Benjamin day 7

I can't believe it's been a week since we were to see the pediatrician and ended up in Riley's ER! In some ways it seems like a week but in other ways it seems like months ago. So much has happened.

Benjamin continues to do well with his respiration. He is off of all breathing assistance now. He is having withdrawal symptoms from the narcotics that he had been on however. He has a lot of mouth movement, body twitching, vomiting and diahrea, dilated pupils and he is not sleeping. He also had a seizure earlier today. This can be common to people going through drug withdrawl. On rounds this morning they talked about moving him off of the ICU to another unit, but since having the seizure, his nurse Emily said he will most likely stay put for awhile.

On another note, the child life specialist came in today to tell me about an art therapy program that was happening in the atrium. My immediate thought was, "thanks, but no thanks". My friends and former co-workers from Fairview will probably remember how much I disliked doing the art days there with the clients. I just have never been into the painting, cutting pictures, gluing, blah, blah, blah. But soon after she told me I had wandered down to Ronald McDonald for a break and to get something to eat and I saw everything set up. So I thought I would just walk through and look and maybe talk to the art therapist. But what I found myself doing instead was painting a t-shirt for Benjamin! And I enjoyed it! I actually liked it because I felt like I was doing something for him. I was surprised at how therapeutic it actually was for me. I know that probably sounds funny considering what I do for a living as a music therapist. It was strange being on the other end of the therapeutic spectrum today and I really appreciated the opportunity to do that for my little guy and for myself. I wish that he was stronger to come and participate himself but for now, it is exactly what I needed to be doing today. I was pretty bummed when I realized that I left the camera in my room so I wasn't able to take any pictures to show you.

Now that Benjamin is off of the vent and more alert, he has been able to keep his close eye on all of the nurses and staff. His room is across from the nurses station so he is always watching them. He is such a people person. The nurses are constantly telling me how cute he is. I am sure they say that to all of the parents but in Benjamin's case, I am certain that it is sincere! You've seen his pictures so you know what I am talking about. :)

Thank you again for all of your messages, prayers and good thoughts. It brightens my day to read them and I have been sharing them with Benjamin.

Will keep you posted...

Rebecca

Benjamin day 6

Today has been a good day! I spent the night in West Lafayette and a bit of the morning with Andrew. He has been missing his brother a lot. He told his teachers at school about his baby brother in the hospital. Maybe now he will consider sharing at least one car with Benjamin when he comes home. :)


So the big news is as you can see from the picture above - he's off of the ventilator!!! And I was able to hold him soon after for the first time!

He's breathing well on his own with only a little assistance from the nasal cannula. Right away we could see a difference from when they had extubated him early Monday morning. He has been doing well with his breathing. The only concern has been that he wasn't quite acting like himself and wasn't tracking well with his eyes for a period of time. His pupils had been quite dilated so the doctor ordered an EEG of his brain activity.

I just heard the results and there was no seizure activity but did show slowing of brain activity. That could be due to all of the meds he had been on this week but to be sure that everything is ok, he will repeat the EEG in a few days.

Afterwards, he got his hair washed in a bag. Best invention ever! I must try this sometime:)



Right now, he is pretty alert and checking everyone out that comes into his room. He isn't talking yet, but has made a few sounds. That will take some time since he had a tube down his throat for the last several days. He has a lot of air and fluid in his stomach that he is continually getting out of both ends. He is starting to look more and more like our little Benjamin. We sure have missed him.

Thank you again for all of your prayers, messages and good thoughts. They have meant so much to us. This has been a very exhausting and trying time for our family but I know that God only gives us as much as we can handle. We are so thankful that he is improving.

Rebecca

Benjamin update 1

Last night Benjamin was pretty agitated. The nurses are continually surprised about how awake he tends to be at times, even with the sedation. If it were me and I had a tube down my throat and I woke up, I would be pretty mad too. When he sees me, he seems to be pleading with his eyes for me to pick him up. It breaks my heart.

I spent the night at the Ronald McDonald house last night. We have a room at the house a couple blocks from the hospital for as long as we need it, which is really nice. When I got to his room this morning, they were about to start rounds. The doctors said his chest x-ray looked better today, which is great news. They are starting the process of weening him from some of his sedation meds to prep him for weening from the vent so he can breathe on his own. They are thinking sometime tomorrow. I am nervous for this since they took him off on sunday only to re-intubate him an hour later. It is a rough process to watch. I know the doctors don't want me in the room for it because it can be upsetting to parents but I feel that if my little guy has to experience this, then I can hang in the room for support. I often do humming with him while they are doing procedures to help comfort him and let him know I am there. I started a version of You are My Sunshine when he was in the NICU and it has become "our song". I tend to go to that first here too.

I had been starting to ween him from breast feeding before this happened. I am SO happy now that I am still able to give him my milk, since I know it is so good for him. They are supplementing it with Shaklee's protein powder and he will start the multivitamin and multimineral powder tonight. I am trying my best to keep up my milk with what he needs but we may have to supplement with formula for the calories. I am really looking forward to when we can hold him again and I can nurse him. That will be a wonderful day! :)

Thank you again for all of your prayers. We feel very blessed to have such a wonderful support system for our little guy. He has been through so much and I know your prayers are helping. Please keep them coming for healing and strength and for a full recovery very soon. Thank you!!

Rebecca

Benjamin

I thought it would be a good idea to try to keep up a blog with updates on Benjamin. I will keep it up as I can.

You may already know that my 13 month old preemie became very sick last week. He is in the pediatric ICU right now at Riley Children's Hospital. I will tell you a little background as to how he got here and why.

Last week, Benjamin developed a sudden wet cough. I was immediately concerned because of his early birth history. He was born 6 weeks early and had lung disease including pneumonia when he was in the NICU. The doctors there warned us to be extra careful with him in the first year since he is more susceptible to getting sick and for it to turn ugly. Since he was rarely sick, usually never more then a little cold that passed quickly, we thought the cough was unusual and it concerned us. So we made an appointment with his pediatrician on Friday.

After looking at his chest x-ray, the doctor thought that maybe he had aspirated something to his right lung. The left was clear and he did not have a fever or other cold symptoms, common to pneumonia. He sent the x-rays to the specialists at Riley who thought he should be seen there and asked us to come to the ER. We arrived to a very small waiting room with standing room only of sick kiddos. Not a very fun place to be. We waited 4 hours to see a doc, which was really hard on Benjamin since they told us not to feed him or give him anything to drink because he may end up in surgery. Poor guy. He couldn't understand why I wouldn't just nurse him like he wanted. At 11pm we talked to a resident and awhile later saw the head doctor. They repeated the chest x-ray and prepped him for surgery. We were all expecting to find something that he aspirated but there was nothing there! What they did find was mucus and it looked like pneumonia.

When he came back from surgery, he was quite agitated. He started off with a little assistance breathing and ended up being put on a vent to breathe. Part of his right lung collapsed.

After 2 days in the pediatric ICU, he was doing great with his breathing and they decided to take him off the vent. I was there for that. He did not do well at all, which surprised everyone and they had to put him back on it.

They continue to take x-rays to evaluate his progress. Today, they learned that he has an atypical bacterial infection, which is what caused the pneumonia. He can get something like this from a common cold. We also learned that he has acute respiratory distress syndrome (ARDS). His lungs are very sick and he is receiving respiratory therapy and chest percussions every 4 hours to loosen the mucus.

Knowing Benjamin like we do, we know that he is a fighter. He is strong willed and will recover from this. It will just take a lot of time and prayer. They plan to keep him on the vent to breathe for at least a few more days to keep him stable and allow his body to fight the infection.

He received music therapy treatment from an intern from Iowa yesterday. (I did my MT training at Iowa too!) She left me a guitar to use, which was really nice. They also have this very cool program for their ipad where she can record my voice and have it play in his room when I am not there.

We very much appreciate all of your thoughts and prayers and messages that you have sent. They really mean a lot. We have been through this before when he was born and truly never could have foreseen this happening again. It is hard but we are doing our best to balance being here at the hospital and home with our 3 year old Andrew. He is being well taken care of now with my parents though.

I put some recent pictures below that I hadn't posted yet of Benjamin. Some are from Andrew's birthday party on the 18th. I will do an official bday post on that later. I also have a few pictures here in the hospital so he will know just how sick he was and how far he came when he is old enough to understand:)

Please continue to pray for healing and strength for our sweet Benjamin.





Hmmmmmmm. I didn't know he was into the cake that day too! He was caught in the act:)




We went to David's work BBQ at a nearby state park recently. The boys loved playing there.
playing a messy game of peek a boo. :)
I love spaghetti!

I will keep you updated as I can.

Thanks for your prayers and support! If you'd like to send Benjamin a note, you can do that through the Riley hospital website when you go to the family support page.

Rebecca

Cabin Trip and trip to Indy

We took a quick trip to Indy last week for a doctor appointment. Since the appointment was at 8am we decided to spend the night there and went to the Old Spaghetti Factory for dinner. If you call ahead, you can sit in their special trolley car. This was right up my toddler, Andrew's alley! He loved it:) I would definitely recommend!




We also took our 2nd annual cabin trip to Brown County recently. We had a ton of fun there. The weather was beautiful. This year we stayed in the State Park with our friends Ken, Emily, their girls Annabelle and Grace and also Emily's sister Joyce. Here are some of the highlights.

Our home for the weekend.

Here is Emily reading to the kids before bed the first night.
Benjamin and Emily's sister Joyce became good buds on the trip. She is so great with kids. Every mom needs a Joyce in their home. :)
The kids love being on vacation
Brothers!
Benjamin and Grace having fun together

Andrew and Annabelle had a lot of fun on the back deck. They are good friends and share a birthday! Both kids were born on the same day at the same hospital. We met when they were 6 weeks old at a new moms tea through the hospital.


we found a great spot to grill lunch, hang out and play. Andrew had a great time exploring. He carried this big stick around all afternoon:)
Benjamin's favorite type of toy - balls! He says "ball" every time he sees one. So cute!
the kids loved the slide

Joyce and baby Grace having some fun
my husband David and Andrew enjoying the swings
Andrew, Annabelle and David - 3 big kids:)



David & Andrew, Ken & Annabelle - swingin' on a Saturday afternoon:)


That evening we went to a different spot in the park to grill dinner and play. Here are some highlights from that.

learning to fish

Ken and Annabelle fishing
they caught one tiny fish that day. (no exaggeration! lol)
When it started to get dark, we realized two things: 1. we forgot the flashlights. and 2. the mosquitoes were coming out in force. We fixed these two issues by 1. Ken driving back to the cabin to get the flashlights (thanks Ken!) and 2. trying out the all purpose Basic H2 Super Organic Concentrate to see if it took care of the mosquitoes. And it did! It worked very well. When the guys were fishing, David had already sprayed himself with it and wasn't getting bit. Ken was getting bit pretty bad so he asked for some bug spray and I gave him the Basic H2 bottle. He was hesitant but tried it and told me later that he stopped getting bit after he did! It was safe for everyone to use including the kids and pregnant Emily, since it is all natural and made from corn and coconuts and chemical free! A nice alternative to the usual stuff we were used to before.

Back to the pictures....:)


the babies had fun at the cookout!
cuddling up to Joyce. so cute!
holding hands - adorable! (we saw this often on the trip) :)
grillin'



Emily looking great carrying her twin boys:)


Annabelle taking her s'more making very seriously. They were SO good!


our roaring fire for s'mores....mmmmm!


Well that was a lot of pictures again but not as many as I could have posted! lol! I hope you enjoyed them. We really had a lot of fun in Brown County. I didn't even take any pictures after we left the cabin and went into Nashville, IN for lunch and shopping. It rained while we were there that day but we still had a great time. If you haven't been to Nashville and live in the area, you need to go! It is a cute little town with a lot of home made shopping. Thanks again to Ken and Emily and their family for making it a fun weekend and for all of the cooking that they did. We were very spoiled that weekend!

Have a good day and thanks again for reading!

Rebecca