As hard as this is going to be to type, please bare with me. I may make some mistakes in spelling or forgetting something. But I will do my best.
Monday December 17, 2012 we arrived with my 5 month old beautiful girl at Primary Children's in Salt Lake City, Utah at 9:00am.
We did a lot of sitting around for the first little while, but was finally called back to check Ella's weight and taken to a room. In this room they checked her temp, length and even got to put on some baby hospital gown. The nurse gave Ella some medication that was to keep her blood pressure up and her heart rate stable for surgery. From this room we were taken over to another larger room where we proceeded to wait another hour or so. Finally a anesthesiologist came in and talked to us about what he was going to do during the surgery. That Ella would be put to sleep by oxygen and medication through the IV. He than asked if the nurses told us about a mistake, that they had given Ella someone elses medication for surgery. Matt and I both looked at each other with a blank look " We both said "no what do you mean". The doctor said that there was another Ella in for surgery and that the nurses messed up and forgot to look at the name tags and gave our Ella her medication. As hard as it was to stay calm, we both just asked if it was going to harm Ella in anyway. The doctor said he is not worried and that she should be just fine. Matt and I were pretty upset, but at this point our concern was directed towards Ella.
Next the Dr. Martin, Ella's cardiologist came and walked us down to the 1st floor to the Cath Lab. We could see where Ella was going to be operated on and we both gave her a big kiss and hug. A nurse proceeded to take Ella as we were taken out the white doors to another room to talk to the doctor.
She said she was going to do everything she could do so that we didnt end up having to have open heart surgery. We signed some consent forms, and was given a pager (just like one I had in high school) and was told the surgery would last 2 hours.
As hard as things were going, we decided that we would go eat some lunch. While eating lunch, I was trying my best to hold back the tears. Matt started to tease me, because thats how he gets his mind off things. Well this didnt help me it made me start crying in public where everyone was eating lunch. Yes, I felt like a little kid that was told she couldnt have a cookie if she didnt eat all her lunch. Than in the middle of it a choir started singing soft music out the door of the cafeteria. I finally stopped crying and than Matt says I bet that choir isnt helping you much are they? I couldnt even look at Matt, I just started crying again. Matt decided that it was finally time to stop picking on me that no matter what he did to make me smile, I was going to shed tears instead. Matt and I decided to head up to the 3rd floor where they can charge your cell phone batteries back up for you while you wait. So as i was sitting there I was able to meet another mother with a child that has needs. It really helped me out a lot to have another parent know what I have and am going through. Her daughter is 7 months and has been through so much. They are hoping they do not have to spend Christmas in the hospital. So I am keeping my prayers open for this family and that their daughter gets strong, able to get home to see what Santa brought her. I am very happy that I met this mother and plan on staying in contact with her through out both our daughters lives. Its amazing how when you are so down and hurting so bad, that someone comes along and knows exactly how you feel. Thank you so much Patty for allowing me to be your friend and be able to share experiences with you. My day felt a lot better being able to talk to you.
Well 2 hours had passed and this little pager went off. So we went back to the first floor to the Cath Lab and of course we were not able to see Ella. But we were able to go into a room with the doctor to find out the outcome of the surgery. Going back to Friday before surgery, Ella had an echo scan and that is where we decided to get the surgery done quicker. Now back to surgery day talking to the doctor, this will make sense in a minute. Doctor started to show us pictures of the surgery and what the arteries looked like before they were closed up and after the device closed it. It was amazing how much blood was taken into the correct place instead of it flowing into her lungs. The doctor was amazed that she was able to get the Cath in her and that she was able to get the artery closed without open heart surgery. Doctor said they would do a Xray later that night to make sure that the device stayed in place. Matt and i was directed to the waiting area on the 2nd floor to wait for Ella to go into the recovery room. We waited only about 15 minutes and our names were called. They would only let one parent go back with Ella, so I went back with her. She was asleep the whole time, except a few times that she got upset in her sleep. Back when Ella had her shunt Ella was nothing like this. She was alert and knew I was there. I was a little concerned as to why she was so out, but I figured maybe the medications worked on her a little different this time. Ella was finally stable to go to her room that we would spend the night in. Ella never woke up fully till about 4pm. She would open her eyes but would it almost seemed like she would hallucinate. She had me pretty scared, so I called the nurse. The nurse didnt seem to think that it was a problem, but that she was going to call the doctors to make sure that it was normal. Come to find out from the anesthesiologist (yet again meds gave to her wrong) He gave her 2 sets of morphine. Doing this could make it last 6 hours in her body and she could keep having hallucinations. As he was talking to me, he was telling me how she was looking around like crazy and than started screaming, kicking her legs throwing a fit. So he decided that he better give her a second dose of Morphine. I told him that I am pretty sure all she needed was her mom, that she was most likely looking for me. She doesnt like a lot of different people holding her and to be in a room full of strangers, I am pretty sure she was confused. So because this doctor didnt think before he gave my 5 month old another dose, he did it anyway. Ella ended up being out of it for pretty much the whole night.
Her oxygen levels would get really low 70;s and the only way they would bounce back up is if we used oxygen. The nurse decided about 11pm that she would take the oxygen away and just have her oxygen level go low. So even with me upset and voicing my opinion and that I would have liked to talk to a on call doctor. I got told no that I couldn't and to deal with it. I dealt with it as much as a mother could, Ella and I got to sleep around 12pm. At about 5:30am Ella woke up out of her sleep and started coughing/choking. I sat her up, put her arm in the air and patted her back. While the nurse sat there and starred instead of helping. Thankfully Ella calmed down and went back to sleep. By morning her oxygen level was stabled, but she had a small cough. The doctor came to see us and wanted an X-Ray done before we left.. So we went down and had it done, by the time we came back up we were able to get discharged. Dr Martin said that Ella's heart condition was worse than what it showed on the Echo Scan on Friday. That she is very glad we didnt wait any longer to have this surgery done. Her artery was 2mm open, when it should have shut on its own after 24 hours of being born. Ella is now at home with our family, very sleepy and exhausted from everything she had to go through. But I call her my Angel Miracle. She has been through so much in such a short period. I am praying that we will be able to get back on track and start working with her on doing things. Dr Martin said she suspects that Ella will get back on track with after a while with children her age. It will be great to see Ella that eats normal, and doesnt get exhausted as fast. Hopefully she can make it through a full physical therapy appointment after this.
We finally got home and found that we had a box full of about 100 or so diapers for Ella, baby lotion, box of wipes and a $25.00 gift certificate to help us with food, gas and such for her surgery stay.
Thank you to the Angel's that have watched over our family and given us these gifts. They will help us more than you know!
Thank you all for the prayers, love and support again. I truly believe that all the prayers have helped and guided our miracle Angel to getting better. Now for the next few days, we will stay indoors away from the cold and keep recovering. Thank you all again! Love you all.
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