The Legend of the Short Gut Wonder!: There's a hole in thy bucket, dear Summer

Summer's IV has been repaired 2 times so in the last 10 months and is now leaking. About 2-3 weeks ago, we noticed the bio patch (the blue circular patch under the tape at the line site), was looking a little strange. A couple of days after we put a new one one, the blue liner on the itop of the foam started separating, sending the foam to wander around her chest. This patch if full of a special chemical that prevents germs from entering the line site in her chest for 7 days. We typically only change it out every week...we have had to change it out every couple of days since it was coming apart. At first we thought maybe the bio patch was defective, so we switched to a different batch number. Then we thought maybe the times she was sick with reflux, pneumonia, and ear infections, and was throwing up, the moisture was penetrating the tape. Changed again and the new theory was sweat. After 2 weeks of bio patches coming apart and the site looking like a foot that has been in a wet sock too long, we figured the line must be leaking from somewhere inside where we couldn't see it.

Summer at the hospital,,,the bio patch is in the middle of her chest where the IV is placed

She's having a great time playing with the pulse ox monitor we got to take off :)

I decided it had gone on long enough, so I called the home care nurse and she called the GI doc on call to see what we should do. I was instructed to head to the ER for the line to be inspected for leaks. It was Tues. night Aug 8...I packed myself and Summer up and headed for the hospital. I arrived at the ER around 8:30 and was through triage fairly quickly. The IV team came and checked the line (without removing any tape) and explained that there may be a sheath formed at the end of the line inside that was forcing liquid back out the site, so the line may not have to be replaced. We sat around a little longer and were told that surgery wanted us to be admitted in case the line was to be replaced the next day. By midnight they finally had a room set up for her and the nurse was finishing up paperwork, etc. While she was in the room, Summer demonstrated the face turn blue cough she has had for the last few weeks. Rewind a little....Summer had an ear infection and a cough a month ago that turned into a double ear infection and pneumonia. Fortunately, since she had 2 different antibiotics back to back, the pneumonia was not as severe as it could have been . They gave her albuterol through a nebulizer and started Zithramax for the pneumonia. We had gone to the pediatrician that morning and he said her lungs were now clear as a bell. Back to the ER...her cough was still hanging on a bit and it is quite the scary cough at that. We haven't been sleeping much since every time Summer coughs we jump up and make sure she can breathe....she turns blue and I have to blow in her face to take a deep breath to get back on track. The nurse in the ER freaked out when she saw this and hooked Summer up to a pulse ox to monitor her oxygen saturation, and ordered an x-ray and a whole bunch of viral tests, including RSV, Whooping cough, and Swine flu. This little hiccup delayed us once again....the x-ray was done at 1:30 AM and we weren't in her room until 2:30 AM. I then had to go move my car and bring in my overnight bags...I stopped at the cafeteria because by then I was starving, and ran into a couple of the nurses from the IV team. They told me they decided to check out an x-ray Summer had a few weeks ago of her line, and told me it was too high. They felt like the line should be replaced even if it wasn't leaking, so I expected this is what would have happened. I got into bed at around 4:00 AM.

My night was not very restful...Summer woke up a few times coughing, as she has been at home, and the nurses were coming in to check vitals and change diapers. Summer was so tired by morning, she was actually grumpy. This is saying a lot because this kid is the happiest thing that you will ever see! Even as sick as she has been, she has maintained her happy, smiley, giggly disposisiton :) At 9:00 AM they came to take her Radiology for a dye study on her line. During the study, the 2 docs in the room told me they couldn't see any leakage around the line, but that they had some much more detailed photos that could be reviewed. We went back to our room and ran into the team doing rounds for the morning. They said after all was reviewed, there would be a decision in the next couple of hours...this was about 10 AM. I ran a and grabbed lunch, then waited....and waited...and waited. Finally, around 2 PM, an IV nurse came by looked at Summer's line....this time removing the tape and really looking at it. She immediately told me she could see the moisture build up and that she had detected some on the x-ray pics. She indicated the line would indeed need to be replaced...it was now up to the docs to give the go ahead. I waited some more....and longer....through dinner time...finally at 7:15 my nurse came in and told me they were considering sending us home to come back and have surgery in day surgery as an out patient!

I was, of course confused as to why I would have to sit around all day, be told by a couple people the line was bad, and then just pack up and go home. But, that is what I did. We got home around 10:15 PM...just in time to hook up TPN for the night. I was told the surgery center would call me, but I didn't want to wait around for that, so I tried to call them the next day. I had been to an appt. and spent some time at my parents house, so didn't make the call until it was too late in the day to catch anyone. The next morning (Fri now) I called the transplant nurse, got the right number, and called to schedule. The scheduler told me we would have to come in first for a consultation. I told him I was very frustrated, especially now that Summer's line was showing signs of moisture again, and that I didn't want to sit around and wait for an infection to brew. He was very helpful and squeezed me into the schedule at 3:30 PM. He thought that we might be able to get Summer on the OR schedule for Monday...that sounded okay to me :)

We went to the consult...as soon as the doc came in the room he was upset with how we had been handled. He told me that is was very unacceptable for us to be using a bad line that was clearly a problem, had been repaired twice already, and has been grown out of...Summer was only 8 pounds when this line was put in, and is now 19 lbs 4 ounces...big difference! He said we never should have been sent home and that this was just a recipe for disaster. He didn't want us waiting until next week to have the surgery done and got on the phone. He made some calls and got us admitted in a flash. Summer will spend the night with a temporary IV delivering fluids, and have surgery tomorrow.

Summer has been very hyper today. turning herself inside out with smiles, "jumping" with her legs while on my knee, babbling, all around slap happy! So glad she doesn't have the memories from this place...the nursed love it :) Me too!

I had ignored my instinct to grab my overnight bag on my way to the consult, so I called my parents and they gladly gathered my bags, my computer, and a blankie for Summer, and headed up to the hospital. Thanks mom and dad....the other day I brought my computer, but accidentally left the power cord...my computer lasted about 10 minutes, then croaked....gotta have my life line! This is great blogging time too :)

The heart monitors that once took up her entire chest, now rest on her chubby side...hardly noticeable :) This is a good shot of her war wound....I don't like to photograph it a lot, but at least it blends a little better now...the scar shows how wide her once 2 lb 11 ounce body was...