If you've ever read the book, 'Alexander and the Terrible No Good Very Bad Day', then you have a good idea of how parts of my day played out. I hate to complain, because Hope had a good day, but seriously?
Shawn and I went to the hospital together this morning. I went to the IV clinic and he went up to the NICU. I planned to go up and sit with him when I was finished. I first went to see the doctor again and was told that my blood cultures came back and I have a staff infection, on top of the mastitis. They took new cultures today and we'll find out on Saturday if the antibiotics have taken care of the staff infection, since they don't seem to be doing much for the mastitis.
After this, I went over to the IV room and they started my meds. It was hurting almost immediately but I didn't want to be the wimpy girl that whines about her IV. When I actually started to cry, I decided to wave over a nurse. She looked at my arm, gasped, and then told me I'd have to scream through what she was about to do. She then pushed hard against the ball that had formed under my skin and painfully pushed all the fluid back up the IV line. Once she was finished with her torture treatment, she explained that the IV had fallen out of my vein and they had pumped the meds into my tissue instead. They then took out the line, restarted it in my other arm and began the infusion again.
By the time I was finished, Shawn had already headed out for work and I was at the end of my rope and ready to sit in a corner and cry for a few hours. Since the hospital floor is a little 'unclean', I decided to go upstairs and sit with Hope instead. Thankfully, both of my infections are not contagious and it's completely safe for me to be in the NICU with Hope.
Rounds started late today, so I was able to be there for the rounds and get the update on Hope. They have decided that Hope likely does not have an infection in the stomach, but they won't know for sure until the cultures are back tomorrow. They feel that the blood and such were likely from her nose, swallowed after her breathing tube was removed. They have restarted her feeds through the feeding tube, at this point, but she's only receiving 1ml an hour. They have to be very careful when feeding an HLHS baby as their stomachs do not receive a lot of blood, and the blood it does receive is not the good blood in the body, as it will always go to the most important organs first. There is a high risk of infection and they are extremely cautious.
We did have a good step forward with Hope as they weaned her off her last heart medication! She is no longer being assisted by any heart medications directly, even though she's on a lot of medications still! She is still retaining a lot of fluid that they continue to work at getting it off her little body. We're hoping these will come off soon and she'll be a bit less puffy. She slept most of the morning while I was with her so I didn't pick her up and disturb her. We are careful not to move her too often as the incision is still very tender. As a result, we only move her every few hours and don't pass her back and forth at all.
In the afternoon, while I was in the NICU, I realized my "new" IV line must have been failing because I was feeling very uncomfortable. I had to go back down to the outpatient clinic, wait to be seen and have the line pulled. Not sure what will happen tomorrow when I go for my IV infusion, I'm guessing they'll start an IV all over again if I can't convince them to put me on oral med. The IV meds don't seem to be doing anything fantastic for me anyway. I'm trying to get into a lactation doctor but don't have an appointment until Tuesday. The antibiotic I'm currently on gives me terrible headaches that start after the infusion and get worse all day until I feel horrible at night and get to go to sleep. Please pray they listen to my pleas and do something more "user friendly".
I received some more Hope notes today! It's one of the highlights of my day and it's not too late to send one if you haven't yet! I look forward to showing them all to Hope and being able to document the army that prayed for her as she grew, inside the womb and out. My prayer request for Hope is that she would progress in her post surgery healing and get us back to Calgary. My personal request is for complete healing, I feel really attacked and broken right now. I'm losing my mind as far as my health is concerned and need some relief quickly. You don't realize how much you can take, until you keep getting more put on you and you don't fall over by some miracle!