BENJAMIN'S JOURNAL PAGE
December 10, 2005: I can't believe the year is already gone - where did the time go? I have some good news! Benjamin has been granted a wish by the Make-A-Wish foundation and so our whole family will be traveling to Disney World on January 7 - 13th. We are very excited and cannot wait. I will definitely make a page just for that trip when we return so that you can see how much fun we had. Benjamin is having a great month so far. He's been really healthy and happy. Dr. Filiano ordered him a "cough assist" machine last month and if finally came this month. It's to help him take really big, deep breaths because Ben is such a shallow breather. He's hoping that it will help to keep him healthier and out of the hospital. So far we really like it - I think Ben likes it too. Oh, speaking of Dr. Filiano, I spoke with him on the phone yesterday regarding some medicine changes and while we were talking he mentioned that there are two new genes that they are able to test now. He would like to have Ben's tested because so far they have diagnosed two different kids. I'm not getting my hopes up yet....we'll see. Ben will be at Dartmouth this coming Wednesday for some appointments and needed blood work so Dr. Filiano will add his tests to the blood work. Cross your fingers! I'll let you know as soon as I get the results back.
These are pictures of Ben's left and right heels on the first night
after they were taken out of the casts.
November 25, 2005: Happy Thanksgiving everyone. We had a wonderful day yesterday. Lot's of turkey and dessert - yum!!! This has been a pretty hard month for Ben as he is still slowly recovering from his surgery in October. During the first week in November the Denise, Ben's physical therapist discovered some pressure sores on Ben's heels due to his casts. It was a very sad day for me. This whole month I have been working on keeping any pressure off his heals so that they could heal. We had some visiting nurses come in to help with his wound care. I'm happy to say that three weeks later they are doing much better and completely closed. This means that Ben can start wearing his orthotics and begin standing in his stander again. On another note our family had the opportunity to attend a New England Blind/Deaf conference for families down in N. Yarmouth, MA this past weekend. We had a blast and I learned so much. All the kids had tons of fun interacting with all the disabled children, they were so cute!
Ben enjoying physical therapy by Doreen....
October 18, 2005: On October 13th, Ben had his tendon lengthening/muscle release surgery. The surgery itself went really well. Dr. Moen ended up releasing his adductors and hip-flexors and lengthening his hamstrings in two places on each leg along with his heel cords. Ben recovered for four days in the PICU up at Dartmouth Hitchcock Medical Center. When he came out of surgery his legs were casted from the top of his thighs all the way down to his toes - with a bar inbetween his legs. He had a small respiratory issue during his stay which is why he ended up staying a little longer than expected, but Ben was able to recover quickly from it. He will have these casts on for about three weeks and then he'll wear a removable one just a night to keep his hamstrings stretched.
September 30, 2005: Wow, I snuck this update just in time. So much has been going on since I last wrote and I apologize for not being better at it and more frequent. The last day of August we traveled up to Dartmouth to see Ben's orthopedic doctor and to make a long story short, she is scheduling a "tendon lengthening" surgery that will happen October 13th. The reason for this surgery is to enable Ben's legs to straighten out more than they can at this point. It's very sad because PT has become painful for him and I know that being so tight on a daily basis is so uncomfortable. He cries when I change his clothes, put him in his car seat and sometimes when I change his diaper. The everyday positions like standing, sitting, lying, etc. that we take for granted are so hard for Ben because of how tight his muscles are. Why are they like this? Because of his brain. When your brain doesn't work right it can't tell your muscles to do what they need to do and therefore they become tighter and tighter. I'm very sad that Ben is reduced to another surgery but I feel like I'm stuck between a rock and a hard place. Ben has tried botox - which just didn't work for him and he is on the highest baclofen level that can be given to a child his age and so this is the last option. He will be in the PICU for atleast 2 days - depending on how he recovers and will be in full toe to thigh casts for 6-8 weeks. The recovery will be hard and long. Hopefully in the end we will see the results that we are hoping for. Wish us luck and please keep Benjamin in your prayers.
August 24, 2005: It's amazing how fast the months fly by, I'm really trying hard to write in his journal atleast once a month and boy is it hard to keep up. Back to the weight issue, when Ben got really sick in Florida, he ended up losing 5 pounds - that's a lot for a little boy who already is so skinny. The GI doctor saw us while we were in the PICU and increased Ben's caloric intake from 1/3 to about 1/2. When we weighed him just the other day we discovered that he's back to the pre-illness weight. So...his nutritionist has recommended cutting back some just so that he doesn't gain weight too quickly. It's a fine balance I tell ya. The other interesting happening this month is that Ben has lost his other front teeth. Can you believe it? My three year old is toothless up front. Good thing he's so darn cute. He is scheduled to see his dentist at the end of the month so I'll let you know if anything comes about. I think I know what Ben wants for Christmas this year......(hee,hee) That's all for now! See you next month.
Ben getting transferred into the plane and Ben's flight crew
July 31, 2005: I needed to get an update in before the month was gone. We went to Florida this month to visit my mom and dad who are there serving a mission for our church. We spent the first week as a family doing all the fun things like going to Busch Garden's and the zoo and the last week and a half we were going to hang with my parents just visiting because Steve had to be back at work. Well the day Steve flew back Ben decided to get sick. He was up the whole night coughing and feverish. I wasn't worried at that point becuase sometimes he can pull out of it. By the next afternoon though his oxygen sats were in the high 80's and his coughing never stopped. I knew, as long as I was trying to procrastinate it that he was going to have to go in. Finally around 6pm that night I took him to the children's hospital in Tampa called St. Joseph's. We went through the ER and by the time they saw us Ben had a pretty good case of diarrhea - poor boy. It was all over his clothes and blanket. What a mess. He was still feverish as well. While he was there the Doc's had an x-ray done, an IV placed and blood work taken. I was very impressed because the nurse that put in his IV only took one time - I asked if she'd like a job up north. (smile) Anyway, after all the results came back they told me he needed to be admitted. (surprise) His x-rays showed a double pneumonia and high white cell count. They started antibiotics right away. He was admitted onto the Pedi floor and stayed there for about three nights. On the third night when the doctor came to see us Ben had just been weaned off the oxygen and we both decided that he'd probably be released the following day. That day was Saturday and Ben decided he had different plans. He got worse through the night and by the time the doctor came around on Saturday around noon, Ben was up to 60% oxygen. Luckily the doctor covering the floor was an intensivist and he told me that he wanted Ben on a vent because he was working too hard - this would give him a chance to rest and recover. So by 1pm we were in the PICU. It was interesting because even though their PICU was older than Dartmouth's - the layout was very similar. We had a private room and the nurses were very attentive. I definitely missed Dartmouth though. From Saturday to Wednesday Ben was on the vent, in fact they tried to get him off a few times but it didn't work. By Tuesday Dr. Sastri (the intensivist) decided that there was no way that Ben would be ready to fly commercially by the following Saturday (for that was the day of our original departure) and so he told me that he would need to be med-flown back to Dartmouth. I never thought my insurance would ever pay for that. In the end the flight was around $12,000. The flight was Friday and I was able to fly with him. It was actually a pretty cool experience. We flew with two flight nurses and a respiratory therapist along with two pilots and one pilot that was catching a ride back to Virginia. So there was a total of 8 people on this little citation jet. It only took 3 1/2 hours to fly to NH and it was very smooth ride. It was good to be home. (alright, so maybe it wasn't quite home, let's just call it our second home) Ben stayed for three more days and then we were finally able to go home. What was interesting is that they discovered that Ben tested positive for para-pertussis which we think he might have gotten from the plane ride down to Florida because 7 days later he was sick. (the incubation period can be that long) My other three children ended up catching it as well but did not get sick until we were home.
June 24, 2005: This is a great month for Steve and I because today is our 12th wedding anniversary. WOW!!! That's pretty cool. Somedays it seems like just yesterday that we were dating and other days it feels like eternity. (wink, wink) Ben has been doing really well except for his weight issues. On the 15th of June we went to see Dr. Cassella at Dartmouth. He is Ben's endocronologist. He manages Ben's "hypo-thyroidism". After they weighed Ben Dr. Cassella informed me that he had only gained 1 pound since July of 2004. He was 30 pounds at that time and was 31 pounds as of th15th of June. On top of that his length had grown significantly. Ben needs some calorie adjustments because he is getting too thin and if you don't have enough calories then your body starts taking from your muscle mass - which he lacks already. Time to see the nutritionist. Sometimes I think about the days of old before all these "specialists". I know that Ben would not be alive this long if we did not have all these great people. We are indeed grateful - on a daily basis - for all the wonderful medical people involved in Benjamin's life.
Ben loses his first tooth!!! 5/12/05
May 16, 2005: I was beginning to think that I really did not have anything to report on this month until a couple of nights ago. I was visiting with my good friend Cheryl who was holding Ben and she started asking me some questions about Ben's teeth. Now Ben's teeth have not come in the same way that my other children's teeth have. They have been very slow in erupting and even now at age three, he still is waiting for his bottom right molar to erupt. The others have barely popped the surface and haven't seemed to grow any. This is in part due to the fact that he doesn't chew anything with his mouth. The other problem is that his gums are really over-bearing in his mouth. They seem to really be swollen, which is common I guess. Anyway, as I was showing Cheryl some of his teeth, I placed my thumb behind is front teeth to help open his mouth and when I did that out popped his left front tooth. We were very shocked because I wasn't even putting very much pressure on his teeth and when I looked at the tooth that came out I noticed that there were no roots. I confirmed it with a friend of mine who is a dentist and she said that the tooth was ready - we just didn't know it. I really had a hard time with this because Ben is only three and I was not expecting anything like this to happen for awhile. The tooth fairy did come though which made my other children so happy. We will be seeing his pediatric dentist in a couple of days because they are concerned about this and Ben will also be seen for teeth grinding and problems with biting his cheeks. On another note I am happy to report that we spent the whole month of April out of Dartmouth. There were no hospital stays or even Dr. appointments up there. It was a huge milestone for us as this was the first month that has ever happened! YEA!!!
April 11 , 2005: Since I last wrote, Ben has been to the Brain Malformation Clinic in Boston. Dr. Filiano referred him there to see if they could find any new information on Benjamin's condition and to enter him into a national database that would enable future families with children like Benjamin to see what kind of life he led. They took blood from our whole family so that they could do some testing on it as well. All in all it was a great visit and we very much enjoyed meeting Dr. Mustafa and his team. Another point of interest is that my little baby boy is no longer a baby. Benjamin hit a very big milestone on the fourth of this month - his 3rd birthday!!! Happy birthday my little angel boy. We celebrated in a very quiet way this year. The family who provides respite for us, the Billin's, invited us over to celebrate. It was a lot of fun and I will post some pictures when I get them developed. On a sad note, Ben no longer is able to have Debbie Judd or Elizabeth Holland from Early Intervention come and work on him anymore. Once these children turn three they are turned over to the school system. So....in honor of Ben's birthday and all the time spent with these two wonderful ladies, we invited them over for some lunch and cake to thank them and to say a sort of goodbye - although we will stay in touch as much as we can. Thank you Debbie and Elizabeth from the bottoms of our heart. We love you and thank you for loving Benjamin so much.
March 5, 2005: February 23 Ben was admitted to the hospital for testing positive for RSV. I woke up at 2am to Ben coughing, breathing really fast and a fever. I packed my things and took him to the local ER. There they took his blood and found a high white blood cell count, took a chest x-ray and found infiltrates in the lower lobes. DHART came and got him and transported him to the PICU at DHMC. I was told there that the x-ray actually looked pretty good but that his trach culture came back positive for RSV. They started an IV because he was dehydrated from all the coughing and lack of fluids. It only took them 4 tries this time and they finally got it in his left foot. Towards the end of his stay he was started on cipro and tobi nebs because his trach culture also grew pseudomonas, serratia, moraxella and h-flu. He's a bonafide petri dish. We stayed a total of 6 days while Ben was supported with oxygen by c-pap. We came home last Monday and he still continues to struggle. Most days he's still on oxygen and I have kept him on the c-pap at night. The end of winter and beginning of spring are always a hard time for Ben. We are keeping our fingers crossed that this is the end of his illnesses until maybe next year.
February 5, 2005: After much consideration, we have decided not to do the surgery for Ben. Steve and I cannot justify putting him through another major surgery at this time. The good news is that our decision is reversible if we should at anytime decide that Ben really needs it. Because we have decided against the surgery, we are back to the decision of how often should we change Ben's trach that causes him much trauma and pain. Dr. Gosselin suggested every 4 weeks - which is much better than the every two week change that we were doing. We were worried that it would get harder to change the longer we waited but he had his first trach change (February 2) since the revision surgery on January 4th and it went pretty well. He still bled quite a bit and still cried, but Dr. Gosselin pulled it out and put it back in on the first try. Right now Ben is battling chronic conjunctivitis, I think this is the fifth time in two months. The eye drops have not worked at all and so Dr. Stulac (his PCP) thinks it is viral. He was cultured this past Wednesday (Feb. 2) from his trach and it has grown "hemophilus influenza". Benjamin went to his second dentist app. on Jan. 26th, he sees Dr. Bachner in Vermont - a Dartmouth affiliated pediatric dentist. Poor thing came away with a bloody mouth because he scraped a lot of tarter off his teeth - this is often a problem with neurologically impaired children. He also will not open his mouth, he bites down hard when you stick anything in and so Dr. Bachner had to use a bite stick to pry his mouth open. It made me so sad because Ben can't help this reflex and the dentist scraped his gums trying to "pry" it open. Eventually Ben will have to have his two-year molars surgically removed because of potential infection and absess problems with these back molars. Already his mouth is so hard to keep clean as I can't get a tooth brush back there. So far there is no sign of the molars. We'll see him again in six months to re-evaluate his teeth. That's all for now. Stay tuned for his trip down to Boston Children's Hospital where he will visit with a team of doctor's at a "Brain Malformation Clinic". We might possibly get some answers as to why Ben's brain did not grow and if this is genetic. Should be interesting. That appointment is scheduled for March 14th.
January 14, 2005: I decided that I would include this feature on Ben's website so that I can update people on the things that are going on in Ben's life. So much has been happening that it will be hard to sum it up in a few words, but I will try. It's been just over a year since Benjamin has had a cuffed trach. In that year we have been traveling to Dartmouth bi-monthly to have his trach changed. Before his cuffed trach, he had just a regular trach and it was simple enough for us to change at home. The trach changes have been very difficult, very painful and causes Ben to bleed. Having the cuffed trach has enabled Ben to reduce the coughing spasms he used to have without the cuff, so as you can see...we have fixed one problem but have created another. I have watched Ben endure these most painful changes and my heart breaks every time. In fact they are so hard to watch that most of the time I step out of the room because I can't bear to see it. Just recently I had an indepth talk with his ENT doctor, Dr. Gosselin and we determined that Ben would have sedation when changing his trach. I felt much better knowing that atleast he wouldn't feel the change. We did his first sedated change on December 17th and after that procedure Dr. Gosselin told me that it still was pretty difficult to get in. There were a few options that he presented, one being a "trach revision". A revision is when they surgically go in and make the trach hole a little bigger to hopefully help the trach changes become easier. The downside to this is that the body will always try to heal an opening in the skin and so the revision doesn't really last that long. We decided to atleast try it and see if it was worth doing sometime again in the future. Ben went in on the 4th of January to have his trach revision done and also a uvula reduction. (the uvula hangs down in the back of your throat and Ben's was so long that he was always choking on it) The surgery went well, he spent the night in the PICU at Dartmouth just for observation and was supposed to go home the following day. Things did not go as planned because he had some alveoli collapse on the left side of his lungs which increased his oxygen need to 60%. Dr. Filiano who was attending in the PICU ordered him to be on C-pap, a machine that gives positive pressure when Ben exhales and that in turn helps his airways stay open enabling him to oxygenate better. He ended up starting a small pneumonia and so he was put on a couple of antibiotics to help clear things up. While we were in the hospital, Dr. Gosselin brought up another option to the trach changes...it's called a "tracheal diversion". This is where they cut the trachea in half and sew the upper airway closed (a permanent surgery) and take the bottom trachea and divert it to the outside of his neck causing a permanent trach. He would still need a trach, it just wouldn't be painful to change anymore. This is probably hard to understand when I explain it this way, but I'm not sure else how I could explain it. He has actually suggested this surgery a few other times but each time I have immediately said no. This time after talking in depth with him and learning that one of the reasons it's really hard to get a cuffed trach into Benjamin is because his trachea is very floppy. I have felt that Steve and I need to consider this. Of course with every surgery there are always upsides and downsides and this surgery presents both. Some of the good things resulting from the surgery is that Ben will not have to travel to Dartmouth every two weeks to have his trach changed, and there is a chance that he will decrease his chance of illness as his secretions will no longer be able to slip down past his trach and into his lungs. (during his surgery, Dr. Gosselin did a bronchoscopy and informed me that Ben's lungs have chronic bronchitis) One of the major risks with this surgery is that he could die. We will be carefully investigating, praying about and actually meeting with Ben's team of doctor's up at Dartmouth to discuss everyone's opinions before making an actual decision. I have really been struggling with this and feel as though I am all-consumed by this latest trial, I am just hoping that ultimately whatever decision we have made that we will feel good about it in the end - no matter what the result.