Aug 4 2012

Going Home!

Anna
Going Home!

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


Aug 4 2012

Whirlwind days

Anna
Whirlwind days

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!