Jessica's hematoma has been continually getting worse so I took her to a doctor last week on Thursday. Actually, we weren't able to get in to see her primary card doctor so we saw a nurse practitioner. She numbed an area on the hematoma and took a sample. She wanted to make sure that Jess didn't have an infection. It seemed to be fine so she referred us to a surgeon. She said that they may want to make a small incision to drain the blood but a surgeon would have to do it.
I called the surgeon's office and they said, "You need to see our vascular surgeon" so we set up the appointment for Monday afternoon. The surgeon took a look at it and kept saying that she needed to have it drained. There was an area that had been a small scratch but Jess had kept picking at it and we were all concerned that it would become infected. Karl and I both felt that it needed to be done and when he said, "Let's do the surgery tomorrow afternoon", we decided that sooner was better than later. Jessica had been keeping me up all night every night since her appointment on Thursday because she was so afraid of what the surgeon might say! So let's just do it and get it over with. Karl called in sick so he could be there with me. Thank goodness! (Gosh I love that man!)
The surgery itself, which was Tues at 1:00pm, went well. We arrived at TMC at about 11:00am. We were so glad to have two very special visitors from our Tu Nidito group. First Amanda came bearing gifts! Jess got a gift card to Target. *woo-hoo!* She was a great distraction for Jess while I went over Jessica's medical history with the nurses. Just as Amanda was leaving, Susan came to stay with us for a while. She is also from Tu Nidito. We were so glad to have them there. Susan was able to stay with us until just after the surgeon came out to talk to us post surgery. She is so sweet to stay with us and just be there.
I spent quite a bit of time talking to the anesthesiologist about Jessica's unique cardiac anatomy. He thanked me several times for explaining it to him so clearly. He then asked me about Jessica's living will and if we wanted to waive it for this procedure. I told him no. He explained that the medication could possibly send her over the edge temporarily but could be reversed. I asked him if that involved compressions and intubation. When he said yes I shook my head and said no. You can't do that to her. So he then asked if he could talk to Jessica about it. I said sure but you have to understand that she is at about the level of a 3rd grader. So he started talking to her and I could tell that she didn't understand anything he was saying. When he was done I asked her if she wanted the tube in her throat. She adamantly said NO! "And if you do, you'll be in big trouble! And my daddy is a police officer" hehe... He then told Jess that there would be NO tube and Jess was satisfied. The doctor turned to me and I told him that I would be in big trouble if Jess were to wake up intubated "or brain dead" the doctor finished my sentence. I told him that Jessica's heart can't be repaired, her health is deteriorating and now she is experiencing bowel ischemia among other things.... there's no way she would want to survive another stroke or even wake up intubated. He seemed to really understand. Oh yeah, what was interesting is that when he was trying to talk to Jess, he started off by saying that it's very rare for him to work with people with the same type of heart problems as her because none have survived this long without being repaired. He knew she had pulmonary atresia but didn't know to what extent... when I told him that there was never a connection between her pulmonary artery and right ventricle of her heart and that there still isn't one, he was very surprised. She is my miracle for sure! I told Jessica that she is unique and special. That got me a smile.
We had to keep reminding everyone that Jessica needed a huge dose of antibiotics before the surgery and it was actually the anesthesiologist who ordered it and got it going. He was also the one to start the IV since everyone else apparently had other things to do. *gah!* I love that doctor because he took the time to talk to me about Jessica's unique cardiac anatomy and what her oxygen sats are. He really listened and cared. I don't remember his name but he is German. He had an accent but I could understand him just fine.
The surgery went well. The surgeon told us that he was able to extract a lot of blood from the hematoma. The problem is that the surgeon didn't mention to us that Jessica would have an open wound that would have to be cleaned and packed every day! He said one thing and then did another. He told us what kind of wound she had AFTER the surgery. Karl and I started asking him questions and he seemed flustered and said, "We went over this yesterday". Excuse me... we aren't stupid. We would know if he mentioned, "open wound" and he didn't say anything about it during our visit on Monday. Every time we tried to ask him questions he would say, "you are getting ahead of yourself" and kept saying, "She will be fine". So after the operation the surgeon said, "I'll have to check my schedule but I want you to come into my office on Thursday so that I can look at it and change it. I don't trust anyone but myself with this. Then we'll set up wound care" So we were sent home with the idea that his office was going to call us and set up an appointment for Thursday.
Meanwhile, Jessica has been having a lot of pain. We finally got her pain level down and she went to sleep at about 2:15am - and that's when I went to bed. At 4:00am she got up saying that her leg was really hurting and something about her bruise... I thought she had opened up the bandage and panicked. Karl and I both got up with her and the blood had soaked through the bandage. She was crying because she thought I had accused her of doing something she hadn't done. We got her settled down and Karl sent me back to bed. Karl was able to get a hold of the surgeon (at about 6:00am is when he called us back). The surgeon said, "bring her into my office so I can look at it and change the bandage. I will be there between 9 - noon." Jessica had finally gone back to sleep so Karl let her sleep (and slept a little himself) and then got her up and took her in at 10:00am. Nobody at the office knew Jessica was coming in and get this: the surgeon called in sick! What the....??? He had told Karl at 6:00am to go into the office and then turned around and called in sick - and didn't tell anyone that Jessica was coming in?!
The assistant changed the bandage and cleaned out the wound and then repacked it. By the way, after surgery, the doctor had said that the incision was only about "this" big - using his fingers to indicate about an inch long incision. Well, Karl says that the incision is about 3 inches long and that you can see all the way into the bone! Poor Jessica had no idea that it was open and she was shocked at seeing her own bone and tendons, etc. She said that is really stung when they cleaned it and it hurt really badly when they packed it. The assistant said, "I'm surprised that TMC didn't send you home with wound care. They usually do." Well, the doctor didn't set it up so how could the hospital do it? Also, the office said that the surgeon never comes into the office on Thursday and they didn't have an appointment set up to see him then either. They almost acted like we were crazy and didn't know what we were talking about. I'm just blown away at how nonchalant this doctor has been with us. Poor Jessica has been traumatized and keeps saying how her leg didn't hurt this bad before surgery. We are trying to keep her down and her leg up. She has soaked through her bandage twice already tonight. (Weds night) They gave Karl a package of gauze to put on top of their dressing so we have been doing that. We have been trying to get wound care set up through the nursing agency. If they don't have it set up then we'll have to take her back to the surgeon's office and have the assistant change it again. Jessica wants me to learn how to do it. I've always been so queasy about these kinds of things. I've had to take care of her wounds before but nothing like this. I've had to make myself NOT throw up or pass out while caring for her post heart surgery or cath and all the while praying that God gives me the stomach to do it. I have been so sleep deprived lately and emotional thinking about how Jessica got the hematoma in the first place, knowing that she doesn't have a very good quality of life in the first place and now for this to happen to her. I've been thinking about Marcus and how sick he is becoming and now I have to take care of this very nauseating wound... and hearing my daughter crying because she is in pain and has been traumatized.... I've been a wreck. Thank goodness Karl was able to take Jess in today and I was able to get some sleep. I'm feeling a bit better tonight and even dealt with her bandages.
If only we knew all the details we probably would have insisted on having a surgeon who goes to UMC and we could have prepared Jessica and ourselves for post-op care. We also would have had home wound care set up.
Tomorrow will be better. It just has to be. Good night.