This Christmas was the most unique one that we have had. We had the usual time of giving gifts and eating but we had one special present that was decided upon at the last minute. Each winter, PCH creates restrictions that do not permit children under 12 to visit patients. This is mostly due to the contagious nature of RSV. We knew that the restrictions were going to happen any day so we wanted to have Micah see Zachary one last time. (Pretty sure that it was more important to us than him.)
Becky went into the NICU to prep the scene. We dont want Micah to see all the cords and tubes hooked up to Zachary because he has no frame of reference to process this information. I then took Micah by himself to see Zachary.
Micah just looked at his little brother and then asked, "When is he coming home?"
Becky, with tears in her eyes, "As soon as the doctors are done fixing him."
I then took Micah and Josiah to my parents for Christmas lunch while Becky stayed behind. While we were at the hospital Zachary's lungs were not keeping up by removing the necessary CO2. The doctors decided to take him off the breathing tube and put him on a nasal cannula. If he cannot handle the cannula, they would have to sedate him and put him on an oscillator ventilator. This would totally take over and if his lungs were to try to breathe on their own, it would counteract the oscillator. This would also mean that he could not be held (no bueno).
Well, he did GREAT!! Since Christmas, he no longer is needing a ventilator to breathe. He was weaned off it for a week or so gradually so that his lungs could get back in the groove. He does have a constant flow of air thru the cannula but he is the one taking the breaths! Praise God!! This is better than the doctors were hoping to achieve. This has allowed his trachea surgery to be delayed (for now).
We had a second surprise with Zachary. The GI surgeon said that Zachary can be introduced to small amounts of feedings. They put a feeding tube into his stomach and started on 1mL/hr and have gradually increased the quantity. Currently he is at 10mL/Hr. This is 4 weeks ahead of schedule. After the last GI surgery, the doctors didnt want to start feeds until his GI tract was COMPLETELY healed. Well, according to the last X-ray, the gut looks good. I have never been so excited to see poop before! Only a parent would be so happy!
Last major event happened last Friday afternoon. A few of the doctors that will take part in his upcoming surgeries met to discuss Zachary. If the surgeries are successful, we are looking at staying at PCH another six months (~2 for growth and then ~4 months for recovery). The longer Zachary can wait for the first surgery the better as he will be bigger. There is also a likelihood that they could combine three surgeries into one. The challenge then will be for Zachary to recover.
They also determined that PCH medical staff has never had to work on a patient with the all the diagnoses that Zachary has. The staff has worked on patients with complex heart defects and patients with a complex trachea but not in the same patient. The doctors are reaching out to other experts across the country to see if they have worked on a patient like Zachary. They wanted to find out among other things what the morbidity rate is for these surgeries for patients like Zachary. One recommendation that the doctors had was to meet with the palliative care team just in case the rate is too high.
Friday night was tough. Who wants to sit with your spouse and develop a list of criteria that once met, means that the medical staff will just manage your son's pain until he dies?
Is it a coincidence that I was reading Romans 8 this weekend? I think not. A few verses stuck out to me:
"For those who live according to the flesh set their minds on the things of the flesh, but those who live according to the Spirit, the things of the Spirit. For to be carnally minded is death, but to be spiritually minded is life and peace." Romans 8:5-6
There is something beyond comprehension about the peace that God is covering us. We know we serve a GREAT God! We know that if Zachary dies, he will be having a great time in Heaven. We know that without a doubt, we would see Zachary in heaven. We have peace knowing that we have a relationship with Jesus Christ. Do you?
Micah just looked at his little brother and then asked, "When is he coming home?"
Becky, with tears in her eyes, "As soon as the doctors are done fixing him."
I then took Micah and Josiah to my parents for Christmas lunch while Becky stayed behind. While we were at the hospital Zachary's lungs were not keeping up by removing the necessary CO2. The doctors decided to take him off the breathing tube and put him on a nasal cannula. If he cannot handle the cannula, they would have to sedate him and put him on an oscillator ventilator. This would totally take over and if his lungs were to try to breathe on their own, it would counteract the oscillator. This would also mean that he could not be held (no bueno).
Well, he did GREAT!! Since Christmas, he no longer is needing a ventilator to breathe. He was weaned off it for a week or so gradually so that his lungs could get back in the groove. He does have a constant flow of air thru the cannula but he is the one taking the breaths! Praise God!! This is better than the doctors were hoping to achieve. This has allowed his trachea surgery to be delayed (for now).
We had a second surprise with Zachary. The GI surgeon said that Zachary can be introduced to small amounts of feedings. They put a feeding tube into his stomach and started on 1mL/hr and have gradually increased the quantity. Currently he is at 10mL/Hr. This is 4 weeks ahead of schedule. After the last GI surgery, the doctors didnt want to start feeds until his GI tract was COMPLETELY healed. Well, according to the last X-ray, the gut looks good. I have never been so excited to see poop before! Only a parent would be so happy!
Last major event happened last Friday afternoon. A few of the doctors that will take part in his upcoming surgeries met to discuss Zachary. If the surgeries are successful, we are looking at staying at PCH another six months (~2 for growth and then ~4 months for recovery). The longer Zachary can wait for the first surgery the better as he will be bigger. There is also a likelihood that they could combine three surgeries into one. The challenge then will be for Zachary to recover.
They also determined that PCH medical staff has never had to work on a patient with the all the diagnoses that Zachary has. The staff has worked on patients with complex heart defects and patients with a complex trachea but not in the same patient. The doctors are reaching out to other experts across the country to see if they have worked on a patient like Zachary. They wanted to find out among other things what the morbidity rate is for these surgeries for patients like Zachary. One recommendation that the doctors had was to meet with the palliative care team just in case the rate is too high.
Friday night was tough. Who wants to sit with your spouse and develop a list of criteria that once met, means that the medical staff will just manage your son's pain until he dies?
Is it a coincidence that I was reading Romans 8 this weekend? I think not. A few verses stuck out to me:
"For those who live according to the flesh set their minds on the things of the flesh, but those who live according to the Spirit, the things of the Spirit. For to be carnally minded is death, but to be spiritually minded is life and peace." Romans 8:5-6
There is something beyond comprehension about the peace that God is covering us. We know we serve a GREAT God! We know that if Zachary dies, he will be having a great time in Heaven. We know that without a doubt, we would see Zachary in heaven. We have peace knowing that we have a relationship with Jesus Christ. Do you?
Here is the first picture of us as a family.
Blessings to your family of God's peace and presence in your hearts and home as he does His healing work in Zachary.
ReplyDeleteWe love you all! We think of your family often and pray God's continued peace and healing! -The Steinmann Family: Nathan, Courtney, Hunter, and Turner
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