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.
