday was not a good day. I was excited to get up in the morning and get the day going as we were to be released! I got everything packed up and the great waiting game began. I had to wait for the pulmonologist to come around and tell me the results of all the tests and give me the plan of action and send us on our way. I was happy to be going home because sleeping on a couch in Abilene’s room isn’t exactly quality sleep. Docs usually made their rounds by 9 am and when the clock struck 10 am and still no doctor. I asked my nurse to look into it. She did and said they were still making rounds. Then it was noon and then 1 pm. I made it very clear at 2 pm that if I hadn’t seen the doctor by 4 pm, I was discharging us. We were going to leave. Dr. C came to see me at 3 pm. She apologized and then started in on the findings.

Abilene’s echocardiogram, bronchoscopy and sleep study all came back negative. Her chest CT also was read as negative but it did show some collapsing of the posterior lung tissue and a diffuse haziness throughout both lungs. Nothing super worrisome but not conclusive to determine anything either. All common causes of tachypnea were ruled out. Now they have to look for the less common causes. So the next course of action was to perform a lung biopsy. My jaw hit the floor. This is not a simple procedure. She would have to be sedated. She would have an incision made in her chest and pleura and the tissue removed. Then she would be placed in ICU until she recovered from the procedure which could be a couple days or weeks. It just depends on her ability to recover from the trauma of the surgery. This was horrible news. We had 4 options:

1. Do nothing. Get discharged and move to OKC and wait this out.

CON: Her body may fail her at any time and/or she will suffer from confusion (which means she will not be able to control breathing/eating properly and she will aspirate).

2. Move to OKC and have the procedure done there.

CON: I have NO help with the boys during this.

3. Wait until we get back from OKC to have the procedure done.

CON: She may not be thriving by that point. This problem could progress.

4. Get the biopsy done as soon as possible.

CON: Aaron has to go to OKC by himself and we figure out a way to join him after she is better or Aaron cancels starting the new job altogether.

Aaron and I both were very much against the biopsy. Having to have her sedated and her pleura punctured is just not good for a baby so young. I just couldn’t consent without seriously praying about it. Our doctor was very kind to allow us to sit on the decision overnight and get back with her in the morning.

Sit/stew about it is what we did all night long. We did some internet research and have some more questions for the doctors and will most likely resolve to have the procedure done here at Riley while Aaron goes off to OKC.

So now it is Thursday morning. I get to meet with Dr. C and we discuss some of the questions we have. I get some answers. I still don’t feel like I can say “go ahead” and fortunately Dr. C had contacted her dept head who was coming into the office and wanted to meet to discuss our case. She is from North Carolina and recently came to Riley. She might be able to offer another perspective and possible alternative treatment plan. So we put the decision on hold until that meeting takes place. In the mean time, Aaron and the boys come up to Riley to hang out with me and beans. Dr. C returns and we are able to hear the results of the meeting with Dr. D (the dept head) together. It turns out that due to our delay in response some of the lab results from Abilene’s bronchoscopy sample started to come in. There is a bacteria culture that is GROWING! She has a bacteria in her lungs!!!! With this news, the biopsy is put on hold. Abilene will be put on an antibiotic and start steroids to help her expand her lungs. They will also be ordering a feeding study to see if she is aspirating milk (which could be the cause for the bacteria in her lungs).

I cannot tell you how much I appreciated all the prayers from everyone. We know that this test result coming in when it did was God answering our prayer for wisdom not to open her up. The lung biopsy is no simple procedure and we REALLY didn’t want to do it unless we ABSOLUTELY had to. Thank you Lord for showing us the way!

Abilene was put on a course of antibiotics, steroids and Zantac for reflux. She does not like the Zantac but will easily take the other meds (which are more important anyway!). Now we wait and see how she responds. We are also going to have a feeding study done to see if she can protect her airway.

Friday was awesome. She definitely has started to respond. Her respiratory rate has dropped into the normal. She is in the 60s when excited and 40s or lower when sleeping! This is normal!!! We are so excited that the steroids are working! She is so happy too! This little lady has been smiling and playing games with me. I even got some shots of her smile on camera! I notice a HUGE difference with her. Granted she is becoming more mature every day but I honestly think she feels better to not be panting.

On Friday morning, Dr. C came in and let me know that she is noticing an improvement and to let me know the feeding study will be done today.  I get word that the study will happen at 10:45 am. Poor beans can’t eat 4 hours prior except for just a little to get her through until study time because they need her hungry. Let’s just say Abilene didn’t much care for that. She wanted to eat when she wanted to eat. But thankfully, she was hungry enough to drink from a bottle (which she has had NO practice) and did it well! She protected her airway perfectly although she did have a little bit go up into her nose/nasal cavity which explains what Dr. M saw on the bronchoscopy:) We are getting somewhere! The plan as of Friday was for us to stay the weekend to monitor Abilene’s progress and make sure she has no reaction to the meds. We would be released on Monday. That was doable. We could still take off to OKC as planned and follow up with the pulomonlogist out there. As of Friday afternoon, Abilene was doing so great that our release time had been upped to Sunday! Yippee!!

Saturday morning: Now it is Saturday and I met with Dr. T who hasn’t met Abilene yet. He listens to me and I ask to be released today. She is doing AWESOME. She is eating. She is gaining weight. She is happy as all get out. She is breathing NORMALLY!!! Let’s go home! Dr. T sees no problem with that. He just wants to check with everyone else (nurses and Dr. P) to make sure they agree that she is truly doing great. I am super stoked that we may be home today!! And that Abilene is responding to the drug treatment and that we did NOT have to send our baby girl for surgery. Seriously, this big of a change and turnaround is nothing short of a miracle. God’s intervention is written all over this and I know it is because we have been surrounded by loving prayer warriors who were petitioning on our behalf  – THANK YOU!!!

I will keep you posted on our departure:) In the mean time, enjoy these pictures.

**pictures will be forthcoming as my computer is acting silly!

After writing to you all last night I realized something. I am truly blessed beyond measure. Abilene is NOT experiencing a life-threatening event. We are not having to stay at this hospital because she will be dealing with some catastrophic problem. Yes, her issue is serious but nothing like the little boy who is missing his colon and will never live a full life or the other little boy I saw recovering from major brain surgery. These are just 2 of the many kids here. I even feel guilty that we are taking up a room here when there are so many other much more severe problems. I am exceedingly thankful that Abilene is “fine” by comparison. We just need to get to the bottom of this breathing issue so she can live a full and vibrant life without restrictions. God formed her and knows what she needs and we pray for the wisdom and courage to get her the care she needs.

I love my family so incredibly much. I despise being away from any of them…right now I am actually all alone (haven’t been alone in about 4 years!). Little Miss Abilene is having her sleep study done. I will get a picture of what that looks like…it was so hard having to help get all the leads put on her and them wrapping her up like a mummy.  Gotta go…Beans woke up and she is doing a SLEEP study!

I am sitting here in Abilene’s hospital room. We had our appointment with the pulmonologist and it landed us an admittance to the hospital. Abilene’s respirations should be around 40 to 50 but she runs about 100 to 120. That is not good. She does have good oxygen saturation, so she is getting the O2 she needs but she has to breathe a whole bunch to get it. We are currently working to find out why. She had a CT scan performed tonight and tomorrow she will have a sleep study performed and on Wednesday she will have a bronchoscopy. We still are waiting to find out when the EKG will be performed. The tests are being run to find out what exactly is going on. She could have lung disease, a heart problem or “floppy” cartilage that is blocking her airway.

I am tired. I am discouraged. We are leaving in a mere 7 days and I get to spend the next 3 of them at Riley Children’s Hospital. Not exactly what I had planned. But I know God is in control. We are doing the right thing by getting her into the BEST place possible with the BEST doctors and right here near home. It is just tough to do and be away from my husband and boys especially when I have TONS to do…like PACKING!!! Oh well. It will happen when it happens. Please pray for all the testing to be done quickly so we can be released and sent home. Also, please pray for a good outcome/results and to have this resolved quickly or at least be something easily treated out in OKC.

I need to sleep…thank you all so much for your prayers.

Thank God we got into a pulmonologist at Riley on Monday! God is good! Hopefully we will get this resolved or at least have a plan of action before we leave for OKC.

Thank you for the prayers!