Not yet....

Hi all,
Will's heart procedure has been postponed until Tuesday of next week this is due to a fever he developed overnight and his support level of oxygen and nitric was to high. Overall, he had a great day. His oxygen level had well above the target percentage of 87. He varies between 92 to 98. They have reduced his oxygen support from 80% to 50%. His nitric support has been reduced from 20ppm to 16ppm and they are continuing to go down. When we left the hospital he was resting and smiling at his moma. Thank you Denise Russell for your encouraging words and instruction. Thank you Schlonda Phillips for your testimony of God's faithfulness. Thank you Sheila Young for the scripture. Thank you Valice and Fredericka for your words of encouragment. Thank you Belinda for your early morning prayer. Anita Hill, the presence of the Lord is always in your reply, thank you. Irene Chavez, I feel as you do, everything that Lil' Will go through and overcome encourages and strengthens me also. I know that everyone on this list prays and gives us some kind so I'm not making light of what this body is doing through the Lord. Thank you Stacey Meredith for your understanding and support of Sequita. What you do for her you do for Lil' Will and me and we both appreciate you for that. I close with this. In the first email I mentioned nine gifts of the Spirit from 1 Corinthians 12. There are seven more gifts which are foundational gifts or motivational gifts mentioned in Romans chapter 12
1. Prophecy
2. Ministry (Servant)
3. Teacher
4. Exhorter (Encourager)
5. Giver
6. Leader
7. Mercy
We use these gifts every day to some degree. Some are more stronger in each of us than others. These gifts are not just locked up within the walls of the church building. We use them when we interact with our family, friends, and co-workers. Just because I have been quoting from scripture don't make it religious, what I have been quoting is designed to produce life. I realize our group are from different backgrounds and denominations and that is the beauty of our connection with one another. At the moment Lil' Will is the common denominator that draws us together in prayer and thought to the one Source that brings life and that is God the Father and His Son Jesus.

Eph 3:20 Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us,
Eph 3:21 Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.

Standing on the promises of God!

Hi all,
I know I sent out an update last night but I'm here with Will every morning until Sequita gets here, then we stay until the night nurse come in or later, if necessary. Anyway, when I got in this morning Will was resting and his oxygen level was varying between 89 to 92. This is good for him, the lowest the docs want to see this number is 87. The Lord instructed Sequita and I not to become institutionalized. We are not to rely just on the numbers that tell us Will's status at any given time. If we were to do that then we would not know how to function when we get home. I'm reminded of Samson. When his birth was announced, his parents asked the angel of the Lord, what will be the boy's rule of life and what will be his work? This example indicates that we should always seek wisdom and guidance from the Lord about our children. One thing that crossed my mind about Samson, is that there are pictures of him as if he was some huge muscular man, if that was the case, why did people inquire where his strength came from? Hear is another thought, we think his strength came from his hair. His strength actually came from His obedience from birth.Sequita followed a strict diet and medical check up procedure from the time she knew Lil Will was conceived. She would not deviate from the plan that she had established for the healthy birth of Lil' Will. She laid a foundation of obedience in him from conception and even as he lay here in the hospital, God has instructed us to teach him obedience by listening for His voice and obey His command. To some this may seem strange, but our children are never too young or too old to hear the voice of the Lord.They tell us that down syndrome children are exceptionally strong. Could it be that they hear the voice of the Lord and obey without reservation? Just a thought.I told my wife that Will is a promise from the Lord, like Isaac was to Abraham and Sarah. When God told Abraham to go and sacrifice Isaac, Abraham did not go up the mountain in fear. He went up in faith, fully persuaded that what God had promised He was able to bring to past. Abraham was so convinced that God promised Isaac to him, that even if he had to sacrifice him, God would have to raised him from the dead. We know that Lil Will is a promise from the Lord. If God could cause a 90 year old woman and a 99 year old man to bear children and sustain them, what more would he do for us. I have a friend in Seattle and we were talking, and I said to him. God could easily and miraculously heal Will's kidneys and his heart, but He choose a process for us and we are ok with that. We are convinced and fully persuaded that what God had promised He is also able to perform. Clinically, at least twice, Will had to have oxygen breathed into him to maintain his physical life. In accordance to God's promise, God breathe life into Will and has been and will continue to sustain him to fulfill the destiny in his life. As you all know through my wife's email that we have had some dark moments but through the network which God provided for us, He always had a light to remind us of the Light.Well enough of that. I'm going to close with this update on Lil Will. His oxygen level is now between 92 and 95. His heart rate and blood pressure are in normal range and he is resting. Tomorrow is a day of answers and decisions. His procedure will take place between 1:00pm and 2:00pm. So you will probably hear from us again tomorrow night.

Num 6:24 The LORD bless thee, and keep thee:
Num 6:25 The LORD make his face shine upon thee, and be gracious unto thee:
Num 6:26 The LORD lift up his countenance upon thee, and give thee peace.
Num 6:27 And they shall put my name upon the children of Israel; and I will bless them.

Lord prepare our place....

It has been one busy week. In the last 7 days, we have moved from the 12th floor (PICU) to the 5th floor (Renal(kidney) back to the 12th floor, back to the 5th floor and now we are on the 11th floor (NICU/Trauma ICU). Whew! If Lil Will were flying Southwest, he would have one free flight and be working on another! It can be so frustrating to move from floor to floor BUT we are not in control. Although, on this past Sunday we shared "our" plan for Lil Will with his physician group. Leave him on the 12th floor until his Peritoneal Dialysis is able to dwell the target of 120cc's per hour, when this is done, move him to the 2nd floor (Cardiac), repair his VSD, recoup there, move him to the 8th floor (post cardiac care) and finally back to the 5th floor to teach us how to do the cycler machine (if needed) and then we can go HOME! Each of them laughed at us and somewhat agreed BUT if he is not what is deemed critical then he cannot remain on any of the ICU floors (2, 11 or 12). Unfortunately, here at Children's there is not a step down unit, its either ICU or a floor room. So, that is where we are now, let me share with you how we got here.A week ago Sunday, Lil Will was still on floor 12 and we were waiting for orders to be written to move him to floor 5. As you know floor 5 requires one of us to be with him at all times. So, although we were excited to move to floor 5, we were a bit anxious as well. YES, we know he would be with us 24/7 otherwise, BUT you must all remember, he has lines and tubes so it can make it difficult to hold him and is at times a bit scary because we don't want to pull on his PD catheter, that could be disastrous. We move to floor 5 on Wed, everything is going well. His PD is filling and draining great, no leakage. He is smiling, cooing and keeping us up all night. His daddy is the BEST, he stayed up with him so I could lactate and sleep. His daddy had the AM shift and I had the PM shift. Worked out really well. Saturday at 5 AM, his blood pressure was low, well, low for floor 5 standards. They gave him some volume (basically saline), the more volume you have will help raise your blood pressure. It didn't raise it to there standards so, you guessed it, up to floor 12 we go. Floor 12 is where we have spent the majority of our stay so the docs and nurses are happy to see us and we are comfortable with them. They take cultures to make sure he is not brewing some sort of infection. All of the cultures came by negative. Remember, if you are not critical, you cannot remain on floors 2, 11 or 12....you guessed it...we moved back to floor 5 on Monday. Back on floor 5, things were moving along at a great pace. Our night nurse was Stacy, she had been Lil Will's nurse just a few days ago, we were happy to see her. She thinks she is bad luck and that every time she has him, he has to move back to 12. We assured her she was not, we appreciated her thoroughness and the care she has provided for our munchkin. Monday night, Lil Will had 6 different times where he dropped his O2 sats below 90 and sometimes below 80 but he would always recover himself. He usually drops his sats when he has a poopy diaper or is agitated about something, mainly his pacifier is missing. I left he and his daddy around 545AM to head to work, all was fine, he was resting and sucking his pacifier. The Holy Spirit told me to pack up my belongings before I left, I didn't question him, I just did it, although I did wonder what was up? William told me later that day, he knew something was going to happen too. I am at work and around 1030 AM call William to see how things are going. He tells me, "Lil Will had to be re-intubated." WHAT?!??! Apparently, around 9 AM, Lil Will was crying, his daddy changed his diaper, he usually calms down after that, he didn't this time. William tried his pacifier that didn't work and he sat him up, that didn't work. Lil Will stretched his body out and stiffened up and dropped his sats to 48, when they drop below 70, the monitor flashes red and makes a different sound to alert staff. They tried to help him recover, to no avail, so they called CODE BLUE. Code Blue means patient needs to be resuscitated, urgently. William said the roomed filled with 20 or more people in seconds. They had to bag and mask him vigorously, give him vecoronium(paralytic med) and moved him to the 11th floor Trauma ICU. Once there, they had to re-intubate him to allow the ventilator to breath for him. They placed him back on Nitric Oxide at 100% oxygen. I know this had to be a scary time for both of my William's but big William says he just stood back as all of this was taking place and talked to Dad and listened for Him. Our Father, our Dad, our maker and creator who holds the world and all of us in His hands was in the midst of the chaos in Lil Will's room. He breathed life into our angel on 12/28/08 at 645AM and He breathed it again on 3/31/09. When William told me this, I immediately wrapped things up at work and headed to the hospital. The drive over was a long one. I prayed, I screamed, I cried and I waited to hear from God. The only word I heard from Him, is I have this under control, trust me. I called my parents, sometimes, although I am a grown woman, I need the comfort that only your parents can give you. Each of my parents has their strengths when ministering. And I needed to hear what they both had to say to me. I felt much better after that conversation. Today, they are continuing to wean the Nitric Oxide he is at 20 PPM, and they will begin weaning at 1 PPM every hour until they get to 10 PPM at which they will wean 1 PPM every 2 hours. He should be off the NO machine by Friday morning and on to extubation. He has to be suctioned alot but the biggest challenge has been keeping him sedated and still. He is so strong and moves around. They have re-taped his ET tube so he doesn't self extubate. Our little man is such a fighter! We are so proud of him and love him very much! We tell him this everyday to make sure he doesn't forget it. His PD is working great. He is close to 11 pounds, his nutrition and incision healing is awesome! We know God healed him and continues to heal him. His Renal doctor said today that this was a probably a blessing in disguise and that he thinks Lil Will should remain in ICU until he dwells 120. We said aha! That is what we said to the ICU team and the weekend renal fellow. Thank you GOD!! God said, my kids can't tell the doctors what to do and where Lil Will should be but I can and He did! Dr. Clapp (Lil Will's cardiologist) has scheduled his cath for 4/9, this will access the pressure in both sides of his ventricles in preparation for his VSD surgery.I must admit I was scared to death yesterday but I know God has it all under control. Several weeks ago after bible study, we went in to our pastor's study and I had a major meltdown. He followed the Holy Spirit's prompting to find one more person to pray with us. The Holy Spirit led him to Sister Scholonda and she prayed, well, the spirit prayed a prayer through her that I know God sent to her. She prayed things that only William and I have ever discussed, never had shared with anyone. I know without a shadow of a doubt that God was in the midst of us, there with us, holding our hands, touching and agreeing with us. He was speaking to us through His annointed vessel Scholonda. Father, we heard you that evening and continue to listen to you daily. When man says no, we know you say YES! When man says Lil Will's condition can be fatal, we know you say, I AM the great physician! We thank you Father.Our prayer focus for this week:1. Successful wean of Nitric Oxide machine.2. O2 sats above 903. Successful extubation.4. Remain in ICU until cath lab on 4/9.5. Continued PD dwelling at appropriate levels with no leakage.6. Remain infection free and normal labs.7. Discharge home!!!A few weeks ago, my mom shared a scripture with me that touched her heart many years ago that led her to begin her journaling. The scripture is- Habakkuk 2:2-3, Write down the revelation and make it plain on tablets so that a herald may run with it. For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay.I have written it down and am waiting for God's appointed time. Journaling is something my mom, sister and I have done for years. It is therapeutic and often prophetic. There have been many times I have gone back and read things I have written in my journal and do not remember writing them. I believe the Holy Spirit intercedes during my times of journaling. My mom often goes back to her journal to write PRAISE reports for the things God has done or delivered to her or someone else. If you have never tried journaling, maybe you should start. The word in Habakkuk tells us to write it down and wait for the revelation. Try it, you will be amazed at the answers God will reveal to you.We are in room 263. Our number is 214-867-1263.Thank you all for your continued prayers. We love you and are thankful everyday that each of you are in our lives. You each touch us in different ways and we appreciate you.I have attached a picture we took on Sunday. It is my mom, Lil WIll and myself. I always heard my girlfriends talk about how it feels for your child to look at you with so much unconditional love in their eyes. I absolutely know how they feel now. To see how my sweetie pie looks at me just melts my heart. To watch his eyes move as he follows my voice is priceless! I am so blessed and thankful to God that He has trusted me with his most precious gift.

Day by Day

I know it has been several days since I last sent an update on Lil Will. Well, let me share with you some things that have been going on with Lil Will's mom. These have been a rough two weeks. I have been dealing with al ot of emotions, mostly sadness and frustration. Sadness, as I long to bring my angel home, home to his own crib, to be able to hold him without having to maneuver wires,tubes, to be able to feed him with a bottle NOT thru a tube in his nose, to have those sleepless nights because his days and nights are mixed up and frustration because it seems we take two steps forward and then four steps backwards. It has been difficult. The other day I was talking to Jonda (she has been Lil Will's nurse from the first day he was admitted) and has become our friend. She reminded me that we sometimes "awfulize" things. We make it the worst it can be in our minds and run with it. I feel like I was in that place last week. I am thankful that I didn't stay there. You hear people say daily take one day at a time, live each day like it was your last, tomorrow is not promised to you. Let me ask you, how often do we really do it? I am guilty, I don't always live in the moment. However, during this past week, I began to do it and let me tell you, it has been the most amazing experience. I feel less stress and anxiety. Doing this has really allowed me to enjoy every moment with Lil Will, in the NOW! I cannot control tomorrow so why worry about it. Living in the present has made this week pretty much stress free. If you don't live in the present, try it, it is great! It's hard to do, if you can't take one day, do smaller increments of time, 5 mins, 15 mins, 30 mins, you get the picture!Lil Will is resting well and doing great. Most of you do not know but on 3/10, Lil Will had another surgery to replace his PD tube. It all started on Sunday, 3/9, when his nurse discovered he was leaking from the Peritoneal Dialysis site AGAIN! Remember the last time it leaked, he was put on CVVH - Hemodialysis and that was NOT a good experience for him (or us!). Well, since that is not an option, he had to go back into surgery to have a new PD placed since this is the only way to dialyze his kidneys. Surgery went fine. The surgeon was able to successfully place another PD catheter. She tested it twice with 60 cc's of fluid to make sure it would not leak and it worked fine in the OR. Now, he can't go too many days without a means to dialyze his kidneys so the PD will not be able to heal for as long as the surgeons would like. On Wednesday(3/12) afternoon, they began using the PD with 30 cc's of fluid. And thanks be to God, there is no leakage and as of today, they increased it to 40 cc's.! The doctors believe the leakage comes from Lil Will's lack of nutrition. This is not allowing scar tissue to form internally around the PD catheter. So, they have increased his feeds and fortified it with more calories to help him gain weight.Something we have noticed is every time his heart surgery is mentioned, something happens to prevent it from happening. He gets an infection or his PD site leaks. God what are you trying to show us or tell us? I know He is healing his heart. God has shared with me that He is in control and He is healing Lil Will not man.Oh, yea, Lil Will was successfully extubated on 3/13! No more breathing tube! Praise God! His little cry was so cute, its amazing, what having that tube in for 5 weeks can do to one's voice. Let me tell you, his lungs and his cry are back to full force as of today! He can now go back to receiving speech therapy. He loved his pacifier prior to being re-intubated but not so much now. He is slowing getting used to it again. He is sitting up twice a day for 5 minutes. He holds his head up pretty good. He is pretty exhausted after he sits up so he naps a lot! The physical therapist are working with his range of motion in the morning and then we do it in the afternoon. He's strong and very head strong! (Gee, I wonder who he got that from?!) If he doesn't want to be picked up, he stiffens up his body, it is the funniest thing!Lil Will is back on the 12th floor PICU but this weekend he is being moved to the 5th floor, this is the kidney floor. These are regular rooms like you and I would stay in if we were in the hospital, which means he will not have 1 to 1 care any longer. What this means for us is one of us has to be with him everyday, all day. HIs nurse will come in hourly to drain and fill his PD. A tech will come by to check his vital signs every 4 hours. We will be 100% responsible for changing diapers, mixing formula(I have been doing this for the past two days, I enjoy it!) etc..basically getting to do the things we would do at home amidst all the wires and tubes. So, William is going to stay with him until 1130 AM and I will be with him from 1130 AM until Will gets off work and we will take turns spending the night. My FMLA is exhausted but my employer is working with me and Will is now using his FMLA. Thank God for favor!Milestones happening with Lil Will:This past Saturday, I finally had the opportunity to get hand prints and footprints of Lil Will. They are so cute! I also have a locket of his hair, not on purpose, some tape got stuck in his hair. I had to cut it out and I almost tossed in the trash, Melinda was there and she said, "No, you need to save that!" Thanks Mel!! =) Lil Will actually chuckled for the first time yesterday, he was asleep and I saw his shoulders moving, not like I had seen them move before, and he smiled really big. It was so sweet, of course, I did NOT have the camera or camcorder ready. Ugh! I have to be ready, lesson learned.Prayer Focus:1. Weight gain.2.. Healing and scar tissue to form around the PD catheter preventing leakage.3.. Kidney functions return to normal.4. Remain infection free.5. Normal daily lab results.6.. Discharge to home.Update on Ministry:God is still working with me on the vision of the ministry He has placed on my heart. He is sharing with me ideas on what to name the ministry. He has placed other individuals in my path who have a similar passion. I have spent time talking to chaplains, social workers and nurses at Children's who are eager to share advice and hook me up with others with like goals. In speaking to the social workers some of the items they are in need of is adult clothing. I have already begun collecting clothes, so if any of you are in need of cleaning out your closets, remember me! I am putting together a list of items that are needed and I will share once I have completed it. He is working with me on some other ideas that He is not allowing me to share at this time. I have to be obedient to Him.Again, we thank you for your continued prayers. As always, we pray for each of you, that you will remain in His care and under His covering. Today, try to live in the moment, have no regrets, if you will decide to do this, you will see your life change in ways you never imagined.

Lil Will's Heart and Kidneys

We are requesting that you all set apart some time this weekend to talk to the Lord about Lil' Will's kidneys and heart. We need to hear from the Lord about this. We need revelation from Him concerning our son. Sequita and I have faith, but we are constantly under attack and our faith take hits and sometimes cause us to bend but not break. We need to hear from the Lord through our Family. When you pray for us, wait for God to answer you concerning us and then send us His reply. We will pray for each of you and do the same. This is a time of strengthening, this is a time to stand like never before. This is a time to warfare and bombard the gates of hell in our lives, to tear down strongholds in our minds and in our hearts. We all need to hear from God. When you take this time to pray send what ever revelation you receive from the Lord to the whole group. This is not a time to second guess whether you are hearing from God but this is a time to settle in your heart once and for all that you know His voice. We are an army that is advancing the kingdom of God in every area of our lives. Lil Will represent something in all of us. Ask God to reveal the weakness in our heart and in our minds and then ask Him to strengthen both. Pray for Will as if you are praying for yourself and wait and see what the Lord says.This is not a coincidence that we are all connected together. Pray family. Pray.
Eph 3:14 For this cause I bow my knees unto the Father of our Lord Jesus Christ,
Eph 3:15 Of whom the whole family in heaven and earth is named,
Eph 3:16 That he would grant you, according to the riches of his glory, to be strengthened with might by his Spirit in the inner man;
Eph 3:17 That Christ may dwell in your hearts by faith; that ye, being rooted and grounded in love,
Eph 3:18 May be able to comprehend with all saints what is the breadth, and length, and depth, and height;
Eph 3:19 And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fullness of God.
Eph 3:20 Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us,
Eph 3:21 Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.
Eph 1:16 Cease not to give thanks for you, making mention of you in my prayers,
Eph 1:17 That the God of our Lord Jesus Christ, the Father of glory, may give unto you the spirit of wisdom and revelation in the knowledge of him:
Eph 1:18 The eyes of your understanding being enlightened; that ye may know what is the hope of his calling, and what the riches of the glory of his inheritance in the saints,
Eph 1:19 And what is the exceeding greatness of his power to us-ward who believe, according to the working of his mighty power,
Eph 1:20 Which he wrought in Christ, when he raised him from the dead, and set him at his own right hand in the heavenly places,
Eph 1:21 Far above all principality, and power, and might, and dominion, and every name that is named, not only in this world, but also in that which is to come:
Eph 1:22 And hath put all things under his feet, and gave him to be the head over all things to the church,
Eph 1:23 Which is his body, the fullness of him that filleth all in all. We love you all and thank God that you all are a part of our lives.

Praise!

I just wanted to share a brief PRAISE report on Lil Will. Yesterday, the on call physician was not pleased that in the last 24 hours his nurse had not reported any urine output. So, she decided to have Chris, (his nurse yest.) place a foley catheter so they could actually track his urine output. In a 12 hour shift, Lil Will's urine output was 48 cc's which is approximately 1 cc per kilo per hour, which is just borderline to what a normal newborns urine output should be. PRAISE God! We know this is small but we have to praise God for small things! As I was doing my morning devotion, I am studying a book called, "Walking with the Women of the Bible". The lesson I was reading was titled, Trusting God One More Time, in the lesson, it reminds us that faith is like a physical muscle, it is developed and strengthened with use. Each time you trust God as you face seemingly unbearable, unusual, circumstances, your faith increases. So, if anyone is facing a difficult situation or issue in their lives, reach out to God, turn toward the unknown and the unseen and watch your faith grow! A great analogy! So, today we are continuing to trust God in all our circumstances especially, Lil Will's urine output. God is showing us everyday that He is working within Lil Will's body, healing him, one second, one minute, one hour at a time.I hope each of you is having a wonderful Monday! Have you smiled yet today? If not, do it, think of it as exercise for your face!

2 months old.....

Well, our little munchkin is 2 months old today! WOW! Every day he is getting stronger and stronger. There is not a day that goes by where a nurse or physician does not comment on how strong he is or how much of a fighter he is. We are thankful that he is a fighter.

We must praise God for several days of good urine only diapers. He has had 26, 20, and 24 cc urine diapers on a couple of days this week. Yea! No one can still say for certain why his kidneys are not functioning at full capacity. He does urinate so the anatomy of his kidneys are good. His early sonogram showed normal anatomy and no cysts or other anomalies. One nurse mentioned it could be a filtering issue or it could be all the medicine he had given to him when he was born. Only God knows and we pray daily that He will return Lil WIll's kidney functions to normal.

In the last update (2/24) I mentioned that the cultures remained negative, no infections. Well, we received some news on Wed, he has some sort of resistant bacteria strand on his ET tube(breathing tube). They started him on antibiotics and all will be okay. But, the Infectious Disease docs/dept have put him on contact isolation. What this means is anyone who enters his room must wear a gown and if you are going to touch him you have to wear gloves. He will most likely remain on contact isolation for another 10 to 14 days. The good news is as soon as he is extubated, the infection goes with the tube at least that is they way it was explained to me.

Lil WIll continued to be on the CVVH machine until mid day Wednesday. They begin the Peritoneal Dialysis and it has been working well. They were able to finally remove the CVVH catheter in his neck after they are certain there are no issues with his PD on Thursday. One less IV on Lil WIll!

He was finally weaned off the Nitric Oxide at 3AM on 2/27! I was up at 4 AM, as I am most days (a mothers work is never done, I have to get up every 3 hours to lactate! VERY exhausting BUT completely worth the sacrifice! ) and usually call to check on Lil Will. When I called the nurse told me he had dropped his sats to the mid 60's when they turned off the NO but was now back in the 80's. I was a bit anxious when she told me this but she said they were not going to do anything, they were going to ride it out and see what he would do. Well, he did it, a few hours later, his sats were 100! William had been asking the Lord, when will they let Lil Will show them what he can do, well, the Lord answered him. During this storm, we have found that alot of how much they allow Lil Will to do really depends on the nurse. If he./she has the patience and confidence in their skill level AND, let's face it, is NOT lazy, they usually will let him do it until it becomes dangerous or they need to medically intervene. Thank God for sending us a patient nurse on 2/27!

He has been having issues with his blood pressure being a bit low. The doctors tell us it is related to the pain meds he is still on. They want to turn off the Fentanyl since they started him on Methadone yesterday. They use methadone to help with any withdrawals he may have from the fentanyl. Crazy huh? He did have a bout Thursday night where it went to high so they had to give him some med to bring it down. Friday, he had an EEG to make sure he did not have a seizure. The doc doesn't believe he did because when his BP spiked, he was resting well, He believes it is because they stopped giving him another pain med. And like adults, if a medicine that you are used to having is suddenly stopped it could cause your BP to go up. We know he did not have a seizure but the docs have to do their jobs. God is in control!

He is back on full feeds at 20 cc's per hour or 16 ounces per day. They are increasing his caloric intake so they can put some weight on him before he has his heart surgery. His doc mentioned again yesterday that his heart is fine and that is not the concern right now. Currently, the concern is weaning his O2 on the vent, getting him extubated and maintaining his PD. He is breathing over the vent so it shouldn't be too many more days until he is extubated. I can't wait, haven't been able to hold him in over a week!

Most healthcare professionals are nurturing and caring by nature, probably why they went into the field. During Lil Will's hospital stay we have encountered angel after angel. Each angel has had their specific task from God when taking care of our son. I am sure they did not know what their task was related to Lil Will but God always shows us during their shift what their task was. It may have been a nagging question we had, they answered it, without us even asking. My, how the Holy Sprit works! Or they make have spoken a word, like today is going to be a blessed day or God is in control. Those words made us feel at ease when we left Lil Will for the night. It is nice to know your child is being taken care of by a child of God! This has brought me comfort during this time. I am very thankful to God for giving me this peace.

We just arrived home from the hospital and Lil Will is starting to open his eyes. They are a bit puffy and you can see him try to open them. He opens one of them, we call him Popeye when he does that. He will become more alert as they continue to wean the pain meds. His eyes just look sleepy but beautiful. It is such a wonderful feeling to say something to him and see him open his eyes or move in response to your voice. One of the best feelings I have ever had. They weaned his oxygen level to 35%, room air is 21% so we are getter closer and closer every day. In God's time, in God's time.

Our scripture focus for this week is James 1:2-4, My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. For me this week has tested my patience. Lil Will retained a bit of fluid this week and since he was on CVVH they were not taking fluid off, they were just leaving him balanced. This frustrated me and I found myself questioning God. Why did he have to go on CVVH? Why are you letting him get on fluid overload again? Why is he still intubated and now has an infection? Why? Why? Why? I know we are taught not to question God. But, we are all human! The answer the Lord gave me was patience, my child and He sent me to James. Be patient. While the physicians are changing orders and doing things to Lil Will, I AM in control and am making things perfect and complete. Lil Will is in my care. After I asked those questions of the Lord earlier this week, Lil Will started to improve. If we can all remember that we are not in control and to have patience, our God will work everything out for our good!

Prayer focus:
1. Extubation
2. Kidney functions normal.
3. Infection free, normal labs and gases.
4. Patience for all of us who need to work on it! =)

May each of you have a blessed week. Do not stress over the economy, keep your hands in the Master's hands and He will direct your paths. You woke up this morning, clothed in your right mind and spirit, so you should be thankful. Someone laid down last night and did not make it to this morning. So, before you start to complain about anything...remember it could be much worse. Glory to God!!