Just for Fun

Most of you know me well enough to know that no matter what the situation I always find a way to laugh and have fun.  This time in my life is no different, so I thought I would share a couple of funny things that have happened during our stay.

Heavy Recruiting

The cardiologist Dr. Vanbergen, has been trying very hard to recruit me to be part of the Advocate Pediatric Team! He has mentioned I'm an OT to literally ALL the staff he has come in contact with! Every time a new person came in to the room they said, "So I hear your an OT! You should talk to the rehab manager."  This went on all day every day until finally the speech therapist physically brought her manager to the room to talk to me. We finally agreed that I will at least build my resume in the Advocate system. I think Oak Lawn is a little far to go to work every day, but I'm a firm believer that everything happens for a reason, so who knows what may come of it.

The Not-So-Revolving, Revolving Door

The entrance to Hope Children's Hospital is a very nice big blue awning and very welcoming to children (and adults too). In the center if the entrance there is a huge automated revolving door complete with giant stuffed giraffes. Bridgette and I have come to the conclusion that there is a hidden camera show secretly taping our entrances and exits from the building. Why do we think this? Probably because more times than not when we walk up to the door that is usually already in motion, it comes to a complete stop. Then as we decide we should use the manual door on the side, it starts up again. So we decide to go in the revolving door.  It keeps moving long enough to seal off both exits and comes to a complete stop! Yes, there we are....trapped....the stuffed giraffes staring us down. Multiple staff walk by but nobody seems to notice the two full grown adults in the giraffe cage! Fortunately this is a busy hospital and more people approach the not-so-revolving, revolving door long enough for it open up so we can walk out. This has not been a one time occurrence! You would think after it happened once we would have learned our lesson but no, surely it won't happen again right?!  Wrong, this happened at least twice.  The door also revolves to a closed position so that we can't even get in! I guess we will see what happens when we try to leave today.  If you don't hear from us, someone check with the giraffes!

The Hellivator

Kevin has been coming to visit us at the hotel almost every day. We've been staying on the 5th floor which means we take an elevator multiple times a day.  Kevin loves to push the call button and of course ride in the elevator. We have an elevator in our building at home so this was not new to him.  We have heard him say the word elevator many times and he always said it correctly.  Yesterday, as we were waiting for the elevator, he referred to it as the "Hellivator". We laughed it off and stepped in, pressed the lobby button and the doors closed. We rode down to the lobby and the doors opened...briefly...then closed again. We tried pressing the door open button, the lobby button, any other floor button, nothing worked! It was only a few seconds but a little panic started when all of a sudden the elevator started going up. I was able to press our floor and when the elevator got to floor five, it slowed down, then kept going. . . and going...we got to around the 10th floor and I began pressing all the remaining floors. Finally the Hellivator stopped on the 11th floor and the doors opened. This time I jumped out and stood so the doors couldn't close ( or at least I was hoping they wouldn't) and told everyone to get off. We waited patiently for the other elevator and it took us uneventfully down to the lobby. I informed the front desk and with a slight hint of "this man is crazy" the woman called maintenance. I don't think they did anything to fix it though because later that night my trip down to the 4th floor to get ice, included a stop on the 12th floor and the Executive Lounge!  I'm not sure what Kevin knew that we didn't but I know I'm listening closer to what my 2 year old has to say from now on.

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 :)

Surgery Day!

Today was the day. Kyleigh had open heart surgery to repair the 3 heart defects. Before I go into all the details, SHE MADE IT THROUGH JUST FINE AND IS DOING GREAT!

We had to beat Christ Hospital at 6am this morning for a 7:30am surgery that was to take anywhere from 4-7 hours. The staff at Hope Children's Hospital was/is amazing. They made us feel as comfortable as possible and promised to take good care of our baby. At 7:35 they took Kyleigh into pre-op to get her ready.  This was the single most difficult thing I have ever had to do in my life. To hand her over to the surgical team, knowing what was about to take place, was excruciating! By 9:15am the nurse came out to tell us that they were already underway.  She was on the heart/lung bypass machine and they were beginning to repair the holes.

There were some complications before starting because they were not able to get in all the IV's they wanted but were able to put in a central line which was the most important one.  Then, they had trouble intubating her because she has a "tricky" airway. All in all in she was off to a great start.

To our surprise, only an hour later, the nurse came back out and said the holes were closed and they were getting her ready to come off bypass. They were hoping to have her off bypass and breathing without the tube before bringing her to the Pediatric Surgical Unit (PSHU). A painfully long half hour later she was off bypass and closed up.  They were beginning the process to extubate to see if she was ready to breath on her own and we were told we could see her in about an hour. True to their word, they came to get us an hour later to take us to see our little princess.  They were not able to take her off the ventilator at that time because they wanted to be sure she could support her own airway since her jaw is smaller.

As of now 4:45pm she is resting comfortably and waking up gradually.  She is still intubated but fighting it well. I will post another update when there is more to tell.  Bridgette and I can't thank you all enough for your thoughts and prayers. The support has meant everything to us and we know your prayers have made all the difference.   Princess Kyleigh is certainly a fighter and we are confident she will be off the ventilator soon and well on her way to recovery. In the meantime, more prayers certainly couldn't hurt.

Forgot the picture

In my last blog I said I would include a picture but I forgot to put it in.  So here it is, the reason for my everything:

Our New (but temporary)Normal

So by now you probably have guessed…Princess Kyleigh is HOME!!  Thank you all so very much for your love, support and prayers.  We still have a very long way to go but having our princess home makes things so much easier.  As any of you who have children know, having an infant in the house may make caring for her easier, but it certainly does not make ANYTHING else (like writing a blog) easier!  Bridgette and I were spoiled when we had our son Kevin because he slept through the night from day one.  Whenever he did wake up to eat, Bridgette was nursing so it was a quiet and relaxing time.  Kyleigh is very different in that she HAS to eat every three hours whether she is awake or not and she is fed through her NG Tube which is easy to do but requires some set-up and of course monitoring. Oh and I am very much a part of that LOL.  So needless to say we had some adjusting to do and during the time I used to write this blog, I am now feeding Kyleigh or getting some much sought after sleep. 

To be honest, I considered not writing anymore, Not because I don’t enjoy it and certainly not because there is nothing going on, but I felt since the flow of new information had slowed down, everyone knew what was going on by word of mouth.  I was very wrong.  I guess I didn’t realize just how far this blog reached and how many people come here to find out how Princess Kyleigh is doing.  It has been wonderful to run into people that I don’t see all the time and have them ask “How is your beautiful little girl, when will she be able to come home?”  “I have been checking your blog but there haven’t been any updates since she went to Loyola!”  Princess Kyleigh has certainly made an impact in so many lives.  So for those of you that don’t get the regular flow of information from immediate family and close friends, I apologize and this blog is for you J

Kyleigh was discharged from Loyola on April 4^th, just 2 days before her 1 month birthday.  Bridgette and I had to prove we were ready so to speak by taking a few “classes” at the hospital.  We had to take an infant CPR class; verify the prescriptions were correct and demonstrate that we knew how to administer them; demonstrate that we knew how to feed her through the NG-tube; and lastly we had to learn how to insert the NG-tube in the event Kyleigh pulls it out.  Learning to put the NG-tube in was a very emotional and unpleasant experience but Bridgette and I both got through it and while, we haven’t had to change it yet without the help of a nurse, we are much more comfortable with it now.

As the title of this blog states, we definitely have a new (but temporary) normal.  Kyleigh’s castle has many visitors who come to check on her.  There is a home health nurse that comes 1-2 times a week to weigh her and see how she is doing overall.  There is also a public health nurse that comes once a month to check on all of us, but especially Kyleigh.  Since Kyleigh was in the NICU her name is given to the state as an “at risk” baby.  The nurse is required to visit (whether we like it or not) and provide us with resources for support for Kyleigh and the family.  It is actually a very nice service so thank you to all of you Illinois tax payers LOL.  Once a month the Home Health Company visits with boxes of feeding supplies, most of which we do not need.  I have contacted both my insurance company and the home health agency to try to change the order, but I am told this is what gets sent to “NG-tube patients”.  What a big waste of money and resources!!  My love/hate relationship with the insurance company and the home health agency can be a topic for a different blog LOL.  Lastly, Kyleigh will be visited regularly by some Early Intervention Therapists.  They are all coming out on May 17^th to complete their evaluation and determine which of them Kyleigh will need.  I am sure there will be many blogs to come about this since I have already voiced my opinion to the case manager when I found out that the one constant person on Kyleigh team will be a Developmental Therapist.  For those of you that do not know, there is a not so pleasant relationship between OT’s and DT’s.  Based on their title, you are probably thinking they are perfect for Kyleigh, and to a certain extend you are correct.  The problem is in order to become a DT one simply needs to take certification course to become licensed as a DT.  Meaning, no matter if you background is in medicine or auto mechanics you can become a DT.  So I have already told our case manager that I expect to see background information on any DT working with Kyleigh, not just their DT license.  In addition, the DT profession is constantly trying to do the job of an OT and infringe on our practice act but that is neither here nor there in this particular situation.  If Kyleigh needs a DT, she will have a DT.  I will just make sure their background is appropriate!

Over the few weeks Kyleigh has been home, her breathing has changed pretty dramatically, in that she is breathing faster and harder, especially when she is eating.  It is to the point now that she will just go to sleep while she is eating because it is too exhausting to participate.  We told this to the cardiologist during our office visit and he agreed but said, as difficult as it is as a parent to see your child struggle, we should try not to worry too much.  According to him, Kyleigh’s is actually doing much better than most babies with the same heart condition.  He pointed out that babies with this condition’s heart and lungs are working as though they are running a marathon all day long.  Therefore Kyleigh is burning so many calories that it is difficult for her to gain weight.  However, we are happy to say that Kyleigh is gaining weight very nicely and the doctor was even impressed that she has the typical “chunky” arms and legs you would see on any other baby.  I did tell the cardiologist that if I knew anything about nutrition, how to gain weight was it!! LOL! 

Kyleigh gaining weight is absolutely a success to be celebrated.  It has not been easy at all.  Aside from Kyleigh, Bridgette is the true champion in this regard.  She works with the NICU nutrionist to come up with the appropriate mixture of breast milk and formula so that Kyleigh gets the exact number of calories per day that she needs to be able to gain weight.  If you were to come into our kitchen you would see that it truly is a science.  In fact, my best friend Anthony said that our kitchen looks like a mad scientist lab!!  Between the math problems scribbled all over pads of paper, to the different types of formula being used, all while trying not upset Kyleigh’s stomach. Bridgette is a hero in my eyes.  She just tells me which bottles of milk to use for the feedings so I don’t screw anything upJ.  Proof once again how lucky I am to have such a great wife and how fortunate our children are to have such an amazing mother!!

I could go on and on about all the details of our daily life right now but I know what you are really wanting to know is when will Kyleigh have surgery?!  We were finally able to schedule her surgery for May 20^th.  She will have the surgery at Advocate Christ Hope Children’s Hospital.  The surgeon will be Dr. Ilbawi.  We have many pre-op appointments leading up to that day and that’s probably a good thing because we are already a nervous wreck!!  Many of you have asked/offered to come to the hospital to be with us while we wait for the surgery to finish.  Thank you very much for your kindness and for being so thoughtful.  Bridgette and I ask that instead of coming to the hospital to be with us, you focus on sending positive thoughts and praying for Kyleigh that day.  For family, we may have a “satellite waiting room” set up at GG’s but we will keep you posted on that. 

That is it for now!  Overall, things are going as well as they can.  We have adapted to our new, but temporary, normal.  Kevin LOVES his baby sister and they really love spending time together.  Thank you all again for all of your love, support, and prayers.  Please keep them coming!  Here is a recent picture that I shared on facebook for those of you that may not have a FB page.

Love,

King James (cause King Jim just sounds weird), Queen Bridgette, Prince Kevin, and Princess Kyleigh