Camden's Blog

Summer??

2009-06-19T20:47:00.002-04:00

Does summer in Maine really start this weekend?? It has been raining here for what seems like weeks. I do remember one or two days of sunny 80 degree days in the last three months! Mother nature had better get her act together!!!

I cannot believe that it has been six months since my last update. WOW!! I will try to remember these past months.

We flew to Florida in March to visit Andy's parents, and Camden has 14 days of very watery stools. We contacted Boston who connected us with a pediatric gasteroenterologist in the Tampa St Petersburg area. Camden underwent labs, xrays, and two sets of stool cultures. Everything was completely normal. So we were left with no answers except is may have been a viral infection and Camden took two weeks to return to "normal".

We were in Boston for clinic in April. At that time we had not used Camden's Mik-key button for three months. His weight was steady, but not significant, so the tube stayed in:(. We had hopes that it would come out. We did switch from neocate formula to whole milk, which he did great with!!

On May 5th I got a call from the daycare to say that Camden's G tube had broken off. YIKES!!! So I called Andy and he went over to investigate. The valve had broken completely off, the balloon had deflated, but the inner part of the tube was still at skin level. So Andy took him to the Emergency Department where I met him. They contacted Dr Jaskick's office and spoke with him about the problem. When asked if they should put a new tube in, they were told to leave it out!!! The plan was to take it out in June!! So my little man is without any tubes!! The site did not even leak and is healing very well.

This week we returned to Clinic at Children's Hospital, and were pleasantly surprised that his weight was 22 pounds, 12 ounces (10.35 kilos). They also were happy to see progress on a bit of a growth curve too.

The new plan is to decrease the amount of milk per day, he is now drinking between 30 to 40 ounces of milk a day! This will hopefully increase solid food intake.

Next week Camden starts in the next classroom up at daycare. His buddy Alec is moving up with him! It is more structured, and he is with more mobile kids, rather than with the babies in his current classroom.

That should do it for now! Whew!

Happy Holidays!!!

2008-12-27T11:22:00.006-05:00

Has it been over a month since my last post? Time is flying!! Things have been hectic, hopefully 2009 will be calmer.

Camden has been in constant motion since he started walking. He only stops to eat and nap. He loves to dance too. He has become the dancer in his daycare room. He also has been babbling up a storm too. he tries to mimic words, says about 10 words, and will "go get your bottle" or "go get your ball" on command! He certainly is a little man now!!

We have been digging out from the snow and scrapping off ice. We spent Christmas Eve at my mom's with my brother and his family. Except for the fact that Bob was feeling under the weather, we had a great time. Christmas morning we were all home and Maddie really enjoyed opening presents. Camden enjoyed playing with the boxes and wrapping paper! Of course they both were spoiled! That's what what kids are for!

Camden Walking!

2008-11-21T10:42:00.005-05:00

What a big boy!! He is now trying to keep up with his big sister! camden had a weigh in at Dr Ross's office yesterday. He is 20 3/4 pounds (9.4kg). A small weight gain from a month ago, but now that he walking, he is really burning up those calories!! He really loves his O's and goldfish and even tried coleslaw last night! I think he played with it more that he ate it, but he was fun to watch.

We're walking!!!

2008-11-06T20:22:00.004-05:00

Camden has been a very busy little boy. A few months ago he slowly began crawling, and over the past souple weeks he has able to walk across the room!!! He has the biggest smile on his face when he plops down on the floor! then he claps. He is well on his way to keeping up with Maddie! Now I can really see myself being pulled in two different directions soon!! I will upload pictures soon!!

Halloween 2008

2008-11-03T12:16:00.005-05:00

Parkside had their annual Halloween party for the kids on Thursday. We both were able to go over and help Maddie's class with the party and snacks. Then we tried to have a class photo. It was very hard to get 20 kids to all sit still, look forward, and all smile on cue. It did not happen for us. I guess that's why we are not professional photographers!! Andy then held Camden as the parade of costumes travelled throughout the day care. The kids had great costumes, there were several princesses and super heroes in Maddie's class.

The kids had a blast trick-or-treating on Halloween! We visited several houses around Bangor, and showed off their costumes. We even ran into several people we knew while out around. Maple street was a very busy street! After trick-or-treating, we took the kids over to the hospital to show everyone their costumes. Maddie kept saying "Look at me! I am so preety!!"

The kids were tired and went to bed by 8pm that night!

Camden's Trip to Clinic and NJ

2008-10-14T20:21:00.003-04:00

Thursday, the Brown family packed up the car and headed south to Boston for clinic. Camden's appointment was at 1pm and we left early to have lunch at Hotel Hanson's beforehand. Marjorie and Mark also watched Maddie while we were in clinic. Camden's visit went very well. We saw many of his team and they were all very happy with his progress and how healthy he looks. His weight was 20 1/4 pounds. The docs also gave us the green light to keep introducing foods, and give him back his yogurt! Our new goal is to reduce his night feeds from 10 ounces to 5 and increase his daily oral intake by the 5 ounces. It has not been easy yet. If we can accomplish this goal by our next appointment in Feb. 2009, and he is not needing any boluses or night tube feedings, we can get the G tube removed at that Feb. clinic visit!!! We can then convert from formula to regular, whole milk!! I cannot even imagine NOT mixing formula anymore!! It would be awesome!

Dr Jaskic also invited us to be present during a lecture he is giving to the entire medical student body at Harvard University, but I am not sure if another trip to Boston will fit into our schedules in early November. But what an honor!

Andy and I then took Camden to 10 East to visit and show him off! We then headed back to Hotel Hanson for a great dinner and relaxation.

Friday morning, we again packed up the car and headed 4 more hours south to the Foley-Brown B & B to visit with Andy's sisters. We arrived about 4 pm. The kids napped some in the car and did a great job! We enjoyed another great meal and relaxed some more! Maddie even tried out Wii games! Saturday was a beautiful day in NJ. Clear blue sky and warm, in the low 70's. After breakfast Maddie helped Flo make toys for their birds and did an awesome job with her coordination and selection of beads and toys to hang in the cage.

We all went to a huge farm about 5 miles from the B&B and looked at all the variety of pumpkins. We then went on a hay ride around the farm. We all enjoyed that, even Camden!! After 20 minutes we got off and were allowed one pumpkin each. Maddie then played in a great children's area and hay maze. it was lunch time, so we got hot dogs there on the farm and doughnuts (one free for each of us with the hay ride) and had a picnic! Maddie then tried her hand at pumpkin sling shot! She did really well with some help from Andy and I.

We then returned to the B&B for naps for the kids and Nancy, Flo and I went shopping for a new car seat for Camden, now that he can officially turn around and face front. We found a great one and bought it on the spot.

Sunday we headed back to Hotel Hanson and enjoyed yet another great meal and rested from the 4 hour trip back. Monday we headed home and arrived about 2 pm.

While we were gone, Camden developed a horrible cough and Monday afternoon we were able to get him into the doctor's office, but we were told it was probably just croup and to keep Motrin and warm showers going, which we were already doing. Tuesday the kids returned to daycare and our crazy lives keep moving foreword.

The Big Birthday Party

2008-10-06T16:38:00.005-04:00

The weather cooperated and we had Camden's first birthday party yesterday!! Many friends and family were there and we had a great afternoon. Camden even tried a bite or two of frosting from his cake (don't tell Andy!!) and he really liked it! We all had hamburgers and hot dogs (thanks Steve!) and the kids had lots of room to play, run, and climb on the playground. It was a great success!!

The BBQ was also to thank everyone who has supported us during the past year, Camden and the Brown family would not be were we are now without all your support. It has been humbling to be graced by all the love and support. THANK YOU!!

Thursday is a clinic appointment at Children's Hospital. We will be leaving at dawn Thursday morning to be in town for a 1pm visit. I cannot wait for the staff to see how big he is and how much he has changed since we saw them in May. We then have a reservation at Hotel Hanson for Thursday night, we are looking foreword to seeing them again! Friday through Sunday we will be in NJ at the Brown-Foley B + B! Then we plan to spend Sunday back at Hotel Hanson, before returning home Monday am, to start another hectic week. Whew!!

Rain, Rain Go Away!

2008-09-27T15:14:00.004-04:00

You can't fight mother nature and expect to win, especially when a tropical storm/ hurricane is predicted. So we are postponing Camden's birthday party. We are now planning it for next Sunday, October 5th at 3 pm. It will still be at riverfront park in Old Town. I hope you can all attend!
Camden is now starting to stand on his own! I walked into daycare and he was standing up in the middle of the mat, not holding onto anything! He changes every day! But the thing he really wants to do is eat! He stares at the other kids when they eat Cheerios, and cheese and almost drools. Hopefully, we get the OK to move foreword with feeding Camden more foods when we go to clinic in October.
Camden, Maddie, Andy and Jack went to a UMaine football game last week. They all had a great time!
Camden then had his first ear infection last week and had to be on antibiotics. Boy did they give him the loose stools! he pooped nothing but water for days! We called his pediatrician and asked if we could stop the antibiotics early, which we did.
This past Thursday, the whole family went to an apple orchard in Levant and picked apples and pumpkins! There was a corn maze too, in the shape of a tractor. With our tickets, we also got a free small ice cream. Maddie loved that! Camden even stole a few bites of Andy's before he ate any. OK, I gave him a few bites, and he loved it! We then met Robin and Chuck at Dysart's, one of our favorite restaurants for dinner! We had a great afternoon. Too bad I could not find my camera to get some snapshots:(

Big Birthday Boy!!

2008-09-18T13:10:00.002-04:00

HAPPY FIRST BIRTHDAY CAMDEN!!!

You're Invited!!!

2008-09-16T19:44:00.002-04:00

Camden's FIRST birthday is rapidly approaching and plans have been made to celebrate! Thursday, September 18th is is official birthday, but due to multiple scheduling conflicts, Sunday September 28th is the date. Riverfront Park in Old Town, Maine is the place, and 4pm is the time. We have been so blessed by all the support this past year, it has made such a huge difference! The nurses and doctors at Children's Hospital told us that it made Camden's plan of care and speedy discharge much more effortless since we were able to spend so much time with him. We could not have been able to do so without all the help back home. So we are saying THANK YOU to everyone who helped. Bring you lawn chairs and enjoy a BBQ on the banks of the Penobscot River in Old Town. There is a gazebo, playground for the kids and lots of room to have fun. If anyone has lawn games, bring them!

Labor Day

2008-09-08T18:21:00.002-04:00

Labor Day was spent at my mom's for a lobster bake and family portraits. It has been ten years since the last Fox family photos, and there have been many changes in the family. The biggest changes have been the addition of 6 great grand children for my grandparents!
Since Labor Day, things have been very busy with work, play and daycare. Camden is settling into Parkside very well. We have also set up a feeding schedule. The consistancy has worked well, with eating more, and pooping a little less during the day.

Camden's First Day at Parkside!

2008-08-25T16:19:00.006-04:00

Camden started daycare at Parkside Children's learning Center Monday. This is the same daycare ("school") that his big sister attends. Her classroom is right down the hall from his. Camden seemed to fit right in with the other older infants in his room. His teachers, Miss Sue and Miss Jenny, were right there for his first day and jumped at the chance to learn about his G tube button! We took supplies over last week and in serviced them on how to administer two of his medications, and left them the tools to practice and play with to get comfortable with it. They seemed confident when we dropped him off this morning that they could do this, and we even typed up detailed step by step instructions to keep in the classroom.

Andy and I then went out to Dysart's for breakfast, alone!! It seemed quiet at first, then we started talking about Camden's first birthday party plans and time flew by. A 3 hour nap that afternoon felt really good too!!!!

After we returned home, we talked to the dietitian at short gut clinic, Megan, about Camden's nutritional needs. We started him on more of a feeding schedule, which has worked well. He even took 39 ounces by mouth last weekend up to camp! On average I would say he take about 25 ounces a day now. The consistency of feedings helps to prevent huge blow outs in his diaper, but he still poops watery stool many times a day. We did pray for poop early on!!

He has adjusted to daycare and his teachers say he is doing very well.

We also have a date for our next clinic appointment in Boston. We will be there October 9th. I cannot wait for them to see all the changes and growth!! It is hard for me to believe Camden is already almost one year old!! I bought his birthday invites tonight on my way home and almost started to cry!! I am trying to get the final details of his birthday planned, then I will let everyone know.

Visit to Dr Ross

2008-07-28T14:55:00.002-04:00

Today, Maddie and Camden both had wellness check ups with Dr Ross. Maddie weighs 32.8 pounds (50th %tile), and is 37.25 inches tall (75th %tile). She is doing very well and will not have to see him again for a check up for a year!

Camden is 18 pounds 13 ounces (8.56 kg) which is 10th %tile, but we a re now on the growth curve!! he is 28 inches long or 25th %tile, and on that growth curve also!! Dr Ross feels that he has caught up on his weight and is doing really well!

We discussed eating and how well he is doing with cereals, yogurt etc... and will need to discuss with Boston about formula amounts and if we should be pushing the formula or foods.

So things over all are still progressing well and we will see Dr Ross again in October for his 12 month visit!

Busy Brown Summer!

2008-07-24T20:29:00.003-04:00

This summer is flying by!! It is already late July, it is hard to believe. I know it has been more than a month since my last post, sorry! We are all so busy this summer, time got away from me!
Camden it doing quite well, no hospital or clinic visits this summer, other than well baby check ups with his pediatrician. His weight isn't growing fast, but he is not losing weight either. On these hot and muggy days, we have a tough time getting him to eat his formula. We give him boluses of formula (which seem to go right through him), or large volume at night. He has tasted a variety of foods so far. He has not made icky faces at applesauce, pears, peaches, peas, guacamole (go figure!!), potato, and he even got a hold of a spinach and cheese bread stick the other night and chewed on it and ate some of the filling! He really enjoys drinking water, much more so than his formula!
We have enjoyed spending time with family this summer also. Nana and Grampy have helped with child care conflicts in our schedule, and are getting more comfortable with tube feedings. Grammy is also learning how to care for the MikKey button, give medicines, and tube feedings. Living two hours away, she doesn't feel all that comfortable yet, but she will with more practice.

Happy Father's Day!

2008-06-16T20:16:00.003-04:00

We had a very busy father's day weekend. I was not scheduled to to work from Wednesday to Monday so I was home with the kids the whole time. I am not sure which is more exhausting, working 12 hour shifts or being home with the kids for 6 days!
Saturday Grammy came over to help us plant a new apple tree that she and Bob got for Camden. Then she made dinner for us! She even brought a special birthday cake for Andy and I, chocolate with half peanut butter frosting for him, and half boiled frosting for me. Andy's birthday was last week and mine was over the weekend. After naps I took the kids to my cousin's house to celebrate another cousin's baby shower and they both had a great time. Neither lacked for attention.
Sunday Andy was working so I packed up the car with the kids and the dog and headed to my dad's and camp to see Nana and Grampy. It was a long and tiring day for all of us, but I'm glad we made the trip.
Mimi came over today to help out and I was able to plant 6 more rows in the garden. I hope it turns out well. I love fresh veggies! The kids were even in bed by 7:30 and Maddie was asleep by 8pm! Am I dreaming?!?!?
We have hit a plateau in Camden's weights. He is still 7.5 to 8 kgs. Even with him eating oatmeal cereal, applesauce, and yogurt and meeting the 35 ounces goal each day with 10 to 15 ounces by tube feeding at night. But then I remember that even healthy kids hits these plateaus too, so I will just have to keep an eye on it.

The Story Continues

2008-06-08T21:57:00.002-04:00

Last week we learned that our home health hours would be cut to 16 hours a week. That is a huge change from 56! So Andy and I have be scrutinizing our schedules and trying to use those hours for the best benefit. However, after June 30th, we are all on our own, our hours are gone:(
We may have to look at regular childcare for him, like a normal kid. Pleasing and scary at the same time.
Today Camden ate 22 ounces, not bad, then he ate another 9 ounces trying to go to bed (over and hour). So he only needed 4 more ounces by tube. So we are going to try giving it to him in 4 hours and see how he does without any after that for the rest of the night! I hope he gets some sleep, and myself too!

A Change in Hours

2008-06-02T21:11:00.002-04:00

Friday we recieved word that our insurance company has declined our request to extend home health benefits, since Camden's central line has been removed. In their words... "We don't need them anymore". How wrong they are!! But the home health care company has started the appeal process and are giving us 24 hours a week for right now. This are really tentative though, and I am not sure how long the hours will stay at 24. The home health care company is also started to file a request through Camden's mainecare care insurance for coverage so maybe we can continue through them. I hope so, it has been a HUGE help having them here.
We will have to wait and see.

I weighed Camden tonight after I got home from work, and it was 17.99 pounds! He spent the day with his daddy hanging out, geocashing, and eating 20 ounces of formula and a huge bowl of oatmeal cereal. They both had a really good day!

A Long Two Weeks!

2008-05-28T20:10:00.005-04:00

Sorry I haven't written in over a week, things have been crazy here!!

So, after Camden had his central line removed we spent the day resting at Hotel Hanson's. Saturday we met up with Ellie and her parents at Boston Garden and Common. The girls hit it off great and loved playing on the bronze duck statues in the garden. We then all hopped on a swan boat and went for a little ride in the pond. We even saw a real, live swan. Dinner was at Ellie's house and we all had a great time getting to know each other better.

Sunday, we had the opportunity to share a very happy moment with another short gut kid, Reena, who recently had her Mik-Key button out. There was a party for her at her grandparents house, and we were there to help her celebrate! There were button games, button crafts, and all the food was round! We then headed back to Maine.

The week was a long and tiring one. There was some sort of virus around the house. Camden didn't eat much, and stooled a lot! Maddie and I could not stop sneezing, and Andy was vomiting for two days. Camden then developed conjunctivitis! Needless to say, I am glad that week is over. This week has been much smoother. Every one is feeling better and sleeping more! I wasn't getting used to functioning on three or four hours of sleep each night, and was very emotional and cranky!!

Maddie, Camden, and I went to a birthday party last Saturday where Maddie learned how candlestick bowling! She is pretty good, until the 7 year olds took over the lanes after cake! She still had a good time and really enjoyed the cake!

Camden's steri strip came off last Sunday and Monday night he had his first bath in the baby tub!! He loved it! He was amazed by the water, and loved feeling it flow down over his body. He didn't even mind it on his head or face! Maddie had to be right there of course and help out! So things are getting back to a more normal pace. In fact this morning, Hallie, our black lab came home from our friend's house! She lapped Camden and Maddie! This was the first time Hallie has met Camden.

I think I have caught everyone up. This weekend we have plans to plant the garden. I am working Saturday, so it will be on Sunday. Camden's home health benefits expire on Saturday but I have been assured by the home health agency that they will still be her for us. We may loose some hours if we have to bill through MaineCare but they are still planning to be a part of our lives! Yeah!

Central Line is History

2008-05-16T14:20:00.004-04:00

This morning Andy and I packed Camden up and was at Children's Hospital by 6 am. Camden spent about 45 minutes in pre-op. the OR nurse carried him into the OR by 7:40 and by 8:05 Dr Jaskic came out to tell us the IV in his chest was removed without any complications. He slept off the anesthesia until 9:15 and drank some sugar water. Then we were on our way. We stopped up 10 East first thing this morning and again after the procedure to fill in the nurses. They were amazed at how big he has grown!! He weighed 8kg in pre-op.
We were back to Hotel Hanson's by 10:30 and Camden and I napped for a while. Maddie went with Marjorie and Mark to pick out snails and tadpoles for their pond. She had a great time this morning. This afternoon, she and Andy took the T into the city for some exploring. Camden took another nap after finishing off 5 ounces of formula. So now it is a day of rest and relaxation, for the Browns.

Family Trip to Boston

2008-05-14T20:35:00.002-04:00

Tomorrow, we are packing up the kids and heading to Boston, again. This time it is for something more than just a clinic visit, Camden is having his central line removed Friday morning! It is a mixed bag of emotions. on one hand it is great and exciting that Camden is doing well enough that he no longer needs it, or the risks of having it in. On the other hand, should he need anything in the future as far as bloodwork, or IV fluids should he get sick, it means an IV stick. But it means he he getting closer to being a normal baby.
Maddie is all excited about going to Boston again, and staying at Hotel Hanson is so much fun for her! We are making a weekend of it, and going to a button out party for another short gut girl... Way to go Reena!!
We will keep everyone updated on how he does and how the weekend in general goes when we get back Sunday night.

Road Trip!

2008-05-04T20:22:00.002-04:00

Today was road trip day. Maddie, Camden and I packed up the car and headed to Stockton Springs to see my grandparents. They are snowbirds in Florida in the winter, so this was the first time seeing them since they left in November. They were surprized how chunky Camden is and how tall and grown up Maddie is. (It is true!!). After lunch we headed on the road again, this time to Athens, to see my dad. It was the first time in months he has seen the kids, due to our schedules clashing! He has been trapping in downeast and northern Maine for the last two months, and you all know how crazy our lives are!
It was so nice to catch up with them, and now I am much more confident traveling with them both by myself. Maddie was very well behaved today which helped too. So after last weekend at mom's and today's road trip, I expect I will be traveling to see more family with the two of them soon. Maybe even to Bowerbank??
Another busy week again coming up, and as always, Chuck and Mimi are planning to be huge helping hands with Camden's care!

A little diddy about Chuck and Mimi!

2008-05-01T21:07:00.002-04:00

Let me tell you about the two people that have drastically made our lives better since we were discharged from Children's Hospital back in January. Chuck and Mimi were retiring from the nursing field when we called them to see if they would be interested in becoming Camden's home nurses. They were just getting done at EMMC and were looking for a drastic change. We provided that, and they provided so much more.

Chuck and Mimi have been Camden's home nurses 95% of the time. They are calm, knowledgeable, and so caring! They talk to Camden all day, read books to him, take him for walks, and give him so much love! They are there for him when Andy or I are at work, need a nap or need to run errands. They have become a great part of our family.

They have also made it possible for Andy and I to start a garden, start composting, and get some little things done around the house that desperately needed to get done. They will jump in do dishes, laundry, or pick up toys without anyone asking them.

Camden responds to both of them so well, separation anxiety has not started to happen yet when we leave. They are so flexible with their schedules, even though our schedules are hectic and crazy! They are awesome!

Yet, I feel guilty about not being there for him, and not taking him on those walks. Sounds crazy, I know, but a part of me still feels guilty for getting Maddie into daycare, and that was a wonderful decision for both her and us!

Weekend NOT in Boston!

2008-04-28T17:30:00.002-04:00

Camden and I went to my mom's last Saturday to spend the weekend. Maddie was already there, mom picked her up on Thursday. It was nice to have some time at Grammie's with the kids, although Andy had to work all weekend! We were sad he could not make it. Camden seemed to have a great time checking out all the new stuff at Grammie's, it took him most of the day to stop staring at walls, windows, and lights! Sunday afternoon all three of us packed into the car and headed home, where Andy was waiting for us in the driveway! Maddie sure did miss her daddy!!

Today, Andy picked up Maddie at daycare with Camden and went geocashing in Clifton for a few hours to give me a break. Well, I did have to look over my PALS materials for Wednesday, plant a few seeds to start seedlings, and run to Sam's for more ink, diapers, pull ups and wipes! It started to rain, so they headed home.

Tomorrow we are invited to a Maine Black Bear baseball game with the Third watch Hockey team (you know the ones who chased around the women's hockey team during the broom ball game, and some how won!!). They are presented the check from the broom ball game to us, and we will stay to watch the game, if the weather holds. I heard it is supposed to rain tomorrow, keep you posted!

Weekend at Boston!

2008-04-21T19:22:00.003-04:00

The entire Brown clan headed to Boston Thursday morning, with a really packed car! We arrived at Children's Hospital just in time (or were we 15 minutes late??) for Camden's clinic appointment. We met with the surgeons, NP, dietitian, social worker, and by 5:30 ready to head over to our reservations at Hotel Hanson. A few changes in Camden's medications too. The docs stopped his Protonix, decreased his Reglan to three times a day, and after checking bloodwork, they stopped his Actigal too. The way we handle Camden's tube feedings changed too. Camden had a daily goal of 35 ounces of formula. What ever he does not consume by bedtime, is given via G tube over night. So, if Camden eats all 35 ounces, he does not need to be hooked up to any tube feeding at night! Right now he eats anywhere from 29 to 32 ounces a day. Not bad!! We were still unable to get his central line pulled on this trip, so we will have to wait until May 9th, as long as Camden gets rid of his cough completely!

Hotel Hanson's was great! We were able to visit with Andy's sisters Nancy and Flo, and friends Erica and Josh. We also visited with Nancy and Flo's birds Kiki and Zazoo.Friday, Andy went to Worcester for a surveying convention, thanks to his sister Nancy driving him there. Maddie, Camden and I just hung out at the house and rested, and played. That evening Marjorie, her best friend Rachel, and I went to the theater in Jamaica Plain. We saw Singing in the Rain and it was wonderful!! I rarely get to see live theater, what a treat!

Saturday, Maddie and I met Andy at Lars Anderson Park in the afternoon, (after his conference) and flew kites! The wind was perfect, Maddie and I got a little cold so we only stayed an hour or so. Saturday was also Passover and first Sader was held at Hotel Hanson's. That was a very nice experience. Maddie even found a new friend to play with, a little red haired girl, Shira.

Sunday, Nancy, Flo, Andy, myself, and the kids went to the aquarium! Maddie loved all the kinds of fish, although she got frightened each time the big fish swam really close to her as she sat in the windows looking in the big tank! We watched the seals out front of the doors play and Camden even liked to see EVERYTHING! He was so mesmerized, he ate 8 ounces of food and fell asleep in the baby carrier I was wearing for over an hour! We then ate lunch at Legal Seafood. Nancy and Flo left to visit Flo's mother, and Andy and I walked with the kids down some of the piers and watched to boats, and all the spring flowers that were out and in full bloom!

Today we headed for home, and our good friend MIMI was waiting for us and helped us unpack and tuck Camden for the night. Whew!!

Boston, here we come

2008-04-16T20:33:00.002-04:00

Camden spent one night in the hospital after his bout with influenza, unless you count the long night in the ED, then we spent two nights! We got to his room about 4 in the morning, on the 5th, and we came home on Sunday the 6th, around 1 in the afternoon. He still has a cough which at times is very congested sounding, but no new fevers. We had a quick trip to the ED this week for retractions, no fever, and home that night. We then followed up with Dr Ross the next day and checked out OK. It is so hard to tell if the pains are his gums, or his ears! Poor little man!!

Tomorrow we all head to Boston for a clinic visit. We will be staying at Hotel Hanson, and Andy will try to get to Worcester for a surveying convention/conference over the weekend. I am hoping to get Maddie to the aquarium, and maybe back to the children's museum. She is also excited to return to Children's Hospital to visit with the nurses and Lakiesha. We are also looking forward to some time visiting with family and friends in and around Boston. Nancy and Flo will be coming up for the passover weekend also, and it will be great to visit with them. Who knows, maybe Andy and I can get away for a few hours, or I can get a nap?!! It will be the first trip back to Boston for Maddie since Camden was discharged from Children's!

My plan for Boston is to talk to the clinic about the need for a multivitamin, whether or not we still need his Actigal, and if we can plead for them to pull his central line now, rather than our scheduled date in early May. I am also hoping to start decreasing his feeds at night. But every time I plan on something at clinic, so much more always happens! We shall see what new things will occur this time!!

Nighttime routines are becoming longer and longer! Every night it takes over two hours to get both Camden and Maddie to sleep. They both seem to fight the natural process of falling asleep. Maddie often cries herself to sleep, and Camden often eats himself to sleep. He wakes up frequently for the first hour or so, and his routine has returned to normal (eating and sleeping). His gums are really bother him now and he would rather chew on his hand, blanket or toy, rather than go to sleep.

Camden has also started to eat cereal and baby bananas! He takes a few bites of each then won't eat another bite. Oh well, at least it is a start!! I was hoping the cereal would thicken up his poops, but maybe he needs to eat more than a few bites twice a day! He is drinking his Neocate well too. He slowed way down for a few days after his last hospitalization, but he is back up to 5 to 7 ounces every three hours or so. At night he will take up to 7 or 8 ounces over an hour to get to sleep. This is his nightcap!

Influenza at the Brown's

2008-04-06T16:09:00.003-04:00

Camden was admitted to EMMC Friday night with a horrible cough, hoarsenes, and fever. Saturday we learned his Influenza swab was positive. He came home today, but still has the cough. He has not had a fever since Friday night, thankfully. While we were in the hospital, his G/J tube started leaking (and pouring!) anything that he took by mouth. Our pediatrician talked to the docs in Boston and it was decided to pull that tube and put in a G tube. It can be doen without xray, unlike the G/J tube, and we weren't using the j part of it anyway. It seems to be working well. It will take the better part of this week for Camden to get back up to 100%. This may have been what Maddie had last week, and we have all been coughing this past week too. As far as the source... I may have brought it home to the house, or Maddie could have picked it up at daycare. Who know's??
Maddie spent the weekend with aunt Alice, and had a great time playing with them and cousin Michelle!

Chunky Monkey!!

2008-04-03T20:14:00.003-04:00

Camden hit the 16 pound mark at his weekly appointment with Dr Ross today!!. We also were told that were to return to the office only after his next Boston appointment! That is is two weeks! What will we do with our Thursday mornings now?? He is also really trying to get his first tooth. It feels like a bud on the top, so we shall see. His feeds are going so well. He can take up to 7 ounces or more then a few hours later take another 5 or 6 ounces! Tonight he took 7 ounces then ate another 2 ounces half an hour later trying to get to sleep.
Maddie finally made it back to school today. She has had a fever off and on since last Friday and the rule at daycare is no fever for 24 hours. She came home tuckered out and whinny! She only wanted to eat carrots, yogurt and a banana for supper. She then fought going to bed for almost an hour!

So Many Friends!!

2008-03-30T20:35:00.003-04:00

Camden is just progressing on his feeds by mouth by leaps and bounds!! He is already tolerating 6 to 7 ounces every 3 hours or so during the day! He even is starting to enjoy cereal each morning and in the afternoon as a snack, when he isn't busy getting attention from Nana and Grampy!! They have been a huge help with both kids and I may not let Jack go back to Florida... Camden eats best when Grampy feeds him.

Last Monday night was the broomball benefit for Camden. It was some of the funniest action I have seen on ice ever! The third watch team actually managed to beat the women's hockey team, but I think the boys were the most beat up! We had a great time. THANKS to all the players, sponsers, and everyone who was there! It really is nice to know so many people care about us and this little man!

Today was Camden's baby shower at Christina's in Brewer. It was nice to be able to take Camden to the party so everyone could see and hold him. THANKS to everyone for a great afternoon, and all the fine gifts!

Camden had his appointment with Dr Ross on Thursday and his weight was 15.7 pounds (7.12kg). Things are progressing to the point we may soon no longer need to visit him weekly, although we love Dr Ross! Are we making our way to a more normal life? What was that like?? I don't think I remember what life was like prior to all the doctor visits and hospitals, starting last September!?!

Update from our third trip to Boston

2008-03-23T14:17:00.002-04:00

Camden had his third clinic in Boston last Thursday. Nana and Grampy flew in the day before. There were many changes again for the visit. We got the approval to try Camden OFF TPN and see how his weight does. If he can maintain, or even gain weight, we are planning to pull his central line on our next visit in four weeks! We also moved his tube feedings from J to G, and he is tolerating those very well. His weight is over 15 pounds, and he gained an average of 39 grams a day. Much more than the 17 grams a day goal. The team in Boston were very happy with his progress.

Jack and Sue arrived Wednesday and haven't let either of the kids go yet!! They have been very helpful with things around the house.

More to come.

Waiting for Nana and Grampy!

2008-03-12T19:56:00.002-04:00

In only one week, Nana and Grampy will be flying north from Florida! I'm not sure who is more excited, them or us (but I know how they will answer!). Maddie talked to them on the computer tonight and Camden got to see them too. I am thinking of things for us to do with Maddie while they are here, the list is long!

Camden was very fussy today, we even gave him Tylenol around two. He also ate a lot today, three or more ounces every few hours! He seemed to tolerate the extra volume well too. Growth spurt??

I also think I feel the beginnings of a sharp point on his upper right gum... could it be?! I will have to check it out over the next few days to be sure!

I am making this short, and going to bed early. I worked the past two nights and am worn out!

Teething???

2008-03-07T21:29:00.002-05:00

Could Camden be starting to teethe?!?! I think he may be, he loves to chew on his bottle nipples and soft toys, and loves to have his gums rubbed. I wonder when his first tooth will come in?
We are settling back into our routines after being discharged from the hospital yesterday, however, Camden is taking a little longer to go to sleep at night than he used to. May be it is his age but I wonder if his bowel is still trying to catch up with the fact that he is over an infection. He is eating more today and getting back up to three ounces every few hours.
Try to write more later... laundry calls!

We are Home!

2008-03-06T13:43:00.003-05:00

We were discharged from EMMC today at noon. Andy then took him to Dr Ross' office for his Synergist vaccine. He is home now and sleeping in his car seat. Thanks to Mimi for helping us unpack and settle back home. His weight today was 6.355 kg, just before discharge. He will be on 7 more days of IV antibiotics and then we will redraw a blood culture from his central line. The results will determine if we need a new line, which will need to be done in Boston.
While we were in Boston last week for clinic, we changed out his G/J tube, for a new G/J Mic-Key button. It took some time to heal again, but is working well now. It was red and draining but we have been using soaks, and dressings with some silver nitrate.
Let's hope this is his only central line infection, and we can keep healthy until we can discontinue the PN and central line in a few months as planned.

out of the ICU... into the regular peds floor..

2008-03-05T09:12:00.002-05:00

Thanks Nana for the Moose... Camden moved from Pediatric ICU out to the regular Pediatric unit.... His color is good and he is all smiles this am... slept good last night too... will try to update blog soon

Camden gets admitted to EMMC Pediatric ICU with his first fever ever...

2008-03-03T12:20:00.002-05:00

Camden got his first gift on his first admission back to the hospital.... got a little fever last night probably minor starting antibiotics after consulting Boston will probably stay tonight here at EMMC in Bangor.... will try to update blog tonight.... Thanks to our friends at St Joseph Hospital for his "chick"

Lost all Track of Time!

2008-02-23T20:23:00.002-05:00

Sorry I haven't updated for a few weeks, things have been quite busy in Veazie! Camden is doing great though, and his last weight at Dr Ross' on Thursday was 13 pounds!! He is tolerating feeds wonderfully, eating about 3 to 4 ounces every few hours. We had one episode of vomiting last weekend, but after a check up by Dr Ross and readjustment of some medications, he quickly recovered and resumed eating up a storm! The home health nurses Chuck and Mimi are wonderful with him! We are looking forward to our check up in Boston this coming Thursday afternoon. I can't wait to tell them that Camden is now taking size 3 diapers, especially at night!
Maddie is having a blast at school. She says a quick bye in the morning, and does not want to leave in the afternoon. Valentine's Day was a lot of fun there too, they had quite the party! I'm not sure she is off her sugar high yet! This past Thursday afternoon, Maddie, Becky and Robin went swimming in Hampden. We then had pizza for dinner. We all had a great time, and Maddie even held her breath and went under water, for a second! She loved "swimming"!
I have even started to pick up some hours at work, to start transitioning. It is nice to focus on something else for a while.

We are Moving into the Big League!!

2008-02-08T17:04:00.001-05:00

Camden had his first short bowel clinic yesterday at Children's Hospital in Boston. He slept all the way to the hospital. We arrived an hour or so early so we had to see who was working on the 10th floor and visited for a while. They even helped us figure out why his extension tubing on his G/J tube wasn't fitting right (we removed the small tip of an old extension tube, and now it fits great!!). The nurses were all happy to see how much weight he has gained (almost 2 pounds since discharge!).
We then went to the clinic, and got an official weight, length, and head circumference. Camden is up to 11 pounds, 12 ounces, and his length and head are in the 30th percentile! We met with the social worker, pharmacist, whom gave us our month supply of Omegaven, and the doctors. They were all so pleased with his progress, and how hungry he is acting, that they decided to make some changes in his feedings.
First we are taking him off his tube feedings during the day, and giving him his total amount of tube feedings in 12 hours over night. Camden can now take all the bottles he wants and can tolerate during the day! We also are decreasing his TPN to twelve hours at night, as well as his TPN on 5 nights a week. He will receive sugared saline on his other two nights. One of his GI medicines was stopped too. We did not have any blood work drawn, his discharge labs were great. So our next visit won't be for another three weeks!!
After the visit, Dr Duggan came back into the room to ask if we would consider having Camden be the face of short bowel syndrome for an article Children's Hospital is putting together. They are publishing all of their data about short bowel, STEP procedures, and progress of kids, but needed a child! We said of course, and are awaiting the PR department's call.
While we were in Boston we stayed in a lovely B+B called Hotel Hanson, which had great service, and comfortable bedding! Camden finally slept a night between Andy and myself. I don't think I got anymore sleep, but it was nice!!
The picture is my dad and Camden during his visit on Sunday!

Getting out and around

2008-02-04T21:52:00.000-05:00

Camden had an appointment with a pediatric gasteroenteroglogist, Dr Tobbagh, here in Bangor today. It was just a meet and greet, in case of emergencies, but he was very interested in Camden and willing to be a small part of Camden's rather large team! We then visited the NICU and the ED at EMMC and showed him off! It was nice!
We are getting ready to go to Boston on Thursday for Camden's first clinic appointment. I am putting together a list of questions and goals for the trip. We will stay the night at Hotel Hanson and Maddie will get to stay with aunt Alice and uncle Steve's. She will have a blast!
We had a few visitors to the house this week also. Aunt Cathy, Uncle Ron and cousins Heather and Rick stopped in to see Camden and Maddie. Then on Sunday, Grampa Billy dropped in to see the kids. He had not seen Camden since he was first born. He could not believe the changes! He even gave Camden his afternoon bottle!
We are slowly getting into a routine at the house too. Why does it seem that I am doing twice the laundry with only one extra person in the house???

Busy Days at the Browns

2008-02-02T20:16:00.000-05:00

Camden had his first check up with his pediatrician, Dr Ross on Thursday. He has already gained a quarter of a pound, up to 10 pounds and 12 ounces (4.82 kg).!! The rest of his checkup was unremarkable, but this time we were to take a few pictures of Camden with Dr Ross. I'll post one after I check with Dr Ross to be sure it ok to put his photo on the web.
Today was our nephew, Dylan's, birthday party. All four of us drove to the Caanan motel, where we found twenty kids in the indoor swimming pool. I looked over and Maddie was stripping down to her birthday suit ready to jump in. She would not even get out for cake and ice cream! Andy and Tara swam with her too! We then had lunch with Travis and Tara. Naps for the three non-drivers on the way home too.
We are still trying to get a routine for the house too. With Maddie in daycare during the week, it has helped her adjust well. I am trying to figure out when I will be returning to work, which may not be full time for a month or so. Andy is back to work full time already.

Settling In to Home

2008-01-30T13:02:00.000-05:00

This has been a hectic week. We have made progress in getting the kid's room done, just a few more things to organize. Maddie started "school", aka daycare, on Monday. She acts like she never left. She loves playing with all her old friends, and meeting new ones. There are more kids in her new classroom, but Miss Patti is only a few feet away in her old classroom. She has been helping out a lot more too. She likes to try to help get Camden to bed, and help with dinner preparation.
Camden has actually been the fussy one. He acts colicky at times, but sleeps through the night. We took him into St Joe's to visit this morning and he showed all the staff how adorable his smile is, right on cue!! We are looking forward to seeing Dr Ross again this Thursday for a check up, and Monday we have an appointment with a pediatric gasteroenterologist here in Bangor, just in case of emergencies.
We are also getting used to having nursing in our home too. They have been here almost every day, and it has helped me get some things done. However, it is strange having someone new in our home taking care of Camden, even it I can nap for a few minutes!!
There is a date and time for the charity hockey game too. The NCAA won't allow the women's hockey team to play for charity. So the Third watch team will play them at broom ball, and it sounds like a riot to watch!! The game will be held at Alfond Arena, Monday March 24th at 7:30 pm. There will also be a raffle, and I am told other things too.

Home at Last!!!

2008-01-25T20:36:00.001-05:00

This week has been such a blur! Camden was discharged from Children's Hospital Tuesday afternoon, around 2pm. His eyes were the size of quarters after getting into the car, if I only knew what he was thinking! He slept most of the 4 hour ride north, and Maddie, Alice and Steve were waiting for us when we came in the door. Steve made a huge welcome home sign for Camden, it is still located at the end of the driveway. We unloaded a very full car, and left everything where we dropped it. Camden slept much of his first night home. I was awake most of the night, listening to the monitor, and trying not to forget to get up to give him his medications. The nurse from Apria, where we get his supplies, and a home health nurse visited us the first night to make sure we were getting settled in ok.
Wednesday we met with the home health nurse and tried to get a plan of care started, which turned out to be more difficult than we thought. She did not receive needed paperwork from the hospital, and had to make multiple calls.
Maddie is slowly adjusting to everything too. She has been very fussy and whinny, and if either Andy or I tell her anything she immediately starts to cry. She can be a tad dramatic when she wants. This hopefully will improve. Camden slept all of Wednesday night, barely waking for diaper changes. I even slept more too, but am still exhausted. Getting up even for half an hour during the night every few hours takes its toll.
Thursday we had Camden's first pediatrician appointment. Dr. Ross was so excited to finally meet the little man! He is really looking forward to caring for him! Camden had his first round of vaccines, and Maddie even got her flu shot too. We then drove over to Parkside so we could talk to them about Maddie starting daycare again. Luckily, they have a full time opening in her new classroom, and she starts on Monday!! Chuck and Mimi visited for a while too.
Today, my mom came over and had Grammie time with the kids so Andy and I could finally start organizing the kid's room, and all of Camden's supplies! He has a lot!! Shirley came over and took Maddie to the mall for a break from all the happenings here at the house. Andy and I made some good progress organizing the upstairs, thanks to all who helped.
Camden even took a 5 hour nap this afternoon, we will see how he sleeps tonight.

The Last Week in the CIty

2008-01-20T21:46:00.000-05:00

So let me catch you all up on our last week in the city. Maddie has been to the Museum of Fine Arts, with Mark and Marjorie. They all had a blast then Mark, Maddie and Guinness had a long nap. Chuck, Becky, and Robin finally made it down for a weekend. Nancy and Flo came up for the weekend. We all went to the Museum of Science. Maddie really enjoyed the animal exhibits, and talking on all the "phones" at the exhibits (ie, the audio at the exhibits!). Then we all ate dinner at the Cheesecake Factory in the Prudential Building. We have had great food three nights this week at Mark and Marjorie's house, thanks! Mom and Bob came to town today and moved much of our stuff back to our house. I'm not sure where it will all go, but that can be another adventure when we get home! Whew!

Camden made it to the 10 pound mark over the weekend too! He loves watching TV (like the Pat's football game!!) and seeing what is going on in the hallway outside his door. Wait until he meets Hallie!!! His direct bilirubin today was 0.3, and his total bilirubin was 0.7! He is tolerating eight hours a day of no TPN too!

Things finally calmed down a little bit this afternoon. Maddie went home for good. She staying at Chuck and Becky's house until Tuesday, then she will spend the day with our good friend Kathryn.

Camden watching the game. Cheering for those Patriots!!

2008-01-20T16:47:00.000-05:00

Camden got to watch the game... But not with his Cheerleading Sister this time.... But watch out for the Superbowl He and Her are Planning a Party!! At Home!!

This pick Sent durring game from Tonya's Phone

Go Pats!

Counting Down to Discharge...

2008-01-18T22:36:00.000-05:00

T- 85:24:00 (3 Days, 13 Hours, 24 Minutes) till he is off TPN we put him in his car seat and walk out the door for the First time as an Outpatient (in our custody) YEAH...

More to come

The Final Countdown!!

2008-01-18T20:57:00.001-05:00

Maddie, Andy and I returned to Boston on Tuesday, to allow for better traveling after yet another snowstorm. It was so nice to be in our own home, and bed. I think I slept better than I have in weeks.

This week Andy and I have been having a lot of in servicing by the hospital staff about Camden's care. We met with Apria people and talked about his infusion therapy (TPN) and enteral feedings (J tube Feedings). We learned about the pumps we will be using at home, and how portable two of the three pumps are. We also have been completing many of the items on the nursing checklist for discharge. We already do much of his care, but things like dressing changes, checking the balloon on his G tube, and things like that, we are being sort of tested on. Camden passed his car seat test Tuesday night. He had to be able to sit in his car seat for 2 hours without any changes in his oxygen level.

Camden is also no longer on contact precautions! His stool sample was negative for C Difficile. That means Maddie can now go in the play room YEAH!!! It also means the staff does not need to gown and glove to enter his room.

Internet problems ... will complete edit this post later.

Getting Ready!!

2008-01-12T19:47:00.000-05:00

This week Maddie and I were home in Maine, getting the house ready for Camden to come home. There was so much to do, I think I made a huge dent into the to-do-list, with a lot of help from friends and family!!

Camden's crib is set up, and I even switched bedrooms with the kids... yes, the kids get the bigger of the two bedrooms....sacrifices!! Our king sized bed barely fits into Maddie's old room, but it will work for now. My mom, aunt, and uncle helped a lot with cleaning and taking Maddie for an afternoon so I could clean and organize. Andy's aunt Eunice and cousin Jen came down today and they had a huge challenge....I asked them to clean my kitchen. It looks great..THANK YOU!! So things are almost ready. Andy came home Wednesday night on the bus, and had to work today and tomorrow. Then we plan to be back in Boston for the week.

Another amazing thing occurred on Friday night. There was a benefit spaghetti dinner at the EMCC campus for us. It was organized by my good friends Helen and Dora and Christina. They did an amazing job!! Turnout was much more than either of us could have dreamed. It was good to catch up with our friends, and meet people who just wanted to help us out. THANK YOU ALL!!! It was very humbling to know how big our family really is.

Camden has spent the majority of the week being spoiled by his nurses at Children's. He continues on a steady course and things look very promising to bring him HOME on the 22nd. Today he even got a bath and massage from his nurse Jen! I can't wait to have him all to myself (along with the entire family!!) soon.

Camden outside again!

2008-01-08T15:25:00.001-05:00

65 deg F here in Boston today!

This message was sent using PIX-FLIX Messaging service from Verizon Wireless!

Outside for the first time

2008-01-06T22:44:00.001-05:00

Cam's first trip outside... Yeah fresh air... ok Boston air...

This message was sent using PIX-FLIX Messaging service from Verizon Wireless!
To learn how you can snap pictures with your wireless phone visit

www.verizonwireless.com/getitnow/getpix.

A Stroll in the Garden

2008-01-06T20:07:00.000-05:00

This weekend has been fairly quiet at Children's, except for Maddie (nothing new). Camden has been a little fussy at times, and feels better after a burp or position change, but don't we all? Camden is also really enjoying his two bottles of formula a day, and hoping for more! His tube feedings are up to 17ml/hr continuously. But over all a pretty low keyed weekend.

But we did something new today. After we cycled Camden off his TPN, We all went for a walk in the Prouty Gardens, Outside! Camden's tube feeding pump fit in the stroller pocket and we bundled him up to go!! It was in the forties outside, but it felt warmer. He looked at everything! We then walked around the hospital's first floor and Maddie found the stage in the entertainment area. She hammed it up, dancing and singing!! It was a great feeling to get out of his room, but even better to get him outside in fresh air (even if it was city air!!). Then like a good boy, he fell sleep in the stroller on the way back up his room! I think he napped in the stroller for a good hour or so.

We also had a little stroke of good fortune today too. One of larger single rooms opened up and I mentioned it to the nurses. At first they said they were getting an admission into that room, but then they said "how fast can you pack him up?". In 15 minutes we had him packed and moved into a much larger room. It was nice not to be cramped into a small room, and have room for Maddie to play in the room too.

Gown and Gloves

2008-01-04T17:22:00.000-05:00

So Camden is now on precautions since his stool sample yesterday showed C. Difficile. Not a huge surprise, it did get us a private room, but it also means that Maddie is unable to play in the playroom. Ugh!! So I come into the hospital a little later with her and Andy takes her for her nap, or lunch. Today he even took her on another train ride in town to the Prudential Building. He wanted to show her the city.

Camden needs to have and antibiotic for 7 days to re balance the GI tract and then have another stool sample sent. We also clamped his G tube yesterday. He did vomit last night so it was reattached to gravity, but today they re clamped it and started him on Reglan. So far, so good. We may even increase him up to 3 bottles a day, maybe on Monday if he is doing well.

Andy and I are finishing up the discharge teaching checklists, Andy even changed his central line dressing last night, and did a great job! We have to go home this week to get his car seat (for the important car seat endurance test!). I think Maddie and I will stay home for the week and get the house cleaned, organized and ready for Camden to come home!! We have a tentative window of January 15 to 22, but I am thinking it will be closer to the 22nd. Anybody up for some cleaning?!?!?!

Team Meeting Update

2008-01-02T22:18:00.001-05:00

Today was Camden's team meeting at Children's Hospital. The surgeon, GI docs, nurse practitioners, nurses, social worker,child life specialist, case manager, nutritionist, etc... all sat down and discussed our plans for discharge. The first thing they all said was that Camden is doing great, they are all pleased with his progress. Then they discussed the plans for going home. Camden is medically ready for discharge, and we are talking discharge not only from the hospital, but to HOME!!

We can come back down for weekly checkups at the clinic, but we do not have stay at the apartment in Jamaica Plain. So, the discharge planners are setting up home health services, Nursing, Supplies, Pumps, Pharmacy Meds etc. for Veazie. and we have to go home at some point and get the house ready (including finding and setting up a crib!!) So we are looking at going home (all of us!!) in 2 to 4 weeks!! We also discussed conditions that we return him to Children's, ie infection, line breakage etc., what we can take care of in Bangor, many of his labs once we are only at the clinic monthly or so.

So we are starting the Discharge Checklist of Trainings, Tasks to complete, and even met today with a vendor that will supply his pumps and and most of his supplies... hopefully as time goes on we will narrow down the "Discharge Window" and we will set a mutual DATE in the days ahead.

Camden is tolerating his two bottles very well. We even clamped his G tube for most of today, and he did really well. Hopefully, we can keep it clamped for the most part now, we will have to see. His weight today was 4.17kg, up from 4.14kg yesterday.

More to come and pictures hopefully tomorrow???

Two Bottles!!

2007-12-31T21:41:00.000-05:00

Camden's doctors and nurses thought that he was ready to increase feedings today. He receives 17 ml/hr continuously. He also is able to take two bottles a day now, instead of one. After each bottle, he burps, and falls alseep. On Saturday, both Camden and Maddie wore their Patriots uniforms (Maddie's was a cheerleader) to support our now unbeaten team! We are fighting with a red bottom, so we are now giving him Aveeno soaks twice a day, besides barrier cream and a powder to help. Sunday night's labs were also great!! His direct bilirubin is down to 1.7!! Way to go Camden!
Maddie and I had a lazy day at the apartment. We didn't even go into the hospital until after her nap, and she slept until 2:30!! Tonight we took Maddie to Boston Common on the train for the early fireworks for the new year. She enjoyed it, except she covered her ears.
So, happy new year to everyone!!

Slow and Steady....

2007-12-28T20:26:00.001-05:00

Camden's progress has been just that. We are slowly increasing his continuous feeds, in fact he has tolerated 14ml/hr for a few days now. He even is doing very well with the 14ml by bottle once a day too. We may increase both of them tomorrow! he is also doing well cycling off his TPN for two hours each evening. His blood sugars were high enough that we don't have to check them any more. We also made the 4 kg club, 4.09kg today. He is definitely smiling now, and he has the cutest dimples!! We are amazed at how far he has come, but still a little scared of what lies ahead, and how we will manage. I guess we will though, thanks to our great family and friends for support and love and prayers!! Thanks!! We are just waiting for the team meeting next Wednesday to discuss discharge plans. Keep you posted.

Too Much of a Good Thing

2007-12-26T21:08:00.000-05:00

Camden had been pooping so well, in each diaper, but it is very watery. So, today the nurse practitioners on his floor decided to stop the tube feedings for a couple of hours to adjust his input and output. This was after I gave him his 14ml of milk by bottle (in about 10 seconds, and while half asleep!!). We had also increased the feedings to 16ml/hr, and had to reduce them back down to 14ml/hr, so his body could hopefully adjust too. (5ml = 1 teaspoon)

The good news is that he tolerated cycling off his TPN for an hour the past two days, and he was off for two hours today! The way they check to see if he is tolerated it, is to check his blood sugar half an hour after cycling off and half way through the time off. He passed today, so we will do it again each day. Hopefully this will increase to a time when we can maybe go all day without TPN and only need it at night! The step after that is to try getting him off completely!! It is a step in the right direction.

All the nurses and even Dr. Puder are amazed at how light his color his now. Last week his direct bilirubin went from 7 to 3.1 last Sunday!! What a huge difference in his alertness level too. He even smiles now, and I think he may even be close to laughing!! :) He sits up with only a little help and loves to look around. We are all convinced that he is developmentally on track so far!

The staff is also setting up a TEAM meeting with everyone involved in Camden's care to discuss what needs to happen in order for us to be discharged from the hospital, and for us to go home to MAINE!! This meeting will hopefully take place in the next two weeks!!

Merry Christmas!!

2007-12-25T22:25:00.000-05:00

It has been a whirlwind of a week. Sorry I have not posted anything new, time is whizzing by so fast!

On Wednesday, I drove Maddie up to Portland to meet up with my mom who took her to her house for a few days (would it be horrible to say that we both needed a break from each other??). However we were late, the Boston Pops were giving a concert at the hospital. Camden even came down to the entertainment area to join Andy, Maddie and myself for a great concert! Camden even startled occasionally at the loud music!
Andy and I spent Thursday and Friday at the hospital with Camden, for about 16 hours a day! Thursday, Camden's central line stopped working and was actually leaking from the insertion site. The nurses had to start an IV to give him sugared saline, an Camden is becoming a very difficult person to stick. He has needed to be stuck numerous times for each lab draw, and the only place they could start an IV was in his scalp):. But it worked. He was put on the OR schedule for a new central line on Friday. We asked the surgeon of he could also do the circumcision at the same time (while Cam was asleep!) and the doc said he could do that too.

So, Friday we spent the morning in his room and the afternoon in the OR waiting room, where we saw another short gut family waiting for their little one to get out from the OR also. So we chatted until Camden was moved into the recovery room. The central line works great, they can actually draw his labs from it like it is supposed to. The circumcision also went well and we were happy the surgeon was able to add it on to the time in the OR.

After a short visit to Cam's room Saturday morning, Andy and I headed up to Old Town to my cousin's house. We were having a family dinner for the holidays and we were also getting Maddie from my Mom. We had a great time visiting everyone, and it was nice to spend one night in our own beds!

Sunday, we visited the staff at St Joseph Hospital where I work, then to our good friends Chuck, Becky and their daughter Robin's house. We visited Hallie, our black lab, there too! We then went over to my Dad's house to see him and his wife. His wife Lou was out of town visiting family for the day, but we watched the Patriot's game with my dad and ate pizza. We had a great visit. Maddie even received her Christmas presents from my dad... a rocking horse that whinnies and clops!! She loved it!

We then drove to my mom's house for the night. My nephews were there for the weekend and maddie wanted to play with them before she would go to sleep. We awoke Monday morning to sunshine and temps in the 30's. A good time for Andy to take Maddie and the boys outside. They dug forts in the snow and slid down a small knoll out back. Maddie then came insde and exclaimed "I need new clothes!!". My brother and his wife then came over and we opened our stockings and all the presents under the tree. Maddie loved opening each gift! After a late lunch, Andy, Maddie and I headed for Boston. We stopped at the hospital to see Camden, who spent the weekend sleeping and looking cute for the staff. Camden also had visitors on Sunday. His aunties from NJ arrived and spent time playing with him and showing them how much he had changed since their last visit.
We spent Christmas morning at the hospital with Camden. Maddie and Camden were surprised by a visit from Santa Clause!! He had a present for each of them, and we had our picture taken with him. Aunties then stooped in and Maddie opened even more gifts!! In the afternoon, Andy, Maddie and myself went over to Mark and Marjorie's. Some of her family was there, and Maddie caught up with Josh and Erica, whom she had not ween since Thanksgiving!
We opened still more presents, one of which was a princess outfit complete with jewelry and gloves, for Maddie from her aunties!! We sang songs, ate a wonderful dinner, and Maddie was of course, the center of attention! She finally fell asleep at 10pm that night after two days of Christmas!!

Camden is making slow progress toward discharge. Camden 's tube feedings have been increased to 14ml/hr, and he is getting one bottle a day of 14ml! He still loves that one feeding. His weight is almost to the 4kg club! His color is also improving...almost as pale as his mama!!

Snowed In!!

2007-12-18T21:43:00.000-05:00

It has been a crazy weekend! Andy, Maddie and I headed north on Thursday around noon, thinking we would beat the snow. Instead we became part of the biggest parking lot on history! It took us over 6 hours to go 13 miles to Route 1 in Saugus, Mass. We did not pull into our driveway in Veazie until 1 am!! Madness!! We returned to Boston Monday evening, after digging out from yet another snowstorm on Sunday. Thank goodness Maddie and I love the snow! Maddie even spent Saturday night with my aunt Alice and uncle Steve! They played in the snow and baked Christmas cookies! I even got some shopping and wrapping done during the storm.
Over the weekend,m Camden chilled out with all the nurses on 10 east. His tube feeds went from 4 to 6 to 8 ml/hr and his TPN went down from 16 to 15 to 14 ml/hr. His weight today was 3.9 kg (I always have trouble converting it to pounds and ounces!). He looks a little less yellow today, that may be due to his direct bilirubin on Sunday fell to 5 from 8 or 10!! Great progress. We don't mind the slow progress....it wins the race!! PT was working with him today too, no problems there, either. Good flexibility, and on target developmentally.
Just wanted to close today's report with a quick note to Sue.... get well and on your feet soon!! We love you Nana!!

Celebrities Visit Children's Hospital

2007-12-11T20:49:00.000-05:00

Over the past two days, there has been a lot of excitement at Children's Hospital. Yesterday some of the Red Sox pitching crew came to visit. Daddy took Camden and Maddie down to the entertainment area to see them. They even got up close with the World Series trophy! Today, some of the Celtics came in for a visit. Daddy took Camden over to another play room for a look, but there was too many photographers in the room to get too close, or for a photo op. Maybe next time!
Camden has been doing well now that we have started to give him breast milk through his J tube. He vomited a few times late last week, so it was stopped for a few days, but we started it on Sunday and he it tolerating it well so far. His direct bilirubin was up to 12 last week has even started to drop to 8 this week. His weight yesterday was 3.79 kg.
Maddie and I had a quiet day at the apartment today. We walked across the street to the library after her nap and checked out some new books. Daddy spent the afternoon with Camden. I really did not get Christmas shopping started like I thought I would yesterday, maybe later this week?!?!
Andy and I head back to Maine on Thursday. Andy will work over the weekend and I am hoping to have my OB appointment on Friday. Then Maddie and I will drive back to Boston on Friday afternoon or Saturday morning, depending on the weather. We are hoping that my mom and her husband Bob will join us for the weekend. Maddie misses them a lot, it has been over three weeks since her last visit.

Happy Birthday Nancy

2007-12-09T21:07:00.000-05:00

This weekend, Nancy and Flo came to Boston for a visit. Andy, Maddie and myself met them and Mark and Marjorie for dinner at the Dogwood Cafe here in JP Friday night. Maddie even made a new friend there, a 15 month old girl named Ellie. They walked around the restaurant and listened to a young man singing. They even danced and held hands as they walked around!
Saturday, Nancy, Flo, Maddie, Andy and I spent most of the day at the hospital visiting with Camden. He enjoyed being held by his aunties, and they loved holding him and seeing how much he has changed in the month since their last visit. Then we went to Cambridge for dinner at a good friends of Mark and Marjorie"s. Their oldest girl is also a short gut child. We also participated in their celebration of Chanukah, with lighting of the menorah, and singing lots of songs. Maddie had a great time playing with Reena and Arella, and they even taught her how to play a dradle game. She had a blast! Andy and I even got to chat with Reena's parents about her progress. Reena even showed me her G tube button.
Sunday was aunt Nancy's birthday!! We went over to the Mark and Marjorie's for brunch. Our good friend Judy came in from Marlborough to join us. We then went in to see Camden before the aunties headed back to NJ and Judy headed home. Maddie and I came back to the apartment for a quick snack, then Maddie took a 3 hour nap!! I even joined her for some napping too. Andy spent the afternoon napping with Camden on his chest. Camden even wormed his way up under his chin! It was nice to have some down time. Tomorrow I am planning a shopping morning with Maddie to start Christmas shopping, and see more of the city.

A day at Children's

2007-12-07T20:37:00.000-05:00

We have spent much of the last few days at the hospital with Camden. Maddie and Andy came in later on the morning, I went in around 10 am. We eat lunch, then one of us take Maddie to the sleep rooms for a nap by 2pm. Then we all visit Camden for a few hours and head back to the apartment by 6 for dinner. It has been working out well except we have started to realize that Andy is the one that is to get Maddie to sleep. I can't seem to do it without tantrums. So to keep the peace, it's Andy's job. My job seems to be walking in the hallway with Camden... he loves looking up at the ceiling.
Yesterday we had a nice, though quick, visit with the Brogans. They were on their way for Ellie's clinic visit, and stopped by Camden's room. It was nice to finally meet them in person, and we look forward to future meetings.
The Christmas tree lighting at Children's was also yesterday, so Andy, Maddie and I went down to the lobby for that. Maddie really enjoyed the choir! She danced and sang along. Today we finally got Camden off the floor for photos by the Christmas tree, and I hope to get them made up for cards this coming week. They were great!

Life after Poop

2007-12-05T21:16:00.000-05:00

Camden is having another one of those miraculous days of progress. Besides continuing to poop with almost every diaper (that's my boy!!), he started to receive Pedialyte through his J-tube this morning. After short gut rounds, the surgeons stopped in to his room and checked on him and us. They planned to start him on formula this weekend, then we reminded them of the stash of breast milk in our freezer that we transported to Boston. They were delighted to learn that, and at 2:55 today, Camden began "eating"!! He receives 2 cc's of breast milk every hour and so far has been tolerating it well. If all goes well, they will increase the rate each day or so.

WBZ, a Boston news channel was also in the hospital today, filming families for their Day of Giving on Dec. 20th. All four of us were luck enough to be filmed in the play room for footage. We will have to watch to see if we make it through editing!

I realize that not every day from here on out will be big days like this week, but it is nice to feel progress towards going home one day soon!

We have POOP!!!

2007-12-04T13:02:00.000-05:00

Andy checked in with the nurses today by phone and Tracy said Camden pooped three times this morning!! I guess the contrast from yesterday's study did the trick, along with major surgery one week ago! We have to discuss the next step with the doctors, but hopefully it means we can start the feedings through his J tube soon!
Andy, Maddie and I are here in Maine, snowed in after 18 inches of white gold! Maddie had a blast making snow angels, and chasing mommy in the snow. She did not even want to come in for hot chocolate! We will be heading back to Boston this afternoon, after visiting with my brother and his family, and stopping to see my Dad for supper.
Way to go Camden!!!

Company from Maine

2007-12-02T21:45:00.000-05:00

Camden is settling back into life on the 10th floor very well. he is weaning off his doses of Morphine and Maddie and I were able to hold him more over the last few days. He is such a joy to watch, looking around his room and trying to figure out what Maddie is all about. He is still working on that one! He even puts a little weight on his legs! But overall, he loves to nestle by my neck and have snuggle time! That is the best!!
We had special company too... Aunt Alice and Uncle Steve! They drove down from Old Town to spend the weekend with us while Andy was at home working. They also were able to spend time holding Camden, playing with Maddie, and seeing south Boston. Maddie and I then rode back to Maine with them for a few days of rest at home, just in time for a whopper of a snowstorm Monday. It has been predicted we will get 12 to 18 inches of the white stuff! We can't wait! Maddie loves to play in the snow. We are heading back to Boston Wednesday after I have a checkup with my OB.
We are just waiting for his GI series on Monday to check the surgeon's fine work, and see if he is ready to start (ever so slowly!!) to be fed through his J tube. Hopefully we will the get the OK and he will actually get a few cc's of feed! Keep your fingers crossed.

Movin' on Up...to the Eastside

2007-11-29T16:45:00.000-05:00

Camden had another move today. He moved back up to the 10th floor, east into a PRIVATE room!! Before his move, his NG tube, foley, and oxygen were removed. Now we don't have to rush to get pics when the NG tube comes out... we get pics of his beautiful face anytime we want! He watched all the moving from his crib with big blue eyes. He stayed awake most of the afternoon, and he seemed very comfortable. He actually went 6 hours between pain meds. All the staff on the 10-East were so happy to have him back. Many of the nurses came to welcome him back, and check on him. We know we are leaving him in good hands when we need a break from the hospital.

One big step forward

2007-11-28T18:00:00.001-05:00

Today Maddie and I went into the hospital to visit Camden, she was excited to ride the bus! She played in the room, family room and playroom very well and then daddy came into the hospital at lunch time. Maddie fell asleep for an hour and half, then we played in the 10th floor playroom.
Camden had a big day. At 4pm, it was decided that his breathing was effective enough on his own, and his breathing tube came out. It was bothering him anyway, his heart rate and oxygen levels would drop occasionally. It is called a vagal response. He tolerated the extubation very well and seemed to smile afterward! When we left the hospital, he was resting comfortably. The morphine and versed that he was getting every 90 minutes or so was changed to a continuous drip, then both were stopped once the breathing tube came out. His eyes were open some today and after the extubation, he was making great eye contact. We call the ICU each night for an update, and will update all if any changes. Hopefully he will return to the 10th floor by tomorrow, they all miss him up there.

Surgery is over

2007-11-27T18:32:00.001-05:00

Monday was a very long day at Children's Hospital for Andy, my mom and I. Camden had his big surgery and we waited in the lounge. He went to pre-op at 11 am and went under the knife at about 12:30. We got updates every 90 minutes or so, and even received 2 updates from Dr. Duggan who was in the OR with other cases. At about 7pm we got word that they were finishing up. He was moved to ICU at about 8pm.

We learned that he grew small bowel from 26cm to 61cm on his own. After the STEP procedure, he measured 96cm!! Still about 1/4 of the small bowel that he should have, but it was more than I thought he would have, and enough to work with. The G/J tube was placed, so we can suction from his gastric tube and feed through the J tube port at the same time if needed. The cholangiagram showed a normal gallbladder, and the liver biopsy went well.

The anesthesiologist tried to take out the breathing tube, but he just was not ready enough. Even today, when they tried, he appeared to be in too much pain and it was decided to leave him intubated until tomorrow at the earliest. But as we were getting ready to leave, he was opening his eyes and looking around. He was getting Morphine and Versed every 90 min or so but he went more than 2 hours this afternoon! Things are looking good.

He even had a visit from one of the nurses from the 10th floor too. Tracy came to check on him. They all miss him and want him back on their floor soon!

So we will see his progress tomorrow and keep everyone posted. Thanks for all the thoughts and prayers!

Saturday at the Museum

2007-11-24T20:27:00.000-05:00

Today, Andy, Maddie and I took Julia to the children's museum in Boston. We all had a blast! Maddie and Julia each found so many things to explore and try out... like making bubbles, playing different musical instruments, trying out a bobcat bulldozer, and shopping in a Mexican market. We all met my cousin Ryan, his wife Lisa, and their sons Tyler and Caleb there. They were visiting Lisa's family in Boston, from Virginia. And where was Auntie Jana? Holding Camden for a good four hours!!! He had a great day! His weight is 3.7 kg this morning. We are all waiting for surgery on Monday. I'll keep you posted.

Blog Updates Finally.....

2007-11-23T22:30:00.000-05:00

YES... Andy and Tonya now have a reliable computer and internet connection both at the Hospital and their Temporary "Boston Home" and have figured out how to add pictures and web albums... so be sure to check Both forward and backward as Andy is trying to get past history posted and Tonya is posting forward....

Good Luck to them...

-JCBW

p.s. What a cutie... I finally go to hold him earlier tonight...

Thanksgiving Blessings

2007-11-22T20:33:00.000-05:00

Maddie, Andy, and I are in NJ today for Thanksgiving. We are so blessed with our family and friends. Our support system has made this time in Boston so much easier. Thank you all.
Nana and Grampy could not stay away, and came to Boston from NJ Sunday, and visited until Tuesday. Grammie also stayed until Monday afternoon to visit. Andy actually returned to Boston Sunday night which trilled Maddie.
Camden has had a very busy week. Monday he had a HIDA scan, in which he was injected with radiated isotopes and scanned. After lunch, Mommy picked him up from Nana and broke his Broviac central line. Mommy quickly pinched off the line and called for the nurse. They were able to repair the line. Camden then went back to nuclear medicine for another scan of the isotopes, but no more injections. Nana and Grampy headed back to NJ with Maddie, and Grammie headed back to Maine. Andy and I spent the rest of the afternoon holding Camden.

Tuesday Andy and I spent the day at the hospital with Camden. He was holding his head up more often and even looking around. He watches his mobile and the Child Life Specialist LaKeisha, (she is amazing tool that adds to his team) brought him a mirror for his crib too. Camden even had an eye exam by the opthamologist. He passed the exam. He also had one more scan in nuclear medicine.

Wednesday morning Camden had a rectal biopsy to check motility of the colon. It took about half an hour and he tolerated the procedure well. The audiologist came for his hearing exam too. We found that Camden's hearing is muffled. He will have another test in 2 to 3 months, or before he is discharged from the hospital. If that shows no improvement, Camden will need hearing aids.

So we met with surgeons to discuss the surgery on Monday. they have saved all afternoon for the surgery, in which they will most likey do the STEP procedure, place a G tube, dilate any stricures in his colon, and a liver biopsy. The surgeon is very confident about this course for Camden. Our ultimate goal is to get off TPN and reduce the need for Tube feedings as much as possible.

So we headed to NJ Wednesday afternoon and are having a great time with family. We will return to Boston on Friday. Camden had his Thanksgiving outfit on and super assistant Sara even took photos for us. Once we download all the pics to our laptop I can figure out how to put them on the blog.

Happy Thanksgiving to all, and thanks for the prayers and thoughts.

Quick Update from Mom

2007-11-17T18:37:00.001-05:00

Camden's weight today is 3.56 Kg (7lbs, 13oz). His color is a pale yellow, better than the last few days. Big sister Maddie , Grammie, and Mommy had lunch with our good friends Mark and Marjorie and then walked in the Arnold Arboretum here in Jamaica Plain. Maddie napped while we were walking, but she woke up to get in the car to go see Camden. He slept most of the time we were there, but we did go for a couple of walks in the hall with Maddie and Grammie. I think he was dreaming of more ways to pull out his NG tube! We are waiting for his HIDA scan of his liver on Monday. He is also on 5 days of Phenobarbital before the scan to help the liver excrete bile better.
We miss daddy who is at home working for the weekend. Luckily, he will be here on Monday night. Get some sleep Daddy!!

Welcome to Camden's Blog

2007-10-21T11:25:00.000-04:00

Camden turned 1 month old on October 18th. He is stable and growing, and the doctors are waiting for him to grow some more before determining what surgery he will need next (if any.) He was born on September 18th, 7 weeks early, when it was decided that the dilation in his bowel was causing a back-up and needed to be addressed.

This photo of Camden and his big sister Madison (age 2 - isn't she adorable?!) and it really illustrates her concern and tenderness toward her little brother.

Now that this is here, Camden's parents and others will add more information about Camden, his medical history and status, and life with SBS.

-Auntie Jana

It's A Boy

2007-09-18T09:54:00.000-04:00

Well at 09:54 a baby was born... It's a Boy they said and he weighed in at 4lbs 11oz breathing on his own and pink. All Good Things so far.

for a link to day 1 pics... Click Here