the rest of the story

Gonna try and recap what's happened in the last few months, the last posts I believe I left off where we were discharged. We spend 4 weeks at home and it was wonderful! We went to our first cardiologist appt 2 weeks in and she did great. Everything looked wonderful. THen 2 weeks later we went back to Kansas City and her oxygen sats were low. They decided to admit her to the hospital since she had not been on oxygen at home. The doctors determined she had a cold. We were admitted on Wednesday September 21. By the following Monday she was off her oxygen and they were going to discharge us but then her potassium level was high. With her being on Captopril that can cause your potassium to be high. SO they kept us to readjust it. By Wednesday her levels looked good but then she was needing more oxygen. We also noticed that she started weezing really bad after she would cry. We kept telling the doctors but they never heard it, just kept saying, "we'll watch her", well by Sunday Oct 9 they had to call in the rapid response team because she gotten so bad they had to rush her down to the PICU and was intubated with a breathing tube. She had a pnuemonia in her lungs and because of respiratory distress it was causing her heart to work harder. By that Tuesday we also discovered she had a bust ear drum :( They kept her intubated for at least a week, keeping her on lots of sedation medicine. By the following Tuesday or Wed, they took out the breathing tube and started working on getting her back off the milirinone, and back on her home heart meds. We finally got to go back to the 4th floor and preparing for home again. She got off oxygen and she was looking good, except she was having withdrawls from her sedation medicine. We would go home on those meds. Well that Sunday I was going to go home and as I as holding her Haley started having seizures. It was very scary! That happend on Sunday October 23. I had to go home because we had the other kids with us up there that weekend. Jeremy stayed and held her and she had another seizure. So now came tests. She had 2 EEGs, a CT scan and also a MRI. THe MRI came back and said she had a stroke. They think she had a blood clot and it traveled to her brain. So she was put on lovanox (blood thinner) and also a seizure medicine. Once that was under control we thought we would again get to go home. I was hoping by Halloween, but it didnt happen because she developed an infection in her pic line in her arm. I was beyond frustrated because it was one thing after another!!!! So they put her on antibiotics for that and determined it was not in the blood stream so by Nov 4 she was ready to go. YEAH, finally got to go home, only for 2 weeks. We had to go back for her heart cath.

November 17

We went up to Kansas City for her heart cath. She had it on a Thursday. We were expecting to go to the PICU that night on a breathing tube. They came out and said she did great through it and she was going to a regular floor. She developed a fever that day. The next day they decided to keep her because of the fever. THey took cultures which came back negative. She also started having HUGE crying fits and we couldnt console her. We figured out that it was withdawl from her sedation meds. (We had just finally weaned off her methadone and had to put her back on it earlier that monday because her withdrawl symptoms were so bad!) The doctors waited to discharge her to make sure they got her dosing right and that the methadone was actually helping. So by the Sunday we were discharged with a new weaning schedule. We had to stay up there in KC because we had appointments Tuesday and Wednesday. We got to come home the day before Thanksgiving! :)

the results:
Her cath showed that her left side had not grown as they were hoping. They also want to tighten her right band. THey ballooned her ASD valved and that was a success. Our doctor is going to discuss with the surgery team the next step, whether they do the tightening, the reconstruction of her arch and the glenn procedure all at once, or break it up. We will find that out at our next dr appt.

Right now we are enjoying our time at home. We had a great Thanksgiving at home. It's so nice being all together, I hate being separted from my kids!!!!!