Friday, August 28, 2009

All About Zak

Zachary James was born on March 31, 2005 at 11:15am in the Aspirus Hospital in Wausau after a long wait! He weighed 5lb 1oz and was 18in long, what a little peanut! Mom was only 36 weeks, but her water broke 27 hours prior to delivery. Due to failure to progress Zachary was born by c-section.

At birth Zak was not able to breath out of his nose so he was transferred to St. Joseph Hospital in Marshfield, WI. Once in Marshfield the doctors discovered that Zak had choanal atresia, the nasal passages did not develop and he would need surgery to correct it. At 5 days old the surgery was a success; the doctors drilled a new airway and used plastic stints to keep the passage open so it could heal. For three months he had stints in his nose to keep the airway open and allow him to breathe freely. On July 12th, 2005 Zachary had the stints removed and has been breathing wonderfully since!
We also learned at birth that Zak had a heart Murmur that the doctors will continue to monitor. It did get worse around 6 months old, however it has become significantly better since. He currently has a grade 20 murmur and has been stable for a few years. Last week he had another echo since the doctor thought it was even better. We pray as he grows he maintains a low grade murmur. We know he will always have one due to the anatomy of the heart. We are thankful he has been out growing it.

Zachary has also had some feeding issues along the way. At first we thought he was not gaining weight well because of him not breathing at full capacity with the stints in his nose and he had so much drainage from the surgery. Later we found out he had sugar in his stool so we believe he was intolerant to some form of sugar. He was put on special formula which helped a little, but he still would not eat enough and seemed to be in pain. We continued to search for answers. At 9 months Zak was diagnosed with severe GERD, which basically meant he had real bad acid reflux or heart burn. We first started with medicine and tried other options like going to the chiropractor. Nothing seemed to be the answer. After a night in the emergency room and being transferred again to Saint Joseph’s for a possible bowel obstruction (later found to only be sever gas) we finally decided on a solution. Since all of the medicine did not help and he was in so much pain that he would have "blue spells" from holding his breath until he passed our or fainted, it was decided that surgery was the only option. On Dec 16th, 2006 the doctors completed a nissen fundoplication surgery. They surgically wrapped the stomach around the esophagus to create a muscle so acids and gasses could not cause heart burn. They also placed a g-tube (feeding tube) into his stomach to help gasses to escape. The tube is also used to add nutrients directly to his stomach so he is able to gain and maintain weight better. The surgery made a huge difference in his personality. He began to smile and laugh more and started eating better, though he still doesn't eat much at any one time he now eats 4 meals a day.

At 7 1/2 months Zak had eye surgery for Ptosis, a condition in which under-developed muscles do not allow Zak’s eye lids to raise properly. The surgery connected his eye brow with his eye lids so now he has control over the lids and can see much better. It was a very minor surgery and we were home the same day. After surgery he looked like a whole new boy with a whole new outlook on life! On follow up check ups with the eye doctor we were told Zak would need glasses since he was severely nearsighted. After going to a conference held by the state for families with visually impaired children, we learned it may be beneficial to have acuity testing done. We went to UW-Madison, where we were told Zak was considered "legally blind". We continue to have him wear his glasses and work with the doctors to determine how he uses his vision and what this will mean for Zak. They suggested having an MRI to get more answers as to why.
During the MRI we learned the eye health was normal, however we found out that C1 and C2 (the first 2 vertabraes in the neck) were fused together and growing inward causing his spinal cord to be compressed over 50%. After doctoring local we met with a Neurosurgeon in Iowa that was able to perform the seven hour surgery. After 1 year of recovery in a neck brace Zak finally got the OK to be brace free! Zak has gained so much mobility from having the surgery. He is even weight bearing on his arms which he could not do because of the amount of pain.

Zak has also had 2 sleep studies since he has a difficult time breathing. It was determined he has obstructive sleep apnea and he will be fitted for a c-pap mask to wear at night. After further doctoring we learned he needed to have his tonsils and adenoids removed. This was done in August of 09. His sleep apnea has gotten significantly better, when he is healthy we are not to worried, how ever when he is ill we still monitor him closely.
Zak has also had some additional minor surgeries for ear tubes, removing an abscess and cutting his frenulum. As he gets older we spend less time in the hospital. He continues to get stronger and have less episodes of pneumonia.

Zak also has an unbalanced Translocation (46, XY, der(3)t(3;6)(p24.2;p21.1) which we continue to learn about. Doctors believe this will cause Zak to have some mental and physical disabilities, but we are determined to give him the care and education he needs to be all that he is able to be. To date we have only learned of one other family in the world with a similar unbalanced translocation which we have been able to speak with a few times.

Zachary is a very good boy and a joy to be around. He completes us! I don't know what we would do with out our little miracle! He has started life with a few challenges but he has always remained strong as I know he will throughout his life.

With strong family support we are able to give him the care he needs!

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