 So to pick up where I left off, she came off of the ECMO machine successfully, finally. And she was starting to do very well, she was starting her feeds back with good responses to that, her saturations ( stats) were starting to look better, she was growing, being able to be awake more and not so sedated all the time. She did of course have some rough days where she was very swollen and puffy because of all the fluid she was receiving and what was not coming off adequately.She had her ups and downs but about a couple weeks after ECMO, they were able to ween down her ventilator ( breathing machine) settings and take her off of all of her medications without trouble with withdrawal she was able to drop all of her meds the epinephrine, the fentanyl ( pain) the versed ( sedation) and many others, well she was doing very well. And they even eventually took the breathing tube out and took the ventilator out of the room, thank God. Well she was doing well after that she was off of it for about 2 days, and that night she started destating meaning her oxygen levels, heart rate blood pressure and so on were dropping, so they gave her a CPAP machine which is just to give pressures not to actually make you breathe, well the type they used she hated, it was a hat with a mask on front and she did not appreciate that at all. Well after while she was so upset that her heart rate was flieng into the 200's and her blood pressure was also very high, her oxygen levels of course going crazy, so they put the breathing tube back in, hoping this would make her happy and calm her down.
Well within the next few days she did nothing but get a lil worse, swell up really bad and have some pretty bad days. Well the stress from this excursion caused her heart to stiffen worse than what it was, and now one of the ventricles is covering the other because it is so swollen, and she is so very very swollen and puffy, she doesnt look like herself at all. They found out all of this info by taking her to the cath lab. Where they did a heart catheterization the look for answers and to put in a broviac IV into her left leg. This IV helps prevent infections. So after her trip to the cath lab on friday, everything seemed to be ok, but she wasnt getting any better, still sedated and puffy from the lab, if not bigger than what she was. Saturday morning before Easter Sunday, they called us to tell us that they were going to switch her to an oscillator breathing machine which is gentler on the lungs and is better overall for babies needing higher pressures which, she did. So by the time we go there, there were a million people in her room, things were going very wrong. As they transitioned her from the ventilator to the oscillator she had problems, her heart rate and blood pressures were dropping and she was not tolerating this move.
The dr told us to go into the room and stand beside her, even if we had to move people out of the way because she was not doing very good and she was afraid she would not make it. I immediatly stood beside her held her hand and started praying, telling her we were not going to do this, this was not the end for her and we needed her.She started calming down and tolerating the oscillator finally and she had a little bit of a rough day afterwords but for the most part she was much much better, she was still here and that was all that mattered at that point.
We had a calm weekend and that following tuesday Dr. Jaggers wanted to speak with us, which is always a little scary. He basically told us that things were not good, almost as bad as they could be, she was back on all of her meds at very high settings, the oscillator was on very high settings and we needed to think about DNR's and living wills, because if she didnt improve within the next week and start to head in a good direction he was worried that her other organs would start to shut down, such as the kidneys at which point we would have to make life altering decisions. Although he was hopeful she would improve. He informed us that there was nothing he could do surgically to help her, and there was nothing more they could do as far as her care to help her anymore than they already were.
He said he was not sure why all of this happened and if he could go back and change things when she came off the ventilator the first time, he would. Basically this was it, it was all on her to get better, there was nothing more anyone could do. She just needs tons of time to let the heart relax because it is very thick, and also very sick. So after our family meeting, we went in to see her and of course tears were streaming down my face, being faced with the possibility of losing your child is the most awful feeling ever. So I just looked at her and cried. and cried. But looking at her for the last few minutes I realized, She is still here. She is still strong, she is here for a reason, because God does not make mistakes, he sent her to me for a reason and he didnt send me a baby to just take her away from me. And countless times when she was on her way out, he gave her the strength to stay. So with that in mind, I felt like I was being selfish and I could not afford to be sad or even think about her not being with us, because she is still here and shes still fighting. The least I can do is stand for her. So I went home to our new apt. in Durham by the way, and immediatly starting praying and fasting I felt as though thats what God led me to do. The Dr had said over the next few days she would tell them which way she was going, better or worse. So for the next 3 days I fasted and prayed. During this time I found myself much closer to God in a more personal way than every before, and he has shown me so much through this experience already and he has shown me for certain where he is in this situation and he continues to show me everyday. So nothing much happened the next couple of days, she was kind of the same. But on the third day... I have tears streaming down my face even as I write this now, on the third day she started to improve, small steps at first, but her oscillator settings started coming down, her med doses started coming down, her nitric oxide settings started coming down, she was waking up more ( of course because of the machine she has to be heavily sedated) but she was letting us know she was there, she was fighting sedation, and they said that was a good thing because that meant that there were no neurological problems.
Her blood pressure started looking better and they even talked about taking her off of the oscillator and putting her back on the ventillator which is a huge step. Although she is still very puffy and needs to lose much more fluid, it is a long process because it is in her tissues, so they have to give her special meds to help her get it out, but she is having wonderful responses to these moves. She is still very puffy, she still doesnt look like herself, they are trieng to keep her blood pressure maintained in a good place, the meds and fluids in and out dont help that, so there always looking for better ways to regulate it. However she is losing some fluid and the nitric oxide is now completely gone. Her x-rays of her lungs are looking good, her kidney function is good, even better than it was last week. She is still sedated and still on the oscillator they are going to wait to move that because she doesnt like sudden changes as we have learned in the past. But even though yes, the dr's say they are still watching her closely to make sure all of her organs are functioning well, and even though yes she looks rough, and she is nowhere near recovered yet She is doing a million times better than last week when we were thinking about DNR's and such things.
She is a fighter and I'm fighting for her, this isnt easy, seeing your child this way is heartbreaking. God is my foundation and my stronghold along with Tommy and my family, and we are getting through this. It has been up and down and we are always on our toes with her, but I know deep down, its all going to work out. God has a plan. He always knows what hes doing, believe that or not. In my trieng to save her life, she has saved mine. So please continue to pray for us all, as we are doing well, but I know it is only because of the constant prayers of friends and family. |
