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.

Awake More

Last night Ben did well with the high flow. They want to aggressively wean it today, so we can move to the floor tomorrow. Ben puked last night. They think the meds make him do this. He seems to be much happier and has been watching tv. The real concern is his central line. They are going to pull it today, because it looks pretty bad and they do not want infection. We are going to hold him today and get him up. Thing are looking good. Slow but sure. Yesterday Ally got to see Monsters University again. The cartoonist were here signing there sketches and showing the movie. Benjamin got physically therapy and tomorrow they plan to do occupational therapy. Since he is here we do not want to get behind with his therapy. It will also help gain his strength back after surgery and get back to where he was before surgery. Things are looking good.

C-pap to High Flow

Tonight at 7:00pm Ben got down to the high flow. Hopefully tonight he does well and does not go back to the c-pap.

Sweet Boy and Daddy

Progress!

I got up to the hospital just before rounds. Dan and Ben are still sleeping. Ben is making progress. His heart and chest x-ray looked good. He just has to overcome the lung hypertension. The doctors think that today we will try to wean the c-pap. If he does well with it we will get to move up to the floor tomorrow. One step closer to home. Ben has been asking for juice. Which is a good sign. He also told me that he all done, and he wants to go home. Last night when Ally left for the night he cried. He calmed down when we told him dad with staying with him. We are starting to miss home. There is going to be a ton to catch up on. Our friend Chuck says the pets are great. Other than the cat dislikes him. She had growled at him. This does not surprise me as she is protective. Thanks for checking in, I will post a picture later.

Slow but Sure

This morning things are going fine. Ben pooped last night! Yippee - the pain in his side is not as bad. Today they plan to take out his middle chest tube. He is off the bi-pap and nitric and down to straight c-pap. Hopefully we don't need to go back. They may take out the tube by his lung as well. We are still sucking out thick junk from him. We think he may have had a small cold before surgery. I stayed the night with Ben and got plenty of sleep. I am a heavy sleeper unlike Dan. Melba, Steve, Kate, and Elizabeth visited yesterday. The McCarthy's are back up and Ally stayed with them last night. I think Ben's lungs just need to recover from the cold and change in pressure. Thanks for all the support.

Benjamin's strength

Ben is doing well. This morning he changed rooms back to the PCTU, because they had more room. Last night they put another drainage tube in near the left lung where Ben had the air pockets. He has a little fluid to drain. He has no no's on his arms to prevent him from pulling off his mask which he has done a few times. He has some pain on his right side of his stomach. We think it is because he needs to poop. He is tolerating the food through his nj tube well. I have nothing huge to report. He is not off the bi-pap yet. There is higher pressure in his lungs and his body is trying to adjust. We are hanging tight. Thanks for thinking of us.

Steady but sure

Ben is going good. He has not completely weaned off the bi-pap. Although he is getting pedisure through the nj tube. His lung is not collapsed anymore, we just don't want it to happen again. He wanted Ally yesterday, and she held his hand for a good half hour. We made the right call keeping her with us in Ann Arbor. She is more mature, and is happier with us. She really has not been trouble at all and she is enjoying all the activities at the hospital. Since today is my b-day I may take Ally to the movies to get away for a little while while Dan stays with Ben. I will try to update again when I know more. Thanks for thinking of us.

Hanging tight

Benjamin is so strong. He is still on the bi-pap. He dislikes it on his face. He told us last night that he wanted to go home, which breaks our hearts. The plan for today is to get his lung back in shape, wean the bi-pap, wean the morphine, and put a nj tube in so he possibly can start eating. The nj tube is different than the ng tube. We cannot put food in his stomach, so it will go to his bowels. Last night Dan stayed with Ben. Ally and I took a break at Ronald McDonald together. We did laundry, took showers, and relaxed. I plan to stay tonight with Ben. Have a good one.

Right lung Collapse

Benjamin is having a hard day. He keep desating, then his right lung collapsed. He is being put on the bi-pap to help it and get him breathing right. We are tired. I will post more later.

Awaiting Eco

Last night went much better. Benjamin had a good night and I got some sleep. I was at rounds this morning and they are planning on doing a Eco today. He still is having trouble keeping his sats high enough when they reduce the high flow oxygen. They think he is just needs more time or there may be an issue with his heart. Although the cardiologist thinks the chances are slim. They just want to double check. Dan's parents the leaving today and my parents are coming up. Have a great 4th of July. I am going to take Ally to a party at the hospital.

Doing better

Benjamin is doing much better than this morning. They got the air pocket out from his lung so he can breath better. He has been resting since they want him to have some time to recover. This sats are much better in the 80's. Since surgery he has a couple of things removed. Two IVs in left arm, one IV in right arm, one central line, and the ventilator. They hope he will continue to improve. If not they will do a Eco. He is still getting some more air in the pocket in the lung and we need to figure out why that is happening. Ben feet look very pink, not more blue!

Ally turned five today. She is very happy walking the hospital with a crown on so everyone knows. We had some cake and opened a few gifts. Thanks again for all the thoughts and prayers.

Breathing

Benjamin is doing ok. Dan stayed overnight and he had about the same night as I had. Ben secretions had to be sucked out so he could breath good. This morning when I arrived Ben is in pain. He keeps desating and he has a air pocket around the left lung. They are going to try and get the air out and they plan to help him with pain meds. The plan for today is to stay in the picu and to try to wean the high flow, although we need to get through this lung issue first. His heart look good.

Hanging in there

Ben is doing ok. His chest x-ray looked perfect, although he is still having breathing issues. Today the are very slowing going to wean him off the high flow. He is more aware of who is there. We will make sure someone is always with him. Tomorrow he will be moved to the floor if he does well with the breathing. I am going to take Ally down to the Child Life Butterfly exhibit today. Talk to you soon.

Hard Night

I stayed at the hospital in Ben's room. He is not having a easy night. He is having fluid secretions build up in the lungs after being taken off the ventilator last night. It is very thick and they need to suck it out every hour. That is why I am up at 2:30 in the morning. He is not liking it at all and screams out. Although when they ask him to cough he does, so I know he is the same little boy that try's to please. He is now on the high flow oxygen to help while he gets through this phase. It is just part of the process because this can happen when you were on the lung bypass machine. Keep him in your thoughts.

Ben the Warrior

Hello! Ben is doing pretty good. They even working on getting him off the ventilator tonight. He is a fighter and has a temper even though he is not awake yet. They plan to try to take the vent off when he is more awake. Allison came up to the hospital, but we have not let her see Ben yet. It is a little scary. I will post a picture later. Dan is getting our key to Ronald McDonald House right now. So I am canceling our backup hotel. Thanks for all the support.

Surgery finished

The the surgery Is finished already. Ben got on and off the lung bypass machine just fine. The surgeon has not came up yet, but after she does we may get to see him in two hours. I was getting so upset that I did not have a update, but what I got was wonderful news. The surgeon just came up, and was very pleased. Gotta run, but I post again tonight. Thanks for all the prayers.

Round Three Begins

They took Ben in at about 7:30. He was medicated so he did not mind being separated from us. Dr Ramano had us sign the papers and she said the surgery will take 4-5 hours. We may have a update at 9:00. Thanks for the thoughts and prayers.

Weekend madness

Friday night right before 5pm, we got a phone call that we needed to redo Ben's blood work. They made a exception and we did it in Grand Rapids Saturday. Then after we got that call Dan ran to Meijer and my air conditioning went out on my car. We thought we were going to need to drive the beastly truck in the ramp in Ann Arbor. Dan spend Saturday trying to fix the car. We thought the compressor went out which would have been pricey. Luckily Dan is the man. He figured out a part was missing and could not find it. Finally he found it up in my engine and a bolt was broken. $2 later the air conditioning was fixed. We hope the blood work is good and we are ready to go Monday. We are enjoying some time at my sisters tonight.

Blood Work Down and the Timing

We are back in Grand Rapids after our dash to get Ben's blood work before the surgery. U of M requires it to be at one of there labs. So we drove into Brighton. The drive was uneventful. Ben pointed out every big truck, semi, and any construction equipment we saw. When we got to the lab we got in fast. Although the tricky part was getting his blood. Ben has very mad and angry even before we started the process because he knew it was coming. We had to poke each arm to get enough blood. His arms have never been easy to get a good point of access. The lab would not do his feet like in the hospital. But it was over quickly and he recovered fast as we went out to eat with my sister and friend Kristin. Kristin brought her son Mason the boys enjoyed the trains at Bagger Daves. I got the Pre-opt admission phone call while I was typing this. We need to be at the hospital at 6:30 on Monday July 1st. Ben will start fasting at midnight, so it will be easy because he will be sleeping. Then we will meet with Dr. Hirsch-Ramano and sign the papers for the Fontan. I will post an update as soon as I can compose myself. It is hard saying goodbye even through I am positive our prayers will be answered. Talk to you all soon.

Surgery Date

Today I got the phone call. Ben's Fontan surgery is planned for July 1, 2013.

Waiting for discharge

Chilling watching Cars2

Pressures looked good

Ben cath did not start until 12:00. We just finally met with the doctor at 3:30. He did very good and we will get to see him soon. Although we need to stay here until 8:00 so they can observe him. Dr Armstrong feels that he is ready for the next step. His pressures are appropriate for the Fontan surgery. We plan to schedule it for the end of June or in July.

Talk to you soon and thanks for checking in.

Tests went well

Ben disliked his chest x-ray, but it was pretty fast and painless. Then they sedated him, but we decided it was best not to fully sedate him. We actually would have liked to not give him anything, but his personality makes him need something or we would have not gotten good results. So we gave him a nasal drug that made him chill out rather than being knocked out. His Eco and and EKG looked great. No serious problems. If his cath pressures look good tomorrow, they plan to schedule his Fontan surgery this summer. We will need to fast again tomorrow. The cath will be different than his last one. They will go in at two points. On his groin and under his collarbone. The cath goes right in his heart and there are risks. They may need to put some coils in, if they find there is some vessels that have formed. Wish Ben luck tomorrow and have a good one.

Ann Arbor

We have arrived safely. Ben is playing in the waiting room waiting for a chest x-ray. The new hospital is beautiful.

U of M Called Today

We scheduled the pre-opt appointments for May 22nd and 23rd. Ben will have his chest x-ray, ekg, sedated eco, and cath. Then they plan to schedule his surgery for 3 to 6 weeks after that if things look good for surgery. Things are really moving fast. Thanks for thinking of us.

Hello All,
The last few days have been packed with many things and beautiful weather. Benjamin had a shallow test at Mary Free Bed and he is having some trouble with chewing up his food correctly. He tends of shallow whenever possible because of the weakness of his jaw muscles. This is part of his Cerebral Palsy. We are going to start a six week chewing therapy for him, because we do not want him to choke. He still is having trouble with his left side and we plan to do more therapy with it. Although he is really becoming more active and mobile. Ben is not walking, but he still gets around. He are really noticing him being bluer looking because of him being so active. Also he is growing so long. On Friday we went to Orthoseat at Mary Free Bed and Ben is getting a bus accessible stroller to go to the Ottawa Area Center this summer if his surgery does not get scheduled for then. But we are hoping it gets scheduled for sooner than later due to Ally starting Kindergarten this fall. Things are going good, but we are so busy with Ben's therapy. We may think about Botox therapy in the future as well. We went to Faith's Walk on Saturday to support heart children and the continued research to make there lives longer and better. Pictures are still to come because I am having technical difficulties, but here is a older cute one.

Delayed Post

Hello,
Sorry for my delinquency on this post. My excuses are vast, but I still should be posting more regularly. I will also get some pictures up in the next few days. We went to the Fredrick Meijer Gardens on Saturday. :) We have not had any huge news until today. Ben had his cardiologist appointment. Dr. Lacina feels that it is time to start the process of scheduling Ben's Fontan surgery. It should be this fall 2013. Ben is getting bigger and becoming more active. He is blue looking more than he used to be. It is just getting to be time to start the next step. I am kinda in shock, although I knew it was coming. It is a hard thing to get scheduled. Below is a link showing some videos and explanations of the procedure if you are interested.

http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html

Please keep us in your prayers. I will post again soon with updates on more appointments this week.

Cardio Update

On January 9th Ben had his cardiologist appointment. His oxygen was in 78% which is good for him. He is now a little over 25 lbs., and handled himself the best we ever had at his appointment. Although the ekg always makes him terribly upset. He tried to pull the cords off while he was crying. His lips turned quite blue. :( After that he calmed down and enjoyed the company of Dr Lacina. They played with some toys together. Everything is looking stable on Ben's end. The surgery is estimated to be between the age of 3-4 for Ben and we should come back in April/May to get checked again. Dr Lacina filled me in on the reasoning, and made me feel good that all my concerns were normal. Ben waved goodbye as we left and we are looking forward a few more months of working hard on his motor skills before he get the set back of a surgery. Please keep us in your prayers.