Wednesday, December 18, 2013

Are You Listening?

Last Saturday, I posted on Gavin's Facebook page that one of the hardest things I have experienced in my recent walk with Jesus is that I struggle to hear what God is telling me. They were facing difficult decisions and I found Proverbs 3: 5-6 which tells us that if we trust in Him and submit to Him, He will lay the path out for us.

Well, I think I missed His voice again. Monday afternoon, when Carly posted about Gavin's celebration of life on Thursday, Carly said Gavin would like for people to get together and just be together. I started to get a feeling that Kelsea and I were supposed to go out there. However, I kept pushing it away and coming up with every reason that we couldn't make it work. Finals week/end of semester, Hayden, possible bad weather this weekend, Tucker, money, and just about everything else I could think of. I am not sure if this was God telling me we should go and I resisted or if it was me thinking we should go and God telling me it wasn't the right time. Either way,I will probably never know, but the important part is that I am listening.

For whatever reason, Kelsea and I will not be in Washington tomorrow. However, along with thousands of others, I can promise you that our minds, spirit, prayers, and love will be at Bethany Baptist with everybody else. Kelsea posted tonight that she was saddened because Gavin and Hayden never got to meet each other. However, I reminded her that just like our lives here on Earth, that is only temporary. They might not have been able to meet according to our plans, but when God feels the time is right, they will be causing mischief in God's kingdom for eternity. Until that time draws near, I will be looking forward to us getting to hear Carly and Ryan tell Hayden all about Gavin in person!

Sunday, December 15, 2013

Really, in ALL Circumstances?

Anybody can praise God when things are going good. I did it several times over the past couple of weeks. There is evidence on my Facebook page. There is evidence on Gavin Christiansen's Support and Update Page. There is evidence in text messages to Kelsea, and phone calls to Mom and Dad and conversations with coworkers in the hallways at school.


Casting Crowns - Praise You In This Storm (Live) from casting-crowns on GodTube.

However, what about when things aren't going as planned? Well, first off it depends on whose "plan" you are referencing. Yours? Mine? A strangers? God's plan?

1 Thessalonians 5:18 says the following:
"give thanks in all circumstances; for this is God's will for you in Christ Jesus."

ALL CIRCUMSTANCES. That is a pretty strong Bible verse that really does not require any translation. It is not up for interpretation. It is what it is. God says to praise Him no matter what happens. This is where things get tough. Right now, many, and I mean MANY people not only on the West coast, but around the United States and I'm pretty certain around the globe, have heavy hearts and are grieving the loss of a little boy, whose life was way too short. Even though we are grieving, it is easy for us on the outside to say, "This day sucks, but we still need to praise God for showing us what love is and for sending this child of His to spread love hope to people around the globe."

However, we are all selfish and praising God for what He has given us in a moment like this, is not easy. In fact, it might be the hardest thing I have ever done. And as I sit here, I can't even begin to imagine what his parents are experiencing. On one hand, I am happy because I know Gavin is crawling up in Heaven, with nothing attached to him, happy that there is no beeping of the heart monitor or pulse oximeter, no annoying alarms because one of his IV's has ended and the nurse needs to come in and reset it, no suctioning the vent that was helping him breathe, no sticks in the foot for daily lab draws, and no doctors thinking they know what's best for  him! However, on the other hand, and in reality, I am heart broken because I don't want his parents to experience this pain. I have wanted them to experience everything Kelsea and I have for the past few months. I have hoped and prayed that everything we have posted on Facebook they would soon get to experience as well.

At first sight, the reality sucks. How can God calling this beautiful little boy to Heaven be a much better plan that ours? Well, it might be a long time before we realize it, but His plan IS better. Being selfish, we wanted Gavin here on Earth longer than he was. However he is now sitting next to God, spending eternity in a much better place.

We can only imagine what it will be like, but Gavin is getting to experience it now! Looking at pictures that his mom had posted over the past 9 months, sometimes I smiled, sometimes I cried but no matter what, I feel that I have been blessed that our lives crossed paths with this little fighter and his family.

God places people in each other's paths for reasons we don't understand. It might be clear someday, but today it is still a mystery. One thing I do know for certain is that God brought us together for a reason and I know one day, Ryan and I are going to drink that beer(s) that we talked about. Although right now, the ending is not what we expected or hoped for, it is not the ending either.

Just because things have changed, it doesn't mean we are going to do things differently. There is an army of people around the globe who now have a stronger relationship with God and who have improved their communication skills with Him, drawing them closer and who have reevaluated their lives and their outlook on life.Just because things have changed, it doesn't mean we are going to forget everything that has happened in the past year. This family needs us and our prayers now more than ever. The decisions they have to make, the feelings they are going to experience over the next few days, weeks, months, and even years are things most of us have never experienced, but nonetheless, they need us to continue to intercede on their behalf and continue to pray that God's will, will be done.

God's plan, not ours.




Wednesday, December 11, 2013

Prayers to Seattle

As many of you have seen, either on my Facebook posts, Kelsea's, or my dad's, we have been asking for a lot of prayers lately, and they haven't been for us. They have been for our good friends, which we met through the Mother's of Omphalocele's  Facebook page, the Christiansen's out in Washington. I have mentioned quite a few times before and have briefly told their story and asked for the occasional prayer for them.

Well, lately, I have been asking for more than the occasional prayer. I have been asking all of our friends and family for full fledged, all-out, hard core prayers for them. A week and a half ago, their 10 month old son, after spending the first 60 days in the NICU and the past 133 days in the ICU at Seattle Children's, they had a day no parent wants to experience. They were losing their son Gavin and didn't think he was going to make it. At first, Carly didn't really say how bad things were, but I told Kelsea that I had a sinking feeling things were worse than what she was letting on in her Facebook page where she updates us all about Gavin. Through the week, her posts became more grave and serious and things were not looking good. Although nobody was ready to give up on him, I think many of us thought God was ready to call Gavin home.

It was last week that the call for prayers went out and they spread like a wildfire. It was amazing, rejuvenating, and comforting to see our friends and family, complete strangers to Carly and Ryan, put them at the front of their thoughts, even if it was for just a minute during the day. Slowly, prayers started to be answered. Over the past few days, Gavin has made remarkable strides. It was so great to even see a picture of him today. I know Gavin has not looked like himself and that is one of the hardest things for a parent to see. You child hurting and not even looking like themselves. Gavin still has a long way to go and he is by no means out of the woods yet, HOWEVER, he's fighting to get there.

We don't know what God's plan is, but I am asking each and every single one of you to please say a prayer, or continue to say a prayer for Carly, Ryan, their son Gavin, the doctors, nurses, and everybody else who has a hand on this child.  Ryan is trying to get away from work with FMLA and Carly has been in Grad school. They are an hour away from home, family, dogs and are living the hospital life. Please also pray that it be a part of God's plan that he help them financially so they can be together as a family and not worry about financial matters.

Although they have had some positive steps forward, the first in MANY days, they need more. I know they are struggling and they are worn. Even reading the positive posts, the song "Worn" comes to mind.


I am praying that God shows them a sign. Greater signs than what He has already shown them this week and let them know that God's plan is great and to continue to trust in Him.

On June 28th, 2013, I was worn. However, in my darkest hour. At my weakest point. God took care of things and showed me a glimpse of His plan. Please take a minute and read my post from that day. June 28th - Big Brother and God

I am also finishing today with by including Carly's latest posts from today. I haven't asked her for permission to repost these, but right now, I don't care if she tells me no! The following that Gavin is getting, the prayers and love that is being sent out to him, the connections and conversations people are having with our Heavenly Father are far too important. Now, as Bob brought up the other night, hopefully Gavin won't look me up in a few years with some HIPAA lawsuit!


Facebook Post from 12/10
Gavin has had a great 24 hours. He tolerated all of the medication and oscillator weans with flying colors today. Some medications were totally stopped and the labs that measure how he is doing with the oscillator weans have been great. The plan is to keep weaning as he tolerates. It would be so great to get him off of the oscillator because we will be able to get him off of the medication that keeps him paralyzed. All in all it was a 24 hour period that is worth celebrating. The medical staff has slowly started smiling more and I even saw Ryan get a high five from one of our favorite ICU doctors. We are amazed at the miracle we have been witnessing. We pray the progress continues!

Facebook post from earlier today - 12/11


This photo is Gavin's IV pole! The significance of the photo is that some of them are not lit up! Sunday they didn't have enough access for all of the meds he was on. This is visible progress. We just finished up morning rounds and everybody continues to be happy. We are making two more vent weans today as long as he tolerates them. Gavin also made the most urine he has made since this all started last week, which is so encouraging. He continues to just look so much better. His skin is pink and his pulses are better than they were last week. Also, last week his omphalocele was huge, swollen, and angry looking. Today it is smaller and less angry looking. There is a hypothesis starting that the C Diff (bacteria that causes digestive illness) Gavin tested positive for might have ca...used this. If this is true, there is even more of a miracle going on because Saturday morning I woke up and just felt like Gavin needed to go on a specific antibiotic, which just happens to treat C Diff. We had a phenomenal attending on Saturday and she listened to my intuition and put him on it. Unfortunately he didn't get a dose until late Saturday, but either way he had been getting better and Dr. Brogan said he would hedge his bets on the antibiotic I felt he needed. Everybody agrees he is getting better. Monday will be a huge milestone of the progress is still going on. Ryan and I are just blown away by this kid. He is tough as nails.
 


 Even though this post isn't about us, here is a picture from a few weeks ago....only because it has been so long since I have given an update on Hayden. I promise one will make it before Christmas (or New Year's Eve)!

Thursday, October 31, 2013

Prayers

I know it's been quite some time since I've updated and you're gonna have to wait even longer for an update on Hayden.  Tonight, it's not about us. I have a request, if not a demand. Kelsea and I are asking that you pray for Gavin Christiansen. We are asking that you pray for good health for him, strength for his parents, and wisdom for his doctors. 

You may recall us mentioning him before. He was born roughly a month after Hayden, with the same condition. After getting to go home after 2 months, he followed in the footsteps of Hayden and gave his parents several scares with return trips to the hospital. 

He has been back in the hospital since the middle of July. His parents are stretched so thin as Carly is in grad school and her husband Ryan has started a new job this past year. They live an hour away from Seattle Children's, so are rarely home to take care of the house, yard, dogs, etc, not to mention have any time for them. For those of you that don't know, living in the hospital sucks and outs such a strain on you. 

All of you did such an amazing job of supporting Kelsea, Hayden, and myself, I am asking that if there is any spare energy, you turn it towards this family. 

I know there are MANY families out there who are in similar situations and need support and prayers, however this family is close to our hearts and has become a part of my family's daily life. And even though we haven't met them in person, YET, the Christiansen's have become dear friends of ours.

Carly doesn't post many blog updates (there is a Facebook page that is updated fairly frequentky), but here is her blog address if you want to get to know them. http://obabychristiansen.blogspot.com/2013/10/october-17-then-and-now.html?m=1

It broke my heart just now to read that he had to be out back on the vent due to respiratory difficulties. Please, make it a mission to help this family out however you can. We had an army supporting us and they could use the same.


Monday, September 16, 2013

Flashbulb Memory


The day JFK was assassinated. The day we landed on the moon. The 9/11 terrorist attacks. The Columbine School shootings.  I am certain that these are dates that you can probably vividly recall. You probably remember the weather, maybe what day of the week it was, and possibly even what you were wearing and definitely where you were when you heard the news. It is almost as if you had a camera and took nonstop pictures (with the flash on!) at the time of this event.  Two of those I was alive for and remember more details than I ever thought I possibly could.

365 days ago, I think I had two cameras taking non stop pictures. I can tell you what the weather was like, what I was wearing, and pretty much what happened for six days straight. When Kelsea and I first found out about Hayden's Omphalocele, we were devastated. Omphalo What tells the story of our first 48 hours. Kelsea's parents, being OB-GYNs had heard of this. My parents, never. We talked to mom first, because they were waiting to find out about the sex. I don't remember exactly what we told her, but we withheld a lot of information. I knew it would come to light, but we weren't ready yet because we didn't fully understand ourselves. The next thing, I am not so proud of. After Kelsea and I talked for awhile in the parking lot of QMG, I believe we were the last two cars there, we were in a better place and I headed down to Hannibal for the Varsity soccer game. On the way down, the weather changed, and nasty, dark clouds filled the skies. It let loose and the first half was played in a monsoon. I never should have left Kelsea that night. She called at halftime and I headed home. We comforted each other for awhile and talked to God and tried to give Him our worries. It didn't happen immediately, but we tried.

After she went to bed, I started my research. I have always said I love learning. There is a reason why I graduated with my undergrad in 5 years and with over 150 credit hours. There is a reason why I have two master's degrees and am not so certain that I am done. I couldn't help myself. Dr. Kagumba told us not to, but I also have always kind of done things my way! I looked at pictures and became even more scared. That week was the longest I have ever faced. Tuesday came and I went through the motions at school. Matt took the Freshman to Canton that night and Kelsea and I prepared to start coming up with questions to ask on our visit to the MFM Specialist on Wednesday. Wednesday morning took us over to Springfield, IL where we met with an MFM that said she had never seen an omphalocele as large as Hayden's and that after he was born, he might be transferred to Chicago or St. Louis. Well, on the way home, we made the phone call to get the request to see a specialist in St. Louis. Thursday took us back to work, then in a car for almost 6 hours to Minnesota for a funeral for one of  Kelsea's cousins, who was murdered in Wyoming the previous weekend.  We got back late Friday evening and I moved stuff in the basement so the carpet could be installed the next morning. I also has to get ready to head to Lincoln at 6 in the morning for a tournament in Lincoln, IL. After our two doctor visits and 1100 miles in 4 days, I realized, and even wrote about it in LIfe is a Highway, that God was preparing us for the future. He tested our patience, our love, and our resiliency those few days, and really showed us that He was in control and that things would be done His way. We thought is was the worst week we had ever experienced....but we were way wrong!

The next few months now seem like we were on a whirlwind trip. The days were continued with educating ourselves, trips to St. Louis, reaching out to strangers, phone calls to insurance, house preparation, mental preparation, and oh yeah, work!

As Hayden's due date drew closer, our reliance, faith, and trust in God grew stronger as did our commitment to providing the best opportunities for our son. Kelsea left for St. Louis (Best Laid Plans) with my mom, after an amazing night of prayer at Columbus Road. We could actually feel God take some of our worries off of our shoulders and put them directly on to the shoulders of those who reached out to us. Again, God showed us that we can plan and plan, and wish and want all we want, but it is still His show and we are just living in His world!

Hayden came early on January 18, 2013 and Fox 2 and Mandy Murphey were there in the delivery room to document the entire experience. However, this wasn't a complete surprise because babies with Omphaloceles tend to do this. Even though we were there for four weeks and I can remember just about every single day and every single nurse we had, the time still flew by in the NICU. February 17, 2013 and we were headed HOME!

The next few weeks were filled with ups and downs and ambulance rides and emergency room visits and short-notice surgeries, however, Hayden was progressing and growing and his Omphalocele was getting smaller!

Surgery came on June 24th, and as we reminisced with Kelsea's mom and step-dad over the weekend, this is what God had been preparing us for. I lived some things a parent never wants to experience those two weeks after his surgery. There were definitely many more lows than there were highs over the course of two weeks. However, Kelsea and I couldn't be happier that God led us to Barnes-Jewish, St. Louis Children's, and the Fetal Care Center of St. Louis. The doctors there twice saved Hayden's life and God helped guide their decision making process to ensure Hayden recovered as quickly as he could. Thinking back to some of those nights almost three months ago, I still get choked up. It brings tears to my eyes thinking about what those doctors did for us and Hayden and the fact that I feel like I am forever in debt and grateful to them. I hope some day he has the chance to cross paths with some of them. again. 

Our weight is a little over 14 pounds and even though he is not in the heavy-weight category, he is holding his own and reaching milestones left and right! Hayden is sitting up, without support, for small periods of time. His first tooth finally broke through the skin last week, and even though he isn't crawling yet, he is pushing himself up on his arms and working on pushing his knees and legs under himself. He has also become mobile...or at least when we put him in his walker! He loves the kitchen floor and can really get that thing moving across the tile when he is chasing after Tucker! He is not quite strong enough to make the trek over the carpet!

When somebody sees him for the first time, they are always amazed at how well he is doing. They always say it is due to the MANY prayers being said. I couldn't agree more and tell them that they are being heard and answered on a daily basis. We continue to feel God's loving touch on our lives and are reminded daily that he is in control. We have been so blessed. Even though we continue to do things on a daily basis that separates us from God, He continually forgives us because that is what He does!

Kathy Asbury and Beth Griffin have planned a benefit for Hayden that is quickly approaching. I have tried to stay out of it and have tried to not bring it up, but I have to mention just how wonderful people are and how God has been working in them. When they first asked us about it the day of Hayden's surgery, it was going to be a softball tournament. Well, due to some amazing people (MANY to be exact), the benefit took on a life of its own and people were jumping out of the woodwork to help plan the benefit and wrangle up some entertainment. Before we knew it, it was a full-blown K of C BBQ! Not really, but it was very humbling to see what people were wanting to do. It has since been scaled back and will be held at the Columbus Road Kidzone in a week and a half. It will be a more intimate gathering and Kelsea and I still plan to pay it forward as much as we can.

This past year has really put things in to perspective. There have been so many times when we felt like we had things so rough or that things were not going the best for us. However, we usually just had to leave Hayden's room in the hospital and we would pass 15 families/patients in 30 seconds who had it so much worse. There were patients in the PICU (where he was for 11 nights after his surgery) that will never leave. There were families in there who will never get to hear their child talk because of breathing tubes or other issues. Kelsea and I would get down on ourselves and feel sorry for ourselves at times, but we would quickly be grounded. We discussed the benefit (many nights) and what people were wanting to do for our family. We felt guilty because even though there have been many medical costs and future bills, there were still so many people who have bigger issues than we do. God has definitely showed us generosity over the past year and we have pledged to pay it forward and show others the love and generosity that He has shown us.

Before I leave you with some pictures, I want to ask for a special request. Hayden, Kelsea, and I have some special "online" friends in Washington and they have spent more time in the hospital than what any parents wants to do in a lifetime. I know it is part of God's plan, but I ask that you say a prayer today for Ryan, Carly, and Gavin Christiansen today and ask that it be God's will that Gavin be released from the hospital and be able to start eating and breathing without support. Gavin was born just shy of two months after Hayden and he has had a rough go with things. I take comfort in knowing that once this passes, they will be able to accomplish anything. However, they are also due for some quality family time at home again and away from the hospital. I have a feeling that Hayden and Gavin will get to hang out and play with each other one day in the not so distant future!

I honestly don't know when the next time a post will show up, so hopefully this one will hold you over for quite awhile. I enjoy writing and telling Hayden's story, but I would also rather spend my free time playing with him! Sorry, but he takes a little priority. Until next time, I will leave you with some pictures that may create your own "flashbulb memory."













Sunday, August 4, 2013

Evolving

Why is it that ever summer, as an educator, once the calendar flips over to August, it seems like the hands on the clock move twice as fast? I guess it can be attributed to being in the building, preparing for the upcoming year. Working on rosters, supplies, rearranging the room for the fifth time, etc... Whatever the reason, we have hit that point. We still have two weeks before the first "official" day back, but it's here. This is good and bad.....I have been at school quite a bit over the past week and although I have missed Hayden and thought about him every single moment, it is also a good practice run to prepare being away from him.

As I'm sure you have noticed, it has been 2.5 weeks since my last post. I wish I had more time to update every day, but there isn't. Unfortunately, with school starting, I have a feeling this will become the norm and I will be lucky if I can get a new post every 2.5 weeks.

Kelsea and I have entered our new normal, once again! This normal is one that most of you have experienced at one point or another. We feel like we finally only concern ourselves with worries that any new parent worries about.......
  • He's making sounds in his crib; do we pick him up or let him be?
  • What time does he need to go to bed?
  • How long and when should he nap?
  • Do we take him to the Cardinal game or not?
  • Is it too early to strap a saddle to Tucker and let him "babysit" Hayden for a few hours?
My point is that our concerns are everyday concerns and not ones that nobody has an answer to. We aren't worried about the pressure on his lungs, stomach, intestines. We aren't worried about him putting on weight and we aren't worried about the amount he's eating. Ok, I just lied. The last two things are still right up on a daily basis, but he is doing excellent! 12lbs, 13 oz. as of 6:30 a.m.! That's 1.8 pounds in 27 days!

His incision is looking awesome and it hasn't bothered him one single time! Hayden has also found his outside voice! I don't think I have ever smiled and laughed as much as I have in the past two weeks. Every time he experiments with a new sound or screams, it is the cutest thing! I'm sure it won't be so cute in two years when he's throwing a tantrum and screaming in his bed at night! Hayden also loves playing with, staring at, and reaching for the animals. As you can see in the two videos, the cats don't mind Hayden being around at all!

 
 


We also finally got Hayden his high chair this past week. He really enjoys being able to sit at the table with us for dinner instead of lying on the ground! With this, Kelsea was also able to introduce his first "solid." Oatmeal! I still have no idea why it's called solids when it is the farthest thing from it! It is basically breast milk with the tiniest flecks of oatmeal powder!! Whatever it is, Hayden likes it! Why wouldn't he though....anything and everything is going in his mouth! Too bad that the first night we had the high chair, he took a two hour nap and slept right through dinner!

A week and a half ago, I was able to make it down to St. Louis for a Cardinal game. It was a great game; unfortunately, it was the last game they won for I believe 7 straight games. Ugh! It was also a great feeling driving past the Kingshighway exit because it had been a long time since I had done that. The next morning, we travelled back to St. Louis for Hayden's surgery follow-up appointment. We were very excited to see Dr. Warner and anybody else that we crossed paths with. We also were planning on meeting up with the DiFranco's (Baby Frankie's Journey), but unfortunately we left about an hour after we had planned and we told them the wrong Babie's R' Us we were going to! So, since we were on the opposite ends of St. Louis, and it was raining pretty hard, we decided to postpone our lunch until the next trip. I felt bad, but know that we will meet up next time. We were so excited to get to see Frankie again and take some pictures! Oh well, wasn't in His plan. Hopefully next time we will have a different outcome.

Kelsea's MFM (OB-GYN Specialist) who delivered Hayden knew we were coming back down for an appointment and wanted to get a photo with his "team" from beginning to end. They said they would have a photographer and wanted to round up as many people as possible and would take some pictures after his appointment. The appointment went great. Dr. Warner and the fellows were all very happy to see him and his progression. They couldn't believe that he had zero vomits since his surgery. Dr. Warner had warned us that they would probably increase due to the pressure of his closure. I'm ok with him being wrong on that accord and won't count it against him!!! He also cleared us for 6 months, so we hopefully won't be making any trips to St. Louis until after the New Year!

The photograph session turned out to be a little more than what we had planned. The photographer was actually from Outlook, which is Washington University's School of Medicine's magazine that is published six times a year. They wanted to do a story on Hayden and his doctors. It was great and Hayden did fantastic, as he always does. I just hope they share some of the pictures with us because there were some fantastic ones. I was able to get a few myself from behind the photographer. I wish a few of his nurses could've been there because they played such a big role in Hayden's success, but it is a little more difficult to pull the NICU nurses away from the patients. There is a photo with everybody in it, but since I was in the photo, I obviously couldn't take one myself. Hopefully the photographer will e-mail us a copy of that!



This is Shannon (L) and Chris (R) our two nurse coordinators who were there for us at the very beginning. They are two wonderful people who help make the Fetal Care Center click. They took care of all of our needs before Hayden arrived and ensured that things went smoothly.







Dr. Knipstein, who was one of Hayden's NICU Fellows, is his favorite doctor because she loves to snuggle with Hayden every time he comes to St. Louis. We feel very blessed and fortunate that she was one of his doctors.





"Look at that Mom!" He may have
found another calling!
Dr. Cahill (MFM) on the left and Dr. Warner (Surgeon) on the right. These two will always hold a special place in our hearts because she was the one who brought him in to this world (she was the one who said "Hi Hayden" from the original Fox video if your remember that) and he was the one who gave us so much by performing Hayden's closure surgery.


As we continue to evolve and move from "crisis" mode into normalcy, we would like to thank everybody for their continued prayers, thoughts, well wishes, and support that you have wrapped us in for the past 11 months. We know that God has been at work in our lives, and yours (whether you know it or not), and we feel beyond blessed that He has led all of us down this path. From the very beginning of this journey, friends, family, colleagues, and complete strangers have helped to encourage and lift us up, on good days and not so good days. It has been a very humbling journey, but one in which we have both grown immensely in our faith, our love, and our awareness of those around us. What you have done for us in the past, and continue to do on a daily basis, has instilled a desire to show the generosity and love, that God has instilled in all of you, to many more people. We don’t know what shape or form this will take, but we know God wants us to “pay it forward” so to speak so that many more people will see the power of His love and His plan.


Since the posts may get fewer and farther in between due to school starting, you might like to be updated by an e-mail whenever I add a new post. If this is the case, you can add your e-mail address in the form below and then click subscribe. You will get an e-mail asking for verification. After you verify your e-mail address, you will get an e-mail that alerts you I have added a new post.

HOWEVER....TO GET THE FULL EFFECT...INCLUDING PICTURES AND MUSIC, YOU WILL HAVE TO ACTUALLY GO TO THE BLOG WEBSITE. YOU CAN READ THE BLOG ON THE E-MAIL, BUT IT IS BETTER IF YOU OPEN THE LINK AND GO TO THE WEBSITE TO READ!



 
Enter your email address:


Delivered by FeedBurner

Thursday, July 18, 2013

Onward and Upward

As Kelsea and I were weighing Hayden this morning and talking about his current feeding habits, it was hard to imagine that is has been 182 days since that crazy, hectic day (So The Plan Was....). Hayden has been doing fantastic. In fact, he has been doing better than fantastic. As Kelsea put it the other day, we have reached our new "normal." We are no longer living in "crisis" mode as it seemed we were the first five months. All of the problems Hayden had to deal with on a daily basis before his surgery (painful gas, reflux, vomiting, feeding difficulties, slow weight gain) have disappeared. He has done a 180 and we are living a completely different life today.

Before his surgery, it would be a great day if Hayden dank 100 ml (little over 3 oz.) in a feed. Based on his weight, he should have drank close to 28 oz. of milk per day. However, he was lucky if he would get 18 oz. We had to fortify his breast milk with formula to make sure he was getting enough calories. However, due to his inability to keep the milk down, he got nowhere near the calories he needed. Since we have been home from the hospital, which has been 12 days, Hayden has become an eating machine! He has been nonstop eating and hasn't thrown up once (knock on some wood please!!!). Two days ago, he drank 210 ml (7 oz.) in one feeding....this was about 3 times as much as his normal feeding before the surgery. The first day or two home, he drank/nursed over 600 ml. Then it climbed to 700 ml, and he is now routinely pushing close to 900 ml/day, or roughly 30 oz. This is the amount he should be eating based on his weight.

Speaking of his weight....in the past 12 days, since we have been home, Hayden has put on 1.02 pounds! He passed the 12 pound mark this morning!!! It took us 27 days to go from 9 to 10 pounds and 30 days to go from 10 to 11 pounds...however, God decided it was time for Hayden to catch up and get back on track to where he should be. We are just so thankful because even though he only lost about 1/2 pound in the hospital, he had no fat on his body and you could tell just how much he was struggling. In the picture I have included here (screenshot from the app that tracks his weight gain), you can see just how he had struggled with his weight gain (and began to worry his doctors) in the few weeks prior to his surgery. As you can see, he is still below the 5th percentile, but he is getting closer to being back on the chart. When you look at the adjusted chart, which technically we should since he was early, then he is even closer. We are just so happy and so blessed with how well Hayden is doing.

Hayden has also started rolling over. At first, it was only if Kelsea gave him a little help. However, his arm would always get in the way and prevent him from going fully over. Not anymore! He is going from back to stomach and vice versa! He still has PT and OT once a week and they give Kelsea plenty of stuff to work on with him, which she does such an amazing job with Hayden. I am so happy that she is going to be able t stay home with him this year and continue to work with him as he grows. Kelsea also took him "swimming" a few days ago and she said he is part fish!

In case you didn't get to see the report Mandy Murphy, from Fox 2 in St. Louis, did last week, I am including the link below:

Corrective Surgery

As she did in January with his birth, Mandy did an absolutely fantastic job reporting on Hayden, what he has gone through, and the wonderful care he has received from his doctors, nurses, and all involved at Children's Hospital in St. Louis. I also learned something new while watching the video of his surgery. I had noticed that there was tape over Hayden's eyes in one of the shots. With all of the surgeries I have had, I never realized this, but in most surgeries, your eyelids are taped shut so they don't open and protect your eyes. Crazy, huh? We go back for Hayden's follow-up with Dr. Warner next week. We are excited to see him and feel he will be excited at Hayden's progress as well. We are also excited because we are going to try to meet the DiFranco's, who we were able to officially meet after our son's had corrective surgery within 24 hours of each other. It is a neat thing when parents of children who had Omphaloceles get to hang out and meet!

Kelsea, Hayden, and I continue to feel blessed beyond what we deserve. We continue to meet people and hear stories about how Hayden has touched their heart and how he has helped them strengthen or renew their faith in God. We know that this plan God has for us was laid out a long time ago. It is such a wonderful thing to see Him working on people around us. Wednesday night, I had the chance to attend the men's bible study at Columbus Road Baptist Church and the verse that night was the following: Then Jesus said to His disciples, 'If anyone wishes to come after Me, he must deny himself, and take up his cross and follow Me."  - Mathew 16:24

It was a great thought provoking discussion regarding turning away from our selfish ways and giving yourself to God and others. This is something that I struggle with on a daily basis. On an hourly basis. However, seeing others do this and put me in front of their wants and needs is such a humbling experience and great reminder of what He wants me to do. We saw this tonight when a student dropped by the house with an absolutely wonderful handwritten letter and gift from Purina. It again made me feel like we don't do enough and hopefully Kelsea and I can do the same for others. (Thanks Hannah!!)

I would like to ask those who read this to say a quick little prayer tonight or tomorrow for Rose and Ross Finley and the Longo's. She is in the 28th week of her pregnancy with her twins and are in Springfield for a few days while her doctors observe her and the girls. I can't speak for the Finley side, but knowing they have some Longo blood in them, they are going to keep mom and dad, as well as grandpa Matt and grandma Amy on their toes and they could all use a little peace over the next few days.

I feel like this post jumped all over the place tonight and it might not make sense. I am worn down after working outside in the yard for about 5 hours today. Much needed and long overdue....great day to do it...right??!!! However, I have wanted to get a post out for the past 4 days.....so I forced myself to do it tonight.

Now that it is 10 o'clock, I feel like it is way past my bed time. I must be getting old. I am not the only one getting older though....those 182 days I mentioned earlier translates into six months!








Wednesday, July 10, 2013

Catch Up

By some of the e-mails I have received, several of you are on the edges of you seat waiting to hear how things have been going the past 4 days. I will rewind to my Saturday morning post and try to catch you up to where we are today.

My last post Saturday morning left off as we were waiting for doctors to make their rounds. Hayden had a better night Friday night than he had during the day, but it was still a struggle. Kelsea and I took turns holding him in the chair while the other tried to sleep on the couch in the room on the 10th floor. This went on through the night until he finally fell asleep in Kelsea's arms around 3 or 4 in the morning on the couch/bed while I made my way down for what was probably my 8th cup of coffee and a Snickers as I prepared to watch the next episode of Friends on one of the TV stations.

After waking up, Hayden did much better. He still didn't want to be laid down in his bed, but he was doing better. Rounds came and they said clinically, on paper, he was good to go home. However, they wanted to observe his feeds again overnight. We told them we were ready to go home; however, if they felt it was absolutely necessary to keep him again, we trusted them. BUT....we were ready to go home!

The attending surgeon made her way in to Hayden's room later that morning and checked him out. She said that he looked good and she felt comfortable sending him home with us. She said they know they can trust us and that we are his best advocates and they know that if there was a problem, we would bring him back right away. She finally gave the green light and signed the orders to kick us out. I went back to the hotel to load the vehicle, and just like that, we were gone, heading home, with absolutely nothing attached. I think my dad said it best when he posted the following on Facebook: "Can you believe it? Hayden will be leaving Children's Hospital in a few minutes....... no IV's, no feeding tube, no vent tube, no OG line , no heart monitor, no PICC line.....and for the first time in his life,  NO Omphalocele!!!!!!!!!!!!!! "

Just a week ago, I was certain he would come home with oxygen and a feeding tube. I had even asked the doctors to put a feeding tube in because I was so worried that he wasn't getting the proper nutrition (he wasn't either...remember the PICC line was only a "Pic" line and he could only get the partial TPN!). How many times does a parent ask the doctors to put a feeding tube in??!!!

We were ok with him coming home with those things, apprehensive, but ok if it meant we got him home. However, once again, God blessed us with having nothing attached to Hayden except his mom and dad's arms!

We left the hospital around 3:45 Saturday afternoon. Hayden had a couple of prescriptions, all except for one that were technically OTC. The one that wasn't OTC was the one he really needed. This was to help wean him off of his narcotics. Most pharmacies closed at 6 in Quincy, and I knew we wouldn't be able to get them filled. I thought about getting it filled at a Walgreen's a few blocks from the hospital, but remembered the one in Quincy was open 24 hours....and I was ready to get out of Dodge!

Hayden fussed some on the way home; not his normal asleep in the car self, but it wasn't horrible. We were home around 6 p.m. and I was back out the door by 6:30 (after playing with Tucker for a few minutes) to drop the prescriptions off at Walgreens. They were going to be ready about 7:30, so I pulled around and played on my phone while I waited for them to be filled. However, I was interrupted by a phone call from Walgreen's stating they did not have his medicine and that all the other stores were already closed and they could try again at 10 tomorrow morning once more local stores opened. I had Kelsea call Dr. Asbury and see if there was anything we could do to keep Hayden from going off the deep end with withdrawal symptoms until tomorrow. He was due for his next dose in 30 minutes and would be ready again for the following one at 8 the next morning. She said it would not be good if he missed two doses.

Walgreens informed me that Jacksonville was the next closest Walgreens that was open 24 hours and they would call to see if they had it. My response was, "Jacksonville is 90 miles away and that doesn't help me get the medicine!" I was running on 2 hours of sleep in the past 36 hours, hadn't showered in the same amount of time, was hungry, and ready to be home. The clerk giving me this "dumb" idea was not going to help me. However, I quickly realized what I had to do. Ugh.... Yep.....you guessed it! After all of the aforementioned "negatives" as well just finishing driving 2.5 hours from St. Louis, I left Walgreen's (after they called the Jacksonville store first!!!), stopped and got a large coffee and a large Mountain Dew, and pointed the truck East on I-72 at 8:00 at night!

I called Kelsea as I was pulling out and told her to hold on to him if she could, I would be home as soon as possible. He, of course, was fussing and inconsolable and I felt so bad for her, and him. The drive wasn't all that bad. It went pretty quickly. I was home by 11 and Hayden got his meds. He was in bed asleep shortly after that and didn't wake up until the next morning.

His crying and agitation has continued on and off for the past three and a half days. Kelsea and I try to remind ourselves that Hayden is experiencing many normal baby stuff, but we are also cautious not to just write it off as "normal." We know that gassiness is something that all babies deal with. We know that teething and wanting to be held is something that all babies deal with. However, since his intestines and other organs are not necessarily in the correct anatomical place in his body, we still need to be aware that he does have the potential for problems that other babies wouldn't have. For example, last night was rough. He would not sleep for more than 15 minutes at a time and from yesterday afternoon until about 1 this morning, he had bouts of crying/screaming, almost non-stop along with arching his back. When he was held, he was good (for the most part). When he was put down in his crib, he would start screaming again. When he would fart, he would be better, for a while.

Again, we know these are all things that most babies deal with, but when it goes on for 4-5 hours at a time, it seems like it is excessive.

Sunday brought a new day. Hayden had turned into an absolute pig! The first day he started eating in the hospital, he set a record for the amount he had eaten in a 24 hour period. Since he was eating so little before his surgery, we would still measure the amounts in milliliters and not ounces. His first day, he ate around 650 ml. He had only eaten over 600 ml probably 4 or 5 times in his life!

Sunday, he blew that out of the water and hit the 700 mark. Monday, he did it again and ate over 800 ml in a 24 hour period! This is absolutely some of the best news we have had! Hayden's Broncho/Tracheomalacia can only be "cured" if he outgrows it. In order to outgrow it, he needs to eat. He wasn't eating well before his surgery, but things have changed. He dropped close to half a pound while he was in the hospital, but in the 3.5 days we have been home, he has gained more than a 1/4 of that back!

Over the past few days he has continued to have his crying/screaming fits, but we are still attributing that to gas and his intestines kind of being all over the place. This may be something he fights for a long time. However, he is back to his normal, happy self. Hayden was happy to be home to all of his toys and his Tucker, Slice, and Killer. He was also as close as close can get to rolling over on his stomach (on his own) in the first 24 hours since we had been home from the hospital. If it wasn't for his arm underneath him getting in the way, he would've done it!

We haven't really mentioned it to a lot of people, but if you recall, Mandy Murphy from Fox 2 in St. Louis did a special report on Kelsea and Hayden's birth back in January. You can view that post here. Well, they wanted to do a follow up on Hayden. They actually had their camera crews back in the operating room as they fixed Hayden's Omphalocele. We were supposed to do another interview with Mandy at the hospital last week, but I asked to push it back several times due to Hayden struggling as he was and Kelsea and I were not emotionally ready to do an interview. As luck would have it, Hayden was sent home before we could meet, so she settled for a phone interview yesterday!

It definitely won't be as big of a piece as she previously did (I'm guessing) but it should be pretty informative. It is set to run on the 10 o'clock newscast tomorrow night (Thursday, July 11). Hard telling where it will fit in, but check it out. If you're not in the St. Louis metro area, you can watch it online here: Fox 2 On Air Streaming.

While we were waiting for Mandy to call us, we got a call from Dr. Warner to check up on Hayden. We were both very impressed that he called to see how Hayden was doing since he had been released. Even though we know God is in control and placed this man in our lives for a reason, we are still very thankful for the work/role that Dr. Warner played. I also can't say enough about all of the doctors, nurses, and staff of the PICU and entire hospital. There were several things that I witnessed that a parent never wants to witness that gave me a different outlook. Seeing your son "code" two times (meaning he had respiratory failure) and watching people save his life and breathe for him, put things in a new perspective. These doctors and nurses and technicians took an interest in Hayden, our son, and he was more than just a patient and a job. I could see it in their eyes that they worked on him as if he was their own son. For this, I will always be in debt and grateful for their help.

Obviously, the previous paragraph shows that I am thankful that the good Lord placed these doctors and this hospital so close to us. There are many, many things that I am thankful for and could go on and on for days. Right now, the biggest thing I am thankful for is to have my family all together again....even if there is not room on the couch for me, and that Hayden has been eating like a pig and even though he lost some weight while in the hospital, he is quickly catching up. 

 

Sunday, July 7, 2013

Home

We made it home last night....some of us later than others. We are very blessed and fortunate to have God in our life as well as our family and friends 

Will try to get a good post later today.

Saturday, July 6, 2013

Waiting

So the story is....well, we don't really know! Hayden had a great day yesterday in terms of feeding. However, he wouldn't sleep and was agitated and inconsolable. Not sure if its gas, pain, narcotic withdrawal, something else, or combination of all of the above.

He had a somewhat better night and is sleeping with Kelsea now. Waiting on rounds to see what the doctors think. I am hoping they say he is just struggling because his intestines struggle while "waking up" and decide to pull the PIC line and NJ tube and send us packing. 

Hope to know shortly.

Thursday, July 4, 2013

Complaints

I want to complain about the following things:
  1.  
  2.  
  3.  
  4.  
  5.  
  6.  
  7.  
  8.  
  9.  
  10.  
  11.  
  12.  
  13.  
  14.  
  15.  
I really could go on and on, but I'm trying not to. Sometimes it is so frustrating to see your child crying, and you don't know what it is for....especially when he NEVER cries at home. Sometimes I want to yell and scream and tell the world just how mad and frustrated I am, but I know that won't change anything. When I take a step back and look at the whole picture, how could I ever complain? When we walk through the halls of the hospital, how could I ever complain? When I see some kids in the rooms next to us who more than likely won't be going home, how could I ever complain? Even though when I look at the moment, when I look at a tiny snapshot of the bigger picture and I get lost in it, I know I need to take a step back and look at where we have come from Since September 17th. I need to look at how happy the doctors are with Hayden. I need to look at the looks on the doctors' faces when they come in and see Hayden. He is a star! There are things that I wish were different right now, but things are good. Things are very good. Kelsea and I are amazed at the outpouring of support, thoughts, and prayers that people are sending out for us. We are truly blessed and sometimes don't feel like we deserve everything God has given to us.

Hayden had to have a little oxygen overnight as we was agitated, however, it is back off and he is doing well. The goal today is to keep him happy. Keeping him happy I think is going to revolve around two things.
  1. Keeping his bowels moving gas and poo....he doesn't like it when either get stuck!
  2. Getting some milk in his belly. Even though he is being fed, the tube goes through his stomach and into his jejunum so he doesn't get the "full" feeling. Once he wakes up and acts hungry
He probably could have made it out to the "floor" today (10th floor/Surgery Recovery), but his PICU doctors want to monitor him one more night just because he was showing some signs of withdrawal from his medicine. They don't think it was full blown, but they want to make sure. We are ok with that. We would never turn down the extra attention and care he so deserves!

Mom and Dad are on their way back down for a few hours. They said a couple of nights ago, when they got home, Tucker was extremely disappointed. They drove my truck, and when he was looking out the front window and saw it pull in the driveway, he figured it was me. Mom said he ran outside and circled the truck several times, looking inside, but was so despondent when I didn't get out! It broke my heart!

That's ok though because I have a feeling we will be home to see him soon! Until then, it is time to try to give him a bottle. Wish me luck!

video

Wednesday, July 3, 2013

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!

Tuesday, July 2, 2013

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. 

Sunday, June 30, 2013

Adrenaline or too Much Epinephrine

I usually post a link to an update to new posts on Facebook, but you can also be updated by e-mail whenever I add a new post (the following day). Add your e-mail address in the form below and then click subscribe. You will get an e-mail asking for verification. After you verify your e-mail address, you will get an e-mail the following morning between 9 and 11 a.m. (Central I believe) that shows you I have added a new post.

HOWEVER....TO GET THE FULL EFFECT...INCLUDING PICTURES AND MUSIC, YOU WILL HAVE TO ACTUALLY GO TO THE BLOG WEBSITE. YOU CAN READ THE BLOG ON THE E-MAIL, BUT IT IS BETTER IF YOU OPEN THE LINK AND GO TO THE WEBSITE TO READ!


Enter your email address:


Delivered by FeedBurner


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.

Saturday, June 29, 2013

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!!