I am in heaven after spending some quality time with Kayleigh tonight by myself. Don't get me wrong, I love having Aimee with me when we go to the hospital, but there are those rare times where I get to spend one on one time with my sweet daughter and tonight was one of those times.
Kayleigh is doing much much better and I am pleased to say that "hopefully" she just had a cold that caused her to act up this past week. Whoever has been following Kayleigh from the beginning will know that she can handle the tough times like a champ, but when it comes to something small, she hits rock bottom.
Kayleigh is on her way back to full feeds. They started her the other day and are moving up quickly. Her belly is handling it quite well. It has enlarged a little, but it is soft feeling which is normal for her. She is no longer on any antibiotics and is not producing any yellow/green mucous out of her nose/trach. The great news is Kayleigh's recent Echocardiogram has showed that Kayleigh's pulmonary pressures have returned to her normal baseline. Her baseline is still on the elevated side, but much better than where they measured out to be the other day. Also, her heart's right side functions have return back to normal as well. Praise the Lord!
The cardiologists met on Thursday for their weekly meeting of the minds and are possibly deciding to transfer Kayleigh's hypertension medication (Flolan) to Trachlear, which is a medication most pulmonary hypertensive patients go on, but we didn't think it would be this early in the game. Trachlear is sort of a liquid form of the Nitric she was on before and will do the same job as the Flolan is doing now. Once they get her on the Trachlear, they will start to wean her off of the Flolan and remove the central lines that are placed in Kayleigh's chest. The good news about Trachlear, is it will be administered through her "future" G-tube and orally when she starts to take a bottle later down the road. The bad news of this drug is that it has potential to disrupt or even harm her liver functions. I think the older she gets, the less of a chance that will happen. I am guessing that now she is bigger, she has a better chance of it now harming her. We at least hope so or that could be another problem we don't want.
Speaking of Kayleigh's weight, she is over 9 pounds now. What a chunky monkey! You can tell by one of those photos, she is putting on the pounds. It is hard to believe she is nine times her birth weight. Yowzers! She hit the 9 pound mark last week, but quickly fell below once they gave her some Lasix to remove some of the excess water retention she was holding on to while she was ill.
Last but not least, Monday we will be scheduling Kayleigh's upcoming surgery for the g-tube, nissen and bilateral hernia repair. We are beyond excited to hear we are getting close once again to proceed with the surgery plans because the quicker we can do this, the quicker she can come home.
It is tough to write about some fun thing when Kayleigh isn't doing well, so I am going to rehash our events when we went to Joyce and Terry's house (Aimee's Mom and Step Dad) last weekend. We all went for a hike on their nature trail down to a lake that is near their home. Besides sneezing and blowing my nose a million times due to the nasty pollen issues we are having here in Charlotte, it was a great escape from the real world. It felt awesome to finally get out of the house/work/hospital to have some wonderful family quality time. Here are some of the photos that we took from that day.
Everyone loves licking the brownie bowl! "Sorry Ally" :)
I can't say enough how much I appreciate everyone's thoughts and prayers through this journey. It is a blessing to receive so many thoughtful comments on here and on Facebook. I am trying to answer more of your questions, so please let me know if you have any and even though we are so very busy, I promise to do my best to get back to you in
Happy Easter Everyone!!!