August 21 - 22, 2009
Sorry that we have not blogged in the past 36 or so hours, things have been a bit stressful. Let me start out by saying, for those of you with children, please cherish every single second, minute, hour, you have with them. Any moment could be your last.
Our Friday began very early. Justin and I received a call at the Ronald MacDonald House about 2 am from the charge nurse Taylor. We had only been asleep less than a hour (I was having a lot of trouble sleeping and we got back to the house late) when we got the call. We were told that Jenna was having a peaceful night, and then suddenly her heartrate jumped to 180 and when the nurse went in to check on her, she noticed something was not right about her Bipap mask. She realized quickly that it was full of blood and there was blood on the sheets and when she turned on the light, Jenna was white as a ghost. Her oxygen level dipped to 17 and they began suctioning her to remove the blood from her airway. They were attempting to to determine if she needed to be re-intubated or not, since her oxygen level was having trouble coming up. When we arrived, her oxygen was in the 70's, and the bleeding had slowed, and they were attempting to stabilize her so that they could place the bipap back on. She received a lot of blood in this time (250ml), since she lost so much (over 150 ml). Her blood level dipped down to 7, and normal is 11-13. Within the hour, she was much better and she was back on the bipap mask, and her oxygen levels were in the 90's and heartrate was around 150-160. Shewww...what a scare. Hearing that your child is vomiting blood is very scary. So we did not want to leave, because of course by the time she was settled it was around 5am. So took a break to call family and get something to eat.
We arrived back up stairs around 6a, since we knew that the attending doctor would be coming in soon. When she arrived, we discussed the situation and she felt that since the occurance of her bleeding was once, then she did not want to risk doing a scope of her esophagus, belly and intestines. She would have to be intubated for this, and they we trying to avoid this with Jenna because of her sedation issues, while on the vent. She felt that with the situation, most likely she might have had maybe a small laceration or ulcer in her stomach. They would be speaking with GI (gastrointestinal) about what should be done regarding the situation. So we would know the step sometime after rounds. She also stated that her chest xray had improved and she felt that the infection that she had was more blood involved and not so much pneumonia since her xray had cleared up so quickly. This was good to hear. But she would remain on her antibiotic regimen anyway since she does have an infection, and most likely we will be doing the surgery more to the middle of the week to fix her diaphragm. We rested with Jenna for the next little while and shortly before 8am, I was changing Jenna's diaper and asked her if she would like to move up in the bed and be on her side. She shook her head yes, so I obliged. When I did this, she coughed, which is good since she has "junk" in her lungs. The nurse came in just a few minutes later and question if she always had a residue on her face around her mask. I leaned over and looked at Jenna and noticed that she had blood in her mask and on her bed again, very scary. So, the doctors immediately came in (they were on the floor anyway because they do a teaching meeting every Friday morning). So one attending, Dr. Lorts and then Dr. Marino came in to assess her, in the mean time her sats started to drop and Dr. Dent came in and stated that since she was bleeding again, the best option for her would be to intubated and call GI to see if they could do an Endoscopy to look at her inside to where the bleeding was coming from. So, we stepped out while this happening in to a side conferance room to wait. Shortly, we spoke with Dr. Marino who stated that she was intubated and GI was called and they were attempting to speak with the OR about when the test could be performed, because it has to be done in a suite under sedation. So, we were waiting to hear when this occurred. Shortly later, Nurse Joy came in and stated that they were doing rounds on Jenna, so we came out and listened to what the plan for her was. We spoke to GI in this time frame, Dr. Putmann about what the test like (a scope with a camera goes down her throat down to her stomach and to intestines to see where the bleeding is coming from). So, in this time, the nurse noticed Jenna was dipping her oxygen level again, and went to check, and she was vomiting blood again. So since she was going to be going for the test, they wanted to put another line in, due to her subclavian no longer being in. So they chose to put in a femoral line (in her left groin area) for additional access, since she was having to get more blood. So, we stepped out during the procedure to the conferance room again. A chaplain came by, but we told him that we were fine, we appreciated him stopping but he was not needed. During the rounds previously, Dr. E came in special to speak with Justin and I about Jenna. He said he mainly just wanted to come in and give us a hug, he was sorry about what was happening and said "this sucks". He was worried about Jenna and wanted to make sure that we were ok as well, if family was coming if we needed anything. We told him that family was on their way, and we were fine. This meant a lot to Justin and I because, to be quite honest, (no offense to doctors) but typically you do not become that close in relationship status -and this made us gain so much more respect for him. So we sat in the room, waiting until we could see her again, meanwhile upset because we just feel like our babygirl cannot catch a break. We did not understand why this was happening.
Now, I do not want to alarm anyone on what the next portion of her blog states. It is not meant to graphic, we just feel like everyone would like to know what happened. So, Janie (Jenna's nurse practitioner for her cardiologist) came in to see us. Immediately, I knew that she was upset. She told us that Jenna was not doing well and she was sorry. Of course, I knew this was not good. My mind began to think the worst, my emotions and Justin's were a mess, we just knew that this was really really bad. So, she asked if we wanted to be with her. But, we first said no, I wanted her to check on her again. She came back shortly and said she was the same, no change. She was bleeding again, and they could not get it to stop. So, I felt at that point, I wanted to be as close to her as possible, at least if I could see her. I will not detail the next little bit. I will just say that, she coded. She had no pulse, heartrate, blood pressure, nothing for about 10 minutes she was "not with us". They did all they could, was able to get the bleeding to stop and gave her lots of medicines and finally everything came back. Her vitals were back up, oxygen up, it was amazing. I really felt like God had his arms wrapped around my little girl and knew it was not her time. So, once she was settled somewhat they did the Bronchoscopy at the bedside since she was not stable. This took about 2 or so hours, since she had so many clots of blood to get through. They eventually were able to get to the source of bleeding which was right at the beginning of her stomach and to the bottom. Turns out under a clot that was attached to the lining, there were small areas of which blood was oozing. Since she was on Lovenox it made it worse with the bleeding. They were able to get the bleeding completly stopped by injecting steroids and cauterizing (burning) the areas to seal them. They said that it should be cleared with in 5 days and undetectable on test in 2 months. So, they could not gurantee that it would not happen again. They feel that it was caused from stress, the narcotics which she has been on, the ng tube she has hooked up to suction rubbing her lining in the stomach. The combination caused this and when blood goes into the stomach it clots, which is where that came from. So now she is on a big antiacid regiman of Protonix to keep her stomach "happy", Octreotide which helps with upper GI bleeds, and a coating medicine which lines the stomach and seals where the irritated areas are. So, we finally were able to see her in the afternoon, they kept her cool to 95 degrees, since they wanted to make sure that blood was able to get to her brain and her not have a chance of damage. So, this stayed on for almost 24 hours. Before we left, she opened her eyes, which was great. This was a good sign there was no damage. The doctors were thrilled. So, we let her rest for the rest of the evening, family came in and we mingled with them for the evening.
We came in today, and she had a wonderful night. She did not have any issues. Since she is on the ventilator again, she is back on her sedation regiman, Morphine and Ativan drips. She also is able to receive medicines in between as needed. She is also still on her Methadone and Ativan regiman for withdrawl. They hope keeping her on this, it will help with when she comes off of the narcotics this time. We spoke to the doctors in rounds today. They stated that since she is back on her regiman and needing to be on it for a few days, they feel that she will be on her withdrawl medicines for a couple of months. Great. In addition, they wanted to do a CT scan to make sure that her brain function was ok since she had coded and no oxygen went to her brain for 10 minutes. This test came back fine, no bleeding or stroke. YEAH! Good news. They said that the cultures sent yesterday again came up negative for infection, and they feel that the infection was in her blood and thankfully blood infection do not last long. They feel that if she moves along in the next couple of days, then they would like to do her plycation surgery on Tuesday or Wednesday. And they are not going to be extubating her prior, they will wait until after. There is a possibility if Dr. Inge cannot do the surgery, no time, then Dr. E. said that he will do the traditional way-thoracotomy. He does not want to keep Jenna on the ventilator anyway longer than he has to and they want the surgery done asap. They had originally not wanted to take the route, because she would have to be intubated and back on the sedation medicine, but she already is. So we will see when this will happen. Currently, she is off her EPinephrine and Nitroprusside drips for her blood pressure and stopped two of her antibiotics, since she is on a high dose of Vancomyocin. The plan is to rest and not have a lot of stimulation over the next few days, so we have decided to let her rest and not be in the room too long to bother her. She has had a great day, no major issues. She has woken a few times, and wanted a balloon that came in a bouqet for her today and then she falls back asleep. This evening, the nurse did do the flush down her tube and drew back to make sure there is no blood (this was being done every 8 hours) but this time blood tinged saline came back, so they are doing it every 2 hours again. They have checked her blood levels and everything is good. Her potassium is back up too, it was less than 2 and today is 3.4-within limits. Also dispite all that happened, all of her levels-kidney, liver, everything-she is within limits! That is my little fighter!
So, again sorry for not posting before now. Justin and I are just trying to get our emotions back to normal. It has been quite a rollercoaster and do not want to do it again. We never want to be in that situation ever again, and we just prayed to GOD that he would take care of her and she was going to be ok. I do not think I have ever cried as much as I did, nor Justin. All I could think about was her playing and laughing and running around the house. It was not supposed to happen and it was not her time. We know that GOD was with her and us in those few moments and are so thankful for it.
We would like to thank everyone for all the prayers, love, support, everything. It means the world to us! It has been very helpful in the past day or so. Our journey here is far from over, but hope that it starts moving in the right direction soon. We will keep you posted and thank everyone again.
Love, Jenny, Justin and Jenna