HOME!!

Hi Everybody! We are home!! We were supposed to be released Monday, then got bumped to Tuesday because the pulmo dr wanted to see if Chrissy could do C-Pap on the vent at night instead of regular vent settings. She failed that test miserably, and had apnea so much the first two hours, they gave up and put her back on the vent! She is doing great during the day though on just a trach coller part of the day and HME part of the day . We didn't get home until late yesterday and spent the evening getting her settled and the vent set up at home and all that. Today we spent the day moving her room and getting supplies put away and organized. Her bed was in the master bedroom with me, but now we have night nurses and since it would be kind of weird to have a nurse in our bedroom (LOL) we moved Chrissy to her own "room" (it is actually our study/dining room but now it is hers).
Chrissy is doing so good with her trach and we are really happy with the results. She breathes great now! She and I thank you all so much for all the prayers and well wishes!!

The saga continues

Hi again everyone. Well, we are still at the hospital. Chrissy is doing okay. She is being weaned off the vent and they are very slowly doing that. Don't ask me why it has to be such a long, drawn out process, but that's the way they do things here! She has been on straight trach collar trials (just using trach collar with warm humidified air on a blowby) today. First they let her go one hour on it, then back on the vent, then two hours off, and back on the vent, then three hours off. She is back on the vent for tonight and tomorrow will go longer off the vent. One thing they are concerned about is her central apnea while she is sleeping, so tomorrow night she will have a sleep study done - half the night on the vent and half the night on c-pap through the vent. If she tolerates the c-pap only and doesn't have a lot of episodes of central apnea, she will go home with a portable vent that uses c-pap (sorry, dont know the technical term) through it. If she has a lot of apnea episodes even with the c-pap, then she will go home on the vent at night, but off the vent during the day. Hope all that makes sense!!
She is adjusting well to her trach. We are only having to suction her three or four times a day, which they tell me is a good thing! At night we maybe have to suction once. The respiratory therapist says that the vent keeps them pretty clear of secretions, and we may see a slight increase in secretions and suctioning when she is off the vent.
We had trach care and trach change class today and I was able to change her trach for the first time. Kind of scary, but pretty easy to do. Her dad was here and had to change the trach too, so she got two back to back changes. Dad was more nervous than me and was slower too! LOL
The plan at this point is for Chrissy to go home on Monday, so we have a few days yet to get through. Two weeks in the hospital is a looooooonnnng time!
Emily has her sedated ABR (hearing) test in the morning. Her dad is bringing her up to the hospital in the morning for that.
Our dear friend (and Chrissy's nurse) Peggy is helping out with getting Stephen and my neice Marissa on the school bus in the morning. I am so thankful we have her to help us out! And did I mention how grateful I am she is Chrissy's nurse!! We are so fortunate to have her as a friend and as a nurse!
Thanks for all the prayers everyone!

Sunday Evening Update

We have moved from PICU to a regular room! Chrissy has had a good day. She is off all sedation and has been awake and alert all day. She has even shared some smiles with me today! She is being weaned off the vent and hopefully by tomorrow she will be completely on room air.
She started her chest PT today with the Vest and seems to enjoy it. She smiled and fell asleep during the treatment. She is only needing minimal suctioning and has a strong cough, which is a good thing with a trach!
They have started trach training with me and I have already learned to bag her and to suction her. Tomorrow the "trach team" comes to discuss her case and all the supplies we will be needing.
So things are still looking good for Chrissy and I am happy tonight!
Stephen is feeling much better now that he is almost done with his Zithromax. Hopefully he won't relapse with the strep again! He is excited to return to school tomorrow.
Emily's eyes are looking much better now that she is a week out from her eye surgery. Most of the redness is gone and the swelling as well. She is supposed to wear an eye patch two hours a day, alternating eyes each day. But do you think it is easy to keep an eye patch on a three year old?? NOT!! Not sure how that is going to go!
Goodnight everyone!!

Things are looking up

Well, Chrissy had a rough day yesterday. Last night she got a mucous plug and I had a whole room full of nurses and residents in here trying to clear her airway. Not a pretty sight and scared the heck out of me! She is okay though. Her fever has spiked a couple more times, but comes right down with tylenol. All the tests have come back negative, but she is on antibiotics anyway.
They have discontinued her phentenol and she is just getting versed as needed now. So she is awake quite a lot more and is learning to manage her secretions. Her Robinul was stopped after the mucous plug incident yesterday as they FINALLY agreed with me that it was making her secretions too thick!!
Today has been better. She is too funny though about her saliva. I guess she has forgotten how to manage all that spit, so she is "chewing" like she has food in her mouth and then she will just spit it all out every few minutes! She is soaking her bibs, but hey, it's better than a mucous plug!!
Tomorrow is the big day. She gets her sutures out and a new trach put in, and comes off the vent. If she does well, we get to move to a regular room in PCU. Then the trach team comes and we start learning how to take care of the princess with a trach!! After seeing what a mucous plug can do, I am a little nervous, I must admit. But it will be okay - this too shall pass...
Stephen went to the doctor yesterday and he has strep again. Little man is on Zithromax. He is already perking up today.
Again, thanks for any and all prayers you can shoot our way!! We appreciate them so much!

Good News, Bad News

Today was a very busy day for us. Kevin stayed with Chrissy while I took Emily for her genetics appointment (part of her eval for the cochlear implant). Afterwards, the Cochlear Implant Counselor met with Kevin and I to teach us about Cochlear Implants and all that they entail! Boy, is it ever complicated! Just the counseling took four hours! But the good news is that we are almost done jumping through all their hoops and all the testing is just about complete. They have accepted Emily onto the candidate list and hopefully she will be getting her Cochlear Implant by early summer! I am so excited for her as she wants to hear and talk so badly! She uses what little hearing she has to the fullest extent and her teachers are amazed that she talks as well as she does with so little hearing to work with.
Now for the bad news.....Chrissy is not doing so well this evening. She has spiked a fever (104.9) and her heart rate is staying way up. She has been started on an antibiotic and had her trach suctioned and ties changed tonight as well. She is pretty uncomfortable tonight and alternates between little seizures and chills. Please keep her in prayers! We were hoping to move out of PICU tomorrow, but don't think that is gonna happen now! I think we will be here a couple more days yet. She is a trooper though and is hanging in there.
Meanwhile, Stephen is not feeling well either. Not sure if he is relapsing on his flu and strep, or what is going on. I am worried about him. He just doesn't seem "right" to me. His dad is taking him to the doctor tomorrow. When it rains, it pours......
Take care everyone. More tomorrow. It is 2:30 am here at the hospital and I am going to try and get a little sleep!

Update on Christina

Hey everyone. Chrissy had her surgery Tuesday morning. She had a tracheotomy. She is sedated and doing okay. The procedure itself only took about an hour. Protocol at Texas Children's is for her to be sedated and kept quiet for up to five days. She is on a vent during this time to help regulate her breathing.
She slept most of last night and today. She has been awake more this evening. She is not sure what is happening I think. She is afraid to swallow, so her secretions in her mouth tend to build up and instead of swallowing them, she spits them out! I guess its back to bibs for a while!
She is calm and not upset though. I think she is going to adjust just fine. Her breathing is a LOT better already.
I stayed yesterday and last night with her and this morning. Kevin came around noon and is staying with her tonight. I plan to be back at the hospital in the morning around 5 am, before the ENT surgeon comes in at 6 am! Why do the docs have to come so dang early in the morning!?
Well, that's all for tonight. I will update again tomorrow.