Last Sunday morning I got the call from Gary (the respiratory therapist) about the hospital in Michigan having a bed available for Emma. I was literally dancing in the hallway! We were going there for Emma's life-saving surgery so she could get the 3D splints to open up her airway. He said we would either leave that day or the following morning, so I was able to go home from work and Michael and I got everything packed for our trip!
Originally I was told that I could ride in the medical jet with Emma, but that day Dr. Lipman told me that a safety officer needed that spot, so Michael was able to get me on the flight he had booked. We left on Monday morning and got Gary's phone number so he could give us a few updates. Emma's flight left around 9am and by the time we landed for our connecting flight in North Carolina, they were already in Michigan. The nurse who was with them texted us saying Emma did great and sent a couple of pictures. She said they would let us know when they got to the hospital. When we landed in Detroit around 3pm I did not have any new texts, but Michael had a voicemail from one of the doctors at Mott Children's Hospital asking us to call her back.. I listened while Michael spoke to her and kept saying, "Okay.. okay.. okay.." I wasn't able to hear anything she was telling him as we navigated around the airport to get our luggage and meet the Uber driver.
He was told that everything went very well up until the point that they moved Emma from the cavatron to the bed in the PICU. She passed out, but didn't wake up after 30 seconds like she normally does. They felt her and she did not have a pulse, so they had to give her chest compressions for 9 minutes and a dose of adrenaline. After that they put a new trach in and saw that hers had been fully clogged with secretions. Once she had the new trach in, she was fine, turned pink again and began looking around like normal. The reason they did not originally think the trach was the issue is because Michael and I (and his mom who drove down) had visited Emma that morning in Orlando before our flights and put a clean trach in, so she was only wearing that one for about six hours and usually they are good for a week! But she does have a lot of secretions, especially when she gets moved, and a cross-country plane flight, two ambulance rides, and being pushed around two hospitals is a lot of moving. ;)
When we found our way to Emma's PICU room around 5pm she was asleep, but looked like she was doing well. The nurse (Sara) suggested that we get checked in to the Mott House and then come back. The Mott House is part of the Ronald McDonald House that is on the same floor as the PICU. It has 12 rooms, each with one twin bed and a bathroom with shower. There is a communal living room and kitchen (with several free snacks, soup, chips, etc) as well as two washers and dryers. We were very thankful to be able to stay there for the first five nights. The main house is across the street.
Originally I was told that I could ride in the medical jet with Emma, but that day Dr. Lipman told me that a safety officer needed that spot, so Michael was able to get me on the flight he had booked. We left on Monday morning and got Gary's phone number so he could give us a few updates. Emma's flight left around 9am and by the time we landed for our connecting flight in North Carolina, they were already in Michigan. The nurse who was with them texted us saying Emma did great and sent a couple of pictures. She said they would let us know when they got to the hospital. When we landed in Detroit around 3pm I did not have any new texts, but Michael had a voicemail from one of the doctors at Mott Children's Hospital asking us to call her back.. I listened while Michael spoke to her and kept saying, "Okay.. okay.. okay.." I wasn't able to hear anything she was telling him as we navigated around the airport to get our luggage and meet the Uber driver.
He was told that everything went very well up until the point that they moved Emma from the cavatron to the bed in the PICU. She passed out, but didn't wake up after 30 seconds like she normally does. They felt her and she did not have a pulse, so they had to give her chest compressions for 9 minutes and a dose of adrenaline. After that they put a new trach in and saw that hers had been fully clogged with secretions. Once she had the new trach in, she was fine, turned pink again and began looking around like normal. The reason they did not originally think the trach was the issue is because Michael and I (and his mom who drove down) had visited Emma that morning in Orlando before our flights and put a clean trach in, so she was only wearing that one for about six hours and usually they are good for a week! But she does have a lot of secretions, especially when she gets moved, and a cross-country plane flight, two ambulance rides, and being pushed around two hospitals is a lot of moving. ;)
When we found our way to Emma's PICU room around 5pm she was asleep, but looked like she was doing well. The nurse (Sara) suggested that we get checked in to the Mott House and then come back. The Mott House is part of the Ronald McDonald House that is on the same floor as the PICU. It has 12 rooms, each with one twin bed and a bathroom with shower. There is a communal living room and kitchen (with several free snacks, soup, chips, etc) as well as two washers and dryers. We were very thankful to be able to stay there for the first five nights. The main house is across the street.
By the time we came back from checking in to the Mott House and dropping off our bags to our room, Emma was awake and smiling at us. It was so wonderful to see after her arrest earlier in the day. That evening Michael and I stayed with Emma for a few hours, meeting a handful of nurses, doctors, respiratory therapists, and fellows (residents training for a specific field). We verbally gave them a list of things that Emma likes and doesn't like. The night shift came in at 7pm and a lot of info was passed along. I was pretty emotional the first two days and even began crying when the male nurse didn't want me to change Emma's diaper because of how her stats were. I kept mentioning that a lot of the time she cries because she needs her diaper changed, plus I was worried she would pass out again if she cried too much. The nurse saw my tears and let me change Emma's diaper, then was surprised to see that her stats instantly went up once she was clean.
The next morning at 5:45am (Tuesday) Michael got a call saying that Emma had needed chest compressions again for two minutes, but then she was fine, and did not need a new trach or any life saving medicine like the day before. They scheduled her bronchoscopy and CT scan for that day, put a PICC lins in her arm, and she was rolled down the hall at 3pm. But shortly before that she got a very special visitor: Santa Claus! However, she was on extra medicine for the procedures and was asleep when he came by. Michael was pretty worried while we waited, but he was called two hours later and we met Emma back at her room. She was still asleep for another hour, but squeezed my finger when I slipped it into her hand. A few minutes later she opened her eyes and smiled up at me. Michael rushed to her side and she looked over at him too. Doctor Green talked to us and said that they adjusted her vent settings during the procedure and found that when she was at a PEEP of 18, that is when her airways stayed open as they should. Previously her PEEP had been set at 14, even while in Orlando. PEEP stands for "positive end-expiratory pressure", which is how many millimeters the ventilator keeps the lungs open. Emma has done very well on the higher PEEP and has not passed out all week since Tuesday morning! That is a record now since she had passed out almost every day between October 24th and December 12th. Tuesday was also her six month "birthday". Emma's surgery for the 3D splints is currently scheduled for December 27th.
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