We have definitely been on a roller coaster lately and right now we're on a loop that goes upside down or perhaps one of those corkscrew parts that go around a few times. Also since last Monday I have been making a lot of beautiful scrapbook cards and pages, mostly featuring pictures of Emma. It's been a great way to pass the time in the hospital, but also a good distraction on sadder days.
At the beginning of last week things were going really well and we had begun the process of getting Emma flown back to Winnie Palmer Hospital in Orlando. However, on Thursday when they did another bronchoscopy and CT scan they saw that she had a 3-4mm hole (or rip or tear) in her trachea/ windpipe tissue, which is so thin already, only estimated to be 1mm! Dr. Green told us that the best hope would that the hole would heal on its own, but if she got a really bad infection in her chest called mediastinitis then they might have to open her back up and possibly take out the 3D splint that is sutured around her trachea. The word "unsurvivable" was used and I began crying. The nurse, Sara, even looked like she was getting teary-eyed from the thought of us losing Emma. They thought the hole was possibly caused by the cuff (tiny balloon at the end of the 41mm trach piece) rubbing against the tissue and slowly creating a hole.
Since they decided on Thursday that the hole should be fine to heal on its own -but probably taking about two months- Michael flew home to Florida on Saturday so he could go back to work on Monday. However, on Sunday they saw on an X-ray that Emma was getting more air in her chest (she just had a few tiny air bubbles before that they were not too concerned about). Dr. Green and his team thought they might have to do that big, possibly unsurvivable surgery the next morning (he has never had to take out one of the 3D splints before), so he suggested that Michael fly back up to Michigan because he knew Michael wanted to be at the hospital for that. He got back in the room with us around 11am on Monday morning. Thankfully by then they had come up with a less evasive plan and were able to put in a tiny pericardial drain in her chest (what I refer to as an air tube). I was thrilled with an easy, helpful solution. It didn't sound like a big deal until one of the doctors asked permission to give Emma chest compressions if needed. We said yes, but she did great and did not have any issues during the procedure.
The plan after getting the air tube yesterday was to just wait and see how she did. They would keep checking to see if she was getting more or less air in her chest. Part of the issue is "how do we prevent the air tube suction from bringing in the same amount of air in from her ventilator?" They turned her PEEP (ventilator pressure amount that keeps her lungs open) down from 13 to 12 in hopes that it would help the trachea relax and then scar tissue would eventually fuse the hole. But that could take a while to work, so they are going to keep checking on it every day.
Emma has been on an antibiotic called Merapenum for most of the past four weeks, but over the weekend her while blood cell count was almost double what it should be, meaning her body was working really had to fight off an infection. The normal amount for her to have is 12,000 and she had 23,000! The Merapenum fights a lot of different bacteria, but not everything, so they added Vancomycin back on and that helped a lot because the next day her white blood cell count was back down to 13,600. Yay!!
Last night we went to sleep peacefully, but were woken up at 4:30am when my phone rang. We had been so happy every morning without receiving a phone call in the middle of the night, but this morning I specifically remember saying "Uh oh" before answering. They said the scheduled X-ray showed that her right lung had collapsed. I guess it was not super unexpected since they did tell us that having too much air in the chest can compress the heart and lungs and cause issues, hence putting the air tube in yesterday. They quickly put in a chest tube (inserted on her right side, close to under her armpit) to help keep that lung open. She has always had more problems with the right lung, which is why she does not do well laying on that side. Before Christmas Dr. Green even talked about maybe removing the top portion of the right lung during her 3D splint surgery, but did not end up needing to do that. I wonder if he will want to remove it now?
When Emma gets crabby anytime she is "bothered" either by the nurses needing to draw blood, or give her the blood clot shot, or her own body issues such as having a dirty diaper, or a lot of gas coming out of her G-tube prolapse, being sweaty, etc. she cries and gets High Peak pressures in her ventilator. The doctors want as less pressure as possible (33 or less is preferable- it often gets up to 70 when she cries), so they are going to keep her sedated today and maybe even for the next few days, as well as adding a low dose of paralytics if needed. Keeping her calm puts less pressure on her trachea and lungs, which should help the hole heal faster.
Those are all of the big updates for now. They put an NG tube in her stomach through her nose over the weekend to help release pressure and gastric fluid so her stomach isn't as distended and pushing against her lungs. I think this was a great idea because that means more fluid and gas is slowly coming out of the tube instead of her often "farting" through the G-tube prolapse, which almost always causes her pain. They have continued to slowly wean the medicines when they can- not every day- but usually give her Tylenol and Versed as needed, which she responds really well to.
At the beginning of last week things were going really well and we had begun the process of getting Emma flown back to Winnie Palmer Hospital in Orlando. However, on Thursday when they did another bronchoscopy and CT scan they saw that she had a 3-4mm hole (or rip or tear) in her trachea/ windpipe tissue, which is so thin already, only estimated to be 1mm! Dr. Green told us that the best hope would that the hole would heal on its own, but if she got a really bad infection in her chest called mediastinitis then they might have to open her back up and possibly take out the 3D splint that is sutured around her trachea. The word "unsurvivable" was used and I began crying. The nurse, Sara, even looked like she was getting teary-eyed from the thought of us losing Emma. They thought the hole was possibly caused by the cuff (tiny balloon at the end of the 41mm trach piece) rubbing against the tissue and slowly creating a hole.
Since they decided on Thursday that the hole should be fine to heal on its own -but probably taking about two months- Michael flew home to Florida on Saturday so he could go back to work on Monday. However, on Sunday they saw on an X-ray that Emma was getting more air in her chest (she just had a few tiny air bubbles before that they were not too concerned about). Dr. Green and his team thought they might have to do that big, possibly unsurvivable surgery the next morning (he has never had to take out one of the 3D splints before), so he suggested that Michael fly back up to Michigan because he knew Michael wanted to be at the hospital for that. He got back in the room with us around 11am on Monday morning. Thankfully by then they had come up with a less evasive plan and were able to put in a tiny pericardial drain in her chest (what I refer to as an air tube). I was thrilled with an easy, helpful solution. It didn't sound like a big deal until one of the doctors asked permission to give Emma chest compressions if needed. We said yes, but she did great and did not have any issues during the procedure.
The plan after getting the air tube yesterday was to just wait and see how she did. They would keep checking to see if she was getting more or less air in her chest. Part of the issue is "how do we prevent the air tube suction from bringing in the same amount of air in from her ventilator?" They turned her PEEP (ventilator pressure amount that keeps her lungs open) down from 13 to 12 in hopes that it would help the trachea relax and then scar tissue would eventually fuse the hole. But that could take a while to work, so they are going to keep checking on it every day.
Emma has been on an antibiotic called Merapenum for most of the past four weeks, but over the weekend her while blood cell count was almost double what it should be, meaning her body was working really had to fight off an infection. The normal amount for her to have is 12,000 and she had 23,000! The Merapenum fights a lot of different bacteria, but not everything, so they added Vancomycin back on and that helped a lot because the next day her white blood cell count was back down to 13,600. Yay!!
Last night we went to sleep peacefully, but were woken up at 4:30am when my phone rang. We had been so happy every morning without receiving a phone call in the middle of the night, but this morning I specifically remember saying "Uh oh" before answering. They said the scheduled X-ray showed that her right lung had collapsed. I guess it was not super unexpected since they did tell us that having too much air in the chest can compress the heart and lungs and cause issues, hence putting the air tube in yesterday. They quickly put in a chest tube (inserted on her right side, close to under her armpit) to help keep that lung open. She has always had more problems with the right lung, which is why she does not do well laying on that side. Before Christmas Dr. Green even talked about maybe removing the top portion of the right lung during her 3D splint surgery, but did not end up needing to do that. I wonder if he will want to remove it now?
When Emma gets crabby anytime she is "bothered" either by the nurses needing to draw blood, or give her the blood clot shot, or her own body issues such as having a dirty diaper, or a lot of gas coming out of her G-tube prolapse, being sweaty, etc. she cries and gets High Peak pressures in her ventilator. The doctors want as less pressure as possible (33 or less is preferable- it often gets up to 70 when she cries), so they are going to keep her sedated today and maybe even for the next few days, as well as adding a low dose of paralytics if needed. Keeping her calm puts less pressure on her trachea and lungs, which should help the hole heal faster.
Those are all of the big updates for now. They put an NG tube in her stomach through her nose over the weekend to help release pressure and gastric fluid so her stomach isn't as distended and pushing against her lungs. I think this was a great idea because that means more fluid and gas is slowly coming out of the tube instead of her often "farting" through the G-tube prolapse, which almost always causes her pain. They have continued to slowly wean the medicines when they can- not every day- but usually give her Tylenol and Versed as needed, which she responds really well to.
The roller coaster of medical issues translates into a roller coaster of emotional issues. Luckily somehow Michael and I are usually either both viewing things positively or at least one of us is positive. I'm the positive one right now, while Michael is feeling sad about the constant new issues, and we both agree that the more issues that pop up, the harder it is to stay positive. But I absolutely love when people tell us how strong we are and how great of a marriage we have. (Words of Affirmation is my Love Language.) I cried on Thursday night thinking about going the next two months without Michael in Michigan, so I'm glad to have him back here, even though it is on less than desirable circumstances. We make each other laugh a lot, which I think has been so helpful. One night a couple weeks ago when I was in a "blah" mood, he told me to stand next to Emma's crib with him, he put his arm around me and which we were watching our daughter sleep, he said, "This right here is everything you need. On the count of three we are going to laugh." My fake laugh quickly turned into a real laugh and he asked me if I felt better. I did. I actually read something that said your body doesn't know if you think something is really funny or not, but the act of laughing still releases the same endorphins. Michael and I also thank and compliment each other often, and tell the other our favorite things about their personality on a daily basis. I recently wrote two lists about what makes Michael the best husband. One being more current (52 reasons), and one with a list of why I first fell in love with him (20 reasons). I know the list will keep growing too and I look forward to it!
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