Coming out both Ends

No extubation today, but hopefully he has a good night and will pass his ERT in the morning. I'm sooooooo ready for him to join us in the works of the "awake!"

Big news of the day is......Hayden FARTED!!!! Big time thing since this means that we might start to see some life in his intestines. Anytime intestines are "bothered" they "fall asleep" and wake up whenever they are ready. Nothing can be done to speed up the process. 

Night rounds just finished and his "very specific plan" is in place. His vent numbers have been excellent today and I have a very good feeling about tomorrow!

We are also very excited that Frankie was extubated this morning and should be heading to surgery floor tomorrow. Exciting news for Alex, Joe, Lulu and Frankie! We hope to join them shortly!

Prayers tonight and in the morning for a restful and peaceful night and a successful ERT!

Sunday morning update:

Extubation is a go and Hayden farted more on his own....so it really is coming out both ends!!

Big Brother and God: Being Watched and Watching Over

It is amazing to see the continued and growing support and prayers that are being given for Hayden. I continue to be amazed day after day. I have written before about what it has done to Kelsea and I over the past 8-9 months to see others put our family at the front of their thoughts and actions. It has made me revaluate how I treat others and makes me more aware of friends, loved ones, and even strangers that are in need, even if it is a simple note saying they are loved or being thought of.

First off, if you are reading this because you subscribed to get daily updates, then most of the time, the post is from the night before. However, sometimes I add information the next morning, or the same day the e-mail is sent.

Much improved overnight. God answered prayers and eased Hayden's suffering and, at the same time, eased Kelsea and my suffering.... What a difference 24 Hours makes.....we've heard that one before!!!

A couple of days ago, Kelsea posted a video on Facebook and it was a perfect representation of how we felt. As my post last night showed, I was struggling. I know we are to put our worries and trust in God, but it is tough when you see your little one struggling so much. As Hayden and I were talking to God last night, we told Him that we know things will be alright and that eventually, probably before I know it, we will be home and back in our routine. However, we also asked Him for that little sign; that glimpse that would show us He is in control. I am sure God has been showing us that non stop for the past three days, but it is hard to see the good sometimes when you THINK all you have is bad. Well, the past 24 hours, HE did give us a glimpse and reassurance that He IS leading us through this! And about 5 minutes ago, before I started writing this post, Hayden and I were listening to the song on my phone. He is still heavily sedated and his left hand has been holding on tight to his vent tubing all day. Halfway through the song, on one of the chorus repeats where he sings, "Let me know the struggle ends".....Without moving his body, opening his eyes, or stirring, his left hand shot straight up and grabbed my pinky finger until the end of the song. I think it goes without saying what that did to me at that moment. Hayden had a few tears of joy dropping on him because I know God was telling me and showing me things are good. He was reminding me that He has a plan and that He is still here. It was pretty powerful.

He slept very well last night, which meant I did too. The diuretics (Lasix) helped tremendously and his morning x-ray had improved. His lungs and heart looked much smaller due to the swelling going down and they decided to hold off on the CT Scan. His face is almost back to normal, minus the mullet he has because they had to shave both sides of his head since the PICC line didn't work on the first side. Hayden has done pretty good today on the vent. Not perfect, and still struggling, but there is talks of extubating again. Kelsea and I are in no hurry. We have nowhere to be and want to make certain Hayden tells us he is ready. The doctors said they will do the ERT again tomorrow, but it will more than likely be Sunday or Monday. His new night Fellow (the one who was awesome Tuesday night and made, what I thought was, a lifesaving decision said he would want to keep him in the PICU for 24-48 hours after extubation, just to make sure he was ready. We are good with that!

Longo stopped by the hospital last night, saw Hayden and hung out with us while we ate dinner. Mom and dad were able to make it down today with a few minor supplies, Jimmy Johns for lunch, mail, and bills. They didn't stay long, but glad they got to see Hayden in a better light today. Not much is on his plate for the weekend except to continue to try to wean him from the ventilator. I have a feeling Hayden will be coming home with oxygen (whenever that may be) due to the Tracheomalacia and Bronchomalacia, but hey, that is ok! Not what we wanted, but it's not about what we want!

All for now, I think Hayden and I are going to waste an hour and watch something I look forward to all year long....one of the few Reality shows I can actually watch (besides Duck Dynasty).....Big Brother!

Vicious Cycles

I struggled today. I questioned people. I got angry. I got upset. I got emotional. I got discouraged. I got sad. I got a little pushy. I got exhausted. I got humbled. And I got put in my place.

After some miscommunication overnight and early this morning, I was not a happy camper. However, things got better. I think I just needed to vent a little frustration. I have to remember that things don't always go perfect in one of the best hospitals in the country and that there are going to be hiccups. However, I want the best for Hayden. I am still happy that we are here and feel that very first night when I searched the phrases "Omphalocele" and "St. Louis," God led us here. Go ahead and click HERE.....see what happens when you search those and experience what I saw back on September 17th, 2012.

As Kelsea and I were sitting in the surgery pre-op room on Monday, I was telling her that I couldn't believe the "luck" we had ending up where we did. I know luck had nothing to do with it. This was the path that God led us down the entire time. I couldn't believe that 9 months and 1 week earlier I had searched the three phrases and the first website I came across (as hopefully you did when you clicked on the link above....if you didn't...do it now by clicking HERE, and then open the first website and read "Blair's Story." Actually, if you open several of the websites on that Google results page, you will come across quite a few familiar names, places, and people that I have mentioned over the past few months) mentioned the guy who was going to be walking through our door any minute. There were close to 6 general pediatric surgeons, and 40 specialized surgeons who could have been the lucky one, and the one who first worked on Hayden's Omphalocele after he was born, followed him for the past 5 months, and was now going to make him better was the first name I read about that night. There is no way that is a "coincidence" or luck of the draw. That was something that God had planned all along. Too many things fell in to the right place (or the stars aligned as some say) for it too be anything less than that.

Anyways, back to today! We haven't taken any pictures of Hayden in a couple of days because he is so swollen. He really doesn't look anything close to himself, which has been the hardest on Kelsea and I. I think we could make it not holding him and hearing him, but when you take away his looks, it has been really tough.

For the next part which will bring us up to speed, I am just going to copy and paste from a couple of e-mails I sent. There is a lot of information (and there are still a lot of unknowns), but it gives an excellent account of what has happened and what they hope to see happen overnight.

 

E-mail #1

 

"Ok....Hayden is getting the blood "transfusion" right now. However, it is not as scary as it sounds. His hemoglobin was low (anemia) which could be from a number of things. First off, it could be from the surgery. They said intestines can easily lose a lot of blood when they are in open air during a surgery.

Another possible cause is due to his swelling. He is really retaining water/fluid and it got kind of worse today. They are giving him Lasix (water pills/diuretic) to help release the fluid. Now, why is he retaining fluid? Could be from "trauma" from surgery. It could be the breathing tube agitating him. It could be due to him being immobilized. It could be due to his heart working "differently" than normal. They are investigating some things with his heart. They think he could have what is called Pulmonary Hypertension (which is a common thing associated with Omphaloceles. On an X-ray he had, the tech thought his heart looked enlarged. It is not enlarged, it is actually just something called the Thymus that is on top of the heart that the X-ray machine can't see through.

 

So, they did an Echocardiogram yesterday, and found what looked like a flattened septum. The septum is the wall between the left and right lower chambers of the heart. The right chamber pumps blood (w/oxygen) to the body while the left chamber pumps blood (w/out oxygen) to the lungs. Normally, the left chamber pumping blood to the lungs requires less pressure than the right side, so the septum pushes away (curves) into the left chamber because the right chamber has greater blood pressure. However, his is flat (or actually straight) which could possibly mean there is increased pressure in the left chamber, pushing the blood to the lungs (pulmonary hypertension). However, his "numbers/figures" don't necessarily agree with the echo, which doesn't make the doctors think they need to treat it immediately. However, it also raises a question about if the heart is having to work harder to pump the blood into the lungs, and if so, what about the lungs makes this true. It could be because there is some underlying issue with his lungs, it could be due to his newly diagnosed Tracheomalacia/Bronchomalacia. It could be a number of other things.

Originally they were going to do a CT scan on his chest today to investigate the lungs more, but surgery is not ready to do that. They want to rule out a few other things first before they subject him to more radiation with the CT scan. In just the time that I have typed this e-mail, Hayden has "peed" out almost 250 ml of clear fluid.....and his face is looking better. The doctors said everything is a vicious cycle and they just have to find the thing that breaks the cycle. Once his blood transfusion (which again, is not as scary as it sounds) is complete in about 90 minutes, then he will get started on his TPN, which will be the first real calories he has had since 4:30 Monday morning.

Surgery's goal is to get him off of the ventilator and they feel the TPN, as well as the released of some of the retained fluid (hopefully) will help him move towards this goal.

 

Email #2

 

Just had a good conversation with nurse, PICU drs., and surgeon via phone! First time in several days that I am not uptight, stressed, and I am smiling. I am not sure why, but I have a good feeling. PICU doctors were doing rounds as nurse was emptying his urine bag (sorry....all of the medical terms and I can't remember the simplest one!). He had a little over 250 ml of urine that were emptied out (almost 350 ml now) and his face looks a TON better! The doctors on rounds said they were going to push surgery, radiology, and Cardiology to sit down in the morning and come up with a plan. He said I am ok with letting him rest tonight and seeing if the diuretics help, but we are not going to go another day without a plan. He was very adamant! My kind of guy! As they were talking, surgery called on the phone and checked on his swelling. They were pleased with the fluid output in his urine and hope to continue to see if that helps with the swelling. They are going to increase the sedation medicine so he gets a good period of rest without interruption from pain (hopefully) and in the morning, do either an ultrasound or another x-ray of the chest to reevaluate and take to surgery to decide if they need a CT scan or not.

I have not been a happy camper with (what seemed like) lack of communication. However, I feel good now. Prayers for the continued effectiveness of the diuretics which will allow the doctors to really get a good evaluation of his heart and his breathing/lungs tomorrow!

 

After sending those two e-mails, Dr. Warner and Dr. Fialkowski (I finally got her last name right....I'm believe there were several posts from January/December that not only spelled it wrong, but completely had the wrong last name....sorry Elizabeth if you ever happen to see this!!!) stopped in to check on Hayden and they said he was doing very good, surgery standpoint. They were very pleased with his fluid output and Elizabeth said his face looked a ton better (she had seen it a couple of hours before when it was really bad). We are going to do a CT scan on Hayden's chest in the morning to hopefully rule out any issues with his heart and the pressure.

Transfusion just finished. So far no problems. I know he doesn't really see things, but it is such an awesome feeling the few times Hayden has opened his eyes.Prayers were heard today because God calmed my nerves and eased my pain. I also didn't realize it, but our nurse snuck in at some point and turned down his oxygen. One thing he needs to shoot for is breathing at "room levels" of oxygen which is 21%. For the past 36 hours, he has been at 50%. However, it is down to 40% and he is doing great!

Hopefully he will get that good night of rest with minimal discomfort, continue to drain the fluid, and be ready for the CT scan in the morning.

Living for Today

After a rough 12 hours, things seemed to settle down yesterday. Hayden was heavily sedated most of the day while they tried to stay on top of things and let him get back on track. A PICC line was put in his head. This is a central line that is more durable and can last longer than a regular IV. It also runs through the vein and ends near the heart and is going to be primarily used to deliver his TPN (Total Parenteral Nutrition....I think this is what I remember the name standing for) which will give him his nutritional needs until his intestines "wake up" and decide they are ready to start working. However, I just found out that they were not able to get it far enough and they cannot deliver the full nutrition. Not too happy about this because this took over 3 hours and it didn't achieve what they were hoping to accomplish.

Hayden still battled a lot of mucus and secretions in his lungs, so a respiratory therapist started treatments last night that would help break these up in the different lobes in his lungs. Kelsea is stayed with Hayden last night and I went back to the room to try to get some sleep.

Rounds this morning didn't bring a ton of new information, except for the information that the PICC line is not technically considered a "central" line. They are going to do a CT scan on Hayden's chest to check for a couple of things. First, they want to make sure that there is no blockage in his lungs that is preventing a consistent pressure from the vent reaching all lobes of his lungs. Second, he had an echo yesterday which showed signs of a flattened septum, which would be a result of increased pressure on the heart and possibly pulmonary hypertension (another thing that is common in babies who have Omphalocelese), but the numbers didn't reflect this. The dr. this morning though wanted to make sure.

The goal is still to wean him off the ventilator, but he is not ready yet.

We will see what today brings, but right now, we are not worried about it. We are just living for today and will get there when we get there!

Update

After being extubated yesterday morning and doing great for several hours, Hayden was transferred out of the PICU and to the surgery floor for continued monitoring. Once we arrived there, he was fine for an hour or two, but then he started to go downhill. It began with him being a little more agitated than he was earlier in the day and his breathing became very loud and sounded obstructed. Over a period of 5 hours, he was given pain medication, which did nothing for him. Finally, after feeling like the nurse and dr who checked on him several times weren't taking his conditions/symptoms seriously, Hayden's face started to swell up. At this point, "father knows best" came out in me and took it to the next level. I am not sure what his name was, or where he fit in on the "food chain." but he took one look at Hayden and said he agreed with me and told the nurse to call "rapid response." Rapid response is pretty much a call for help where doctors and nurses from several floors/specialties all respond.
We experienced this in April, the night of his hernia surgery, but it wasn't very rapid. Last night, it was rapid. Thankfully so as well.

His room quickly filled with 10-12 doctors and nurses who quickly assessed him. The surgeon ordered chest and abdomen x-rays while the Pediatric doctor prepared him to be transported back to the PICU. Kelsea was back sleeping in the room and I called her and as softly as I could, told her she needed to slowly wake up and head back to the 10th floor (surgery recovery floor). The pediatric doctor made dad VERY happy with the next decision. X-ray was coming into Hayden's room and the doctor knew he was struggling. He said x-rays could wait and said it was more important to get him back to the PICU. As soon as he got to the PICU, he needed to be intubated again. At the same time, he started to vomit and aspirated a little. They are monitoring that and will stay on top of that.

At 3:30, Kelsea and I got a little bit of sleep. I was back in his room again by 6:30 and Hayden was doing good and sleeping peacefully. About 7:30, after rounds, his heart rate dropped as well as his oxygen saturation. It brought the attention of MANY nurses and doctors again. They unhooked the vent and hooked up the "bag" to manually give him breaths. I can't say it enough about every single person involved in his care at Children's and how amazing they are. However, I have to give a shout out to Eugene (today) and Michelle (yesterday), the respiratory therapists who manually pumped the bag to give him his breaths for close to 15 minutes until his levels came back up to normal. It was a very emotional time and I am not sure if it was me being scared or me being grateful to see somebody single handedly keep your son breathing with their hands. Pretty powerful stuff, and every single person in his room, all 15 of them, took it in stride as if it was no big deal. I wanted to give each and every single one of them a high five and a bear hug. However, they probably didn't want a crying 34 year old to hang all over them!

Hayden is going to be kept on the vent and monitored and will be reevaluated tomorrow. He will also have a PICC line put back in so he can get his nutrients since he hasn't eaten in several days. So much for the little bit of hair that he grew back on the side of his head for the past 4 months! Oh well. I think there are more important things to worry about....or not worry about!

I know many people are following Hayden's progress and I will try to continue to update as much as possible. Kelsea and I are struggling, not going to lie, but we are doing good. It's a rough patch, something that we really haven't had to deal with Hayden. We are still blessed and it is still in God's hands.

Hayden was also extremely happy to see one of his favorite NICU nurses and LOVES the gift that she brought him.
's
We also felt very lucky to meet Alex and Joe DiFranco yesterday (Frank the Tank's parents) who have also documented their journey with Frankie's Omphalocele at Baby Frankie's Journey. His omphalocele closure surgery was just 24 hours after Hayden's and is now Hayden's neighbor.

God and Lint (not Lent)

God is so good to us. It is so hard to comprehend how He can continuously show us love when I feel like it is much more than what I give in return. I can't remember if it is grace or mercy (Bob Cowman had an excellent definition/illustration a few months ago either on his blog or Facebook and maybe he can re post it!), but it is such an amazing feeling when you receive it from God. Hayden is doing so much better than we ever could have expected or dreamt and he is resting peacefully right next to me.

My mind is running a million miles a minute and I am not even sure where to start. Kelsea and I decided to drive down to St. Louis last night so we didn't have to fight traffic early this morning. The drive from Troy to Kingshighway was absolutely horrible. We had heavy, heavy rain, thunder, and lightning the entire way. We probably averages 40 mph the last 40 miles. I couldn't get over how much water was on the highway in so many different places. Cars continuously were hydroplaning and sliding all over the place due to water on the road. We made it and checked in to the hotel around 7:15. After getting checked-in and Hayden fed, we were hungry and decided to get food from the Applebee's that is in the hotel. Well, to make a long story short, for those of you who know what happens when we (particularly Kelsea) dine out, the curse continued! For those of you who don't know, Kelsea CANNOT eat/order food from a restaurant and expect to get the correct food delivered/placed in front of her!

 After getting everything straightened out, we finally ate dinner around 9:30, got Hayden to sleep, and tried to go to bed ourselves. I'm not sure about Kelsea, but I know I struggled. My stomach was turning every way possible. I know I did get some sleep, but not certain how much. Kelsea probably had less than I did. He woke up at three and Kelsea fed him. At 4:30, I gave him a little more to eat as this was the cutoff time for feeding him.

While getting ready this morning, Hayden did awesome. He was hungry, but was still his happy self! Talking and playing with toys on the bed while we took turns showering and getting ready. It wasn't until right before they took him back to the OR that he started to fuss a little bit. In the pre-op room, we had the normal gamut of questions, repeated 7 times! Mandy Murphy and Fox 2 is doing a follow-up story on Hayden, so her film crew was in the room shooting a little footage of Kelsea, Hayden and myself. They were also in the operating room for his surgery. More on that at a later date. Dr. Warner met with us first and told us there were really three options and he didn't know yet which method he would use for Hayden until they were able to get in side and see how he responded to different situations. The first was full muscle closure which is what we were wanting. This would be a one time surgery and he would be able to stretch the muscle and skin together after putting all organs back inside. The second option was partial closure utilizing mesh. The mesh would be used to connect the muscle fascia and then the skin would be closed over this. The third would be a reduction in size of the omphalocele which would lead to another closure surgery at a later date.

As Dr. Warner said, "I can be the hero and get full closure today. However, this could compromise his ability to breathe and wouldn't help us achieve what we want." We were ok with Hayden dictating what his body could handle! We obviously wanted to have everything back inside and have full closure, but if he wasn't ready, then we were fine with that too.
 

Next came Hayden's ENT dr. that we met with last week. I have praised God so many times today for pushing us to meet with a GI doctor in St. Louis a week ago. It was His plan all along for the GI doctor (we met with her to look into his vomiting/feeding difficulties) to miraculously hear his wheezing while breathing and refer us to an ENT last Thursday. We also almost didn't keep the appointment last Thursday because I wasn't wanting to make another trip to St. Louis, plus we had another appointment in Quincy at the exact same time. Well, it was a true lifesaver we did. His ENT didn't find anything last week, but wanted to do a short procedure before his surgery this morning. She found out that Hayden has Tracheomalacia as well as Bronchomalacia which means his trachea and bronchus collapse when he breathes. We don't really understand this completely yet, and how it will play in to Hayden's recovery, but his ENT didn't seem too overly concerned at this point. She said most babies outgrow this by two years of age. I also think, from my quick research I did while he was still in surgery, that this is a fairly common associated "thing" with babies that have Omphaloceles. Why...who knows. What does that mean....who knows. She will follow in the background this next week and watch Hayden while he recovers.

About 2.5 hours after Hayden was taken back to the OR, which was one of the hardest things I have had to do......watch Kelsea hand him over to the nurse.....Dr. Warner came out. He was able to achieve full closure!!! We were floored. Kelsea and I thought there was no way that would happen. They almost didn't leave him on the ventilator either, but wanted to give him 24 hours to see how he does. Right now, he is on the ventilator, but breathing quite a bit on his own. The plan is to continue to wean him off tonight and if things continue the way they have, then they will look at extubating him tomorrow.

Hayden is currently resting peacefully and has a 1,000 tubes and wires hooked up again. I am doing better than what I thought I would be at this time. However, when Hayden is startled, he does "come to" somewhat and even though you can't hear him, you can see him "crying." This is infrequent and usually doesn't last long, however it still breaks our heart to see him looking at us, him attempting to cry, and his arms restrained. His abdomen looks absolutely amazing. Dr. Warner said it was flat, but we still planned on him having a bulging belly. Boy were we ever wrong. It's flat....as in flat! I'm still floored at what he was able to accomplish in the OR!

I napped this afternoon and am hanging out in the PICU with Hayden tonight. Kelsea stayed with him this afternoon and is back at the hotel getting some rest (hopefully). Our first goal right now is to get Hayden off of the ventilator. Our second goal is for him to increase his urine output. So far, he has had very little output and they have increased his IV fluid intake. Hopefully that will help shortly. As Dr. Warner said after the surgery, we are not out of the woods yet. He has come a long ways, but we still have huge hurdles to cross. We are asking for prayers for Hayden's continued success with breathing as well as getting fluids to pass through his body. The next request is for his GI tract. Since his organs grew in different shapes and sizes outside of his body, when they are put back inside, things are necessarily in the right place so babies with Omphaloceles potentially have continued feeding issues. The surgical team will be looking at that some time later in the week.

Kelsea and I so blessed. WE feel like little kids on Christmas morning. The tears of fear after hearing from his ENT after her procedure this morning quickly turned in to tears of joy. They have been on and off all day, yet we know God is still on our side as we start this next leg of our journey. It is scary figuring out the PICU life (especially if you have a nurse who is great at what she does, but not so great at explaining what she does), but we know he has absolutely the best care possible as well as the biggest cheering/praying section available to him!

We are also asking that you say a quick prayer for Frankie and his family. He is another baby, from St. Louis, who is having his closure surgery tomorrow morning. They have had a long journey to get to this point and we are so excited for them. They could possibly be on the same floor, and it just hit me....considering we are the only room in the PICU that is a "double" room (every other room is single) is it in the cards that Hayden and Frankie will be bunkmates??? How crazy would that be!!! Either way, we are sending love, prayers, and good vibes to Frankie, his parents Alex and Joe, and his sister. We know, as Hayden was, Frankie is in good hands with the surgeons, nurses, and doctors at St. Louis Children's. 

Oh yeah...almost forgot...if you read yesterday's post (6.23)....God gave the thumbs up on Hayden collecting belly button lint!!

Belly Buttons

This time tomorrow, Hayden will possibly have a belly button! Just Sayin! If he doesn't, then we will take what the good Lord said he needed....or didn't need!

Last bottle at 4:30. Check-in at 8:30. Surgery scheduled at 10:00 (depending on Dr. Warner's surgeries before Hayden's). Estimated to last 3.5 hours. Will update as we know. Thank you for your prayers. God has heard them and answered every single one!