Movin' on Up...to the Eastside

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

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

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

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.....

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

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

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!!