At the beginning of February, Emma had a Pulmonology appointment to see if the percussions we had been doing in January to try to open up her left lung had worked. Percussions consist of using a soft plastic cup that we got from the doctor (sometimes I used my hand because she liked to take the cup from me and throw it across the room) and patting it on the left side of her back for five to ten minutes during her treatments in the morning and night, and then suctioning her trach for any extra secretions it might bring up. I did not feel like it had not helped because there were almost never any secretions when I suctioned her. We soon learned the reason for that.
That Pulmonology appointment was on a Friday and on our drive home we were already getting phone calls for the Bronchoscopy procedure (using a thin, lighted tube that is moved down the trachea and airways to look into the lungs) being scheduled for the following Tuesday, February 8th. Emma had to get Covid tested before the procedure and we were pleasantly surprised that a third party company who worked with the hospital was able to come to our apartment on Saturday morning and do it. There was a bit of confusion and when the woman asked, "Do you want to do it or do you want me to do it?" I told her I wanted her to do it, she almost put the swab in my nose! I quickly leaned back and covered my face. "Nope! It's for my daughter! That's why I want you to do it. I'll need to hold her arms and head."
She followed me into Emma's bedroom and when she saw the crib, said in kind of a sad voice, "Oh, it's a baby." Emma was really squirmy, but the woman didn't need to stick the swab too far in to get the sample, which was good. Emma rubbed her nose several times after and then went back to sleep.
On Tuesday, February 8th, we got to the hospital by 9am for check in, got settled in a "quarantine room" because of her medical equipment, got the usual tests done (blood pressure, saturations, heart rate, etc) and then we met Dr. Smithers and a female doctor who was assisting him (I forgot her name, she was Asian) around 10am. He explained what they would be doing, which wasn't anything new to us, because Emma had lots of bronchs done in Michigan after her 3D printed airway surgery there.
Emma was taken back for the bronch just after 10:30am. While we waited, Dr. Smithers' assistant, Carrie, came and talked to us for a while. That was a really heavy conversation, as she told us about every problem that there could be, rather than waiting to find out what they found in her airway and then coming up with possible solutions. I took a bunch of notes on my phone while she was talking, but don't have them anymore since everything she told us that day later didn't end up applying to Emma.
Dr. Smithers talked to us after the procedure. That is when we found out that Emma basically only has one working lung. He said when he looked in her airway, he didn't even see the carina (the ridge at the base of the trachea that divides the left and right bronchi which lead to the lungs). So basically the whole left entry to the lung is closed off! We don't know how that happened, but Dr. Smithers wanted to investigate further and see if he could open up the left lung. He said he would set up another procedure within the next week or two, but that Emma would have to stay in the PACU overnight for that one.
Dr. Smithers also asked about Emma's surgery in Michigan and I told him that Dr. Glen Green was the otolaryngologist in charge of the surgery. I gave him Dr. Green's assistant's email and he quickly got in contact with them! We also found out that Dr. Smithers used to work at Boston's Children's Hospital, which was the other hospital our doctors were looking at sending Emma to when she was six months old if we didn't go to Michigan! We could have met him there. Interesting.
We got to see Emma again around 1pm and I was happy that she was awake and not too groggy from the anesthesia. (Michael is always super worried about her going under anesthesia and not waking up.) A nurse told us that they thought she was uncomfortable because she kept crying and was pulling at her trach. Michael immediately put her blue trach balloon piece in her mouth for her. "She was probably pulling at this. She uses this as a pacifier to comfort herself."
Shortly after, we went with Emma and a couple nurses down to Radiology for a CT scan. Emma wasn't scared about that at all and even fell asleep during it.
We assured the nurses that we didn't live too far away (about 30 minutes), that we had an oxygen tank in the car, which we would leave on one liter for the rest of the day, and that we would call or come back if there were any issues. We were ready to get out of there, and by 3pm we were in the car!! Emma got a Certificate of Bravery before we left. So sweet! I taped it up in her bedroom when we got home.
Emma was doing a lot better than we expected when we got home. We thought she would be napping a lot or needing more oxygen than usual, but she was happy and playing with her toys like she hadn't just spent most of the day in the hospital!
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The next bronchoscopy (with balloon dilation, in attempt to inflate the left lung) was scheduled quickly and we were back in the hospital just three days later. On Friday, February 11th, we had to arrive at 6:30am because Emma had to get another Covid screening, and there wasn't enough time for the third party company to come out to our apartment again.
Oh, I should mention that we didn't get much sleep the night before because our super expensive "luxury" apartment complex, under new management (the original people were amazing!!), thought it was totally fine to paint the fire riser room, which is right next to Emma's room, without sending an email about it, even though I have told them several times that Emma has medical issues, so the whole day our apartment smelled like spray paint and chemicals, and when Michael got home he was worried there was a gas leak, and of course nobody answers the after hours number (until almost midnight). We almost got a hotel. We moved Emma into our bedroom because it was the furthest from the smell.
Emma went back for her second procedure at 9:15 and we waited a little over two hours until Dr. Smithers took us up to the PACU (post-anesthesia care unit). He told us that he saw that there was a left over piece of one of the 3D printed airway splints lodged in her left bronchi. That would be from the Michigan surgery and they were all supposed to have dissolved into her body by now, so it is weird that one piece would still be in tact. He sent the images to Dr. Green to confirm if that's what he was seeing. He also told us in so many words that (not a direct quote) "Emma's left lung is garbage." He wasn't able to get it open, but he wanted to get another Xray in an hour to see if there was any difference from the Xray taken at Pulmonology the week before. We had to wait in the hall for another 30 minutes before we could go in, but they assured us nothing was wrong when Michael asked.
Michael and I were very sad, concerned, and disappointed to see Emma's bloody tooth!! I asked the nurse about it and she said that happens often with bronchs because of the doctors not being super careful when they put the tube/camera down. But only right now am I wondering why they put it down her mouth at all and not straight into her open trachea stoma? We later found out that it was pretty wiggly and worried that it would fall out in the middle of the night, with her choking on it. (I wiggled it yesterday and it seems pretty sturdy again, thank goodness.)
I believe the crying from this photo was because she had just suffered an extremely long blood gas. I held Emma while a nurse poked her finger and had to squeeze it so many times to get enough blood out of it. It took so long!! You can see the gauze taped to her middle finger.
We were also upset that when we got back in the room we saw that they wouldn't let her have her blue balloon "pacifier" and this nurse talked about her pulling at her trach again too. So much for our note taped to the ventilator. We saw that her ventilator was off to the side in a chair and they had hooked her up to a different/ hospital ventilator.
Also some things to know (and learn for Emma!) before reading the texts:
*Any sats (blood oxygen saturations) in the 90's are good, but 95+ is ideal.
*Room air is 21% oxygen.
*End-tidal is the level of carbon dioxide that is released at the end of an exhaled breath. These levels reflect the adequacy with which carbon dioxide is carried in the blood back to the lungs and exhaled.
*RT = respiratory therapist
*For ventilator modes: volume control favors the control of ventilation, and pressure control favors the control of oxygenation.
I had some questions in between Michael's texts, which he answered, but I'm turning this into one long information paragraph text instead of a conversation.
"Her sats are around 91-92. I think she's just tired from the procedure and sleeping hard. It could also be something from this hospital ventilator that is making her sats lower. They lowered her oxygen from 40% to room air. // Just got her readjusted and her sats are 95. I also redid the probe because it was low on her foot. It may not be getting a good signal. // They got her on her own vent. Her vent had so many messed up settings I was like thank God I have this laminated sheet of all her regular home settings! And they agreed that the end-tidal adapter wasn't accurate since when she was on the hospital vent it was saying the same number. Also, when they took the end-tidal adapter off for 15 minutes it still said she had an end-tidal of 25. And it was siting on her pillow!"
"They put the vent on volume mode, but I told them it's supposed to be on pressure mode. They don't believe me even though it's on the laminated sheet. The RT said it has to do with the pressure setting being 130, but I told her it's light green and not bold green, and she said there is no way for them to set it that way. I said, 'I don't know how it works', but I told the nurse I want a second opinion because I know it's not right. I even told her to contact Pulmonology and they would have the same info as me. // To be honest, I don't know if it will affect Emma's breathing. She seems fine sleeping, but for a while the vent was doing 80 breaths per minute, when usually she's at 20! And I told the respiratory therapist that wasn't normal. But they said she's trying to expel CO2 or something. We'll see. I'll get one of the main doctors to check it later."
(That's when I went to sleep. So here are the texts he sent in the middle of the night.)
3:44am--
"Finally got her on her pressure setting. The vent is messed up and locked them out so they had to call in a tech to take a look. But she said I was right because I told them to look at the Pulmonology chart and she said, 'Yes, it is in pressure mode.' And then the other RT asked, 'So why is it in volume?' // Got it fixed. A very nice RT who has been around a long time came by and got it restarted and all plugged in. There are just a couple of slight changes on the vent numbers, but I'm happy. Emma looks like, 'Dang, guys! Give me a break.'
"Earlier tonight I almost started to cry in front of the head doctor, the RT lady, and our nurse because I was like, 'Listen to me. I'm telling you she's not breathing well and she's on the wrong settings." And the nurse and RT said, 'Well, according to this sheet, these settings are correct.' ..I was like, 'LISTEN TO ME!! I know my daughter and this vent. They are the wrong settings. Look up our notes with our Pulmonology doctor!" And the nice lady doctor said, 'Okay, let me see.. You're right. It is pressure and the settings on your laminated sheet are the proper settings.' I told them, 'I'm sorry. I'm not trying to be a jerk, but I need you to listen to me when I tell you that something is wrong. And I know how she is after surgeries. It's not this.' ..Not sure if they liked me talking to them like that, but dang."
(End of texts.) Luckily, by the morning there wasn't much that needed to be done except getting discharge papers, so we were out the door before 11:30am. I think Michael was happier than Emma to be leaving! He took a much needed and well-deserved nap when we got home.
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On Friday, February 25th, we had a Zoom video conference with Dr. Smithers and Dr. Green. It was so great to see him again after four years!! He loved seeing Emma while we had her sitting on Michael's lap for a bit and thanked us for the Christmas cards that I always send him. We discussed the possibility of the local hospital's ENT team (ear nose and throat) being able to do another bronch, this time with a tiny laser, and laser off the piece of the 3D airway splint that is sticking into the left bronchi. Dr. Green confirmed that is what Dr. Smithers was seeing. Dr. Green said he would have his team use a laser on some practice splint pieces to make sure that it could be done. They would also have a device to simultaneously suck up all the pieces so she wouldn't be breathing them in.
^^ Photo of us with Dr. Green before we left Michigan, in February 2018. We were there for a total of 73 days! Look at us.. so young.. and without Covid masks on! Does anyone even remember those days?
Dr. Smithers called Michael a couple days later to let him know that the laser was a no-go because the ENT team said there is a possibility of the laser starting a fire in her lung!! So that was the end of that. Michael and I had already been discussing the idea of not doing anything since Emma is doing well how she is- with her increased nebulizers during the day (six at the end of February instead of the three she was getting in January, plus six inhaled puffs throughout the day, but at the beginning of April, she's doing well with four or five nebulized treatments and four inhaled puffs) as well as remaining on one liter of oxygen at night.
Dr. Smithers has us keeping a little reminder in the back of our minds that her left lung could get infected and then it would need to be removed. But as of today, that is not the case. Maybe by the end of the year, yes? We'll see. Our girl is a fighter!
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