Pneumonia :(

A couple weeks ago Kyler got a cold. He was coughing and had lots of nasal congestion. I kept him home from preschool on the 11th because of it. I was really worried about Caden getting it so we were extra vigilant about having Kyler wash his hands. We were also going crazy wiping everything down and disinfecting things. Unfortunately it wasn't enough... By the 13th (Saturday), Caden started coughing and having a little trouble breathing. I immediately started his nebulizer breathing treatments in order to hopefully catch this and stop the severity.

By Sunday night I was getting more worried. In our area right now there are a lot of sick kids with pneumonia and RSV and both of those could be really dangerous for Caden. I didn't want to take him to an urgent care or ER because he would only be exposed to many more germs. So I decided to wait until 1st thing Monday morning to call his pulmonologist's office and try to get in to see him. Thankfully they got us in right away. He did an exam and told me Caden appeared to just have a bad cold. He said it didn't look like RSV and he said it definitely wasn't pneumonia... yet... He put Caden back on oxygen at night (we had stopped the night oxygen a couple weeks prior to that) and we started a more rigid regimen of breathing treatments as well as steroids in hopes of keeping the cold under control.

By Wednesday morning he definitely seemed to be better and I was relieved. We started to resume normal activities and he seemed okay, just sleeping a little more than normal. However, Thursday he was coughing more and sounded worse overall. By that night he was significantly worse. After 3:30 am, he didn't sleep at all. He was coughing a lot, in respiratory distress and had a fever of 102.4. But I still wanted to avoid the ER. So I called the pulmonologist's answering service at 5:45 and they put me right through to him. We already had an appointment to see him as a follow-up on Friday afternoon at 1 pm. I told him what was going on and he told me to give him another dose of steroid, give him another breathing treatment and bring him into the office at 7:30 am.

Greg had already left for a meeting at the church so I packed both the boys in the car and drove to the doctor's office. Greg met me there and took Kyler back to the church with him. Caden's home health nurse met us at the doctor's office as well. The doctor said Caden most likely had pneumonia and he sent us to get a chest x-ray for confirmation. After we got the chest x-ray, we took it back to the doctor's office and he confirmed it was pneumonia. :( I asked if there was any way we could treat him at home in order to avoid a hospitalization. I wanted to keep him at home if at all possible.

Luckily the doctor was in 100% agreement with us. He said he thought it would be better for Caden to remain at home as long as he responded to his medications. So I went to the pharmacy and forked over $100 in medications and started administering them to my poor little man. By Saturday his breathing definitely seemed better and by Sunday he had absolutely turned a corner for the better. I could tell he was on the road to recovery at that time. We followed all the doctor's orders to make sure he didn't regress at all. He continued to improve steadily.

On Monday he was pretty much back to his normal sweet self. He was playing happily and scooting around the house. Since he was still on continuous oxygen, we attached our extra long tubing to the oxygen concentrator. The machine is in his room, but it allowed him to move freely around the house and play almost like normal. Of course I had to untangle him periodically but at least it was mostly back to normal.

Then this morning (Tuesday) I took him back to his pulmonologist for a follow-up. He said his lungs had “significant improvement” which is FANTASTIC! And, he had us change the oxygen to “as needed,” discontinued the steroid (which makes him a little beast!). And, two of his breathing treatments are also only “as needed.” So we are left with completing his dose of antibiotics, Pulmicort twice/day and Singulair once/day for the next couple months. I would say that is improvement!

God is so good to us. He made sure we could get Caden treated on Friday before the weekend in order to avoid a hospitalization. If he had taken a turn for the worse on Friday night, we would have had to go to the ER and most certainly would have ended up with Caden being hospitalized. And, once Caden was receiving medication to treat the pneumonia, he responded relatively quickly. Our little man is such a blessing and I am so grateful for the progress he has made in his recovery.

Getting this respiratory infection was our worst fear come true. This is what we've been trying to protect Caden from for the last year. We have kept him at home and isolated for 5 of the last 12 months in order to keep him healthy. I think we have done a pretty good job. I think it is a blessing that he didn't get sick before now. At least now he is older and stronger and can fight it off a little easier. Thank you all for your continued prayers as we still need them. Caden is such a fighter but he has a lot of obstacles stacked against him. We know God has plans for him because he has overcome so much already.

Dedication

As I mentioned in my last post, today, March 6, is the 1-year anniversary of Caden's discharge date from the hospital. He spent the first 8 weeks of his life inside the walls of Lucile Packard Children's Hospital at Stanford. What a great and glorious day it was for us to be able to take him home. And, I have to say it was a little intimidating as well. Our baby boy had so many health problems and had to have five surgeries in that time. We weren't sure if we would know how to take care of him. But slowly we became more confident. And he began to grow and develop in his own time and his own way.

During the past 18 months we have spent many hours on our knees asking God for strength to deal with Caden's life-threatening health issues. During my pregnancy, we had him annointed with oil (through me as the vessel). We placed the life of our unborn child at the feet of God and told him we would trust him. This is easier said than done and we often tried to take control back into our own hands with no success, reminding us once again to turn Caden back over to Him.

There are people around the world, many whom we have never met, who committed themselves to praying for Caden without ceasing. What a blessing for us to know that people were praying for our baby and for us. Throughout these many months, I have repeatedly been told, “you are so strong” in regards to how well we have weathered this situation. First of all I have to say, I am not strong on my own. All the strength I have comes from God. He gives me what I need. Second, I do not feel strong. Every day is a struggle. But I do what I have to do in order to fight for Caden and make sure he has everything in place to help him become the best person he can be.

With all that being said, I should get around to the purpose of this post. Today we had the most beautiful dedication service for him at our church. Our pastors allowed us to take up about 15 minutes of the service just for Caden. On this day, we dedicated him to God. It was such a wonderful program. First we played a slideshow documenting Caden's life. Most people do not really know what we've been through and what Caden had to endure. And, because we've kept him isolated at home for much of the time in order to keep him healthy, most people haven't gotten to know him either. After the slideshow, our pastor called me, Greg, Kyler & Caden to the front, as well as Greg's dad who is a pastor also. Our pastor said a few words and shared some scripture with us. Then, Greg's dad shared some thoughts and insights as well. Then the rest of our family was called up to join us as our pastor said a dedication prayer over Caden. At that point, we sat down and we had a friend sing “Bring the Rain” by Mercy Me whose lyrics are very meaningful to me. This song makes me cry every time I hear it. Here are the words in case you are not familiar with the song (you can also go to http://www.azlyrics.com/lyrics/mercyme/bringtherain.html and you can play the song):


"Bring The Rain"

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty


When the special music was over, the praise team sang “He Knows My Name” which is another song we really like. It was a truly special day and Caden did amazing! He just looked around and took it all in. He's not used to being around large groups of people and I could tell he was a little overstimulated. He is usually pretty shy around new people and I was afraid he would cry when the pastor held him for the prayer. But he did great, Caden even leaned his head on his shoulder. It was so sweet!

I had a pretty hard time holding it together during the slideshow. It was kind of weird because I've seen those pictures a thousand times and I've lived through the experience, but there was something about the occasion today which caused me to be very emotional and the tears were falling freely. Thankfully I was able to pull it together before I had to go up front. But I could hear the reaction of the people in the church as they watched the slideshow. It definitely had an impact on them.

It truly was a special day and we are so blessed to be part of such a wonderful, loving, church family. Caden will be surrounded in love as he grow up. An amazing day filled with emotion. Sadness. Relief. Sorrow. Joy. Gratitude. Love. Hope. And so much more. Thank you all for coming along with us on our journey. It's going to be a long one and we've only just begun. Your prayers, love and support are what sustain us and help us get through each day. We love you all! Thank you!

I will post more pictures of the dedication later.

And, if you didn't already read my last post, it has lots of great pictures of our family. :)

Catch Up

It's been a long time since I've updated. Things have been really busy the last couple weeks. Mostly just our regular busy schedule but with some news which I will try to catch you up on now.

We continue to increase the volume of blenderized food Caden is getting through his g-tube. At this point, he is getting more than 2/3 of his volume from real food. The only formula he gets is at night and we are slowing reducing that as we are able to give him more food during the day. He continues to thrive on real food! His gross and fine motor skills and his cognitive ability have all improved drastically! In addition, he feels better overall and is retching less. What a huge blessing for him and all of us.

We also followed up with Caden's gastroenterologist. This was the first time we had seen her since we started Caden on the blenderized diet. I hadn't talked to her or to her dietitian about it beforehand. I was really nervous about how they would respond. I thought they would be more pessimistic about it and try to discourage me from doing it. I was pleasantly surprised by their reaction. I think they realized we were serious about it and that we were concerned about making sure he was getting the proper nutrition. I was really happy they are willing to support us in this process.

We had a follow-up appointment with the neurologist on February 18. It was a good meeting and left me feeling very positive. In his observations and exam of Caden, he said he was quite optimistic in how Caden was progressing. When I pressed him to see if there was anything in particular that concerned him, he said there were a couple minor things but he wasn't going to tell me what they were. He said that the things he saw didn't add up to any particular problem so he said there was really no point in mentioning them because he thought they were going to “move toward normal.” I thought that was encouraging.

On February 19, we were finally able to get Caden's 1-year photos taken. We really wanted outdoor photos and originally had them scheduled for January 8 (the day before his birthday), but due to freezing cold, wet weather, we had to cancel them. So on the 19th, the weather cooperated and Greg and I were both available as well as our wonderful photographer! We got some of the most amazing photos that we will treasure forever! Here are a very few of them...














Then, on February 24, we had a home health nurse start working for us. She works 5 days/week, 8 hours/day and helps take care of Caden. I'm almost embarrassed to mention this because it seems a little over the top. I really don't need THAT much help but I am very happy to have some help. But, the way things work with the nursing care is that it is almost impossible to find nurses that want to work less than full time. So we either had to choose to have a full time nurse or not have one at all.

The nurse is a very sweet, caring person who loves children. She really seems to love Caden which I appreciate. It is just an adjustment for me to get used to having someone in my home ALL the time. I don't have a very big house! But the best part about having her here is that it allows me to get out with Kyler to do things. Caden is able to stay home and stay healthy. It also makes it easier to go to the store and run errands. These were things I had to wait to do until Greg was home from work. The nurse makes this so much easier! She comes to all his doctor and therapy appointments and is able to do his therapy “homework” with him more often than I had the time to do. It should really help him progress more quickly!

On February 26, we had a follow up appointment with Caden's pulmonologist. He didn't have too much to say but he said to discontinue all oxygen at night. For those that might not remember, we were given oxygen to use for Caden at night following his hospitalization in October for respiratory distress. The doctors wanted to make sure we had it at home for the rest of cold/flu season in order to keep him healthy. He was on a VERY low rate and was definitely not dependent on it but it did seem to help him breathe easier and he has remained very healthy. But in the last few weeks, Caden had started to fight us so hard when we put the nasal cannula on him, that we decided to stop. He has had so much negative touch in his life and we didn't want to continue contributing to that. So, the doctor telling us to discontinue was more of a formality.

Today, Caden had his next (and possibly last) Synagis shot of the season. This helps prevent him from getting the RSV virus. He has been getting these every month since November. They told me today they thought this would be the last shot. They do testing to see how prevalent it is in our community and if they don't find much, they stop doing the shots. For now they said to plan on not having another one. If that changes, they will call us and let us know. It would be great if he doesn't have to get anymore shots but I would rather him have the shot than have him get RSV. So we will see.

Tomorrow is a VERY big day for our family. March 6 is the 1-year anniversary of the day Caden was discharged from Lucile Packard Children's Hospital at Stanford. What an incredible day to celebrate! So, we have chosen this day to dedicate Caden to God at our church. I will post more details about it later.

For now, I think that catches me up. Sorry if this post was all over the place!