Susans Blog

Because Every Child Matters

I apologize for not updating you all. I think I’ve been in a kind of spiritual slump. Frustration. Unanswered prayer. Questions. Doubts. Helplessness.

Pretty much what David says in Psalms 13 : 1-4

1. How long wilt thou forget me, O LORD? for ever? how long wilt thou hide thy face from me?
2. How long shall I take counsel in my soul, having sorrow in my heart daily? how long shall mine enemy be exalted over me?
3. Consider and hear me, O LORD my God: lighten mine eyes, lest I sleep the sleep of death;
4. Lest mine enemy say, I have prevailed against him; and those that trouble me rejoice when I am moved.

Over the past week and a half since Philip’s discharge from the hospital, he has had a horrible time with his breathing when he sleeps at night. He struggles with each breath, and we have struggled in watching him and not knowing what to do to help him. We change positions, sleep with him in the rocking chair, everything we know to do. We discussed his breathing with his doctor on Friday. They have been monitoring his oxygen level at night while he slept for the last 2 nights. His oxygen levels range from 78% to 100% (normal above 92%). 

I’ve just felt so helpless. I didn’t know what to do, how to help. He is so tired, because he is not getting to sleep at night. How long can this go on? How many tears before there is an answer?

Our church family gathered together around Philip to pray for him on Sunday morning. Though I hoped for a change on Sunday night, he continued to breathe with difficulty all night long.

I do not know the answer to Philip’s breathing struggles. I do not know how long he will have to breathe like this. But ONE thing I know:

Philip has a call on his life. God reminded me of this again with the verse in Psalms 118:17 shortly after his recent flap surgery, “I shall not die, but live, and declare the works of the Lord.” I know my God has seen every tear, heard every prayer, and listened to each cry. Weeping may endure for the night, but JOY does come in the morning. I trust His way. I cannot understand it, or explain it. (But I’ve been there before, too). Please pray that we are led in the right path and follow the plan of God which is the best outcome for Philip. 

God bless,

Susan

Do you know that chorus?

When the oceans rise and thunders roar
I will soar with you, above the storm
Father you are King over the flood
And I will be still, know you are God.

Yesterday Monday, August 11th. After I prayed in the morning, the words ‘be still and know that I am God’ kept reverberating in my soul. I began singing this song. We sang it in church a couple of weeks ago. When we returned home after church, I tried teaching it again to Philip and Sara. Philip asked me, “What does that song mean?” So I tried to explain how in our hard times when we can’t see anything but the water, that God will carry us so that we soar above our problems. We have to be still during those times, and just understand who God is. 

I had forgotten that conversation with Philip until this morning. If you read in II Chronicles 20:17, King Jehosaphat was advised to stand still and see the salvation of the Lord. These words brought me much peace. The doctor extubated Philip on Monday. He had been on the ventilator now for 5 days. They did the extubation in the operating room just so that in case he does not breathe well the surgeon would have had to undo the surgery that was just performed on his palate last Thursday.

Before he left me to go the operating room, I asked him if he remembered this beautiful chorus. He nodded his head that he did. So I reminded him again of what the song means, and though it is hard to understand why, we just have to remember God is our Father and He knows. And that’s enough.

You may have already learned that the procedure only took 5 minutes. Philip was “mad” in an angry sense and was ready to extubate himself! Trust me, he had no difficulties breathing!!! I’ve included some before and after procedures.

Hopefully he will begin taking in food by mouth today. I am anticipating that he will be home before Thursday.

Thank you again for your love, support, prayers, text messages, emails and phone calls. You have no idea how valuable they are for us! God bless each of you, Susan

I’ve said before that I don’t believe in coincidences.  There is only Providence.

Before Philip’s surgeries, we have been teaching him a Bible verse.  For instance in 2005 with his jaw surgery, he learned Hebrews 13:5 “I will never leave you, or forsake you.”  I still remember telling Philip that pappa and I could not be with him during the surgery, but what did Jesus say?  And he responded, “I will never leave you, or forsake you.”  Those were the words he said as he left our arms and went to the operating room.

After his ear surgery in January, he was quoting Joshua 1:9  “Be strong and ‘have a good courage’  for the Lord your God is with you!”  He even shared it with his nurse, as she was pulling out his IV line.

Before his mouth surgery on Thursday, we taught him John 14:1  “Let not your heart be troubled, ye believe in God, believe also in me.”  After surgery on Thursday, the surgeon called us and told us that Philip was waking up fine without any difficulty, however, when he returned to sleep, his airway became blocked off.  Obviously he could not return home in such a state, so our surgeon and anesthesiologist felt it would be better to re-insert the breathing tube.  Philip went straight into the intensive care unit. 

Though Philip has always had some trouble coming out of anesthesia (due to his abnormal and small airway) he did not have trouble with the last two surgeries.  We had hoped this was due to his growth and the enlarging of his airway.  The surgeon felt that the difficulty with his breathing yesterday may partly be due to his airway size, the flap surgery, the anesthesia and his small jaw size.  All of it combined contributed to his obstruction of his airway.  The hope is that with time, medicines to reduce swelling, and rest as he remains on the ventilator over the weekend, the doctor will be ready to remove the breathing tube on Monday.

I went through shock, I guess.  It was almost like a dream or nightmare.  This was supposed to be a simple one hour procedure, two or three day recovery, and go home.  I was reminded, “Let not your heart be troubled, believe in God, believe also in me.”

God is good, all the time and all the time God is good.

Thank you so much for your prayers, text messages, emails, love and support. 

God bless you,
Susan