Benjamin - Fast forward to 2017

Hello All,
I'm finally giving a update. It looks like the last three years I've been so busy I did not update this page. Last time I updated we just moved too our new home. Things really have been busy. Ben has been at Coopersville schools since Fall 2014. He is now planning on going to a combination of first grade and special education classes at Coopersville in the fall 2017. His health has been better this year. He has struggled with seizures, but the last year they have been fewer and he is starting to physically get back to where he was. He is starting to be able to use a k-walker again verses his pacer with help of course. His speech has improved and he says some very comical things at times. He is hopefully going to receive a motorized wheelchair that he can drive himself around. He is excited to drive himself and get that independence. He wanted to take the one we tried home that day. Ben's heart is stable and Dr Lacina plans to see him again in the beginning of 2018.

Dan and I are extremely busy. At times are heads are spinning and we feel like we are not keeping up with everything. Allison and Ben are both doing so well, so I guess we must be doing something right.  With Benjamin getting the motorized wheelchair we are starting the process to getting of wheelchair accessible van. We are applying for grants and researching what will be best for us. We have started a Wheels for Ben group on Facebook that we are going to make live soon for people to see our progress and donate too if they feel they want to help.

I could write for pages on this sweet little boy, but for now I have to run. Have a great day!

Determination and strength!

Benjamin has made huge progress since his surgery last July. He has also grown a lot. We just ordered him new orthotics and are going to be ordering a new gait trainer. He is doing botox therapy at Mary Free Bed to help loosen him up and it seems to be helping. He loves to walk in his gait trainer and is really moving around. He has been going to the Ottawa Area Center for school and therapy, which he will continue in summer school. During the summer he will also be doing therapy at Mary Free Bed. Then in September he will be transitioning to Preschool at Coopersville Schools. His heart seems to be doing great. We were able to wean his medications and he will be being checked again by Dr Lacina in July. Things seem to be going good and keeping us busy.

Benjamin has also had a change because we have moved to a new house. We actually closed on our old house on May 30th. At first he kept asking to go home, but now he is really starting to like the place. It is better set up for his needs.

We also are planning a summer trip to Traverse City and are looking forward to some family time. We are also looking forward to Ben's 4th B-day. It is a distant memory what it was like four years ago. We are all thankful for that.

Allison is growing big and is sad Kindergarten is ending on Friday. Although she is excited to spend time with her Grandmas and to go to vacation bible school.

I hope to give you a update soon, but no new is good news. :) Thanks for checking in!

No news is good news!

Happy holidays to everyone. Sorry we have not posted in a long time. Ben has been doing great! We had a cardiologist apt back in November. He was at 96% for oxygen which is wonderful. We have never seen it so high. We weaned him off Duiril and are planning to reduce his Furosemide in Jan. He will go back around March. It was his best cardiologist apt ever. He really loves Dr Lacina and is better behaved due to understanding everything much better. His heart seems to be in check and we couldn't be happier.

Christmas was great. We just stayed home and enjoyed the kids. Ben got a big Semi-truck that says McCarthy Racing on it. Allison got her Elsa Doll and horse stable. They were happy campers.

Ben's school is going great for him at the Ottawa Area Center. He loves it there and is benefiting from it. Although he is so smart he may be moving to Coopersville special education next fall if I can work out all the details.

On Dec 27th Ben went to the spasticity clinic for a evaluation. They discovered his left leg slightly shorter than his right. This may be making things harder for him so we plan to get a insert for him. We may be having Botox therapy to help him move better. Right now his hips look good, but they are concerned that they may come out of the socket if he does he get up on them correctly more. So we are keeping busy with his care.

I am working part-time and really am liking it. I can keep up on Ben's care better and can still get a creative outlet at work. Enjoy the New Year. I hope to be updating better in the future. 

Long awaited update!

Benjamin is doing well. We have been busy bees at the McCarthy household. We got a new driveway and have been working on a tiling project. Ben has been very busy since we got home from surgery. He was going to Mary Free Bed for OT until he started at the Ottawa Area Center on Sept 5th. He seems to be enjoying going there, and it really seems like a wonderful place. We are working on getting a bus accessible stroller for him. We are also taking him to get AFO assessment for his feet on the 20th. We plan to go to the cardiologist in Nov. At his last visit he was 90 on the pulse ox and I hope he continues to do well. Allison has been enjoying kindergarten at Coopersville and is adjusting well. I have been working part-time so that I can manage Ben's care much better. I also feel more balanced between home, work, and doctor apts. Things are going great, thanks for all the thoughts and prayers.

Good News

Benjamin had a cardiologist apt today, and it turned out good. We will go back in Nov, and try to wean some of his meds starting tomorrow. Here is a picture of Ben playing with his new cars.

Good Visit

The visit to the cardiologist went well today. His heart and lungs look good. We are going to try and wean some of his medications, because his heart is doing good. Hopefully he will not be so sick to his stomach, once we wean the meds. Thanks for checking in and have a great day.

Settling Back In

Things are going well. I seem like I am more busy now that I am home. I have so many things to catch up on. Here is picture of Ben giving the camera cheese! The tests seemed to have gone well on Tuesday. Tomorrow we have a cardiologist visit. I am keeping my fingers crossed that he is looking good and recovering well. My only concern is how much nausea Ben has and his eating has not picked up yet. His incision looks great, and I am getting in the grove on the medications. Keep praying.

Home Sweet Home

Discharge

Well today's x-ray looked perfect! They are planning to discharge us today. We are waiting on another prescription. Although there is a risk that his effusion could come back. So on Tuesday we will be at Helen Devos in Grand Rapids having some tests done to make sure everything looks good. Then on Friday we will meet with the cardiologist. Thanks for all your support and prayers. 

Almost 3 weeks

On Monday we will hit the 3 week mark. Things are going good. We've been close to getting discharged all week. Sometimes I wish they would not even tell us tomorrow because we get our hopes up. Dan really is getting antsy. I am doing ok, I just miss home. Ally is her happy self. She really looks forward to the sibling group every day. Our doctor estimated Mon for discharge, but I am not getting my hopes up like before. Ben has been asking to go on walks a lot. We have been talking with another boy named Colton parents. He was here the same time as we were the first time. Colton has HLHS and cerebral palsey. Just trying to hang in there. I may get away from the hospital today with Ally.

Chest x-ray

Everything has looked great to go home until Ben's x-ray this morning. The effusion is still bad enough that we cannot come home. We were starting to pack up and are bummed. Although once again I would rather stay here than need to come back right away. We may be here for a few more days. Thanks for checking in.

Ben is doing well!

Today Ben has been fussy, but doing fine. His effusion is looking better again. They still are talking Fri-Sat for discharge. Although we will need to follow up with Dr Lacina right away to make sure things are on track. We are all doing ok and I am getting nervous about going home, just because he will be on 7 medications. Of which 3 are critical to him staying on track and need to be given in a very timely fashion 3-4 times a day. Today I plan to take Ally to the gym to get some of her energy burnt off. Have a great day.

Effusion improvement

Today Ben's chest x-ray looks better today. The drugs seem to be working for Ben. We will need to continue to monitor this situation. If it stays on the right track we will be heading home on Friday or Saturday. We are completely off oxygen and just doing spot checks. He has lost the ng tube as well. He seems to do worse with it in than without it. Hopefully he will eat good again today so they don't us make us put it back in. 

There is 13 year old boy here with HLHS that is waiting for a new heart. His name is Devon and has been here since Dec when his heart started failing. He has befriended Ben and brought him a stuffed doggie. We have been visiting him. Ally made him some art for his room. He is such a strong and beautiful person. Please keep him in your prayers as well. Devon is from the Rockford area. Thanks and have a good day.

Chest x-ray results

Just got news the chest x-ray was not good to go home. We will not be coming home tomorrow. There is fluid around his right lung called a effusion. We need to try and get it out with drugs. Worse case scenario we will need to put a chest tube back in. Kinda bummed, but glad they caught it before we got into trouble. Ben is starting to eat much much better at least. Hopefully we will lose the ng tube soon. Gotta run.

Staying for today

Benjamin is great, they just feel it would be good to observe him a little longer. He has been off oxygen since 7:30 this morning. The hope is he will not need it again. Yesterday I learned how to place the ng. Dan is going to do it today. I did a CPR refresher today, and Dan will this afternoon. We watched all the discharge videos and he had a chest x-ray. All of his tests have looked good. We just are working on the eating. I think we will be heading home tomorrow. Probably with a ng tube for awhile. They are settling up all his orders for therapy, medications, and the at home plan. Here is a picture of the little man.

Chest tubes coming out

This morning at rounds they decided the chest tubes are coming out at about 11:00am. Then he is going to have a Eco and EKG to check everything over really good. We have been testing room air for longer periods of time and he seems to do ok. We still cannot get him to eat really well. He may need the ng tube at home. So I am going to re-learn all of that. They did say there is a possibility he will get to go home tomorrow. Which is awesome and scary at the same time. I hope he is doing well enough so we do not need to return. He will also be on many more medications that I am going to need to learn the ins and outs of. We will have a ton of apts and things to handle when we get back to GR. Thanks for your thoughts and prayers.

Getting up more

Hello! The x-ray showed that there is just air in the bump above Ben's chest tube. They are just going to watch it and hopefully it absorbs into the body. We have been taking him for stroller rides and he has been sitting up in a chair. Tomorrow we may be able to take his chest tubes out. He is eating a little bit better. He just not eating enough by mouth yet. He still has the ng tube in and is on .75 liters of oxygen. Things are improving. My parents have been here this weekend and our going back today. Ally and I played hide and seek in the court yard yesterday. She was thrilled. Today she will go to the child life group. Have a great weekend. I think we may hear the H word this week. HOME!

Ben is smiling more

Ben is getting up and riding round in a stroller. He is still draining pretty good. His stomach has been upset and he has vomited a few times. The plan is to wean the ng feeds during the day to get him to eat by mouth. He is only on 1 liter of oxygen right now and we plan to wean as we can. Things are improving. They have been watching a bump above his incision. It is pretty raised and feels like there is fluid in it. They are going a x-ray to check it out today. Have a great weekend.

11 Floor

Ben was moved yesterday at about 4pm. The new rooms are wonderful and I slept very well in his room. We are in 53. He did drink some apple juice and eat 5 noodles by mouth yesterday. Most of his calories are through the ng tube. He is still draining from his 2 chest tubes. He is also on regular oxygen. The plan is to wean him of the oxygen to room air. The occupational therapist worked with applesauce. He ate a little of it. His stomach has been upset.He is happiest watching tv or playing with people he knows. Dan went home to get a few things done and is planning on coming back soon. Talk to you later.

More Progress

Hello! Benjamin is doing well. He just got off the high flow and is on the regular oxygen. Last night he had some vomiting and desats. He also vomited this morning. He really just need to poop and was better after he did. They adding prune juice to his diet to help with this. They pulled nj tube and put in ng tube. This goes to his stomach. He sat for 40 min in a chair. Physical therapy came and we worked with him on a floor mat. Occupational therapy came and made him left arm splint to wear at night to help with his hand. She will be back this afternoon to work on starting to eat by mouth. The plan is to get things back to normal. We may move to the floor today when there is room. There is a ton more things to do on the floor to keep the kids entertained. Thanks.