Jemma with her hair fixed like her momma got done
I left the hospital yesterday for a few hours. A friend of mine from high school set it up for me to get a complimentary hair cut at a local beauty school. I hesitated but asked the nurse straight out if Jemma was good for me to leave and she said she was and to go. So, I did. When I got back, Jemma had the pink barrette in her hair and her nurse said she got her hair fixed since her mommy did. So sweet.
Last night, Jemma’s chest tube stopped draining and bubbling again. I was worried because they couldn’t do anymore of the TPA to break up the clots. If her chest tube didn’t work, what did that mean? I was scared she was going to have to undergo another procedure to have her tube replaced. Jemma is a fighter though. Her lung did NOT deflate and she tolerated the chest tube not working for hours… and hours… and hours! Almost 12 hours to be exact. Before, she couldn’t handle the tube to be clamped at all without her lung deflating. This time, she had no complications.
The good news is that today the tube started bubbling again (meaning there is an air leak) but the bubble is very slow like it was when it was working last. Jemma being able to tolerate the tube not working means that the air leak is healing and that her lungs are getting healthier. The elasticity of her lung tissue has to be improving for her to be able to tolerate the little pressure that was there due to the chest tube not draining. It did start bubbling, like I said, after Jemma was laid on her side.
This is how she sleeps at home… on her side. Normally I am laying there with her though. 🙁
One thing I have learned about my baby is that she is very much like me. She doesn’t quit, she doesn’t hesitate to let you know if you upset her, and she is stubborn. That not hesitating to let you know if you upset her is the big one today. Jemma had a very up and down kind of day. She certainly is doing okay but, for awhile there, we had a touch and go feeling. She was on the “vacation” or “holiday” from her paralytic and her pulse was erratic. Her oxygen saturation tanked. It was so frustrating because, just like every other time, she was fine prior to this.
They quickly did a chest xray which showed no change (yay!), increased her FiO2, monitored her temp closely, and finally ran some blood gases. The verdict? She was pissed off. She did not like that paralytic wearing off. She still couldn’t move so there was too much in her system to allow that. She was just not happy with the nurses, the paralyzed feeling, and basically everything. She is just fed up. My poor baby. I stayed by her bedside for 4 hours though just in case she would move enough that I could hold her hand and she actually grab back. Unfortunately, this didn’t happen. She started trying to breathe over her oscillator vent and the paralytic was restarted. Maybe tomorrow.
The thing on her forehead is a BIS monitor that our nurse was using to test her sedation level.
She has had no further increased temps since yesterday, her yeast infection on her neck is clearing up (she got it from drooling and it being moist), her skin is getting pink in areas so they are putting duoderm (a protective patch) on her shoulder blades and coccyx, her bottom is being lubed up well to avoid breakdown, and she is doing well with her oxygen saturation (for the most part). They are taking care of her bowels, her feeds are going well, and her tube is placed right. At this moment, I am waiting to hear how the latest blood gas and chest xray came back. I pray there are no new pneumothorax and it only keeps looking better and better.
The plan for the next few days is to keep weaning that oscillator vent, to decrease her oxygen needed, and to monitor her chest xrays. I told the doctor that my biggest goal is to get rid of the oscillator so I can HOLD MY BABY!!! She knows how important this is to me and said she is excited for us to get to that point too. Hopefully next week we will be on the road to that.
So, the sweet part of today just happened about 10pm. Jemma got that chest xray I was mentioning above. Remember how I said she gets mad and lets you know it? Well, it usually happens when they move her for xrays or procedures, suctioning, changing… okay, all the time. She doesn’t do it when I touch her but she does with the nurses and doctors. Anyway, tonight she was such a good girl. They did the xray, she was re-positioned and her vitals stayed good. Her pulse was great, her blood pressure amazing, and even her oxygen sat was 96%. That is my GOOD girl!
I had a little emotional breakdown today and will share about that tomorrow. For tonight, I want to end on this good note. I really feel my baby is getting better. It is slow. They doctor says it is a slow process (remember marathon, not sprint) but I feel good about her progress. We know we have weeks, even months, to go before she is better but I have hope. I won’t give up on my baby. Her pediatrician, who I talk to daily and see daily when she is in town, said she is very impressed with how Jemma did without the working chest tube. She said Jemma is doing it… she is beating this! So, for tonight I will leave you with that.
My baby is doing this. She’s got it! Please keep praying for her because I truly do believe that prayers help. I ask that you send a prayer up for me too. This is so hard. I cry often, want to break down frequently, but never leave her side. I hate being here but I wouldn’t be anywhere else if my baby is here.
Oh, one more thing… Her WBC today is down to 15.1k!!!! This is down from 17.1 yesterday and 25.8 the day before. Way to go baby girl!
(You can click the Prayers for Jemma on the top of this page for a look at all the posts regarding Jemma’s illness)