Benny is home

Benny is at home with his family dong well. Beth just needs to nebulize him twice a day and have him in a more upright position. So, Sahna has her brother back.

Benny Comes Home

Benny and Beth are coming home tomorrow. I believe she has quite a bit of help lined up, but I did not talk to her about it. Mary spoke to her as Ben and Sahna were visiting so the conversation was short. I will be there next week so she can test her current schedule and see if it works and pursue other options if necessary.

Benny Update

Cathy had a very good visit with Beth yesterday. Benny is off the oxygen, and he is enjoying a nice smile without that wicked tape on his cheeks. The results of the milk scan were negative, it did not show any aspirating. However, there is some minimal reflux, but it is no cause for his symptoms. Although Benny is much better and happier, it is still an undiagnosed condition. They would like to see him go home and have Beth manage on the home front, but she is waiting for more information on how she should proceed. He still has the wheezing with the retractions. There is still some discussion on the bronchial scope where they would look for obstruction. Beth also mentioned that the cat scan was very detailed and there was nothing there.
I am flying into New York tomorrow and will be staying with Cathy for the weekend and then to Warwick to help Beth. You all have my cell if anything comes up.

Benny Update

Finally, some good news. Ellen spent the day, and it was a good day for all. Benny is out of ICU, they have reduced his oxygen dependency, decreased his meds, he is smiling again, and seems so much better. The pulmonology team was in to discuss his case, and did say that it still remains a mystery, they just can not get a diagnosis, which they are somewhat embarrassed about. They have sent babies home who eventually just recover. They have determined that he does have a weak esophagus (a preemie thing), which is a cause of the pooling of the milk in the trachea. He then needs to "cough it up" and get it down the right pipe. They have Beth nursing him in a more upright position, and she can listen for the signs of the pooling. Then she is able to help him "cough it up" by keeping him upright and getting it down the esophagus. This will avoid them sucking it out, which can be irritating. They do feel that it is a pulmonary issue and are doing a 24 hour "milk scan" tomorrow. They will give him radioactive isotopes in Beth's breast milk in a bottle and follow the trail of the milk.
Tomorrow, we have Edna there in the AM, and Cathy in the afternoon. Cathy and I will be there Saturday, so Thursday and Friday are open. It no longer seems critical that she has a "chest pounder" there, but I know it would still be helpful. If anyone talks to Beth, perhaps Fred can go over and hang out for a bit. Beth continues to manage the case well, and is on her game.
Hey, when this is all resolved, we can all say we were members of "The Chest Pounders Club". There is reason for optimism...thanks Charlie.

Benny Update

CAR BUTT,that's my problem today. Eliza, Lily, Asa, and I just spent 3 nights in Warwick giving Nana Madeline a much needed rest and had a wonderful time with Sahna (Asa calls her Santa). Eddie, Noah, and Maria joined us and we had a "cousin fest". It was a nice distraction for us all, and we laughed with the kids. Eddie and Eliza put Sahna's new slide up on her new swing set. Sahna is just so cute and funny.
Beth and Benny are both in better spirits today(Tuesday), and Benny did have a nice smile for Beth. My conversation with Beth this morning tells us that his barium xray that they did yesterday did not show anything significant. They hope to do the bronchial scope later this week. They did take out the feeding tube, and he is nursing once again. We are all anxious for the results of the scope, and perhaps Benny will finally get to go home next week.
Mary and Walt had a wonderful visit with Beth yesterday. Beth's old friend Kim from Cohoes has been a wonderful friend and comes in the evening and whenever she can. One of the tasks that I would like to accomplish is a daily partner for Beth to help with Benny's "heart and soul". I will email a spread sheet with the current schedule. Anyone out there who can fill some of the slots is welcome to contact me.
I will post pictures of Sahna and our visit in the next update. To those who received it, Mary sent out a great email...well said!

Benny Update

Just a quick update. Eliza and I and the kids have been here at Beth's all day. Beth is home since last night for a much needed rest. Eliza and Beth are on their way to Benny now, and I will have more info later. He does seem better at the moment, and thye hope to do his barium xray Monday. In the meantime, he is off the cpap because it was not helping him anyway, and he is more comfortable. He slept on Fred last night and Ben was there also. Beth's friend Kim brought her home. And Sahna is just fine and so cute. More later.

Benny Update

As of last night at 9:30, there was basically no change in Benny's condition. Today I am headed down to Warwick with Eliza, Lily, and Asa. It is unclear where we will be staying, but our mission is to help Ben, Madeline, and Fred with Sahna and life at home in Warwick. I do hope to visit Beth and Benny and Eliza would love to see them also. We expect to be there thru Monday or Tuesday.
When I spoke with Eddie yesterday, he had a long conversation with Mercedes's sister Carmen. Carmen is a veteran accomplished nurse and has experience in pediatrics. She wanted to convey the message that infants are very difficult to work with and diagnose. They are so delicate, their organs are so small and sensitive. And they have to proceed with much caution. Once again, a little bit of a comfort knowing that these things do not come easily.
It is difficult keeping up with everything. Ellen wants me to pursue her connection with Dr Finder and I will see what I can do...no promises. And thanks to Lynne who is counting on Charlie to get us thru this.

Benny Update

As we struggle with Benny's condition, our patience and frustration has overwhelmed us all. Today is just as difficult as yesterday. Benny now has a feeding tube direct to the stomach, continues with the CPAP and the retractions. It "sounds like" they are looking at his upper airways and the avioli. They want to keep all that clear. So far, all attempts at numerous meds have been unsuccessful. He has been poked, prodded, and bothered with so much stuff, it is heartbreaking. Beth does say the ICU nurse is like an angel from heaven - maybe it is Charlie! They still hope to do the scope as soon as possible.

Benny Update

Well,Benny is spending today in the ICU having a 12 hour CPAP (an oxygen mask with his meds). Ellen and Lynne visited Beth and Benny today. And little Benny enjoyed story time with Ellen, who entertained him with a book about cats and a stuffed animal. We are hoping that this treatment will get him back on track so they can pursue further testing. We will see what tomorrow brings. So, send a card, visit them, and read to Benny when you see him.

Benny Update

I spoke to Beth this morning. Basically, there is no change in his condition. Today at 3pm they are doing another barium xray. It has been determined that Benny has inflammation of the upper airway. The test today will look to see if he aspirates into his lungs. His ekg was within normal limits. So, it is day by day. Cathy visited yesterday and Ellen and Lynne will visit today.

Benny Update

Before Jay and I left yesterday afternoon, Benny's team of Pulmonologists came in to discuss the results of the Upper GI series and the course of treatment. The Upper GI did not show any abnormalities. Benny's oxygen levels continue to be low without support, his wheezing continues, as does his retractions. They discussed following a course of steroids and a different antibiotic. It is all so frustrating because Benny has been down that course before. They need and want him to improve so they can decide if they want to scope his lungs to look for abnormalities along the way. It is a much safer procedure if Benny is breathing on his own. This particular group of Pulmonologist's said "this is not a preemie thing". However, it was stated that as a preemie, Benny did miss out on the immunities that are passed on from Beth in the last trimester. When he was born, he did not have any issues with his respiratory system so they feel that this is something that has developed in the past few months. They are constantly searching and changing course; different specialist have different opinions. Your head is in a whirl listening to all this.
Jay and I left, and Beth called when we were on the road. The "suck/swallow/breathe" technician/nurse was in. She listened to Benny's lung before and after nursing, and determined that there was some pooling (of breast milk) in his lungs. This could be the result of his rapid breathing or not, and they will observe again today. Then the Metabolic Doctors came in and they will do their workup which includes blood work and a recommendation to possibly revisit Cardiology.
I have not spoken to Beth this morning, so this could all change. As I was traveling home to Vermont, some other thoughts came to me. I called Beth and told her that with all the focus on Benny's care and health, we forgot that he is a 5 month old and perhaps we can treat him as such - read him some stories, play with rattles and other appropriate toys. Somehow, we got sidetracked with all the talk and medical stuff. So, my suggestions for those who will visit: some new board books, bright and cherry toys, fresh flowers for Beth, and perhaps a pot of meatballs for Ben to bring home.
I continue to be saddened and overwhelmed by this.
Once again, please do not take my writings as gospel, and I am doing my best to be a conduit of information. I am sure you all have your opinions and I certainly welcome any comments or suggestions.

Benny Update

Benny Update -

Good Morning ,

So, here we are at the Maria Fereri Children’s Hospital at Westchester Medical Center in Vahalla, NY. This is day 2 and it is comforting to be here. First of all, the facility is quite amazing. It is a free standing state of the art building dedicated to pediatric specialties, built exclusive for children. Everyone who works here has chosen a career that is devoted to clinical care for children. And it is family centered which truly does recognize Beth’s relationship as a partner with the Doctors and Nurses in caring for Benny and finding answers thru testing and research. They welcome all family members and provide services for siblings of the patient – Sahna has a ball when she comes here. They strive to make the situation for Benny as stress free as possible and will do whatever they can to make the situation more comfortable for him. Benny is in an area called “heroes” which is devoted to children with respiratory issues.

OK, what’s happening with Benny? First of all, the reason he is here to begin with is because he continues to struggle with his breathing and his oxygen levels; mucousy stuff in his lungs and his cough. And they were at a crisis point on Saturday night. The signs are manifested by his obvious “retractions” in his chest when he breathes. The retractions are his muscles behind his rib cage working harder to push air in and out of his lungs. What they are looking for is the reason for the retractions. In the meantime, it needs to be managed and when Benny has more difficulty because of the buildup of “stuff” in his lungs, he needs help. He needs more oxygen, and sometimes more fluids. It obviously takes more energy to breathe which requires more calories. He is a good nurser and has a happy personality. He smiles for everyone and likes the attention. Of course, he rather not have the oxygen in his nose, or the iv in his foot.

Today, he is having an upper GI series which is non-invasive. They have him swallow some sweet stuff and then do a series of x-rays. Beth is with him for the procedure. Hopefully, they will have the results later and it will show if there is any leakage to places which it shouldn’t be, such as his lungs. It also looks at acid reflux. And the next consult is with the Pediatric Metabolic Specialist looking at blood gases and other metabolism issues.

So, as not to minimize the severity of the situation, the possibility exists that Benny will just need help from time to time with managing his chronic bronchial issues, and will move on in time from the situation. He may be prone to bronchial problems as he grows up. They need to first eliminate all possibilities of a more serious diagnosis before he is discharged, so I am assuming he will be here for quite a few days.

Beth is totally focused on his care and I am proud of her. I know she will do whatever it takes, and ask a million questions, many of which do have not answers. Once again, everyone here is a Pediatric Specialist and it would be pointless to even have an x-ray done by someone who is not familiar with reading an xray of a 5 month old.
Ben’s parents have been the main support system. Beth is fortunate to have them. And I just want to mention that Beth is insanely busy managing Benny’s care and it is hard for here to even take a phone call.

Love,

Jeanne

Benny Update

I spoke to Beth about an hour ago. Benny is on oxygen and has an IV, which I think is for his daily dose of steroids; and he has a nebulizer. They have ruled out anything environmental and are looking at anatomical and metabolic. They are waiting for the appointment for the cat scan which she hopes will be soon. In the meantime, it appears that he does have some fluid and "crackles" in his lungs. Beth is holding him almost constantly, and puts him down when he is sleeping. As far as the accuracy of my information, I believe I am telling it as Beth tells me. If I have misinterpreted anything, we will confirm later. Beth seems calm and hopeful. Ben, Sahna and Madeline are scheduled to visit today. It is a 6 hour drive for me to visit them but I am thinking about it as I do believe they could be there awhile. Hey, where is HOUSE ( Dr. House ) when you need him. And this is such a worry for me - must be the Grandma thing, because I am truly worried.

Benny Update

So, I just got off the phone with Beth. Benny is stable, breathing still troublesome, no fever, oxygen levels ok, and they did an xray. They are going to do a cat scan perhaps Monday or Tuesday.

Benny Update

I just got off the phone with Beth. She is on her way to Westchester with the baby. They diagnosed him with Pulmonary Bronchial Dysplasia (sp?) due to immature lungs. So, it is my assumption that he just was not able to fight off the bronchial condition because of his preemie status with hi lungs. As soon as I know more, I will post agains

Baby Benny

Yesterday we got news from The Glass camp that cute little Benny is still struggling with his "pulmonary" issues. Beth continues to seek treatments and answers. He keeps her busy with all his medical needs, and she is fortunate to have her Mother in law nearby to spend time there. He delights them with his smiles and belly laughs, and is quite the chunky little fella - a joy to hold and cuddle.

When I hear about Benny, I reflect on my experiences with my kids when they were little ones, and remember Mom coming to help when they were newborns. It was just wonderful, especially when Aaron came along. Juggling 2 young ones was chaos at times. And, I believe I almost cried when Mom left.

We await more news from The Glass Camp, and hope Benny recovers soon.

Jeannie

Matthew gets the girl

Well folks, Matt snagged his prize and will be tying the knot this summer. Courtney, his squeeze of a few years consented at the top of Beaver Creek in Colorado...nothing like the mountains on a snowy day to put you in the mood. We await the final details.

Thanksgiving 2008

OK folks...Thanksgiving this year was kind of a wash. Thank goodness, it was saved by FATTY
the largest and most expensive turkey we have ever laid eyes on. As they say on NPR - "this is the story".

Moving to Vermont where we were green, organic and local before it was the trend provided us with some unusual opportunities and interesting new folks. One of them is Jennifer who owns FAT ROOSTER FARM, an organic "meat and potatoes" kind of place. Eliza had purchased her organic vegetables for her "farm" last spring with phenomenal success. So, Jennifer gifted us some wonderful chickens from her free range barnyard and got us hooked. So, when it came time for Thanksgiving, we ordered a turkey, but were not specific about the size and did not ask about the price. OMG...did we get a turkey. This bird cost us $105 bucks and weighed in at 28 pounds. Now I know why Vermonters are poor. But, they sure are healthy.

So, now we have to cook this beast since we certainly can not freeze it. No problem, we will brine it which takes 24 hours, and have an early bird on Tuesday before Thanksgiving. So, let the process begin - the brining turkey.

Time to stuff the beast (finally, enough stuffing for a homeless shelter to enjoy) and fit FATTY in the oven, and this is a bit of a challenge. And she just makes it in.




We do our traditional blanket wrap while we prepare the rest of the meal.


















And finally, we uncork the champage, and eat the largest and most expensive bird on the planet. Was it good? It was simply delicious...as was the gravy and the stuffing. It was comforting to know where FATTY had roamed around the barnyard and enjoyed getting to be 28 pounds. Had I known him personally prior to the feast, I may not feel just right.

So, we will have an after Thanksgiving feast on Saturday. Jay will make bread for hot turkey sandwiches. We will eat pumpkin pie and other goodies. We made soup with the bones, and tried not to let one morsel go to waste.




Now, can someone get us some $3.99 a pound lobsters!

Jeannie