Just wanted to update you on Jenna's day. We arrived this morning to her having a fresh bath and washed hair (up in pigtails of course), a princess gown and new Dora socks!! She was so adorable! The nurses said she got up around 5am and they asked if she wanted to get cleaned up and she shook her head yes, she helped wash herself as well. She sat up with the nurses helo for about 15 minutes, What a big girl!! Also before we arrived, ENT group came in and changed her current trach device over to her new one (this has to be done on post op day 5 from the surgery). From now on the respiratory therpists on the floor will do the change every 2 weeks, the main group just likes to do it initially. They said that she tolerated it well and was not too upset. But she was tired afterwards some. She was all friendly with the fellows when they came in to see her, but it was a different story when she realized what they were doing!! So, after that the Morphine drip was turned off completely. We arrived shortly after, barely missed rounds (by like 5 minutes!!). But that is ok, the nurse filled us in and then Dr. Chima came by later. The plan for today was to do some "sprint trials" on just the cpap pressure support, instead of the bipap support. He wanted to do up to 6 hours total of this throughout the day (1 1/2 hours at a time). Also, the goal was to continue going up on her feeds every 6 hours by 5 ml. Currently she is all the way up to 20ml per hour. So far she has tolerated it ok. They have started her back on a bowel regiman since she has not pooped in a few days, but now since she is now eating again, she should move along well. The first trial she only went about 40 minutes and her sats started to dip in the high 70's and she started to work a little harder when breathing. So, they decided to put her rate back on a little higher, on bipap settings and wait a while so she could get back up in her levels and relax. During this time frame also, she began to show some signs of withdrawl since she went off of the Morphine. This lasted around 2-3 hours. Sh was very jittery and moving around a lot, she could not get comfortable at all, very confused like she wanted to go somewhere. So, I decided to get into bed with her. Eventually after telling her everything was ok, she finally relaxed and we napped for a little while. By lunch, she was fine and sleeping very well still. So, around 1 pm, they tried the trial again on cpap and she did great. She went for about 2 hours and tolerated it well. During this time, she had started asleep, and Justin and I decided to take advantage and go over to the house and do laundry. Well, while we were gone, Jenna decided to wake up and her nurse Jessie decided to play and watch Spongebob with her. They blew bubbles and she sat up in her chair (a support chair from OT to help strengthen her muscles in her trunk) for over an hour. They said she loved it!! Childlife stopped by and took pictures since we were gone and missed it, hopefully we will get copies soon! We were so bumbed that we missed her up and playing. Maybe next time :( So, the rest of the day just consisted of another trial on cpap, which she went for over 2 hours and did well. She was tired at the end, but she had a busy day!! The only new change they are making is her labs, only draw in the am and no chest xray for now, because hers have looked great for a few days now! Basically, they are just letting her stomach rest for a few weeks, at least 2 more but it could be longer, it just depends on her progression. They are also working on her respiratory status, just doing trials and hoping to keep helping her get stronger. Baby steps as usual, but she is doing great so far! They did her trach care before we came back this afternoon, so we missed being involved, but hopefully when we can see it tomorrow. She coughed quite a bit this afternoon and spit up quite a bit of mucous, so they had to clean the area and change her ties early. So, hopefully tomorrow we will see that and also maybe her sitting up and playing. Cross our fingers!!
Overall the day went well, and we are so proud that she is making baby steps. We can only hope that it continues, she is such a strong little girl and we are so proud that she has made it this far. Right now she has fallen asleep and resting since she did a lot today. So, we hope to get some rest as well. By the way, her address to send any mail here in the hospital has changed. It is Cincinnati Children's Hospital Medical Center C/O Jenna Meadows, RM. # is B640 3333 Burnet Avenue Cincinnati, OH 45229 Keep praying that she continues to do well each day and thanks again for all of the support. We will keep you posted on her status. Check out the new pictures below I took today of her, they are so cute!!!
Love, Jenny, Justin and Jenna