October 23, 2006

Dear Friends,

The Lord has been truly merciful to our Alison!  His blessings of mercy and healing are evident each day in Alison’s continuing recovery!  Thank You, Lord!.  Alison’s care at Woman’s Hospital continues to be stellar; her doctors, nurses and specialists show their concern and love for our little girl in how they handle her.  To our Lord and His capable assistants at Woman’s Hospital, thank you from the bottom of our hearts.

Monday night brought an unexpected development for Alison.  She had just been checked in (her vital signs checked, her mouth and vent tube suctioned, her diaper changed, her hand—where it was chemically burned—treated and redressed and she had a good clean scrubbing).  She checked out fine, so Alison’s primary nurse left to go drink a soft drink.  At approximately 8:00 PM, Stephanie and I noticed that our daughter was making a funny noise from her mouth—a hissing sound.  Another nurse happened to come by to see how Alison was doing.  The nurse looked at Alison and thought the hissing might be because she was extubated from the ventilator.  Stephanie went to find a respiratory therapist.  The RT came in and listened to the hissing noise and Alison’s chest and said that Alison had indeed extubated herself (she had worked the vent tube up too high in her trachea where its’ effectiveness was greatly reduced). 

The RT called Alison’s attending neonatologist and asked what she would prefer they do regarding the vent tube. 

The RT told the doctor that Alison was holding her own, so the doctor decided to fully extubate her and hook her up to a high-flow nasal canula to see what she would be able to do on her own. 

During the time it took to prepare Alison for the nasal canula, I had the joy of holding an oxygen mask near Alison’s nose to give her additional oxygen and look at her beautiful little face without any tubes protruding from her mouth.  Yet, we had no idea how long Alison had been extubated and breathing with minimal assistance from the ventilator.

During this time, Alison’s heart rate and oxygen saturation never changed.  She stayed steady, and Stephanie and I watched as Alison’s little chest moved up and down as she breathed on her own.  Praise be to the Lord!  Stephanie and I quietly said a praise to our Lord for our being able to witness such a blessing.   It was the first time we had seen our daughter without any tubes or IV’s invading her small body since her birth.  Thank You, Lord!  Approximately two hours after we noticed that Alison had extubated herself and one and a half hours after she had been placed on the nasal canula, the RT came in to retrieve a blood sample to check her blood gasses.   Unfortunately, Alison’s CO2 came back high (104) and she had to be reintubated.  She obviously wasn’t ready, which was disappointing for us.  We would have to wait until her doctors, nurses and respiratory therapists were prepared and felt Alison was ready to change her breathing care.

Tuesday, Alison’s doctors checked her over and reviewed her blood gasses from Monday night and made the decision that if her blood gasses were good Wednesday morning, Wednesday would be the day. 

Yet, due to the high CO2, her doctors decided to use CPAP (Continuous Positive Airway Pressure) instead of a high-flow nasal canula to help improve Alison’s chances of remaining off the ventilator. 

Saturday, Sunday, Monday and Tuesday, Alison’s morning CO2 had stayed in the 70’s (not great, but not bad).  Wednesday morning, Alison’s CO2 was 50.  We believe the Lord was once again preparing Alison in concert with her doctors.  Praise be to God!

Wednesday, at 3:15 PM, a small army of RT’s came in to make the change.  First, they prepared the nose piece for Alison and secured it in place below Alison’s nose.  Second, they pulled the trachea tube and then secured the air pressure tubes onto Alison’s nose piece.  Finally, they changed the settings of the ventilator from vent to CPAP.  Thus, Alison’s new journey began.  Thank You, Lord!  Stephanie and I watched with guarded optimism throughout Wednesday evening and Thursday morning (due to the unplanned attempt on Monday night).  Yet, Alison and the Lord had a surprise in store for Stephanie, her doctors, nurses, RT’s, and me by having a Thursday morning CO2 of 49.  Friday morning’s was 54.  Praise be to God!

Since Alison has been moved onto CPAP, Stephanie and I have stayed with Alison at night because the high-pressure air flow through her nasal passages tends to aggravate her and makes it difficult for her to calm herself enough to go to sleep.  Wednesday night was tough for Stephanie and Thursday night was tough for me.  We received very little sleep, as Alison was up fussing.  Friday night, Alison and Stephanie were able to sleep as the Lord blessed Alison with His peace and rest.  And Saturday night, Stephanie’s mother, “Ma-mere,” and Alison enjoyed a mostly peaceful night together.  Praise be to the Lord!  Please pray that the Lord would continue to bless Alison with His peace and rest.

Friday, Alison’s neurologist came to check on her and to test her progress.  Alison’s clinical responses were as they should be and her neurologist bragged on her continuing improvement.  Thank You, Lord!  Please continue to pray that the Lord would bless and protect Alison’s little brain.

Saturday, Alison’s attending neonatologist began to wean Alison’s pressure support (the minimum amount of air that is continuously forced into her lungs to help keep them inflated).  If Alison continues to show improvement, the doctors have said that it is possible she could be moved from CPAP to a high-flow nasal canula later this week.  This would be less invasive because the air moves with less pressure, which in turn does not tend to aggravate her near as much.  Please pray that the Lord would bless Alison’s lungs with special strength and healing this week to help facilitate the move from CPAP to a high-flow nasal canula.

Once Alison’s doctors are able to wean Alison off CPAP, they intend to start a slow adjustment in her diet.  Alison is still on Portagen, but her doctors plan to start adding her mother’s milk to the Portagen in small increments. 

The doctors want to insure that Alison’ lymphatic system is fully healed so that her lymph nodes do not start leaching breast milk into her pleural spaces again. 

Please pray that the Lord would continue to heal Alison’s body wherever there is a weakness.  Please pray that the Lord would bless Alison’s lymphatic system with complete healing so that she can begin to be fed her mother’s milk.  Please pray that the Lord would continue to bless Alison’s medical team with His wisdom and insight.  Please pray that the Lord would continue to give Alison’s medical team a special love and concern for her.

This has been a big week for our Alison.  The Lord’s hand of protection has been evident as these many weeks have passed.  Monday, at 2:21 PM, Alison will be eleven-weeks old.  Thank You, Lord!  Our Alison continues to lose the fluid that has plagued her third space.  She now has a cute little chin and a neck.  Thank you, Lord!  Your prayers for Alison and our family have been sweet incense to the Heavenly Father and He has graciously answered them.  Please continue to stand in the gap for our precious angel.  From our family to yours, thank you for all you are doing on Alison’s behalf!

Blessings to you,

Langston and Stephanie

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