Braden has been through a lot, and we are working diligently with the team of doctors to figure out how to best care for him. While this trip was necessary, we are working on a proactive plan, to keep us from living at the hospital!!We will be sent home with some new medications... one to help reduce the salivary secretions, and therefore his aspirations to the lungs. We are only on a quarter-strength dose, this is good, as it is a medication that can lose effectiveness over time, and at this level, Braden is actually able to "hock a loogie" on his own for the first time, so this is promising. We aim to take him off that medication, once the seizures have been controlled, as his past has proven he CAN handle his own secretions and swallow. The next step in controlling the secretions, if the medication is no longer effective, we can use botox injections into the main salivary glands - that is good for three months at a time, but we will see how it goes.
Unfortunately, Braden has developed a few more kinds of seizures, some of which are prolonged and can cause oxygen desaturation in the blood. We are still giving the zonegran time to build up in his system, as it takes a few weeks to take full effect. It does give him the unfortunate side effect of not being able to sweat, so we have to more closely monitor his body temperature and give doses of tylenol as needed to bring it down. However, a low-grade fever is better than a kidney stone!
We will also go home with atavan, to deliver when Braden has his labored breathing attacks. Should the atavan have to be given a few times, we know that is a sign to take him to the hospital. Our hope is that knowing how we can control his body temp with tylenol and wet rags, and having the atavan to help slow his breathing episodes, we should be able to stay out of the hospital for longer periods of time. At this time, we must concede that some of his issues are simply nuerological in nature, and cannot be treated with medication... we can only treat the symptoms that arise due to the nuerological 'misfires' in the brain.
We continue to love on our little angel... it's like looking into the face of God himself. The nurses always comment about how beautiful he is and how sweet our baby is... we know that God has blessed us with this child, and we pray to learn the lessons he was sent here to teach. Thanks for keeping us in your prayers during this frustrating time for mommy and daddy as we continue to search for the right path.
Kodi, Brad, Baby B
2 comments:
What a precious gift the Lord has blessed you with. We always wonder what He wants us to learn from the hard times, remember to look into Baby Bees face and in the good as well and hold them tightly.
Your family is constantly in our prayers. Continue to hold on to that faith even when you think you can't hold on any longer. He is there with you all the time.
Love you,
Debra Rose(your St. Andrews family)
I am glad that you have one another to lean on during this ... time of life. Of course, Kodi I am glad that you are my sister and I feel honored to say that. Even though, you are going through all of this, you manage to find time to listen to me complain about my minor discomforts from the cancer meds, or how I would like to just give up some days. Thank you. You, Brad and Braden- plus Paxton, are my inspiration not to give up. Love you all so very much~
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