Apnea, Seizures, and Hemorrage -Oh my!

Well, we are back in the PICU.  Alexis had been doing so well post-op that we were moved out to the peds floor.  Her condition quickly worsened after a day, she just got real uncomfortable and was miserable in pain.  Requiring morphine again.  Then she had a cluster of apneas, lasting about 40 minutes. Basically, she stopped breathing 17 times in 40 minutes! Then once we were able to wake her up, they stopped.  The ICU Dr. observed each one and she was concerned Alexis was having seizures. 3 hours later she had another cluster and we were admitted straight back to PICU. An EEG and CT-scan were ordered and the Neurologist, that saw her in the NICU after her first episode of seizures, was consulted.  The CT reveled one of my fears.....there was another hemorrhage on the left side and a larger one on the right, needing an MRI for a more detailed confirmation of the bleed.

after the EEG and getting a sponge-bath

 Right now we are waiting on the results from the EEG, she didnt have any apneas during the 'study' but it will show brain activity.  We have decided to wait on the MRI and do that as a follow-up, outpatient.  Right now in order for them to do the MRI they would have to intubate her (breathing tube) and put her under, b/c her apnea is so severe she cant just be sedated.  However, the brain hemorrhages are not on a "vital" part of the brain and the Neurologist and intensivist have said, there is really nothing they will do at this point anyway.  They would not operate and there is no medicine to get rid of it, so really the MRI would just be to confirm what the CT scan has shown and get a closer look.  So we made the decision to not do the MRI at this time.  She needs to recover from surgery and we are not sure she could handle another breathing tube at this time, I just dont see the reason for putting her at a higher risk.  Once she gets a little stronger and can be sedated with less risk....then we can do the MRI.  They will follow her and check back with CT scan to make sure it hasn't gotten worse and most of the time these things resolve themselves.

Her goal right now is to not have any apneas or seizures and to tolerate the increase in feeds (through the g-tube) and to be comfortable enough with the Tylenol and not require any morphine (it tends to make the apneas worse).  We have been given the option to go home sooner than average b/c we have the apnea monitor, feeding pump, suction, and I am trained and have unfortunately been in practice of doing Infant CPR. Also, they are setting us up on oxygen.  Lexi will not have to be on oxygen 24/7 but if she continues to have "cluster apneas" then we are to put the cannula on her to assist her breathing and bring the apneas to a halt.

Miss Alexis is such a tough little girl.  God gave her the best personality and disposition for all the trials she will, and has already had to, face.  I have seen God's miracles first-hand, and will continue to give him all the glory.  He has always sustained us.
                                     "but those who hope in the Lord
                                          will renew their strength.
                                 They will soar on wings like eagles;
                                  they will run and not grow weary,
                                     they will walk and not be faint."   Isiah 40:31

to quote a friend.... "Still, through everything, this brave strong beauty flashed a smile at the camera. If she can smile through this, what do we have to complain about? Basking in His blessings this morning....."   -M. Gomez