Christmas And Update on Luke

I hope everyone had a wonderful Christmas yesterday! I was able to go home for a few hours both on Christmas Eve Day and Christmas morning. We opened some gifts both days since we had all of our family exchange gifts from both sides of the family. We also were able to attend a Christmas Eve candlelight ceremony at Acts 2, which was very special since we usually are not in town on Christmas, and because this is our last Christmas in Oklahoma. Christ has used the people of this church to help us grow in our faith so much these past 6 years, and to help us through so many difficult times. We were running late (surprise) so we ended up in the front row. We let the kids each have their own candle too, so you can imagine what a spectacle we were! :) I am just thankful we were all able to celebrate Jesus' birth together. We, of course, wished Luke was with us, but the reality is that we wouldn't have taken him anyway with the crowd and his prematurity.
Highlights from the kids gifts for this year:
Eli got a Skylanders starter pack from Santa and lots of Skylander characters from family. He also got a drum set and some Lego sets that he has already put together! He also got Battleship, a science experiment set, and Whac-a-mole card game.
Drew got a sword from Santa because his from last year got broken. He also has recently become interested in trains, and got some Thomas trains and a small track. He has a couple new floor puzzles to do and a Lego Duplo set. Nana and Papa got him a new harmonica too, which he loves!
Jordan got a Baby Alive from Santa and loves her! She has asked for a doll "that pees and poops" for as long as I can remember! She has a high chair to put her and her two other new dolls in, thanks to Grandpa and GG. She also got a Tinkerbelle movie, a Barbie guitar, a hairstyling kit and a pillow pet night light.
Luke's gifts got opened by the big kids since they would have anyway! He got some clothes and fun toys, a name block like his siblings and a homemade blanket.

As far as Luke's progress, there is some, but not a lot to report since the last post. He is having trouble keeping his oxygen levels up, so they haven't been able to wean him from the ventilator any. They turned down his nitric oxide only to turn it back up yesterday, but turned it back down today. He is off the paralytic, so that is wonderful news! He is able to wiggle around and shows us his beautiful bright eyes once in awhile. He has at least one time each day when he really is awake, and he is agitated. I am usually able to soothe him with my singing (scary I know!) and soothing touch when he gets upset, but we usually have to give him a bolus of pain meds to calm him down from those big awake times.
Other changes include increasing his pulmonary hypertension medicine twice. They hope that with the increase of this medicine, that they can decrease his nitric oxide and get him off of it soon. They also ordered another echo of his heart, and this time, put in a cardio consult, so Dr Shaw will be by in the morning to see Luke. His X-ray looks better today than it has in a long time, and everyone say his lungs sound great, so I hope that these improvements will show clinically soon and he will show us that he is ready to start doing more breathing on his own.
I still stay here most of the time, and feel that I need to be here to be Luke's voice. With the holidays and being here for almost 2 weeks, we are seeing new staff who don't know Luke, and my presence and recollection has been useful a few times. He likes to keep teaching them that every kid is different! :) When he has a repetitive problem, I like to make sure we look at how it was addressed last time by a different doctor, nurse or therapist , so that we aren't always going back to square one. Also, the boy tends to act up every time I do leave! Stinker!
Thanks again to everyone for everything. We can't say that enough! We continue to try to be patient and open to the path we are chosen to take. Sometimes it is easier than others. I will try to post some Christmas pictures on here soon, but those of you on Facebook have already seen some. I forgot to mention that we got some snow! Just enough to cover the ground, but the kids had a blast in it nonetheless.

Our visitors last week

I haven't gotten photos of all our visitors, but here are a few...

Pneumonia and Mistletoe

Even though we tried to avoid it, Luke managed to get pneumonia for Christmas. I can think of a thousand better gifts, but it is non-refundable, so we are keeping it and going to kick its booty!! They have him on 2 strong antibiotics, steroids, and every treatment the respitory therapists can do to help get rid of it and clear up his lungs. Today has been the first somewhat calm day since Tuesday, and I am so thankful for it. This Mommy is tired. Here is yesterday's recap: Luke had been having low oxygen levels, so they gave him a fluid bolus and re-adjusted his vent tube placement (3 times). That seemed to do the trick for a few hours. Then on Saturday morning, he started having low blood pressures, got really cold and pale, and had low O2 levels. They tried 2 fluid boluses, but they didn't help. They started him on the new antibiotics and we had to use a special heater to get him warmed up (just like the day we came here). Talk about giving Mommy some anxiety! They finally had to start liquid nitric oxide, which is given through his ventilator. This is used to treat pulmonary hypertension, but is also used for sick lungs. It began working within minutes. So, he is on it for awhile so his lungs can heal. It will need to be weaned slowly, as will his narcotics. So, we are here awhile. Dr said that his pneumonia is bad and that he will be pretty fragile the next couple of days, and that it will take at least a week to get over it. They said the episode yesterday was a classic pulmonary hypertension episode, so they ordered another echo of his heart. We haven't gotten the official results yet, but the resident told me that it looked like only mild swelling on his right side, so mild pulmonary hypertension caused by the pneumonia and not the full chronic disease.
Today, they have given him a break from his lasiks and gave him another blood transfusion. They also had to increase his versed because even though he is on a paralytic, he is moving some today when we mess with him. He remains on the ventilator and is getting a lot of assistance from it for now. We are so thankful for technology, great doctors and nurses, and good insurance through the Air Force.
In more fun and exciting news, Andy's parents arrived tonight! Yesterday, Andy and the big kids got to attend a special event here at the hospital. They met all of the Oklahoma Thunder players and are in some photos and videos on the team's FB page. Eli even got Russell Westbrook to sign a Thunder shirt for him!

A week in the PICU

I apologize that I haven't updated in a couple days. Luke has kept us on our toes, and thus, I have been a bit exhausted when I finally get into my pull-out bed here in his hospital room. It really isn't that bad of a bed...

Okay, I know what you want is an update on Luke! He remains stable, still on a ventilator. They had to increase his vent settings on Wednesday and are hoping to start weaning them again today (Fri). He had a rough start to his day on Wednesday because his central line, which is what he gets all of his iv meds through, and they draw his blood from, was leaking. The nurses tried 3 times for a regular iv and were unsuccessful. Then, our PICC nurse came and looked and said there was nowhere for her to do a PICC. So, they called the NICU and they tried twice to get a PICC placed, with no success. Finally, Dr Carroll was able to guide a wire through the current central line and put a new one in the same spot. This all happened before noon!
Overall, we are still in a waiting pattern. We change one medicine to correct something, and that causes something else we need to fix. It's just going to be that way for now. For example, his CO2 is high, which is because his bicarbonate is high, which is because of the lasiks he is taking (and needs to keep his fluid retention down so he doesn't get pneumonia). So, we back off the lasiks and then his lung X-rays show that they are hazy, so we treat that....and the cycle continues.
They did start him on a medicine that is used to treat pulmonary hypertension. They don't feel like he has this disease, but he did show symptoms of it when we got here last week. The doctors explained that some kids have pulmonary hypertension when they get sick, even when there is no sign of it when they are healthy. He is going to be a child who gets sick quickly and it's going to affect him more significantly than other kids. Its a bummer for him, but I like that they are talking about his future!! Also, he got a blood transfusion yesterday to help build his volume back up and give him a boost so his lungs can heal. Essentially, that is what we are waiting on. His lungs are not in good shape. They are still doing his lung conditioning and have added in lung PT, where they use a soft tool to hit his chest rapidly to try to help him break up his congestion. It is working. Also, they have put him back on albuterol inhaler puff every 4 hours to try to help.
As for the rest of us, we are good. Aunt Kelly has been here this week from Indiana to help out and we are so thankful for the extra help. She made cut out cookies with the kids last night, did gingerbread houses with Jordan and Drew, and helped Andy with bedtime and morning routines daily. The Allen's are coming through town today and picking her up on their way to Indiana for the holidays. We are sad not to be traveling with them, but Andy's parents are heading our way this weekend and will stay through Christmas. The big kids are super excited. I have had their gifts wrapped and under the tree since last Wednesday, so they are ready to see what is in them! :) They were able to come up to visit on Tuesday night and did great. We brought them in one at a time while the others made Christmas cards for their teachers in the waiting room. None of them acted scared or intimidated by all the machines, just curious. They all told Luke how much they loved him (unprompted), which melted my heart. He is such a big part of our family already, even though he is still so small (6 lbs, 6 oz to be exact).
Thanks again to all for your continued prayers, thoughts, play dates, hospital visits, Starbucks... We are blessed beyond measure to have so many praying for our little Luke. I hope to update again soon, but if it doesn't happen, please have a wonderful and Merry Christmas!!

Update on Luke

Luke has been in the hospital for 5 days now and is slowly improving. They have weaned his ventilator settings a few times by turning down his oxygen level needed, and then by turning down the rate at which the vent is breathing for him. They did have to turn it up a bit this morning, but he continues to initiate breaths on his own very often, which is very encouraging.
Yesterday, he was alert and seemed to be uncomfortable and scared more often than I liked. They finally added another medicine in (versed) to help keep him calm and let him rest better. Since then, he has rested very well. He still tends to have bradycardia and desat when they suction him or mess with him, but he recovers more quickly and doesn't do it every time.
He is getting fortified breastmilk through his NG tube and is stooling, which we are happy about because that means his intestines are working. They say that the intestines are the first place to lose blood flow during a cardiac arrest because the blood goes to more important organs, like the heart and brain. He is retaining some fluid, which is normal for kids who are on iv fluids and on a vent. They periodically give him lasiks when he gets too puffy. His lungs continue to improve on his daily X-ray and respitory has begun lung conditioning, where they use the ventilator to open up his lungs and hold some oxygen briefly, like you do when you yawn. His liver numbers are still a bit high, but continuing to go down.
One of the doctors told Andy and I yesterday that they did not expect Luke to survive when he came in on Thursday. His numbers were just too bad...acidity, CO2 and others. While we knew how dire the situation was/is, it is still hard to hear that from a medical professional. I am glad he told us and he did it in an appropriate way, so I am not sharing this to be negative. We are so appreciative of the wonderful care Luke has received, No matter how bad things get, we have hope. I read this week that hope is not the same as wishful thinking. God knew I needed that discernment. We don't come into these stressful situations naïve. We know the possible outcomes, but we choose to remain hopeful that God will work miracles and save Luke's life. He is with us, beside us, giving us peace and grieving with us as we process this event and miss holding our youngest child. Andy and I both feel like Luke will make a full recovery! He has beat the odds before. When I start to feel panicked and defeated, I remember that even though this trial is hard for us to endure, there are many others (some of you reading this), who have endured far more. Please know God is with you, as He is with us.

Luke's hospitalization

Luke had some cough and congestion earlier this week, so I took him to our pediatrician on Tuesday. His rsv test was negative and his lungs still sounded clear. On Wednesday, his cough sounded worse, but he didn't have a fever, so we just kept a close eye on him. That night, my mom took the first shift and rocked him in the living room. He was too congested to lay down, and he was still connected to his monitors, so we had some reassurance that he was doing okay. He didn't eat all through the night and woke up around 6am and was alert while Nana fixed his bottle. He ate some of it, and when she was burping him, his low heart rate alarm went off. I was in my bedroom sleeping and heard it. I ran out and took Luke from my mom and he was nonresponsive, blue and cold. I immediately had mom call 911 and did CPR until the ambulance arrived. I am still in shock and processing this, and I know that it will take me awhile to cope fully with it. I knew God was with me, and did what I needed to, but it was all out of selfish fear and love. I couldn't fathom the alternative, so I panicked on the inside and did anything possible to save Luke's life so I could keep him here on Earth with me-with our family. God, in his endless mercy, answered my internal prayers that I screamed to Him in my head as I did CPR. He had the monitor in place to get Luke fast help, my mom there to help in a thousand ways, had me trained and there when it happened, and even had the nose bulb sitting right there so I could suction Luke when he threw up from my rescue breaths. God is always with us!
Tonight I sit in the hospital with a very sick little boy. He has enterovirus and rhinovirus, which are very common and usually give people cold symptoms. But because of his premature lungs and immune system, it caused pulmonary hypertension, which is increased pressure in his lungs, which caused increased pressure to the right side of his heart, which caused the cardiac arrest, and is the cause of his blood flow going the wrong way in his heart right now. Hopefully, with time, it will all heal, and he will not have any long term neurological damage from the episode, or from my CPR.
Andy drove back from San Antonio yesterday and will be here until we know Luke is out of the woods. His dr said he will be on the ventilator for at least a week. As always, we have had a wonderful outpouring of love and prayers from those we know and don't know. We appreciate every single one of them! Luke does too.