Benjamin's update

Benjamin has been home a little over a week now and I am very happy to say that he is doing well. He saw his pediatrician today to follow up and his lungs are sounding very clear. We are so thankful for that. He is still on the 2 medications from the drug withdrawl that he had. We are slowly weaning him from those and he will complete the treatment in a week. So far so good.

I went to get the mail yesterday afternoon and this picture was in the box.




We took it for our church directory on Sept. 23 - less then an hour before I got the call from Benjamin's pediatrician telling us we needed to take him to Riley's ER. It was weird looking at the picture and remembering that day. Benjamin wasn't quite himself. It is obvious to me of that as I look at this picture. We had no idea what we were about to face with him.

It seems like months ago when all of this happened. In fact, I have to actually remind myself that it really did happen. Sometimes I think it was just a very bad dream. Especially now when I see him getting back to himself more and more. Each day more of the old Benjamin reappears and we are so thankful. It will still take some time for his immune system to get back to where it was, so we are still being more cautious with him. I am a bit of a germaphobe. I think that comes from being in health care. But now I have a good excuse to ask people to wash their hands and be healthy before coming for a visit with him:)

We will head back to Riley next month to follow up with his pulmonologist and also with the neurologist to see if they want to repeat the EEG. I hope they don't think it's necessary since he didn't like it too much and it really does a number on his soft hair! :) He'll also have to repeat some lab work to see if they can find an underlying cause to the bad pneumonia that he's had twice now. He has taken a step backwards physically, which was to be expected. He had physical therapy yesterday and did very well.

This experience has caused me to take a step back and focus on what is really important. To take more time in my most important role as wife and mother to my 2 boys and to keep God first. I am enjoying the little things more and hope that I am teaching that to my kids too. David and I are really trying to take more time for our family as much as we can and to really enjoy our kids everyday. This weekend we went to the Shrine of Christ's Passion in St. John, Indiana. It is a half mile walk outside with life size portrayals of the stations of the cross. It was absolutely wonderful and I would highly recommend it. I will try to put a blog up about it sometime soon. We have talked about doing this for sometime now, and the weekend after Benjamin came home was the perfect time for it.

Here are a few pictures we took since Benjamin came home:


Watching daddy working in the yard

My parents came to help with Andrew and we were SO thankful! They were so great helping with anything that we needed, from taking Andrew to preschool, to doing yard and housework, shopping, winterizing our home, etc. We were very thankful that they could be there to help. Andrew loved having "papa" and "nona" T. there to spoil him. :)


My happy guy...:)

Thanks again for reading. I will try to update my blog as I have time. Again, we truly appreciate all of your good thoughts and prayers. Prayer is a very powerful thing and I have seen it work first hand in my life on several occasions. This experience with Benjamin was definitely the hardest thing that I (and David agreed) have ever gone through. (A month ago I wouldn't have believed that anything could top his birth story.) And I know that we couldn't have survived it without your prayers. Please continue to pray for Benjamin's complete healing. He is a strong little boy and we are so very proud of both of our boys.


Rebecca

Benjamin day 11 - We're Home!!!

After 11 long days at Riley, we are so thankful to be home! We can finally close this chapter and being a new happier and healthier one. I still can't believe that we were there as long as we were and all of the things that happened. I remember feeling a similar sigh of relief when we finally brought him home from the NICU after he was there for 19 days. The only difference was he was a newborn then and I wasn't getting too much sleep. I hope that will not be the case now and we can settle back into our routines.

Benjamin was discharged this afternoon and is doing well. He slept the whole way home (over an hour drive) and continues to sleep now, a couple hours later. He is doing well with the weaning schedule of the meds he is on from the withdrawl. We have a follow up appointment next month with the doctor who he saw last at Riley, a follow up with his pediatrician nex week and we also are most likely going to repeat the EEG once more once he is off of the medications since he continued to show slow brain wave activity. That is most likely due to the meds he is on. He is acting more and more like himself today and we are so thankful!

He had a visit from Caitlin, the music therapy intern from Iowa, again today. It was fun to see him interact with her more in the session. The last time he saw her, he was still on the PICU and not able to do a whole lot. I forgot to take pictures while she was there but she did have a guitar that she left in the room that I used with him so I have a few pictures of him exploring that.
He ate like a champ in the hospital once he could have solids again.
getting his "bath" after his EEG yesterday with nurse Hope.
He was SO happy to be off of the monitors and be able to have some floor time.



We are going to really take it easy with him for awhile, esp. as we head into flu season. He is more susceptible to getting pretty sick like this from a common cold since he has had bad pneumonia twice now, so I hope you will all understand if we are more hypersensitive to germs and sick kids then usual. He was on a week of antibiotics, which not only kills bad bacteria but also good bacteria that he needs to fend off germs, so we will be on the down low for at least a little while.

On the drive back home today, I noticed many of the trees were turning to bright fall colors since I last saw them. I love this time of year and look forward to enjoying it at home with my family!

Thank you again SO much for reading, supporting and praying. We feel very blessed to have such a wonderful support system of family and friends. We really appreciate all of you very much!!!

Stay healthy and many blessings to you and your family :)

Rebecca

Benjamin day 10

Today has been a good but very busy day! On rounds this morning, they made a plan to start decreasing one of Benjamin's 2 meds that he is on for the withdrawl. We are going from 6 times a day to 3 and if he tolerates that (which he did today so far) then the plan is to go home tomorrow! We are very hopeful that will be the case. Everyone here at Riley has been great, but it is TIME TO GO! lol. The unit that he is on is nice, but the nurses are busy (ie overworked) and can't give each patient the care that they get in the ICU. So I am pretty much here all of the time taking care of Benjamin. One of the nurses referred to him as a mama's boy. That is pretty true as he cries anytime I am out of sight. I did manage to run over to the Ronald McDonald house today to check out there and grab a bite to eat. I was gone around an hour or so and when I came back, I found Benjamin in his high chair next to a nurse in the hallway who was charting. He didn't see me at first and I had to laugh as he was rubber necking to see anyone and everyone who walked by. He is so social and the nurses really love him here. His cute personality is starting to reappear more and more and it is awesome to see. He is smiling a lot more today and even laughing at times. He is getting stronger and gets annoyed by all of the wires that are on him and that he can't move around much. It will be SO nice when he isn't hooked up to anything anymore!

As I mentioned, today was quite busy. He saw the physical therapist and occupational therapist today. He also had a repeat EEG. We'll hear the results tomorrow. I was expecting it to go as smoothly as the first in the ICU but I didn't account for the fact that he is a lot more awake and alert then he was then. They took him off of the unit for this one, wrapped him in a sheet like a mummy so he wouldn't "help" and they glued a bunch of wires to his head. I saw pretty fast that he wasn't going to just lay there and take it. I sang to him, which helped distract him but he still wasn't a happy boy about it:)

This whole experience has been quite humbling. God definitely has a plan in everything he does. It has forced me to just stop and be with my son and my family. Nothing else was more important, which reminded me that life doesn't always have to be so busy. We have been on the go so much lately and this experience has really made me reevaluate things and take things one day at a time. To really just stop and enjoy life and enjoy my family. Children are such a blessing. Such a true gift from God. This experience reminded me to cherish and enjoy mine everyday and am excited to do that. This has really put that back into perspective.

Thank you again for reading, for your support and continued prayers for Benjamin and our family. We have felt very covered in prayer during this trying time. Please continue to pray for Benjamin's full recovery and for the many families here at Riley going through a lot of tough stuff. I am in awe of the strength of some of the parents here that I have met and heard of their stories.

Enjoy some of the pictures below that I took when David and Andrew visited us yesterday.

Rebecca

As long as there are cars, Andrew is happy anywhere! :)


Here mom, have a carrot. mmmmm! lol





See ya!

Benjamin day 9

First off, Happy Birthday to David today!!! We are going to celebrate together later when he brings Andrew to the hospital. It has been a week since Andrew was here to visit Benjamin and a lot has happened. It will be fun to have the boys together to interact and I think Andrew will really like Benjamin's new unit. There's a toy room right down the hall from his room that I am sure he will make himself right at home in.

So the first night on the new unit went well. He fell asleep around 10:30 and slept until the nurse did her assessment at 6. I was also able to sleep during that time. They came in twice during the night to check him. I was SO happy that they discontinued the labs they had been taking. They told me that they would have to stick him at 4:30am for lab work but then said they didn't have to. When he was in ICU he had a line in his leg artery that they could get blood from easily but that was taken out yesterday. I don't think it would have been any fun for ANYone to have to try to get blood in the middle of the night so we were thankful they changed the order.

He started eating more solids yesterday for dinner. He even had his favorite staple cheerios. So there's no problem with his eating and swallowing. He still has sleepy eyes but the brightness is returning more and more and he's definitely getting stronger. He was even trying to play a little peek-a-boo at breakfast. :)

He doesn't like me to leave his side for a second and is always watching every nurse or doctor very closely as they come to see him. He finally started smiling a bit and even almost a little laugh when I was tickling his foot today. And he said Mama for the first time yesterday since being here. Music to my ears!

Like I said, I can't walk away for even a minute without him crying for me. But sometimes nature calls and when I came out of my minute break in the bathroom, I was so surprised to see that he had pulled to standing! He's getting stronger but they still put in a referral for PT and OT. I assume that will start tomorrow. I am also looking forward to him seeing the music therapy intern again now that he isn't as hooked up and can interact more.

I sat in on rounds this morning and it looks like we'll be here another couple of days or so. They need to wean him down a bit more on his sedation meds that they gave him to counteract the withdrawl symptoms that he had before he's ready. We are very anxious to take him home as you can imagine, but also want to be very certain that we won't end up coming back here so we are fine with him staying as long as the doctors think necessary. His pneumonia came on so suddenly and was so bad, so we will be more hypersensitive to any cold or cough that he has for awhile. I heard from one of his respiratory therapists on the ICU yesterday that the junk they were getting from his lungs was the nastiest stuff she had ever seen! I knew it was bad, but didn't realize it was THAT bad, so we are just fine with him staying here a few more days to make sure he's healthy before coming home again.

They have mass here on Mondays and I went last week. I really felt some peace there, esp. when I saw that the priest's name was Fr. Anthony. Saint Anthony holds a special place in my family. If you aren't familiar, he is the patron saint of miracles and of lost things. Benjamin's middle name is Anthony, after Saint Anthony. I am hopeful to be able to get away for a bit tomorrow to attend again. I remember when I moved to Iowa for grad school, I didn't know anyone and wasn't even sure it was the right place for me. So I started attending mass, which was so comforting since it was the only familiar thing there to me at the time.

I think that does it for updates for now. I will try to post some pictures later of the visit with David and Andrew. Until then, please continue to pray for Benjamin's complete recovery and for him to remain healthy and strong. Thank you again so much for the prayers and good thoughts! Happy Sunday!!

Rebecca

Benjamin day 8

Today has been a busy and a good day so far. Benjamin was moved off of the PICU this afternoon! They wanted to do it yesterday, but his awesome nurse Emily pushed for him to stay another night because of the seizure that he had. We were very grateful that she did that. It gave us peace of mind that he was getting a high level of care for one more night and he did great. His night nurse, Colie, took very good care of him and even left us a sweet note taped to his bed when we arrived this morning after she had left. Many of the nurses here have just been terrific and we really appreciate that so much.

Benjamin is definitely heading in the direction of getting back to his usual self. He cried today for the first time when I walked away from his bed. Before, because of all of the meds, he would just stare but not cry. Now he is expressing his needs more. His body tremors have stopped and the lip smacking and vomiting has too. He is tracking with his eyes well. We haven't seen a smile yet, but as he was being carried off of the PICU he gave a half wave to the main resident doctor that was caring for him. It was pretty cute. He also nursed for the first time today! He didn't seem to have the stamina for it at first so I gave him a little Performance drink for the electrolytes and hydration mixed with his powder baby vitamins. After that he seemed interested in nursing again and he did for quite awhile. I was very proud of him and thankful that I will most likely be done pumping milk for him. That gets old after awhile. :)

When he was finally transferred, we gave him a little solid food mixed with protein powder and he fell asleep. His new room is in the new tower that is very comfortable for him and for us. I plan to spend the night with him in his room and we are looking forward to what the doctors say tomorrow about a discharge plan.

Here are some pictures I took today:

Before leaving the PICU
and in his new room having some solid food with daddy. He is still pretty sleepy
Ta Da! The t-shirt that I made yesterday with the art therapy activites:)

Thank you again so much for your continued prayers and support for Benjamin and for us. It really means so much and we appreciate it probably more then you realize.

Rebecca

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