It's never easy.....

Hey everyone,

Sorry I did not get a chance to post yesterday...things did not exactly go as planned. We were all set to go home, discharge papers were signed, iv out, stickies out and Jenna had even been running the halls...when she decided that she was tired and did not want to leave. I attempted to change her, but she was very upset and refused, she just wanted to lay in the bed and have me lay next to her. So, I oblidged of course. Shortly thereafter she woke up and I attempted to dress her again and she refused. I noticed she felt clammy and warm, but thought it was just where she had been snuggled with me. She then wanted daddy to lay with her, so I moved across the room and sat in the chair. I noticed that while she laid there she was working harder breathing and that I could see her rib cage move in and out very rapidly. So I counted and noted that her respirations were 68. So I decided to go get the nurse, because I was a bit concerned. So they came in and counted as well, listened to her and noticed that she had drastically changed in the last hour. They proceeded to hook her back up to the monitors and noted her heartrate was up to the 140s and her pulse ox level was in the 60s(her norm is around 90). Within a couple minutes she spiraled out of control and at one point her pulse level was 29, breathing per minute was 75. We were very concerned as they were also, so phone calls were made, chest xray was done and we were moved over to, you guessed it-CICU, our home away from home. Somehow I knew she just had to see everyone before we left. So we got settled in over there, the x-ray had indicated possible pulmonary edema resulting from new blood flow with the opening of the arteries. So treatment was an extra dose of Lasix, watch her and see how things went, she was placed on 4 liters of hi flow oxygen. She had stabilized, so they wanted to monitor her through the night. Later in the evening she had another episode and dipped down to the 50s for her sats, heart rate went and her breathing was increased. They had attempted to drop her through the afternoon on her levels and she had managed to drop to 3-when attempted to 2, she did not tolerate it. She was not able to recover and had been moved up to 6 to stabilize. So they decided to keep her there for the night and if tolerated, they would wean her through the night.

When we arrived here this morning, she was not in good spirits. Of course if I could not eat I would be a bit upset too-due to the hi flow oxygen it is too dangerous for her to eat or drink. However, she spirited up somewhat and so they allowed her to have some ice chips. At rounds, they let us know that her chest xray had worsened from yesterday, indicating that her left lower lung had a mucous filled area in it. They were not 100% this was the issue, because her lower area is hard to see on x-ray, but they could still see her diaphragm so they did not feel it was fluid. This area also has trouble because her blood flow is not very good here, so if it becomes congested, then it makes it difficult for her to breathe. So they decided to start Lasix twice daily, increase breathing treatments and vest therapy, and getting her out of bed. They hoped that by doing these things, it would help her to cough out everything. Throughout the day, she has gotten worse, by late this afternoon she was up to 8 liters of hi flow oxygen, with oxygen levels in the 70s. They re xrayed her and noticed that from this morning it had gotten even worse and noted that her lung had collapsed. They did an ultrasound to look for fluid, which was not evident, just the mucous pockets from what they could tell. They were very concerned because she had worsened quite a bit, so they increased her vest treatments and decided to do some cough assisting machines to help her break up the mucous and cough it up. They ordered these for every hour. So we started this therapy and after doing some agressive treatments, she has improved quite a bit. Hopefully we are on a good path....if she does not respond well and continue to do so, the next step for her would be to do a bi-pap mask with pressure to help expand her lung and breathe better. If she would not tolerate that she would need to possibly be intubated and scoped to help clear out some junk. Hopefully we are not going to go in that direction. We will see. Hopefully tonight will go well and another xray will be taken in the am to see if she improves.

So, we are settling her in for the night. She is exhausted from all of the hub bub from yesterday and today, hopefully she will start to improve so we can go home. I just want her to feel better. I am so sad that she has been in the hospital for her birthday...I can't believe it has been 5 years since her birth. She has grown up so much and has taught Justin and I so many things in life-that anything can be handled, she is such a tough, sweet, happy and loving little girl. Our life may be hard, but I would not change it for the world. Please continue to pray for her-I know a lot of prayer lines have started for her, let's keep them going. Love you all!!!