As all of you know we have been waiting for Nevaeh to be admitted into OCH for months now. FINALLY! As of December 4th Nevaeh did her 3 day stay!
December 4, 2018
Today is Nevaeh’s first day off the vent for more than 16 hours. Her team and Pulmonologist decided that if she was going to try the speaking valve again then she would need to go down a trach size. We got so excited and nervous at the same time. If there was any granulation tissue (healed tissue) in her airway it could obstruct her airway which would be very dangerous. So we proceeded to do her trach change and go from the size of 4.0 to a 3.5. I knew that she had a little bit of granulation tissue on the outside of her trach, but wound care was coming to see her to administer silver nitrate which would get rid of the access tissue so it doesn’t close up her trach stoma. While I was doing her trach change (which I do every week) everything seemed the same the only thing that was going to be different was the trach size. Of course I noticed the granulation tissue which she hasn’t wanted me to touch, but I am always very gentle. So when I changed out her trach there was a lot of bleeding which made me nervous, but I didn’t let go of the trach for one second to make sure that no blood was going to get in her airway. But sense we went to a smaller trach size there was some room and blood got in. I could knew this wasn’t good. The Respiratory Therapist who was in the room with me at the time paged the nurse. I atleast went through four 4x4. All I kept thinking was please let the bleeding stop. After I had held a little pressure on her trach stoma , and suctioned all the blood out she didn’t seemed to be bothered at all. Wow this kid is such a champ! i know I would still be crying for sure! So we had wound care come in and administer the silver nitrate to the area. It was so horrible to watch because I knew that it hurt but we needed to get rid of the granulation tissue. Right after I gave her some Tylenol for the pain. And she went right to sleep. So now comes to our first night off the vent. Of course I was still nervous. With having a smaller trach makes her airway smaller if she is depending on the trach. So her first night had me so nervous I didn’t get any sleep because I just kept watching her and looking at her stats. The only hiccup that we had during the night was she didn’t like being on the heated trach collar but she has to for a majority of the the night to make sure she is receiving humidified air and her lungs don’t get dry sense we are still by passing her nose and mouth. So while she was on the heated trach collar at 1:45 am she started coughing and it was really watery, I had to suction her a few times to clear out her airway. The respiratory therapist that was with her that night was very understanding, she was suppose to be on the heated trach collar for the whole night. But I asked her to put the HME (Heat and Moisture Exchanger) <— Like her nose but connected to her trach. And she gladly got me a bag of HME’s so that we could have back up in the room as well. On top of EVERYTHING that I brought from home. And when I say everything I mean EVERYTHING. We wanted to make sure we were prepared, because the last couple of times she was scheduled to come to OCH it didn’t happen for very good reasons. So Nevaeh’s first night had a little bump was easily fixed!
December 5, 2018
Today is her full day off the vent! It is so awesome! I brought the single stroller with me because I didn’t need to put the vent on anything which was so nice and very convenient. Nevaeh and I went for a little stroll around OCH and they were having a tree lighting down stairs. She loved seeing all the lights. I love to see her laugh even though no sound comes out her laugh is very contagious. We were not able to do trach care in the morning because the silver nitrate that was administered the previous evening. So we talked to the Pulmonolgist and the team again this morning. And they wanted to try the speaking valve!!! I got so excited! This was finally her chance to take another step to losing her trach! We had to wait until after she was finished eating because when a person who has had a trach for this long their vocal cords have been resting and not moving that much at all. Even though it will only be 30 minutes, ITS A START. So 1:30 came and we were able to put the speaking valve on. At first she started coughing a lot because how they explained it is that the vibration of the vocal cords make her throat feel itchy which makes her want to cough. But when she stated to cry I was shaking so much because I was so happy to hear her voice. She went the full 30 minutes and her stats stayed the same her heart rate was a little elevated but she was upset from the change in air moving. For the pat 6 months she has been used to breathing out of her trach without a leak (air going around the trach). Now she will have the chance to be able to vocalize! Of course the 30 minutes went by way to fast. When the nurse practitioner came in to check and see how Nevaeh was doing after being on the speaking valve and noticed how well Nevaeh did she is going to consult the team and the Pulmonologist to see if she can do an hour. She has been flying through everything that is thrown her way! Her night vent weaning trial went great as well, we had her on the heated trach collar for just a few hours this time and then put her on the HME then switched her back for the remaining time, and she slept all night. Tomorrow will be her last night at OCH and she will be doing a sleep study were they hook up to a EEG which has probes that are placed on her head to monitor her brain waves to make sure she isn’t having any type of sleep apnea.
December 6, 2018
This morning we will be going over if she is able to have more time on the speaking valve. I am so nervous to do her trach care again because she was in so much pain when I did it yesterday. We talked to the team this morning and the plan is for Nevaeh to try the speaking valve 30 minutes twice a day so she can get used to a little more and we will increase more time per her Pulmonologist. She will have her sleep study tonight as well to tell us if she is having any type of sleep apnea, so I have to make sure she doesnt sleep to long during the day so they can get a good study while she is sleeping. So today was rough trying tough trying to keep her up for a long period of time. I let her take a 1 hour nap between 3 and 4 which she seemed to enjoy a lot because she woke up with a smile and started dancing. Being off the vent for the past 3 days has surely made her happy. For the past month every time we hook Nevaeh up to the vent she would disconnect from it. After her sleep study the tech was saying that he felt very hopful for her.
December 7, 2018
We are being discharged today! I would say for myself that her sleep stidy went pretty well. She slept through the night for the most part. She wasnt happy when I hooked her up to her feeding pump, but she never is. One of her feeding pump times is 2 am. So we got to talk to the team and the Pulmonologist this morning, and they said Nevaeh can go home and NOT BE ON THE VENT! So much blessing and so much achieved in just 3 days! Baby girl is rocking so much and is so amazing! This is another step closer to Nevaeh losing her trach!!!