No towels. Need Sleepy.

Feeding tube was placed yesterday (Tuesday). Fairly good day as well, minus a few periods of irritability. Last night Hayden was cranky from midnight to about 5 this morning. Still doing great with breathing. 100% oxygen at 1.5L and saturation at 100% most of the time. Will continue to wean the flow (1.5L.....don't know what that means besides the amount that is getting pushed through tube/support) and start on amt of O2 (100%) and work on decreasing towards room air, which I believe is 21%. 

Parents made it down for a few hours to exchange laundry and give Kelsea and I a chance for lunch and a nap. The dining out curse continued!!!

It's 7:30 am. I have to make some calls regarding insurances and bills, then it's off to bed for this guy. Goodnight moon!

Small Glimpse

Rough 36 hours. Hayden, mom, and I have been up for about 33 of them. He continued to struggle off the vent. Actually he was breathing great and was weaned almost down to 1 liter of O2. However, the pain and his addiction to pain medicine got him. They think he was exhibiting withdrawal symptoms from the sedative he was on while intubated, which caused 30 hours of straight crying, which led to swallowing a lot of air, which led to a distended tummy, which meant he was unsuccessful when we attempted to feed him tonight. 

After another one of "those episodes" around 6:45, Hayden was calmed down, had a replogle tube reinserted into stomach to drain gas and fluid, put back on lower dose of similar analgesic, and slept for almost 3 hours. So happy to see him calm for a few hours. Even though I know this is all part of Gods plan, when you see your son struggling, it is hard not to worry and question things. Thank you all for the prayers, for Hayden AND Kelsea and I. I received an email with a perfect message at the perfect time tonight that greatly helped me out. 

Kelsea and I are splitting shifts tonight and hopefully she will wake up and relieve me at 1:30 so I can get a couple hours of sleep and be back by 6 to get ready for rounds. 

Remember, what we are seeing in front of us at this moment is only a photograph, a tiny image of the grand scheme He has laid out for us. 

Adrenaline or too Much Epinephrine

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It was my turn to sleep in the bed at the room overnight while Kelsea stayed with Hayden Saturday night. Although he had an increase in mucus on Saturday, things were pretty good when I left for the night. Hayden's vent settings had come way down and as I had mentioned in last night's post, there was a very, VERY specific plan put in place in order to effectively take away the narcotics and replace it with a different analgesic (drug that produces an anesthetic like state) so he wouldn't be in pain, but could still breathe on his own during the Extubation Readiness Test.

I woke up around 5 and read a message Kelsea had sent shortly before that. They had done a trach aspirate  (culture checking for bacteria) due to his increased mucus and it came back showing some bacteria growth. This basically means that there were signs of bacterial growth in Hayden, and possibly even his lungs. Kelsea also said that Hayden's heart rate and blood pressure had dropped significantly at one point because he was too sedated, so they stopped the analgesic to bring him back.. When I showed up, the resident stated that these don't necessarily mean they wouldn't extubate, but they would have to have a serious discussion about everything during rounds. He said we don't want to hurry things and cause problems. I agreed, but I was heartbroken. I went to bed thinking the next morning was going to be great and woke up struggling because I thought God's plan was leading us in a different direction than what I wanted. I know, I should be used to that by now, but I wasn't! I could tell in his voice that the doctors didn't think it was going to be a good idea, so I texted mom and dad the disappointing news and started my morning ritual of standing by Hayden, talking to God, and waiting on rounds.

As the discussion got under way, I don't think I even had my notebook of questions, daily goals, data, and notes with me. I was just kind of there. As they discussed the overnight happenings and looked at the morning x-rays, I was only half paying attention because I knew what was coming. When the resident brought up the culture, the Attending Physician, as they always do on rounds, just like you would see on any medial show, started presenting scenarios and asking questions about different outcomes. He asked a little more in depth questions about the results from the culture and asked a resident what that suggested. His response was, "Correct. Ventilator Associated Pneumonia which the biggest way to prevent that is to yank the tube." When he said this, and acted like he was ripping something out of his mouth, my ears perked up. It was one of those moments (Kelsea could describe them for you) when I was overcome with joy. It was like a ton of bricks being lifted off of my shoulders. I called her in the middle of rounds and told her to get over here. I was kind of a nervous/excited mess and the adrenaline was flowing through me because I was so excited to be able to hear Hayden again. Within 30 minutes, the tube was gone!

When somebody is extubated, they have to make sure that the person can do several things. These include breathing at a normal pace, keeping heart rate at a normal pace, keep there blood oxygenated, and not struggle to breathe. Well, Hayden was struggling with several of these. He had a lot of bubbles/fluid coming from his mouth, elevated heart rate, and was working really hard to breathe. After about 20 minutes, I suggested Kelsea holding him might help to lower his heart rate. Boy, was I wrong! Kelsea was a trooper though and did her best to console Hayden as he struggled, and cried, and twisted in her arms. He was not happy! Part of the problem is that he was given two doses of epinephrine to help open up his airways and help him breather. A side effect of this is increased heart rate.


As time went on, I was afraid we were heading down the path or being intubated again. I didn't know exactly what was going to trigger the decision to do this, but I felt it was close. After about 90 minutes of him struggling, one of Hayden's angels (a doctor in disguise) came to the rescue. The same fellow who I wrote about Wednesday (who made the decision to bring him from the Surgery floor back to the PICU just in time to get him intubated) consoled Hayden for about 35 minutes straight encouraging him to suck on his pacifier which was dipped in "Sweeties" (sugar water basically). He was able to get Hayden to calm down so his heart rate dropped from about 228 (it was above 200 for at least an hour) to around 165. So many times, we have gotten to see the human side of doctors down at Children's. Looking at him trying to console Hayden, you would have thought it was his own son. He wasn't just pulling for him as a patient, but he was pulling for him because he wanted to see him succeed. I know this is there job, which they get paid for, but I can never thank everybody down here enough for what they do. His nurses. Wow. As they always have (especially in the NICU...ahem....shout out....kind of since I'm not naming names!) show their human side and love for their job day in and day out.

At 12:30 pm, after three hours, Hayden had calmed down and was doing well. Even though Kelsea and I really didn't do anything, we were completely worn out and emotionally drained. His tube was out and we finally felt like he was going to be succeed this time. Kelsea sent me down to grab lunch and I called dad and gave them the ok to come down. Hayden's Aunt Kelle was in town and wanted to see Hayden. She hadn't seen him since the first of February, so I was really hoping that things would be good enough for her to come down. While eating, his heart rate slowed even more and mom was able to go get something to eat. She also tried to go take a nap (since whoever stays in the room with Hayden usually doesn't get much sleep), but it didn't work for her! Hayden was worn out, but couldn't sleep. He was very restless and just wanted somebody to hold his pacifier in his mouth for him. He wanted to suck on it, but didn't have the energy to do both.

Mom, dad, and Kelle arrived around four and were able to spend a couple of hours here. Hayden continued to relax and adjust to the oxygen that he is on now. They will continue to try to lower and lower the oxygen he is on, but at this point, I don't care if he have to strap a tank to the roof of Kelsea's car! He is still getting treatments every 2-4 hours from the respiratory therapist for junk in his lungs. He doesn't mind the tube they put on his chest which uses sound waves to break it up, but he DOES NOT like the mask they put over his face for the Albuterol. He is acting like putting a mask near his face and having him inhale 5-6 times is the worst thing that has ever happened. However, I guess I can't blame him because everything since Tuesday has been about his face.

He is sleeping now and I think he is going to sleep good tonight. This afternoon, there were several times it smelled like he dirtied his diaper, but hadn't Still good news though because it means things might slowly be waking up down there. His catheter was removed today as well as two IV's (not by choice.....more from him thrashing around). He has his PIC (we are only using one "C" at the end since it is technically not a Central line) and an IV in his neck. However, his nurse tonight is certain the neck IV has run its course and won't hold up much longer. That means he will have to have another one put in tomorrow in a foot or hand, but I am ok with that. They need the access.

They are going to monitor him in the PICU for at least 24 hours. We told his doctor this afternoon that we are ok if it is 48 or even 72 hours. Right now, we are in no hurry to leave the PICU. However, we will be ready for the next step and goals. Not exactly sure, but these will include trying to wean him off of the oxygen and hoping his intestines "wake up" so that we can see if he will eat/digest food and start getting him to put on some weight.

I think there are at least ten things I wanted to say tonight, but forgot. However, the one thing I know is that God is watching over us. While Hayden was struggling, I know for a fact there were so many people and churches as a whole group, who were in deep discussions with our Father. He heard every single one of them and His path for us was once again laid out before our eyes.

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!