It has been a very frustrating stay at the hospital. How quickly I had forgotten that the plan changes with each doctor you talk to and the execution differs with each nurse assigned. Add in the fact that it's the holidays and things are running on short staff...
Where did I leave off in my last update?
Ah, they removed her central line last Thursday and although it was a surgical procedure it was very minor and simple. She's been off TPN since last Friday.
Monday, on Christmas Eve, she had a PICC line placed. They wheeled Ella and me down to Radiology on a gurney that morning (Ella really enjoyed the ride) for what I understood to be another quick, minor procedure of putting a PICC line in her arm. This would allow for better infusion of the IV antibiotics and if needed, TPN. It also allows for blood draws without sticking her.
I waited in the surgical waiting room. After about 90 minutes I was wondering what was taking so long? The receptionist called down for me and informed me that they had trouble finding a vein so they put it in her leg. That's all I was told. I was very disappointed to hear this as it was not discussed as an option with me. Meanwhile, the receptionist asks me to answer the phone as she had to run out "for a minute". Really??? I think she was gone an hour!
Finally I go to recovery to find a cold, unhappy Ella. The PICC line was not really "in her leg", it's in her groin. I was seriously upset. Think about it... a line that must stay sterile/clean in a baby's groin... a baby who has a condition that makes for frequent, loose poops. What were they thinking? We are in the hospital due to a line infection and a new line is placed in the dirtiest place on a baby?
Apparently they had no other option, she had bloody marks on both arms for where they tried to put the line in there. Apparently she's too chubby... ironic since her GI doctor is obsessed with her ability to gain weight.
So she is getting her antibiotics through the PICC in her groin to treat her central line infection and we are praying that the treatment doesn't lead to another infection.
Seriously, if I didn't know better I'd think I was making this stuff up...
Needless to say Christmas Eve and Christmas day were hard. The PICC dressing had to be changed twice on Christmas day. It's been changed daily since then. Dressing changes are not fun or easy on Ella (or mommy). And every nurse does it differently... I have to remind them that they have to account for her chubby folds in her diaper area (the dressing will pull up as she moves around). We are changing diapers every hour or so, trying to keep the area clean; basically changing her every time we think she's peed/poo'd.
We were going to have a small Christmas in the hospital room but I was still very upset about the PICC line. When it came time I was just too weepy and my family promptly sent me home to sleep for a few hours. I felt very much like the Grinch who stole Christmas... We have decided to reschedule Christmas for once Ella is home.
Ella is scheduled to finish her antibiotics on the 31st. The Infectious Disease doctor is checking to see what time her last dose is that day, it will be either 6am, noon or 6pm. We will have the PICC line removed once the last of the antibiotics are done and go home! ...if the PICC line had been in her arm as planned we would have been able to go home and complete the 10 days of antibiotics at home.
She is getting her 8 bottles a day, rather than 7. We are now using her g-tube. She is taking about 75% of her feeds by mouth but is uninterested in some bottles/finishing some bottles. In order to keep her off TPN we are tubing the volume she is not drinking. I have a fear that using the tube will create an oral aversion, but the nutritionist said today she may be uninterested as an effect from the antibiotics or even just being at the hospital as opposed to home. I sure hope so! Too often I feel like we are trading one problem for another...
I get to sleep in 2 hour increments, in-between feeding, tubing, changing and getting Ella back to sleep (plus the antibiotics/pump alarm going off nightly over the 12am hour). At home, mom & I would split up the night. That's not so easy in the hospital. I will say that I go to bed around 8 or 9pm and we sleep until 6-8am.
Ella's weight gain has slowed while in the hospital, but she's not losing as a pattern. The doctors are watching her weight daily very closely. This is difficult since she has been NPO (not allowed to eat) twice in preparation for her surgeries. It usually takes 2 days after being NPO for a loss to appear on the scale, then she will gain again. As of today, the GI doctor wants to put her back on TPN at night for the remainder of her hospital stay to maximize her calories. I don't agree but I don't have a strong enough argument to fight her. We are increasing her calories in her formula today as well.
My Dad was here over Christmas. He came to see Ella several times and was very helpful around the house and taking Natalie to do some things she needed to get done. Mom did not head home with him as originally planned after Christmas. Hopefully we can send her home in a couple of weeks. Natalie and Ella are becoming good buddies. It's been an unusual situation since we were admitted just a few days after she arrived. She's been rolling with it very well. I still can't wait to get home and get us all settled in to our new normal together.
Natalie has a dinner with her Au Pair group on Saturday night and I have made plans to have dinner in that part of town with a couple of good friends. It's been a long time since I've been so excited about a dinner out! Grandma is going to do a night shift at the hospital with Ella that night... she's been offering but I've not taken her up on it until I came up with this plan (since dinner is about 25 minutes outside of town, it saves on multiple trips to that part of town, or sending Grandma off to an area of Charlotte she doesn't know).
For now, we are planning to Celebrate Christmas on New Years Day! At home. With NO lines. No dressing. No TPN. And Ella should be able to have her first REAL bath (not a sponge bath) that week!