4 Days And Counting

It has been a long few days! Sorry there haven't been a lot of updates but sitting down to write one, usually leads to my eyes closing and me falling asleep. As you read in the previous post, the surgery went great! So many staff have told us how well Kyleigh did and what a success it was. That is an awesome thing to hear!  During surgery, the team discovered that Kyleigh has a small and "tricky" air way.  She was difficult to intubated and required fiber optics to guide the anesthesiologist. The reason I bring this up is that this is also the reason the breathing tube stayed in a little longer. They waited until the anesthesiologist was available so that if she didn't do well when it came out, they would be able to put it right back in.  She was successfully extubated Tuesday morning!

Tuesday was a great day! It was so good to see Kyleigh without the breathing tube. Family and friends all expressed relief and joy.  One of my Aunts put it best when she said, "I think we are all breathing a little better too"!  Her NG-tube feedings were started and everything was looking great. The rest if the day was spent watching her sleep and talking to doctors.  In the meantime, our little man Kevin, was starting some excitement of his own. On Tuesday he developed a fever and vomited. His fever got up to 104.2! He still wanted to come to see us at the hotel and we didn't have the heart to tell him no. Plus we really missed him. It seems he just needed some mommy and daddy time (and a little children's Tylenol) because by Wednesday early afternoon his fever was gone!  Phew, one situation resolved but little did we know what Kyleigh had in store for us the next day.

Wednesday morning we woke up to a phone call from the PSHU.

 "Hi Mr. Taylor it's Meagan from the PSHU. Kyleigh is fine now but she had an event a few minutes ago. She was doing a 'tongue clicking thing' and her eyes were glazed over. She wasn't breathing and we lost her blood pressure. We did have to do chest compressions and bag her but in less than a minute she was back like nothing ever happened. The entire event lasted less than 2 minutes."

After the room stopped spinning we went over to the hospital right away. The nurses said at first they suspected a seizure but the doctors were confident it was NOT. After much discussion and testing, it was determined that it was a result of extreme acid reflux! I KNOW RIGHT!?  I thought it was crazy too! I will try my best to explain how this is possible.   I will have to go back to my days in anatomy class to confirm my understanding but here is my best shot. One of the nerves in our body called the vegus nerve runs down the entire length of our body and is very close to the surface near the esophagus. When this nerve is damaged or injured or just plain stimulated, the body has a negative response such as a drop in blood pressure, decrease in respiration, or in Kyleigh's case all of the above. The nurse told me that sometimes even just suctioning a baby can cause a vagal response. So everything is fine but wow, what a way to start your morning!!

During the day Wednesday Kyleigh had a swallow study done. This is a video x-ray of her mouth, larynx, pharynx, and esophagus during a swallow to see if the liquid is "going down the right pipe".  In addition to finding out if she can swallow safely, the doctors wanted to find out if the anatomical structures were correct. They suspected there may be a fissure between the esophagus and larynx (wind pipe).  If this were true, it might explain why Kyleigh's belly fills with air so easily and why acid reflux may be so irritating to her airway.

The results of the swallow study were all good. Her anatomy is normal. No fissures. It also showed that her swallow reflex is normal and she does not aspirate (bring liquid into her lungs).  She does have difficulty with the oral phase of swallowing, meaning she does not coordinate the movements of her tongue well to bring liquid from a nipple to the back of her throat in order to swallow.  This is most likely due to her small and recessed chin.  This means drinking from a bottle or breast will be very difficult for her.  The good news is that this is a skill that can be worked on and even if it doesn't improve, as she moves on to solid baby food she should do just fine.  It was determined that the NG-tube feedings could continue (they had stopped after the event) and that Kyleigh should try to take 5ml of each feeding from a bottle!

The chest tube that was draining any extra fluid in Kyleigh's chest and from around her heart was supposed to come out Wednesday.  Thanks to the event of Wednesday morning, the doctors decided it was best to leave it in to make sure the chest compressions did not cause any bleeding etc. They also did a chest X-ray to make sure the compressions didn't damage the breast bone closure.  It did not.  All looked normal.

Thursday morning did not start as exciting as Wednesday.  No phone calls to scare us to death.  Instead, we called the PSHU to get an update.  Kyleigh did great overnight.  No drops in blood pressure etc. Only needed pain medication once, and best of all....the Chest tube was removed!!  This was a big deal because it meant we could finally hold our little girl.  We last had her in our arms at 7am Monday morning!

We got to the hospital to find her resting peacefully.  We did not want to wake her up just because we wanted to hold her so badly. So we waited....and waited...and waited.  This little girl just wouldn't wake up.  The nurse reassured us everything was fine. It was most likely because until now, Kyleigh had at least a little discomfort and was finally able to rest.  However, the nurse said that her Hemoglobin was low and Kyleigh was going to get 2 units of blood.  We were happy to see Kyleigh getting what she needed but we were not allowed to hold her while she was getting it. So we had to wait...again.

By this time, our little man Kevin had arrived to spend some time with us.  We swam at the hotel and went out to eat.  After a lot of quality time with him, he left with grandma and auntie Kim.  Even though we know he is well taken care of and loves spending time at grandma's house, seeing him leave each night has been really hard.  I miss my buddy!  I keep telling myself that neither of them will remember this, thank goodness. But I will!

So we made our last visit up to the hospital for the night and to no ones surprise, princess Kyleigh was sound asleep.  This time we didn't let her sleep.  The nurse helped us get her out of bed, making sure that all of the wires and tubes stayed connected and untangled and placed her in Bridgette's arms.  Instantly you could tell it was exactly what they both needed.  Kyleigh cuddled to Mommy and let out the biggest sigh.  The monitors were proof of what I like to call "Mommy Magic".  Kyleigh's heart and respiration rate slowed down and her oxygen level jumped from 90 to 100.  All signs that she could not be more comfortable.

I got to hold her too.  However, my experience was a little different.  She cuddled up but squirmed a lot and couldn't seem to settle completely. Then she very loudly loaded her diaper!!  Once she finished, I got the sigh Mommy got too.  When it was time to put her back, the nurse came to help.  This is when Kyleigh pulled out all the stops to show she is Daddy's girl.  She gave me the saddest puppy dog eyes, pouted out the bottom lip, and whimpered! SERIOUSLY!?  Even the nurse got choked up! I told her if I could sneak her out I would, but it just wouldn't be a good idea.  I think I was convincing myself more than Kyleigh.

We helped the nurse get her settled and set up her next feeding before we left for the night.  We are going to try to get some sleep.  We hope tomorrow will bring more good news and maybe move out of intensive care.

Thank you all so very much for your prayers and words of encouragement.  They help more than you will ever know.  I will attempt to post a blog of pictures.  Some people don't large to see pictures of Kyleigh connected to the tubes, wires, and machines so I will title the blog "Hospital Pictures". This your fair warning that if you don't like these kind of pictures...don't read that blog :)