As I sit here in Emma's room, I truly cannot describe what I am feeling. Sitting right next to her bed is the ECMO machine. Sitting right next to the couch where I am sitting is a Mobile Operating Room. At the end of her bed is a pacemaker machine and "shock machine." All of these (besides the pacemaker) are "just in case of an emergency." That is where we are right now. This is one big waiting game.
So here is what happened today:
The doctors decided that once again, Emma was having to work too hard without the vent. The amount of energy it was taking for her to breathe was more than they were putting in her. She was also experiencing some heart flutters So, they decided to re-intubate her. Once again, the problems began. However, this time it had to with her heart rhythm. Instead of her heart squeezing, it more or less just kind of quivered. This meant that it was not getting blood to her body. Her heart rate also shot way up and they had trouble getting it down. They had to do some chest compressions, hook her up to the pacemaker, and give her many doses of Amiodarone to try to slow it down. This was not working, so they told Scott to call me to the hospital because they had brought in the ECMO machine and thought they were going to have to hook her up to it. ECMO is life support for kids. While it is available in case of emergencies, going on it and coming off of it are very hard. So thankful to our wonderful God above for helping her stabilize and not having to go on ECMO. Emma’s sats and stats have remained good which is encouraging. Her neers could be a little better, but are not alarming right now. The main thing they had problems with labs wise, is bringing back up is her potassium. They are continuing to give her more of it since it has just a direct effect on heart functioning. Also, they are trying to keep her really sedated. The medicines that help that lower other things so it truly is a balancing act.
The doctors just came in and took her pacing wires off to test how she would do. They were happy with what they saw, so they decided to leave in her temporary pacing wires (down her nose and esophagus to behind her heart), leave the machine hooked up, but unplug her from it. So far she is doing well. They are doing this because a few days ago they took out her pacing wires. If her heart rate can’t stay up on its own then Dr. Forbess will have to reopen her chest and put in pacing wires. The temporary one down her nose is only good for about 36 hours.
We appreciate your continued prayers and support. The next 24-48 hours are very critical for Miss Emma. They are watching her like a hawk and have a plan in place if her heart rate were to slow.
Specific Prayer Requests:
1. That Emma is able to maintain an acceptable heart rate on her on.
2. That Emma’s sats, stats, and neers remain good.
3. That Emma’s lung functioning remains good.
4. That the doctors and nurses will be watching her closely and making the decisions necessary to get her back on the road to recovery.
5. That Scott and I will have a peace of mind to deal with this.
6. That all four of us will be able to rest tonight.
God is Good!
The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not grow faint. Isiah 40:28-31
Sarah (Emma’s mommy)