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.
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