Caden's 1st Birthday

As many of you know, Caden will be turning 1 on Saturday, January 9. This is cause for a HUGE celebration of his life. However, due to the time of year and the concern of serious germs floating around, we need to keep Caden healthy. So, we are foregoing a big party which he deserves and will have a very small party at home with family and that will have to suffice.

However, we really want to do something special for Caden to commemorate this momentous occasion. So, we are asking EVERYONE who knows about him to email us at careymcculloch@gmail.com to send your birthday wishes. Here are some ideas if you aren't sure what to say (you can make it as long or short as you like):

Letter to Caden
Reflection or story on how Caden and his story has impacted or affected your life
A prayer for Caden for the years to come
A prayer you have said for him since you first started following his story
Note of praise
Or simply “Happy Birthday”

But whatever you send, please send a picture of you and your family as well. We will be taking everything we receive and creating a special book for Caden and we want him to be able to look back and see the faces of all the people whose lives he has impacted. Thank you so much for all your love and support. We couldn't have done it without you and our faith in God!

Christmas

Christmas was such a wonderful time for us this year! We were able to be in our own home with both our boys and family surrounding us. What a blessing! Last year, we moved into the Ronald McDonald House at Stanford (RMH) on December 16. I was on strict bed rest and we were waiting with uncertainty of how Caden would do once he was born. Our lives were in such turmoil that Christmas was almost nonexistent to us. RMH did such a wonderful job making the holiday special for the families in the house. They had a huge tree and a room full of donated gifts to choose from to give to your children. A local restaurant brought in a special Christmas meal also. They really did a great job with everything. But, nothing can take the place of being at home, or take away the anxiety of having a baby born with medical problems.

This year being able to be at home with both our boys, especially Caden, was such a miracle! We didn't know if that day would even be possible. We enjoyed opening presents and having a family dinner together. A very special Christmas for our family. It's amazing how much things change in a year! God is good! All the time!

Multiple Things

We have had a lot of good news lately that I want to share. Caden had an appointment with his pulmonologist on December 10. When she listened to him, she said his lungs sounded better and more clear than she had EVER heard them. She thought his lungs were growing and maturing. That is fantastic news for him. She said she doesn't want to see him again until the end of February and the only reason she wants to see him then is because she is going out on maternity leave in March and she wants to see him one more time before then.

Then, I was finally able to get Alta to approve a speech evaluation for Caden on December 18 at Bright Start Therapies. This is the clinic where he also receives PT and OT. They have a really wonderful program there with great results. His evaluation went well in terms of him being in a very good mood and cooperating quite well. The speech therapist said he definitely qualified for therapy (his expressino and comprehension are that of a 6-month-old) and said her report would make that recommendation. It would just be up to Alta to decide whether or not to approve it on an ongoing basis.

Also, on the 18th, Caden had an appointment with his cardiologist. Everything went so well and he was so happy with how Caden sounded and looked. He also said Caden sounded better than he had ever heard him. He thought his respiration rate would start slowing down soon if he continued on this trend. And, we don't have to go back for 6 months!!! I can't believe that! That is half of his life. I am so amazed at how well he is doing. What a blessing! And, the other thing I got from the cardiologist was a statement from him saying Caden could medically tolerate PT twice/week. That is all that Alta needed in order to approve that. So, beginning January 1, Caden will be receiving PT twice/week!!! Another victory won! I think Caden will begin to make huge strides in his gross motor development now!

On December 22, we had respite care reinstated for Caden. This is provided to us through UCP (United Cerebral Palsy) based on Caden's diagnosis. We receive 90 hours/quarter of childcare to be used however we choose. This is wonderful for us because it enables me to be able to get out of the house to run errands or do something with Kyler or go on a date with Greg while Caden is able to stay home and away from germs.

And, we are waiting to get our Medical number because as soon as that happens, we will receive nursing care for Caden, up to 40 hours/week. I'm not quite sure what I am going to do with that much time! But we will see how it all works out. The agency has been in touch with me and is starting to recruit nurses for us to interview as soon as we get that number. I'll keep you all posted on that progress.

Then, on December 23, Caden had an appointment with his GI specialist. We talked to her about several things, including speech therapy because she wanted to make sure he received it. I told her Caden had an evaluation the previous Friday and we were waiting to hear whether or not Alta would approve it. She said she believed he needed to receive it twice/week based on his oral issues. She has a member of her team work on this specific thing so she told me to work with her to get whatever paperwork was needed in order to make it happen. That is fantastic news! I would love to have him get speech therapy twice/week. I just needed to find out what Alta was going to provide or not.

Later that morning, I got a call from our service coordinator at Alta telling me speech therapy was approved beginning January 1! I was so excited! According to Bright Start, Caden will be the youngest client they have ever had. Up until now, they said their youngest client was 14 months when they started. So we are breaking new ground. I told the director there that I was more than happy to pave the way for other families with babies who need speech therapy at a very young age due to vocal cord damage, etc. So, once we start going once/week, I will start working on getting it approved for twice/week.

Overall I am really happy with where things are at right now. I had to be willing to fight and not give up. If I was willing to accept “no” from Alta, we would not be where we are today. Caden would not be receiving OT or speech therapy. Both things are very important for him so I am glad I was able to make it happen. I truly believe God's hands are in this and helping us get all the things for Caden that he needs! Even though we have had a lot of stress in this situation, things are finally falling into place. All in God's timing! Thank you all for your continued prayers.

Status 2

We had another huge answer to prayer yesterday. Caden's case was reviewed at Alta California Regional Center to see if he qualified to be deemed a “status 2.” We already went through this once before at the beginning of November and he was deemed NOT eligible so we were really discouraged. But after receiving a diagnosis of CP from the neurologist, our service coordinator presented his case again and they decided he DOES qualify now.

Originally we were told he needed to have a 50% delay in three or more areas which he did. He had delays of more than 50% in gross motor, speech, and self-help. However, when they originally discussed his case, they said he didn't qualify because he needed to have a diagnosis of either mental retardation, epilepsy, autism or cerebral palsy in addition to the delays. So, we got the CP diagnosis and waited to find out the results of the second meeting. Thankfully they decided he was eligible.

So, most of you are probably wondering what this actually means. Well, first of all, it means that he qualifies for MediCal as a secondary insurance right now. This is a huge relief for us because it means that if/when Caden reaches his lifetime maximum with his primary insurance, we have a backup. That is a big deal when you are considering the health issues Caden has to deal with and the long term effects of them.

In addition to the MediCal waiver, it also provides us with respite/nursing care for Caden. Currently what they requested for us is 90 hours/quarter. We are going to start with that and it should be available to us as early as next week. Yippee! However, our nurse case manager would really like to see us get a full-time nurse (40 hours/week!) in our home to help care for Caden. That takes much longer and we have to wait for the MediCal to go through which can take some time. But in the meantime, I am grateful for any help with Caden because it means it will make life much easier for us especially during these winter months while we keep him isolated.

Kyler and I have already started to go a little stir-crazy and it's only December. We still have approximately four more months left of isolation for Caden. But with respite care, someone can be at the house with Caden while Kyler and I can have a playdate with friends, or even just go to the grocery store, etc. It will be so wonderful to have that! It is just one more way for us to keep Caden healthy this season.

So, we are grateful right now for where things are at. Nothing about this process has been as easy as it could have been and I have had to fight for everything! But I am willing to do whatever it takes in order to get Caden the help that he needs to thrive. That is no small task, but I'm his Mommy and that's my job! Thank you all for your continued prayers. God is good, all the time. And, I know that without Him, we wouldn't be where we are at right now.

11 Months Old

I cannot believe that on December 9, Caden turned 11 months old! I am still in shock! I can't believe that in less than one month, he will be 1 year old! Because of all the challenges Caden has and the delays in his development, I think that adds to my feeling that he is still a small baby, and not on the verge of toddler-hood. Of course, that is true, he is a long way from walking, and probably even crawling. But even in just thinking about the amount of time that has gone by, it's amazing.

On one hand it feels like an eternity since he was born. After all, most people don't have to go through all that Caden has in their entire lives, let alone in the first year. But it also feels like he was just born yesterday. I love our sweet baby boy and am so glad to be his mommy. I am blessed to have him in my life!

Christmas Tree

On Sunday, December 6, we took our little family and went to pick out a Christmas Tree. For most of you, that might not seem like a big deal, but for us it was! Last year, we were living in the Ronald McDonald House over Christmas waiting for Caden's arrival and we didn't get to enjoy doing any of our normal Christmas things. In addition, I was on bed rest, so we were even more limited as to what we could do to celebrate.

This year it was so much fun to bundle the kids up with their warm hats and go pick out a tree. I wish we could have gone up into the foothills and cut down our own tree, but that was not to be the case for us this year. We just went to a little lot right off a busy street near our house. The location wasn't ideal, but at least we got to enjoy our time together. Kyler had fun running through the rows of trees and quickly settled on the one we brought home. We asked him about a couple other ones, but he wouldn't budge.

We brought it home and it is now sitting in our living room. We had fun with Kyler putting the lights on and hanging all the ornaments. This was something we didn't get to do last year and it made it all the more special this year. Kyler thought it was very fun to hang things on the tree and loved to see the picture ornaments of himself. So cute! Caden sat and watched everything we did with great interest.

I am feeling very blessed this holiday season as I reflect on last year and what we had going on then. A year ago, on December 16, Greg and I moved to the Ronald McDonald House at Stanford. Because I was on bed rest and because we didn't know when I would go into labor, we couldn't have Kyler stay with us. So between my mom and Greg's sister, he was taken care of. But it's not the same as having your whole family together.

There were so many uncertainties last Christmas as we didn't know what to expect when Caden was born. We didn't know if he would be able to breathe on his own, we didn't know how soon he would have surgery, and we didn't know how long he would have to remain in the hospital.

And, now this holiday season, we have Caden at home and overall he is doing amazingly well considering everything he has been through! We are so proud of our little fighter and all he has overcome so far. We know he has a long road ahead of him but given what he has accomplished already, we know he will persevere!

Enough of my sentimentalities... I hope you enjoy the pictures of our Christmas tree outing. :)

Hearts of Hope Holiday Party

On Saturday night, December 5, we attended the Hearts of Hope holiday party. It was held at Sutter Memorial Hospital and was so much fun. So many people did so much work to make it a fun, special night for the kids. There was great food and fun crafts for the kids. And there was even a visit from Santa with gifts for every child, heart children and siblings, thanks to the generosity of one person in particular!

We love our heart support group and are so grateful for everyone involved. We ended up leaving a little early because both the boys were tired. But we are so glad we got to go. It is Caden's one outing other than to doctor or therapy appointments. Otherwise he remains in isolation at home in order to keep him healthy!

Neurology Appointment

On Wednesday, November 25, I took Caden to see a top pediatric neurologist in Sacramento, on the recommendation of our nurse case manager and a few other people. Like I have mentioned before, we are trying to get Caden classified as a “status 2” at the Regional Center. Initially we were told that he would qualify if he was evaluated with delays of 50% or more in three or more areas. He met that requirement with delays in gross motor skills, self-help, and speech. However, when his case was presented, they denied him because they said he needed to have a diagnosis of either mental retardation, autism, epilepsy, or cerebral palsy.

His nurse case manager said she thought there had to be something more going on with him because of all of his developmental delays. The Regional Center was pushing me to take him to see their developmental specialist doctor but I was hesitant to do that. I felt that he was working on behalf of the Regional Center and would not be an advocate for Caden. So I didn't want to do that. I had already scheduled an appointment with Dr. Asaikar and I was planning on seeing him about Caden's issues.

I took in a stack of medical records for him to review and I also gave him a thorough verbal medical history. He asked me what my medical background was and I told him I didn't have one except for my experience with Caden. He told me I gave him a medical history as well as a 2nd year medical student. I took that as a compliment.

Anyway, after reviewing everything with me and observing and examining Caden, he said he was going to give him a diagnosis of mild cerebral palsy (CP). He believes that it is directly related to Caden's cardiac arrest and resuscitation that probably resulted in lack of oxygen to his brain. But they saved his life and we are grateful for that! Dr. Asaikar said he saw a lot of really good things in Caden. He said he was doing a lot of things right. But he also acknowledged that there were a significant amount of areas of concern. His development is all over the place. In some areas he is a couple months delayed, in others he is six or more months delayed. But he is not the "classic" case of CP that most people think of so most people would never even think he had it.

The major factors for his reason of diagnosing him with CP are the presence of some neonatal reflexes which should have been integrated and not present anymore, and the absence of reflexes which should have developed by now and haven't. He also said part of the reason for the diagnosis is to ensure he gets the necessary treatment and therapies. In his words, it is part of playing “the game.” We are hoping that this diagnosis will qualify Caden for the status 2 because that would provide us with nursing or respite care. This would help us ensure Caden's health during the winter months especially. And, it would also get him on Medi-Cal as a secondary insurance. We do not qualify for it currently because of income. However, Caden is halfway to his lifetime maximum with insurance so it would be nice to have a backup for him.

And one of the most awesome things about the appointment is when the neurologist said he was here as an advocate for Caden. He was willing to go to bat for him in order to get the things that he needed. He specifically said he wants Caden to receive PT twice a week, OT once a week, speech once a week and feeding therapy once a week. So now I need to follow up with our service coordinator at the Regional Center and see if we can get PT approved for twice a week and get speech therapy going. They are really not going to like that, but Dr. Asaikar said they typically didn't like him because he didn't let them get away with short-changing his patients. I am so excited to have him on my side and fighting for Caden!

One of the things we've decided is that we are not going to tell Caden about his diagnosis. I don't want him thinking of himself as different from everybody else. He will already know to some degree, of course. But I don't want him to grow up with that “stigma” I guess. As he gets older he will discover it on his own, especially as he starts to understand more about the reason for all his therapy appointments and doctor's appointments. But in the meantime, I hope those of you reading our blog will also respect our desires and not talk to Caden about it, or Kyler for that matter. Kyler doesn't need to know the diagnosis either. We want Caden to have as normal of a life as possible.

Thank you for your prayers. I know God continues to put good people/doctors/therapists in our lives to help us at just the right time.

Therapy Update

Since my last update about the status of Caden's therapies, we have had more answers to prayer. I was able to talk to a friend of mine who is a pediatric PT and is a provider through Alta CA Regional Center where Caden receives his therapies through. I asked her what some of the families were doing that she worked with. Just trying to find out if she had any suggestions for me of ways to get things resolved. She asked if I had already talked to my insurance company about whether or not they cover these services. I told her I had but she asked if I had specifically said the therapies were for developmental delay. I hadn't used those specific terms but I had made the assumption that they knew that. She suggested I call them again and ask about that.

Great suggestion! I called my insurance company and asked our representative if it made a difference if the therapies were for developmental delays and she said they didn't cover ANYTHING related to that! I realize for most people this isn't the answer they would want. But in my case, that is EXACTLY what I wanted to hear. So, I needed to provide a letter of denial to Alta to show them that my insurance doesn't cover these things and then they would continue to cover it. However the only form of “denial” I had was the page from our health plan handbook that specifically stated it didn't cover services related to developmental delays. I emailed that to our service coordinator and asked her if that would be sufficient. And, I also said I wanted to have an answer in writing so I had some proof of what I had been told.

It took several days, but she ended up emailing me back with confirmation that her supervisor had agreed that this constituted a denial and they had funded his OT. This was amazing news! That means, his PT and feeding therapy will be able to continue with his amazing therapists without interruption. And, he is scheduled to start OT at the same clinic next week. I am absolutely thrilled!

I am still fighting the battle for speech therapy. Every time I ask our service coordinator about it, she ignores me. I think she's hoping I will drop it. But I am not willing to do that. Caden needs to have it to help him learn to compensate for the physical vocal cord defects he has. So next week I will be following up on that and we'll see where I get.

In the meantime, I am immensely grateful for where we are at and that Caden can get the help he needs. Don't get a Mama fired up because that's when things start to happen. I'm in fighting mode and am not about to give up! God is with us through everything and I know he will not leave us. Because I am posting on Thanksgiving, I want to say how thankful I am for the progress we've made.

IFSP

On Tuesday, November 10, we had Caden's Individualized Family Service Plan (IFSP) meeting at our house. This is to talk about the services he is receiving through the regional center. In attendance were Caden's nurse case manager who is provided to us through our insurance (I have previously mentioned how awesome she is), our service coordinator at Alta CA Regional Center and her supervisor, a nurse from SCOE (Sacramento County Office of Education), and Caden's infant development specialist.

One of the first things we talked about was the fact that they couldn't make an exception for Caden in terms of not billing our insurance for his therapies. This was something I had posted about a couple months ago how we had a huge answer to prayer that they were going to make an exception since he is in immediate danger of hitting his lifetime maximum with insurance and he is only 10 months old! I was crushed! I had ben counting on this and now I was told it couldn't happen. Actually what they told me is that they would take his case to their Best Practices Committee and have them make a determination. I have to assume they will say “no” or I'm setting myself up for disappointment.

So, as it stands currently, I have 90 days in which to get insurance ready for billing for his therapies. However, it's not quite as simple as that. Caden's PT isn't set up with insurance yet. They are in the process of being added to the network, but it hasn't gone through yet. This is the case with many providers for early intervention services. They didn't have to be on insurance networks before because they were getting reimbursed through Alta. But now everything has changed and they are scrambling to get on provider networks. But the process is taking a long time. So even if I wanted it to go through insurance, we couldn't do that with our current PT. That would mean we would need to change therapists. I do NOT want to do that! We have the most amazing therapist who truly loves and adores Caden AND is an AMAZING PT! I have encountered people from all over who know her through various means and everyone loves her and talks about what a good therapist she is. I do not want to lose her.

The other piece to the puzzle is this: currently there is a loophole in the state law that doesn't affect the Infant Development Programs (IDP). Easter Seals has an IDP and it is kind of an umbrella for overall treatment for kids. We currently have a developmental specialist with Easter Seals who comes out twice/month and works with Caden. Alta is pushing me to move all the therapies to Easter Seals and have them cover everything. I am not anxious to do this because it is likely that the loophole will be closed very soon for the IDP's and then I would be back in the exact same boat I am now.

In addition, Caden has had evaluations for OT and speech therapy and in both cases, it was recommended he start services right away. For OT, his fine motor skills are delayed and he needs extra assistance in getting them to where they should be. In the case of speech, he has more than a 50% delay which is a concern in and of itself. However, when you consider that his left vocal cord was paralyzed during the repair of his heart (it is fully functioning now), and his right vocal cord is permanently damanged from the ventilator tube, he is at significantly higher risk for speech and language delay than the average child.

However, I was told at the IFSP that we could not start either of these services for Caden. They said maybe when he was two years old we could look at speech therapy again. I'm sorry, but that is WAY too late! Kyler started his speech therapy when he was 18 months old and I'm glad it didn't start a day later. And, he didn't have the physical problems to overcome with the vocal cords like Caden does.

The meeting lasted 2 ½ hours when normally it would be about an hour. The way it left off is that I would be receiving a Notice of Action (NOA) denying OT services completely. And, they would request a speech evaluation through Easter Seals. And, the things he is currently receiving (PT, feeding therapy, and developmental specialist) would continue as they are for 90 days. That is the length of time I have to get everything set up through insurance. Once the 90 days are up, they will send me an NOA telling me the services will end. When I receive that notice, it has information on it to submit an appeal. Once I submit the appeal, the services remain in place until a decision has been reached at a hearing.

In the meantime, I did a couple more things this week. I contacted Disability Rights CA and told them Caden was being denied services that he needs. This is an advocacy group that provides pro bono legal work on behalf of children with disabilities. They have assigned me an attorney and as soon as I receive the NOA regarding OT, they will get started on my case.

In addition, I contacted my insurance again. I've talked with them several times already regarding what is covered and what is not. But I made some assumptions on what they knew in regards to the reasons why Caden was receiving therapy. So on the recommendation of a friend who is a pediatric PT, I called again and asked if there was any exclusion in the plan if the therapy was for developmental delay as opposed to an injury, etc. To my relief, there is a difference!!! Our plan does not cover any treatment that is for development delays. I got the health plan handbook and emailed the page indicating this to our service coordinator and asked if this was a sufficient form of “denial” from insurance. I have yet to get an official reply back. She said it looked optimistic, but couldn't tell me for sure until it went through her supervisor. I told her I wanted an answer in writing. That way I have the documentation if I need it later.

So, here we are... still unsure of what is going to happen. But if this page from the handbook is sufficient it should solve the problem of our current therapies. We should be able to keep those in place. I'm not entirely sure what will happen with the OT and speech therapies. But believe me, I am willing to fight as much as I need to in order to get Caden the services he needs to grow and thrive. He has been through too much and I am not about to give up now. I know God has a plan and I'm just not sure what it is right now. I keep praying for answers for a clear path to take. So far things keep getting harder and I know Satan is attacking us. I will continue to stand strong for my family and I know God is right there with me because I know he has plans for Caden. Thank you for your prayers about this subject. It has added so much stress in my life and I just want to be able to get it resolved and know that Caden is getting everything he needs.


Pictures of Caden at 10 months old - November 9

Surgery

On Wednesday, November 4, Caden had hernia surgery at UC Davis. We got to the hospital at 9 am and ended up having to wait quite awhile. We had been told he was 2nd case, but he ended up being 3rd case. It was kind of funny because they put him in an isolation room and had us put on gowns and gloves because he had MRSA. We just had to laugh because we are around him all the time and don't gown up. I understand the nurses need to use gowns and gloves because they are interacting with other patients. But when it's our own child and we're not going over to other kids, seems like it wouldn't really matter. But we did what we were told.

Anyway, Caden was quite the trooper. The anesthesiologist said they didn't need to give him Versed because he was so calm he didn't need it. Then when she took him back, she told us later he just lay on the table and looked around quietly while they were getting everything ready to put him to sleep. And she said when he woke up, he didn't fight or scream, he just opened his eyes and looked around. One of my biggest concerns is the intubation, but that went okay and they were able to extubate easily afterward.

Overall the surgery went well and we were glad we didn't have to stay too long after he was out. We picked up the prescription pain meds and then came home. I was glad to know that we had oxygen and a pulse-ox at home so that we could monitor him and make sure he was doing okay. Just a little added reassurance. He's done well since we've been home. A little more tired than usual, but that's not really surprising since he had the anesthesia yesterday. I'm so proud of him and all he has been through. He is so amazing! He was laughing and playing today almost like nothing happened.

At the Surgery Center

Caden playing with Daddy while we waited

Getting ready to take Caden back

Handing him over to the anesthesiologist :(

Post-op nurse, Dannika

I'm happy to be holding my baby again after he got out of surgery!

Caden is sacked out from the anesthesia

Heading out the door to go home!!!

Halloween Celebrations

This Halloween, I let Kyler choose his costume for the first time. His first year, he wore a giraffe costume, the next year, he was a monkey and last year he was a tiger. All the outfits were chosen by me. So this year I decided to let him be involved. He went with me to the store and looked at all the options. The second he saw the Thomas the Train costume it was all over. His choice was made and he would not be convinced otherwise! I had hoped to steer him in another direction, but he would have none of that. And, since I had decided to let him choose, I let him get it. And, I must say, he was a pretty darn cute Thomas! :)

Caden on the other hand, had even less say that Kyler did over the last three years. I didn't even get anything new for him, he just got to wear Kyler's giraffe costume. But, he truly was the most adorable giraffe you ever did see! The only challenge was gettting the two boys to take a picture together. Not an easy task!

For our Halloween festivities, Kyler wore his costume first to the Hearts of Hope day at the zoo, which you've already seen pictures of. Then, he got to wear it again to preschool on Thursday. He thought that was great fun! And, his little friend, Tommy, was Thomas the Train also. Kyler couldn't stop talking about that. So adorable!

Then, on Friday we went to a friend's house for a little party with a couple other kids. She went all out and did such a great job with decorations and food. Kyler had a blast. Although he didn't want to wear his costume while we were there, I got him to put it on for a few minutes. And, finally on Saturday night, Halloween itself, we went to our church. They put on an international food fair, had trunk-or-treat and a talent show. It was a lot of fun. When we got home, we took Kyler over to one of our neighbor's houses because they adore him and wanted to see him in his costume. They opened up a whole new bag of candy and let him help himself to as much as he could fit in his little bag. Of course they don't have to deal with the sugar consequences after-the-fact! But we're glad they love him so much. :)

Overall we had a good Halloween this year. Kyler wants to continue wearing his costume so I told him he can put it on whenever he wants to. Why not? We paid enough money for it!

The cutest little giraffe you ever did see!

Decorating (and eating) Halloween cookies with friends

L-R: Caden, Kyler, Ben, Carly, Grayson & Jonathan

One of the better pics of the boys together

Daddy with the boys

Mommy with the boys-don't you love Kyler's cheesy face?

GI - 2nd Opinion

On Wednesday, October 28, we headed to Walnut Creek to get a 2nd opinion from a gastroenterologist there on Caden's feeding and wretching issues as well as the possibility of changing him to a j-tube. Our GI doctor in Sacramento had suggested doing this as a possibility of reducing his wretching. That was at the end of August, but we wanted to get a second opinion before moving forward and it took us this long to get in with another doctor. We were referred to this one by our cardiologist.

However, by the time of the appointment, Caden's wretching had gotten significantly better. It seemed like once he was able to sit up by himself (right around the beginning of October), that the wretching really seemed to decrease. He went from having up to 20 episodes in a day down to maybe five. It was great. However, we still wanted to talk to another doctor and see what her thoughts were on the j-tube as well as Caden's overall GI issues.

She was great and spent an hour with us going over everything that Caden has going on. It was really nice to have someone take the time to do that. She felt that with the reduction of wretching, changing him to a j-tube would be unnecessary and a guessing game anyway. However she was surprised that Stanford didn't do a gastric emptying scan prior to doing the Nissen along with the g-tube. She highly recommended we get that done now. She said that could be part of the reason for all the wretching if his stomach has a slow time emptying. From what Greg and I could remember, it seemed like there were a couple tests Stanford has chosen not to do because they figured it wouldn't change their decision to do the Nissen, so why waste time and resources on them. But looking back, maybe we should have insisted they do one. Of course, hind sight is 20/20, right?

We are going to tweak his feedings a little bit based on her recommendations. So, at this time, we are not going to do a j-tube and we are going to contact our local GI doctor to order a gastric emptying scan so we can see what that shows. Of course, wouldn't you know that right after we saw the doctor on the 28th, Caden's wretching got worse again.

She suggested another option if the wretching didn't get any better, was to do an endoscopy and use a tool to dilate open the Nissen wrap. Basically stretch it out instead of going in surgically and undoing it. Apparently the surgical undoing is VERY rare and nobody is anxious to do that. So if it was necessary to do something, that could be an option but it doesn't sound very comfortable.

Anyway, we were glad to talk with another doctor to get another perspective. We just wish we could hurry up and get Caden eating by mouth so we could get rid of the g-tube altogether. Of course, he would still have the Nissen so he could still be wretching. Such is life, I guess. We'll keep you posted on any major changes in this area. Thanks for your continued prayers!

Out of curiousity, we were wondering if anyone was praying specifically for his wretching during the month of October since it was so much less during that time. If you were praying for that specific thing in that time period, can you post a comment to tell us? We would love to know if that was a factor. We certainly believe in the power of prayer!

OT Evaluation

On Tuesday, October 27, Caden had an Occupational Therapy evaluation. I knew that his fine motor skills were delayed but I didn't know how much. And, he has some sensory issues that I wanted to have addressed. I am hoping that he will qualify to receive therapy through Alta CA Regional Center, along with his PT and feeding therapy, etc.

We had the evaluation at Bright Start Therapies, which is the same place that he currently receives PT. And, it is also where Kyler received speech therapy. I am hoping that Caden will also be able to do speech there as well.

The therapist was great and spent a lot of time with Caden evaluating many different things with him. In the end, she said he is definitely delayed and unofficially is around a 6-month-old development. She needed to add everything up and complete the report in order to know for sure. She was optimistic that he would receive services but we will have to wait to find out.

We have our official IFSP (individualized family service plan) with Alta on November 10. At that time, we will discuss the results of all the reports as well as how to proceed with Caden in terms of what he qualifies for and where he will receive therapies. I am really happy because our nurse case manager will also be attending. She is the one who really helped us get the exemption for not having PT get billed through insurance. She is such an advocate and is so much more familiar with what is available so I am thrilled that she can be there to back me up on things.

Also, on November 2, a team of people get together at Alta to discuss whether or not Caden will qualify to change from a “Level 1” to a “Level 2”. I am praying that he will get changed because this will qualify him to receive nursing or respite care. This will be a life-saver for us this winter as it will help us keep Caden at home and isolated, away from all the germs. I would appreciate all your prayers on this subject because we really need this for him in order to keep him safe and healthy!

Hearts of Hope Day at the Zoo

On Sunday, October 25, our support group, Hearts of Hope, had a Halloween get-together at the Sacramento Zoo. There were quite a few families that came together with their heart children and their siblings to enjoy the GORGEOUS weather! I took Kyler with me and Greg stayed home with Caden. We are starting to isolate Caden more and more so didn't want to expose him to anything there. So, I took Kyler, AKA Thomas the Train, and we had a great time.

After touring the zoo and seeing all the animals, all the heart families met at the little park in the zoo grounds to have cupcakes. We took pictures of the children who had heart surgeries. There were 8 of them in the picture and between them they had 24 surgeries! It's amazing! These little heart warriors are so incredible. You would hardly know they had been through anything the way they run around and play. What a testimony! I am so happy to have my boys be part of this wonderful group.

Kyler HAD to be Thomas the Train this year!


8 kids and 24 surgeries between them! Talk about being warriors!

Hospitalization and Discharge

Well, Friday (October 16) was Daddy’s turn at the hospital. When I arrived Carey was pretty sore from the hospital chair and Caden was up and moving around. Carey headed out to the airport to pick up her sisters and Caden and I settled in. He played for a short time and then calmed down and surprisingly went to sleep. This allowed dad to start catching up on some work.

Carey returned about an hour an a half later with her sisters so they could see Caden. He had just been woken up so he could get his breathing treatment.

The rest of the day we got to play nurse basket upset. Caden ended up getting a new nurse every four hours, which meant I had to orientate them to Caden’s needs. Of course they all have their own preferences about how much the parents can help. It is really a little awkward since we have been providing all his care for the past six months and then we get told not to touch things. Of course I have to laugh when that is followed up with asking what needs to be done. Anyway, I ended up commenting on the constant change of nurses and I was told that due to flu season the hospital has implemented a policy that requires workers to stay home for seven days once they get sick even if they are feeling better. Hence nurses having to float around to cover. As flu season continues this may present an access problem, because this will exacerbate the healthcare worker shortage problem.

Around 5 p.m. I finally got to speak with the doctor. I asked him if we would be in the hospital all weekend, which is what I expected, but he said that as long as Caden had a good night and met certain metrics he could be released Saturday. I thought this was great news.

After an uncomfortable night in the hospital I got up and went out to the nurses’ station and to my surprise the doctor was there. Since Caden had a good night I asked him when he was planning to round so he could assess him and hopefully get discharged. He indicated he would see us in a couple minutes. That was about 7:45 a.m. When the nurse came in to give him his steroid medicine I asked her to wait until I had a chance to speak with the doctor. The steroid really winds him up and I wanted to find out more about it before he had another dose. The day wore on and no doctor. I finally asked the nurse when the doctor was coming in and she told me that a different doctor was now taking care of Caden and she would be in shortly. Changing doctors is rarely a good thing because it always takes each one a while to figure Caden out and get comfortable with him.

The doctor showed up just before 1 p.m. and I started off talking to her about discharge. She said she would not be comfortable discharging Caden until after he had been off oxygen for 24 hours and was doing well. I challenged her on this since the other doctor had indicated we could go home as long as Caden had a good night. At this point I really felt like Caden was doing better and keeping him in the hospital did not make sense because of the extra germ exposure and the lack of sleep. I believed the next step in the healing process for him was to get some good sleep, which he was not getting in the hospital. Of course the doctor was worried about possible re-admission. I understand this concern, however at this point we had a treatment plan, Caden was doing well, and the treatments he was getting in the hospital we were already set up for and doing at home. After laying the whole case out to the doctor I got her to agree to discharge us at 9 p.m. as long as he continued to do well.

Shortly after the doctor left Caden went to sleep. While this was a good thing, it was poor timing because my mom, who was in the bay area for her 60th birthday came over to visit with her four sisters, Kyler, and Natalie. We all enjoyed watching Caden as he slept, but it was not too long before his little cat nap was over and he woke up to a room full of guests. Of course since most of these people had never met Caden before it was picture time. With hands washed and cameras ready we began snapping photos. After about an hour and a half the fun was over and it was time for them to head back to the bay to get ready for their birthday dinner celebration. Originally Caden and I were planning to be there, but his little episode prevented that.

The rest of the afternoon was pretty quiet and by about 4 p.m. Caden and I were exhausted. He fell asleep and I pulled out the chair bed and was right behind him. We both slept for about 2 hours. I woke up occasionally with various noises and would always look up to check Caden’s oxygen saturation and vitals. Normally the oxygen saturation will drop off with sleep and so this was going to be a critical test for the doctor in determining whether we would get discharged. His saturation always looked good when I check and later when I talked to the nurse about it she indicated that they never dropped once the whole time we were asleep. She said he looked great and we were ready to go home. It was only 6:30 by this point and I was excited. However, my balloon was quickly deflated when I was reminded that the doctor had strict discharge instructions that said we could not leave prior to 9 p.m. The doctor came in shortly after that and I thought we might get to go early. No such luck, she stuck to her guns and would not let us out a minute early.

Fortunately the nurse who came on night shift was briefed on our status and she worked to get everything ready prior to 9 p.m. so that as soon as it was time we could walk out the door. I got everything packed up and then I went down to the car to get the stroller so I would only have to make one trip out. Caden seemed excited to get in some real clothes and we headed home right at 9 p.m.

Of course coming home was no real picnic because I now had to assume all the care. I started thawing milk right when we got home and then I drew up a bath for dirty little Caden. He was so happy to get in the water and get clean. He really likes his baths. Once he was all scrubbed down I dried him off, got him dressed, gave him a breathing treatment and put him to bed. He went to sleep almost immediately. I kept working getting things cleaned up and put away and finally got to bed myself around midnight.

I set an alarm for 4:45 a.m. which was his first scheduled breathing treatment. That point came all too quickly, but when I got up and observed him he sounded and looked so good I decided not to disturb him. About 6:30 I got up to check on him again and he sounded ready for a treatment. I got him up, changed his diaper and then started the treatment. He stayed awake for about 60 seconds and then he was out. It took me another 20 minutes finish the treatment and put him back in bed, but he never woke up. I went back to bed and amazingly got another couple hours sleep. I rarely am able to sleep in past 7:30 a.m. Caden continued sleeping until 11 a.m. The poor little trooper was tired. The sleep did him well though as he woke up happy and visibly better. Even though I had to push the doctor I believe coming home was the best thing for Caden. He obviously needed his rest.

So that was the end of our adventure. Caden is back to 100% for him. The doctors want us to keep him home throughout the winter to minimize germ exposure. Starting November we will keep him home except for doctor appointments. We are now set up at home with oxygen, pulse-oximeter, portable suction and breathing treatments so we are hoping to keep him out of the hospital even if he does get a virus.

Quick Update

Greg is trying to write an update for the blog with more details of what happened after I left off on the last entry. But he's been really busy. So, this update is to let you know that Caden was discharged from the hospital on Saturday night (October 17). He has been home since and is doing well. I promise we will post more details later. Thank you for your continued prayers. We are so glad to have him home!

Hospitalization

This is a little overdue since we've been in the hospital for a couple days now but it's been kind of crazy. Let me see if I can recount the series of events that took place prior to us ending up in the PICU at Sutter Memorial Hospital in Sacramento. (Sorry in advance for the VERY long post!)

Greg and I and the kids were on a little vacation in Tahoe this week. We were scheduled to be in a vacation rental from Sunday until Friday morning. We got there in the evening on Sunday and got settled in the four-bedroom chalet. We were keeping a close eye on Caden as we wanted to make sure his respiration rate didn't get too high. He breathed a little bit faster on Sunday evening and through the night. But by Monday morning, he was doing fine and was back to his normal. He had a great day Monday and Monday night and was very comfortable. However Tuesday we noticed he was struggling more and more to breathe. As the day went on I became more concerned about how he was doing. I had forgotten a thermometer so I sent Greg out in the middle of a huge storm to buy one. When I checked his temperature, it was normal. That made me feel better so I thought we could see how he did overnight. He ended up having a pretty hard night which led us to take him to the ER in Truckee on Wednesday morning to have him checked out.

When we arrived at the hospital at Tahoe Forest Hospital the triage nurse took him back right away and put him on the pulse-ox machine. His saturations were in the low 70's. Not good! So they immediately put him on oxygen and his sats came up right instantly. They also took a chest x-ray and felt that there wasn't anything remarkable in his lungs aside from his small right lung. They thought it was more environmental, being at 6000 feet elevation, that was causing his distress. He really was struggling very hard to breathe by then. So we decided to pack up and head down the mountain with the hopes tha when we got back down to lower elevation that he would start to breathe normally again.

When we got back down the hill, I dropped Greg and Kyler off at Greg's work to pick up his car that he left there and I drove Caden straight to his pediatrician's office, not even going home first. When he examined him, he was very concerned because Caden was wheezing, nostrils flaring and retracting in his chest with every breath, he was lethargic and completely drenched in sweat. He wasn't running a fever, so he thought he was just working so hard that his body was working up a sweat. Unfortunately he didn't have a pulse-ox machine so we couldn't check that. However, just by examining him and listening to him, he said we needed to go straight to Sutter Memorial for probable admission. He was hopeful it would only be overnight so they could put Caden on oxygen and help him get balanced out again.

I stopped by the house for a few minutes to get some things together to prepare for a night at the hospital and off we went. Since Greg was already scheduled to be off work this week, he was able to be home with Kyler and he could take him to/from preschool on Thursday.

When I got to the ER, I got Caden to the triage desk and told the nurse there he was in respiratory distress. He was with another patient at the time, but he yelled for another nurse to come out. She took one look at him, got a quick weight on him and put us immediately into a bed. It got a little crazy from there! There were several nurses hovering over him and the doctor trying to take a medical history. Since we hadn't had a chance to do any paperwork, the unit secretary was trying to get insurance info from me as well. Obviously Caden has a bit of a lengthy medical history and I was trying to give that over Caden's screaming. He was so upset about everyone pulling, poking, prodding him and he didn't stop screaming for quite some time. I think his subconscious is remembering his time in the hospital at Stanford and not liking it!

I tried to be the best advocate for Caden that I could be but I was left feeling very frustrated by the staff in the ER. I didn't feel they were actually “listening” to me. They heard my words but didn't give them much weight. They got him on oxygen which of course was good. But then the nurse was telling me they needed to draw some blood for labs and get an IV going. I asked her what labs they were going to do and she said they just needed to do basic blood panels because he was “very sick” in her words. I told her that I wanted the very best person to do it because he is a hard stick and I didn't want him being made a pincushion. She said she could do it. I told her I wasn't trying to offend her, but I really wanted the best person. Again she said she would be able to do it.

At this same time, respiratory therapy (RT) came in and went to give him a breathing treatment. I asked what it was and they said it was Albuterol. I asked them why they weren't using Xopenex because that is what his pulmonlogist had prescribed previously and that is what I thought he should be on instead. The ER doctor said to me that they were essentially the same thing but that Albuterol was cheaper than Xopenex so that is what they were going to use since it didn't make a difference. So RT started the treatment.

And, again at that same time, radiology came to take a chest x-ray (second time that day since he already had one in Truckee) so I had to step out of the room. The doctor came with me and was asking me lots of questions in the hallway. X-ray left and I wanted to get back in to Caden but it took me a few minutes. I heard him screaming even louder so I ran in there and there were two nurses holding him down looking for veins. I asked them how many times he'd been poked and they told me none yet. So the first nurse that told me she could get the line, poked him and was unable to draw any blood off it. She announces that it's somebody else's turn. Again I said, I don't want him poked repeatedly because he is a hard stick. Now the second nurse decides to take a turn. And, shockingly (okay, a little sarcasm here) she is unable to get it as well. At least they were able to use this line for an IV even though they couldn't draw blood off it.

Then they decide to call in IV Therapy. When she arrives she starts talking about how good she is at drawing blood on babies, etc. I told her also that he is a hard stick and that I really wanted her to look before attempting. She said no problem and went to looking. She said he had a great big vein in his arm and she would have no problem getting it. I cautioned her that people have had difficulty drawing off that vein before whether due to scar tissue, valves, who knows. But she was confident. Unfortunately I was correct and she was unable to get anything. So she tries again in his other arm, still with no success. So now he's been poked four times and still no blood drawn. I'm not a happy mommy and believe me, Caden is not a happy baby!

As a “last resort” they decide to call a nurse from special care nursery and see if she can get it since they work with the challenging babies all the time. She came down, said straight off that she wasn't going to try to use a needle and that she was just going to do a heel stick and get the blood that way. She did this successfully and got all the blood they needed. Caden wasn't exactly thrilled with her holding on to his foot and squeezing so much but at least she was successful and the poking stopped! I was just extremely frustrated that it took that long and that they didn't appear to be listening to me in the first place.

So, back to the breathing treatments... I noticed after Caden received the Albuterol, that I had asked him not to have in the first place, he was very jittery. He was trying to reach his hands up to grab a toy and both his hands were shaking really badly. I made a comment about it to the nurse and she said that was normal. Well, he never had any kind of reaction like that on Xopenex which I had asked them to use instead. So again I was really frustrated because they didn't listen to me and what I was telling them. That makes me crazy!

So, Caden finally settles down. He had nasal cannula oxygen, breathing treatments and steroids, has an IV, they got the blood they wanted and have left him alone. He is tired and is trying to sleep but is unable to because of all the noise and commotion in the ER. They have said they are going to admit him but there were no beds anywhere in the hospital so we need to wait. Every time he started to doze off, something else would happen to keep him awake. Poor baby!

The nurse took his temperature again and he had a fever of 101.3. This was new because he didn't have a fever the night before when I took it, he didn't have one at the ER in Truckee, or in our pediatrician's office. But he had one now... Caden managed to fall asleep after that and a couple minutes later the nurse comes back with a syringe full of Tylenol and is ready to squirt it in his mouth. I asked her what she was doing and she said she was just giving him Tylenol to bring the fever down. I told her he does not take ANYTHING by mouth! I can guarantee that if she had squirted that in his mouth, he would have choked, sputtered and spit out almost all of it. A little might have gone down but certainly not enough. I was so frustrated again because I had already told them he didn't take anything by mouth, ONLY through the g-tube. I just wish they would listen. The nurse acted so surprised by this news and she said, “I'm glad you were here to tell me. I'll have to go put that in his chart.” What??? It should have already been in his chart since I had told them already. Oh well!

So, a few minutes after that she said they were ready to move us up to the PICU on the 6th floor so off we go. Caden might have gotten a 10-minute cat nap in.

Now I have to say that getting to the PICU was a welcome change. When the nurses there took over, it was completely different. As they got him settled into his room, they were doing their own medical history and asking me questions. When I told them about his hypoplastic right lung, they were like, “Oh! We asked the nurse from ER about that and she didn't know what was wrong.” Excuse me?! What was she doing then if she didn't even know what Caden's primary medical issues are? Just made me glad to be out of the ER!

The intensivist working in PICU came in to examine Caden and ask me more questions. Upon his assessment, he said he expected us to be here several days. He didn't think that Caden's respiratory issues were due to elevation but that he has a virus or bacterial infection. The nurses took nasal swabs Wednesday night to test for RSV, Adenovirus, Influenza A, Influenza B, and one other kind of Influenza (but not H1N1). Also, the doctor wanted Caden to have another breathing treatment and I told him I didn't want him to have any more Albuterol because he was shaking so badly after receiving it. I explained to him that our pulmonlogist had put him specifically on Xopenex and if we were going to use one, I wanted that one. He agreed and said they would do that. He also added that for “most people” there is no difference between the two. But in some cases, a patient will get jittery. At any rate, at least he listened to me.

By the time the doctor and the nurses had all the information they needed and RT had done another treatment, it was well after midnight. So much for even attempting to get any sleep! RT was ordered to do treatments every two hours (it's been changed to every three hours now) and the nurses were in here nonstop as well. I honestly didn't feel like I got any sleep at all and before I knew it, it was morning.

On Thursday, we had a nurse who was a float from special cary nursery. She was nice enough, but didn't know where anything was. Not really her fault but it kind of made her seem dingy. She came in just after 9 am to “give him his medication.” I asked her what it was and she said it was his antibiotic. I told her I didn't know he was getting an antibiotic and I wanted to know what it was for. She said she didn't know but she thought maybe it was for pnemonia. And she said that wasn't his first dose, that the night nurse had given him one already! News to me. She must have done it during the two minutes I actually slept. I was really frustrated at this point because I want to know PRIOR to them giving him anything. I want to know what he is getting and why. I really don't feel that is unreasonable. I am his mother and I am spending the night with him at the hospital for a reason. I want to be involved in his medical care and treatment. I told her I didn't want Caden to get the antibiotic until I talked to the doctor. So she had him paged. I am not saying that he shouldn't have the medication, but I just want to know and understand why they are giving it to him before they administer it.

The doctor came in awhile later and I was able to talk to him about the antibiotic. He said that because they really didn't know what was going on with Caden, they thought it was very possible he had some form of pnemonia and they wanted to cover their bases. They were waiting on the results from the nasal swabs they had done for the viruses. If those came back and tested positive for any of the viruses, then they would stop the antibiotics. However, if it was negative for the viruses, they would probably leave him on them.

I asked him about the elevation and if that had anything to do with this situation. He really didn't think it was connected at all and that it was just coincidence. He said our pulmonlogist had come in that morning as well to do an assessment and they were on the same page in regards to medications. I had no idea the pulmonlogist had been in. Again, that must have happened in the two minutes I slept because I was very tired and for the time I slept, I slept hard.

One of my friends came and spent several hours with me and brought me food! Thank you so much, Sharon, for taking the time out of your busy schedule to do that! I didn't want to leave Caden alone, but while she was there, I was able to go outside and get some fresh air and sunshine. That really helped my mood. I don't do well on little sleep and lots of stress. But getting outside really helped me feel better.

While I was out there, I saw Dr. Reddy walk out of the hospital and get into a car. Dr. Reddy is the surgeon who did Caden's surgery at Stanford. He comes over on Thursdays to assist in heart surgeries at Sutter Memorial. I called his name and he got out of the car and came to talk to me for a few minutes. He recognized me, but of course, couldn't remember my name. I told him my name and Caden's name and then he remembered. He asked how Caden was doing and I told him he had just gotten admitted to the PICU for respiratory issues. He said it was glad it wasn't the heart. Then he asked if Teimour had seen us yet. I told him not yet. He said he would call Teimour and tell him we were there so he could stop by. Anyway, it was kind of funny bumping into Dr. Reddy like that. The timing couldn't have been planned better since I was only outside for about five minutes before he came out.

Then, I was walking down the hall in the PICU and I saw Dr. Lorry Frankel. He is one of the attending physicians in the CVICU at Stanford and we knew him while we were there as well. So I stopped him and said hello. He also recognized me but couldn't remember my name. I guess that's a good thing. It means we've been gone long enough (7 months) that we're not in his memory anymore. I think that's a good thing. I guess he comes over here periodically to work as a liaison between the hospitals. As I was talking to him, Teimour came by and asked how Caden was doing. He had just finished surgery and had a post-op patient to tend to, so I didn't get a chance to talk to him for very long. But he said he would try to come by later. Anyway, it was kind of bizarre because I almost felt like I was back at Stanford today with seeing three of the docs from there!

The intensivist here had gotten ahold of Dr. Van Gundy and told him that Caden was here and what was going on. Dr. Van Gundy ordered an echo just to check the function of the heart but especially wanting to look at the pulmonary pressures. When the woman from cardiology came to do it, Caden was less than impressed about the situation! He screamed during almost the whole thing! Luckily she was able to get some pressure measurements and readings prior to him screaming, so that was good. Otherwise they wouldn't have gotten what they needed. As soon as she left I picked him up and he calmed right down. I think he's just sick of people bothering him. The tech told me that from what she could tell “unofficially” that his pressures were slightly elevated but nothing too extreme and not as much as might be expected considering the circumstances. So that is good news. I haven't received the official report on that yet.

Shortly after the echo, one of the pastors from my church came to visit. It was really great of him to stop by for awhile and visit. Thank you, Greg. We really appreciate your support and caring! We are part of such a wonderful church and are blessed to have such wonderful support!

Then one of the moms from Hearts of Hope came by to bring me some dinner. Thank you so much, Valerie! You are so thoughtful and I really appreciate it! It was nice to visit with you briefly also.

Last night, Greg's parents got into town and picked Kyler up. They took him with them to Greg's sister's house in the East Bay area for the weekend. That way we can concentrate on Caden and what he needs. Come Monday if Caden is still in the hospital, we might need some childcare for Kyler though. Kyler was happy to say “Hi” to Caden and then he wanted to leave to go to “Manny's” house. That is what he calls Greg's sister. So, Greg's parents didn't stay too long before taking off with Kyler. Thank you for doing that for us, it is nice to know he's in good hands.

During the late morning on Thursday, the RT decided to try to wean Caden's oxygen down from one liter down to ¾ liter. After about half an hour, he started de-saturating. He was in a really deep sleep during that time and the RT thought that contributed to it, but we had to bump it back up. Then, he tried again to move it down later. This time he changed it to ½ liter. While Caden was awake he handled it well, but after awhile he fell asleep. As soon as he got into a deep sleep, he started de-saturating again. So the RT moved it back to one liter. They'll try again today, I'm sure.

It seems like when he is sleeping, he is having trouble oxygenating because last night the nurse ended up moving him up to 1 ¼ liter because before midnight his sats kept dropping in his sleep. Once she made that change he did fine the rest of the night. In addition, he had been having a lot of trouble settling down with breathing treatments and steroids. So I had the nurse give him some Tylenol before bed. That really seemed to make a huge difference. He fell asleep just before 11 last night and actually slept until 8:30. That's the most sleep he's had in a couple days! Yay! That means his body can actually work on healing itself. I managed to sleep about five hours last night amongst everything else going on. But it was more than I got the night before so I'm happy!

Still no results from the virus swabs and no other news besides that. We just wait. Hopefully later today we will get more information. Greg is going to be taking his turn at the hospital with Caden. My sisters are flying in around 10:30 this morning. We had already planned a sister's weekend in Tahoe prior to any of this happening. Since I still have some things up there in the rental I need to go back up at some point. And it will hopefully give me a little break so I am more refreshed when I return to the hospital. I'll try to keep you all posted. In the meantime, please continue to pray for Caden: for his wheezing to lessen, for his lungs to be clear, for him to not have a virus, and for him to be able to be weaned off the oxygen, and for us to be able to go home SOON!

Playing with his mask before they start trying to poke him

RT giving a breathing treatment while the nurse and the gal from IV Therapy try to draw blood

Finally calmed down after all the harassment and now on nasal cannula

Ready to go to sleep in our room in PICU

Sharon Cox visiting

Pastor Greg Webster visiting

Feeling well enough to sit up and play

Sacked out! Moments later I had to wake him up because his sats kept dropping :(

Kyler saying "Hi"

Grandma Mary visiting

Helping the RT give his breathing treatment