September 27, 2006
Dearest friends and family –
Greetings again from the NICU, where there are more twists and turns than a roller coaster. I find it difficult to write an update today because we have had so many starts and stops and ups and downs in the last few days. This makes it hard to remember where to begin. The Lord has remained merciful and faithful through our storm and we are watching a continuing upward trend in Alison’s condition. We continue to thank our Creator daily for the immense blessing of our little Alison.
She is such a beautiful miracle!
Last Saturday, we started the day with poor reports regarding Alison’s x-ray, oxygen gas, and blood work. We were concerned because the tests indicated that she may have an infection and that her lungs were once again struggling. In response, the doctors increased her ventilator support and started a new round of antibiotics. She received another blood transfusion because of her low hematocrit levels. The intervention seems to have helped; that afternoon Alison pinked up nicely and her doctors were able to wean the ventilator to 21% oxygen for the first time. That is the same level as room air! What a miraculous and unexpected achievement. We truly serve a miracle working God!
On Sunday morning, Alison’s beautiful pink appearance began to turn red and her heart rate and temperature began to rise. The doctors and nurses quickly ran tests to see if she was having an allergic reaction to the blood she had been given the evening before. She was given Benadryl and Tylenol to help reduce the symptoms. The neonatologists took her off the medicine that was intended to help clear up her chest fluid because they were concerned it could be contributing to the allergic reaction. All of the tests came back inconclusive; they are still not sure of the origin of her reaction. However, Alison seemed to respond well to the Benadryl. On Monday morning, the redness had lessened and she is now left with a rash-like appearance. The doctors believe it may be a strep infection and are continuing to treat it accordingly. Please pray that little Alison will be strong enough to fight off the strep infection. Pray that she will be protected from satan’s continued attempts to scar her beautiful little body.
A cardiologist was consulted to see how Alison’s heart was responding to the potential stress. He gave us a glowing report and said her heart looked better than ever! Her blood flow to and from the heart and lungs were great and all signs of the persistent pulmonary hypertension that was present at birth are gone. Please join us in praising our Heavenly Father for total healing from that dreadful disease.
The physical therapist continues to work on improving Alison’s range of motion. She commented on how much the swelling has gone down and how much better Ali is moving. We are noticing that she is moving her hands and arms more. Monday, she turned her head toward me completely on her own. In fact, Alison is behaving more and more like a newborn each day. She is developing her own sleep/wake patterns and she is increasingly alert during our interactions. It is a miracle and a blessing from our Lord to be able to interact with our little one!
Throughout the weekend and early this week, Alison’s chest tube has gone through a cycle of putting out minimal fluid to putting out 120 cc’s in a 12 hour period. As this cycle continues, Alison’s swelling increases and decreases accordingly. The neonatologist ordered the medicine designed to stop her fluid output to be restarted on Monday morning; but before the drug could be administered, the doctors collectively decided to discontinue the treatment. The pediatric surgeon was consulted and advised that Alison should be restarted on her feedings to see what happens with the fluid in her pleural space. She has requested a CT scan of Ali’s abdomen to rule out anything obvious that is causing the continued fluid buildup.
Tuesday morning, Alison was seen for the first time by the pediatric pulmonologist. He reviewed her case and stated that her history is not consistent with chronic lung disease. He believes it may be a problem with her lymphatic system. He has requested a CT scan of Alison’s chest. The scan of her chest and abdomen will be done Wednesday and we should have some idea of the results over the next few days. If the results are inconclusive, Alison may have to have further testing--including a biopsy of her lungs.
The neonatologists have been extremely open with us and have stated they really have no definitive clue what is going on with little Alison. Each doctor has his or her own theory, but nothing has been completely agreed upon. Over the next week or so, Alison will be followed closely by the pulmonologist, pediatric surgeon, and her neonatologists to develop a game plan. Ultimately, Alison’s doctors are hopeful the plural effusions will clear up on their own or that they will be able to determine a definitive diagnosis and plan of action. Please pray for these wonderful health professionals that the Lord will be with them and give them His resources of knowledge. Please pray that they would seek the Lord for wisdom in dealing with our daughter. Please pray that the Lord would bless Alison with healing regarding her continued fluid buildup.
The fluid buildup continues to be a stopping point in our Alison’s road to recovery. It is a concern to her doctors, as her treatment cannot be advanced until this situation is remedied. We continue to collectively rely on the Great Physician to give us strength, patience, wisdom and mercy. Our Alison does not seem to be bothered by all that is going on around her. The Lord is clearly holding her and giving her His peace. He has and continues to be merciful in His dealings with us! Praise be to our Lord! We continue to kneel before His holy throne and wait upon His will to be revealed. Please continue to stand in the gap for our precious daughter. From our family to yours, thank you for your continued kindness and prayers.
Blessings to you,
Stephanie and Langston
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