Settling In to Home

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!!!

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

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!!

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...

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!!

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!!

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!

65 deg F here in Boston today!

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Outside for the first time

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

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A Stroll in the Garden

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

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

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???