Thursday, August 13, 2009

Ups and Downs Continue

After Brianna was born our life as we knew it completely changed. For a while we were on a horrendous roller coaster ride that seemed to level off for a while. We felt like we were flying "under the radar". No more. This last month and a half has been quite stressful. Brianna has turned blue three times which means three hospital stays, 3 EKGs, 2 EEGs, 3 chest x-rays, not to mention other tests. The latest episode was this evening. Now we are up to 4 hospital trips in 6 weeks. The past couple of days Brianna has been lethargic and very sleepy and she has been very pale. Today, after an outing with Ashley, we came home and put Brianna down for her nap, at which time we had noticed that her coloring had been off for a couple of hours. So, after coming home and laying her down, we hooked her up to the pulseoximeter to measure her O2 and heart rate. O2 was good but for the first time, her heart rate was 68-75. Not a good feeling for us. Normal rates are 105-110 with a sleeping rate in the 90's. I continued to monitor the rate for over an hour and it stayed low. Too low. We started to become quite nervous. I woke her up and tried to get her heart rate up but as soon as it went up to 100 or so, it immediately dropped back down to the 70s. We were very, very worried. This low heart rate thing is new to Brianna and to us.

Background: After turning blue last week when a Ph Probe test was being administered, the hospital ran some tests. Yesterday I received a call from the Pulmonologist that was very upsetting. The tests administered last week show extreme pulmonary hypertension in Brianna's lungs. We were advised to meet with the cardiologist immediately. The Nissan Fundoplication procedure we had hoped to have done (to stop the reflux coming up and flowing into her lungs) cannot be done now due to the severity of the pulmonary hypertension. At least not until a cardiac catherazation is performed. I then called Brianna's cardiologist and heard heart-breaking news. The cardiologist told me directly that he was sorry but there was nothing else he could do for Brianna. I felt like the rug had been pulled completely out from under me. Where do we go from here? Just sit and watch our daughter die a slow death from her body's inability to draw enough oxygen due to the high pressure in her lungs? Here it was, the moment we have heard about from other T-18 families, doctors reaching a point to where they feel there is nothing else that they can do. Is it because he does not think she would survive the cardiac catherazaion and does not want the burden of her death....I don't know. All I know is we now are at a place where we truly have to decide when enough is enough. How much do we put Brianna through? Are we being selfish? What is her quality of life at this point? What will it be in the next month? Do we find another cardiologist, etc. I could go on and on.

Decision: Meet with a new cardiologist at a new hospital, meet with Brianna's entire team of docs and go from there. I wrote the above posting late last night but wanted to re-read it today when I wasn't so tired and emotional. Today, Brianna has been her usual smiling happy self. We found out that the low heart rate was ok. It is associated with heart disease. It might happen again and it might not.


  1. I can't believe what you are going through! I am so sorry for your family and sweet Brianna.
    Please give her hugs and keep us posted on what you find out. It is helpful to all of us who may or could go through these same issues. Especially concerning drs.

  2. I hate that you are going through this. It breaks my heart. You and Brianna are in my thoughts and prayers. I'm wishing the best for her.

  3. How frustrating and upsetting it must feel to have docs says there's nothing more we can do.

    I remember writing this in one of my blog posts:

    There are 2 types of pulmonary hypertension:
    1)Primary: no known cause, no treatment,eventually fatal.
    2) Secondary: secondary cause to respiratory or apnea issues, if these issues are treated, it can be managed.

    May be good to ascertain with docs what Bri has.

    Praying for docs who will find some answers to all the question marks now. Hoping you are able to stay strong and focused for little Bri.

  4. i am so sorry you guys are having to go through this. i hope the new cardiologist can give you some more information. give bri a hug from us. we will be keeping your family in our thoughts.

  5. Brenda,

    Thanks for keeping us updated with such detail, echoing what has been said before.. your roller coaster ride is helping those of us who may face similar issues for our child.
    In all that you do for Brianna, make sure you take care of you too.

    Keeping Brianna and you all in my prayers.

  6. Brenda,

    {{Hugs}}} to all of you. You have all been through so much. I think a second opinion is an excellent idea. When we thought Zane had a diaphragmatic hernia and the surgeons refused to perform surgery based on other kids with T18 dying under their care, we were prepared to go elsewhere.

    I am keeping all of you in my prayers, praying for healing and positive resolution for Brianna.


  7. Dearest Brenda,

    I am so sorry to hear what you are going through with Brianna. I know how horrible it feels when the Doctors say "There is nothing more we can do." I know how agonizing it can be to keep making decisions and wondering if it is the "Right One." I Wish I could wrap my arms around you - please know you are all in my prayers, asking God to surround Brianna and your family with love, peace and healing. It is in these moments when our faith is truly tested.