Sunday August 9, 2009
Today was supposed to be very calm, Justin and I were going to hang posters in Jenna's room and visit with family. I guess Jenna had other plans on the agenda. We arrived at about 8:20 this am and they had began rounds on her. The nurse quickly let us know that Jenna had recently had an episode where her oxygen plumated. She had been suctioned and she began to cough and then her oxygen shot down to 30. They were prepared with the crash cart, but they were able to get her levels back to normal. So, we listened to rounds. They stated that she had become more positive with her average of in and out fluids for the day and they would like her negative. So, they began her on a diuretic drip continuously and still keep her on diurel too. Her xray looks ok right now, so they are holding on the pigtail insertion. Her temperature has come up, which is good. Over night they had increased her Nitric to 20 due to her breathing issues. While still rounding, Jenna began to worsen. Suddenly her heartrate jumped to 170, her blood pressures went up and her oxygen started to drop. They began to make adjustments to her drips and medicines, increased her oxygen but she was still running around the 50's. She was not improving. Suddenly her heartrate dropped to under 100 and her blood pressure dropped really low. At this point, she "coded". They began pushing lots of medicines and placed her on the back board in case her heart stopped. At this point, Justin and I walked out of the unit, because it was too much too much to watch. The cardiologist came into the hall to help us understand the situation better. He explained that they are not sure if the issue is just lung related or also her heart. They are wondering if it is possible that she may have developed a clot in the stents placed on Thursday, so they have began her on a heavy dose of Heparin, a blood thinner. Also, he stated that her chest xray showed that her right lung is not collapsed, but is unsure if bloodflow is getting to the appropriate areas in order for her to breathe. The nurse came out and told us that they were able to get her heartrate and blood pressure back up and she beginning to stablize. They decided to do another bronchoscopy to see if the mucous in her lungs was worsening, but it showed the same as last week. So, this was not a factor in the area. They did remove a large mucous clot from her vent tube, which could have been part of her issue. Since Jenna has limited function of her lungs, a small close off such as this clot can harm her a lot. Also, they pulled 100 cc's of food from her belly because she is not digesting her food. So they have stopped feeds at this point. So, during the time they were trying to settle her, we waited in another room with family. The staff had called on Pastoral Care and we met with Chaplain Sue. She was really nice and helped us pull through a very difficult time. Once everything was settled, she asked if we would like to pray, which we said. The staff allowed us and the family to go to Jenna's bedside and pray with her. This was such a moment, we know that angels watch over her everyday, but especially today. We are not ready for Jenna to leave us and we want to take her home and play lots really soon. The prayer just helped us connect and support one another so much. Justin and I are so scared and nervous at what will happen now, but are trying to be there for each other. This is our baby girl, and we know that today in that room God had his arms wrapped around her really tight. All the prayers that have been given for her were especially helpful today.
Later, we spoke with Jenna's attending doctor and surgeon. Dr. E stated that he is concerned with how Jenna is at this point. He feels that she is just "skimming the tops of trees" per se, just right on the edge. He is not sure if she will be good or bad and feels that she is not stable. He feels that he will probably have to cath her sooner than the 12 weeks originally mentioned, but hopes that he can get her stable and off the ventilator and home before having to do so. He is concerned that laying there with the vent tube that she is going to develop pneumonia and this is not good for her since her lung function is limited. Her attending doctor said that he has even consulted with his colleagues on Jenna's situation for guidance because he does not see her condition very often. He feels that she is a day to day situation and is touch and go. He does not know what will happen, because he is what he calls "a moving target". They adjust her drips and medicines to what they should be and then Jenna does not balance, so then they adjust again and then she changes. They are having a difficult time regulated her. So, this has been some day. She is sleeping right now and the staff and doctors would like her to not receive much stimulation today, just rest. So we are leaving her alone, but periodically checking on her. Hopefully there will be no more drama.
We ask that everyone continue all the prayers for us and Jenna. Thank you so much for all the love and support. This day was very difficult and I hope that I do not have to endure this again anytime soon. We will keep everyone posted on her status.