On June 6, Xyler gave us quite the scare by having a severe allergic reaction.  He has never had anything like it happen before so it was pretty scary for me.  Xavian and Xyler were having flavored marshmallows for a snack.  I hadn't given them these for a snack for a few months but I'm sure they had has some in nursery just a couple of weeks before.  Xyler had only ever been to nursery a couple of times, but I know that is one of the favorite snacks for kids in there since I have served in nursery before.  Xyler normally doesn't eat very many marshmallow's.  Xavian is the one who eats the most, but that day Xyler was eating a lot of them.  It was early in the evening when I gave them to them.  I was still trying to figure out what to make for dinner so I knew that we would be having a late dinner.  Scott still wasn't home from work yet when the boys were eating their snack. 

I noticed Xyler would cough a bit and then be fine.  I was a little worried when he did this a few times, but told myself to stop being so paranoid.  It was probably about ten minutes later when Scott got home and by then Xyler was starting to cough more.  I told Scott I was getting worried because he kept coughing.  He was on amoxicillan for a cold he had for a couple of weeks, and was just getting better, so Scott said that was probably why he was coughing.  A few minutes later he wouldn't stop coughing and his face was really red, and we both knew something wasn't right.  I was worried he was having an allergic reaction by the way he was acting.  We decided he needed to go to the instacare that was only a few miles from our house.  I was so worried that his throat would swell up and he would stop breathing, so I had Nika come with me so she could sit by him and help if he needed it. 

We got in the van and I remember looking in the rear view mirror at him before we left and thought that his eyes looked like they were swelling.  A minute later I looked at him and his right eye was almost swollen shut and his left eye was swelling more too.  I was even more worried then, that his throat would swell shut.  Those few miles to the instacare seemed to take forever!  We finally got there and I hurried and got Xyler out and we ran into the instacare.  I walked up to the desk and told them Xyler was having an allergic reaction.  I had done so well at not crying until that point.  One thing I have had happen since Xyler was born is that I get super emotional now and it's hard to hold it in.  The lady behind the desk told me it would be ok and they took us back right away.

They took us to a room without weighing Xyler and without getting any info.  The nurse was asking me his name when the doctor came in a minute later.  He listened to Xyler to see how his lungs sounded and to look him over.  I told him what had happened and that Xyler had a heart defect(I think everything is so much scarier for me with him because of his heart defect).  The doctor ordered a shot of epinephrine, benedryl and a breathing treatment.  He figured the reaction was from the dye in the marshmallow's.  A minute later they came in with the shot and gave it to him.

This is a pic of him right before the shot.  It's not the greatest of shots because he was crying so much I just hurried and took a pic.  His body was also covered in hives and had a rash all over it.  I didn't notice this until when the doctor was looking at him.  I just couldn't believe how fast everything happened to his poor little body.
 

Just a few minutes after the shot he was looking and sounding so much better.  They gave him some benedryl and then brought in the stuff to do the breathing treatment.  Xyler does not like breathing treatments so I knew it was going to be a wrestling match to keep the mask over his mouth and nose.  The nurse helped hold him so that he couldn't grab the mask or move his head.  He cried the WHOLE time!  I knew he would because this is what he has always done when I have had to give him treatments at home.  The nurse kept telling me he would probably wear himself out and calm down, but it never happened.  I told her he was a strong, stubborn kid and had to be with everything he has gone through.  She agreed with me.  After the breathing treatment he was almost completely back to normal.  His eyes were still a bit swollen but the rash and hives were pretty much gone.  Xyler was up running around a acting more like himself.

Here is a pic after everything was done.

They had us stay for a bit to make sure Xyler was doing ok.  Nika was such a good helper and played with Xyler to keep him happy.

 

The doctor told me later that his lungs had sounded wheezy when I brought him in but not to the point where he was going to stop breathing.  He said that they sounded fine now.  What a relief it was to have him be ok!  In the rush of everything I hadn't been able to tell them everything he was on and told a nurse that he was on amoxicillan and asked if that could have made this reaction happen to the dye in the marshmallow's.  She said that it was possible.  Xyler has been on that same medicine and had a reaction to easy mac before but nothing this severe.  With the easy mac he broke out in red splotches around his mouth.  He can't eat it anymore because the splotches happen every time now, and we figure it's from the dye in that too.  I think from now on I will tell his doctors he cannot have amoxacillan since I think it makes his body susceptible to the dye's in food.

 

Xyler likes to keep us on our toes, I have decided.  I feel so bad for him because he has already been through so much and yet he seems to keep having more things happen.  He is so strong and I am so proud to be his mom.  I am proud of all of my kids.  They are all so strong and do so well in helping anytime we need it.  They all love their little brother and pray for him and his heart all of the time.  It's so sweet!  I love them all so much!

Happy Mother's Day!

Happy Mother's Day!  Today I have been thinking a lot about my most memorable Mother's Day.  It was 3 years ago.  My oldest, Xander, was at Primary Children's Medical Center recovering from having emergency surgery on his small intestines.  I will give you some background before I tell you why this was my most memorable Mother's Day. 

On a Friday night Scott and I were up late watching tv.  It was around midnight when suddenly Xander came running out of his room and ran to the bathroom.  He made it to the doorway and put his arms on both sides of the door frame and started throwing up.  I have never seen someone throw up with so much force and it worried me that something was wrong.  I immediately told myself that I was overreacting and just figured that he had the stomach flu.  He was up most of the night throwing up that night.  The rest of the weekend he didn't eat much but he seemed better.  I figured that it would take him a few days to get his appetite back.

The following Monday we were about to sit down for dinner and Xander came upstairs saying that he was starving and that his stomach hurt because he was so hungry.  We sat down to eat and he only took a few bites before he said that he wasn't feeling good.  I had him go lay down and not long after he started throwing up.  This really concerned me because I thought that he was better.  The poor kid could not keep anything down and his energy started draining.  The next morning he didn't even have the energy to watch tv.  He would just sleep.

I called the nurse and she told me he might have strep and that I should bring him in.  I took him in and his pediatrician said that he might have an appendicitis.  I couldn't believe that I didn't ever think about that.  My daughter had had hers out when she was three so I couldn't believe that I didn't push on his side to see if it hurt.  I took him over to the hospital so that they could check him in and give him fluids since he was so dehydrated.  They did an ultrasound and the tech was having a hard time finding his appendix but thought that she saw part of his intestine twisted.  She had the radiologist come take a look and he was about to head home when she called him.  He hurried and looked and said that it just looked like his intestine was thickened.  At the utter disbelief to me and the nurse, Xander was sent home.  When his ped. called me at the hospital to tell me what they had found, the whole time I kept thinking I should tell him what the tech saw and to ask for a ct scan.  I still regret not doing that.  It was the spirit telling me and I didn't do it.  If you ever feel like the diagnosis that they are telling you about your child is not right, ask them to run more tests.

The fluids helped Xander a bit but he still wouldn't eat or drink since it always just came right back up.  The next morning I took him in to his ped's to get some more fluid put in by an IV, which helped a bit but Xander was still getting worse.  He was literally becoming lifeless.  He just slept all day and by that night he was in a lot of pain.  I knew something was not right so I took him in to the ER.  They did a ct scan and found that his intestine was twisted.  Xander was taking by ambulance around 4:00 AM to Primary Children's.  I rode down with him.  I was 6 months prego with our 3rd child and that was not a fun ride.  I realized right before we left that I had been up all night and had not eaten anything since hours before.  I asked the nurse for some crackers and a mt dew.  She gave some crackers and a warm mt dew.  A warm mt dew didn't help me and I rode backwards going down.  The nice EMT kept asking me if I wanted to trade him seats but I wanted to be able to stay right by Xander.  I was so glad when that ride was over.  Xander slept through it all, which I was grateful for.

Scott woke Nika up and packed bags for all of us and drove down not long after we left.  When Nika and him were walking from the parking terrace to the hospital Nika threw up.  We think she got car sick from being woken up so early and having to drive for 1 1/2 hours.  I was sitting in an ER room with Xander when Scott came walking in with Nika in a wheelchair.  I freaked out for a second wondering what happened to her. It was quite the eventful morning for all of us.

Before they took Xander back the dr told us that they would go in and do exploratory surgery to see what was wrong.  He gave us a couple of scenarios as to what it might be.  One of them is what it ended up being.  He had what is called Meckle's Diverticulum.  A small flap is on your small intestines when you are in the womb and it's fed by an artery.  After you are born it goes away except for in 2% of people, and of the 2% only 2% have a problem.  It is a very rare thing in other words.  Xander's caused his small intestine to twist.  They ended up taking out about 6cm of his and his appendix.  His surgery lasted about 2 1/2 hours and I thought it was super long.  I have now changed my mind on that since Xyler's longest one was 6 hours.

Anyway, Xander had his surgery on a thursday morning and couldn't eat or drink until Sunday.  The poor kid had a tube down his nose draining everything out of his stomach to help his intestines to heal. The eating didn't bother him, it was the not drinking that was not fun for him.  I was able to swab his mouth with a little sponge so that it was moistened and that was all we could do for him. I would let him hold the sponge and looked the other way when he sucked on it a bit to get some of the water out of it.  :)

 I must say it was not fun to sleep on the pull out chair/bed while being pregnant.  My back was already hurting during this pregnancy and it only got worse from that hospital stay.  The night before Mother's Day, Scott told me I should go stay the night at my sister Heather's house so that I could get some good sleep.  Nika was staying with them and she would be going back home with Scott the next day so I decided to stay there so that I could bring her back with me.  I did not, however, get a good night's sleep.  Nika woke up during the night crying and was burning up with a fever.  The next morning she ended up throwing up.  I was just glad that I was busy getting ready and so was Heather so it was her hubby, Casey, who had to clean it up since she hit the carpet.  :)  We figured she got heat stroke from playing outside for so long the day before.  It was weird because she has never had that happen before.

I realized that morning that it was Mother's day.  I was not expecting to get anything for it since we had been so busy with taking care of Xander.  Casey was so sweet and gave me a rose.  I was touched that they would do that for me and figured it would be my only gift.  By the time Nika and I got back to the hospital I found out that Xander had finally gotten the tube taken out and he could then eat.  I was so happy and thought that was a great Mother's Day gift.  I then found out that Xander was able to get up and walk around and had gone to the play room.  He made me two mother's day gift's there.  I absolutely love these gifts! 

These are the two gifts he made.

 

 

For me, it was the best gifts because Xander was feeling well enough to make them.  I love Primary Children's and that they do wonderful things like this for the children who, unfortunately have to be there, and also for the parents who are there watching over them.  This was a hard Mother's Day for me but also the most memorable.  Motherhood is such a wonderful blessing and that day I was so grateful to still have Xander with us and to be blessed with two wonderful kids and one more on the way.  I was also so grateful for the wonderful doctor's and nurses who took care of Xander and saved his life. 

 

This was our first experience with Primary Children's.  Little did we know how much time we would end up spending there in the future with our little Xyler, but this experience helped prepare us for it.  It created a special place in our hearts for Primary's, which made it a comfort when Xyler was there.  I feel so blessed to be the mother of my 4 wonderful kids and for my wonderful hubby.  I love them very much!  I am also thankful for my mother and all that she has done for me.  Motherhood is not the easiest job but it is the greatest job!  I can't think of anything better than when your child gives you a hug and a kiss and tells you that they love you. 

 

 

Happy Mother's Day to all of you wonderful mom's out there!!!!

 

 

Spiritual Giants

Saturday, April 13, I was able to go to a luncheon for heart mom's.  It was a great lunch filled with great people and speakers.  I love the feeling of unity when I am around other heart mom's.  We can get together and talk all of the medical talk and everything else that goes with the heart journey we all go through and we all understand how hard it is.  What a special thing to have.  I feel very lucky to be apart of the Intermountain Healing Hearts.

Tiffany Peterson was the guest speaker and I loved everything she talked about.  I really wish I would have been better prepared with a pen and notepad and taken notes.  She called us "Spiritual Giants".  This really effected me every time she would say it.  I think as a mom you always have your moments of feeling lacking in everything that you do for your kids and family.  This feeling can get intensified when you have a child with a CHD.  I have many moments of wondering why Heavenly Father thought I could handle this trial because I feel like I am failing on keeping my self together let alone take care of everything that I need to.  I am constantly worried that I might miss something with Xyler that will be life threatening or that I'm not giving my other kids the attention they need.  Hearing Tiffany call us Spiritual Giants gave me a sense of pride for what I have and will endure.  It made me feel like I can make it through this no matter what happens.

This heart journey is not easy and I don't know if it ever will get easier but I am grateful for the blessings and lessons I have learned because of it.  That is one of the things she talked about.  To look at what this journey is teaching us.  I feel like I have grown and learned a lot in these last 17 1/2 months.  I still have days where I struggle with everything but I also have days where I see the many blessings I have been given and it makes it all worth it.  I think any parent will agree that anything you have to go through for your child is worth it.  I love my kids so much!  I learn from each of them in many different ways.  I feel so blessed to be their mother.

Heart Cath

I realized I never did an update after Xyler's heart cath.  He had it done on Dec. 20th and everything went well.  They found the narrow area and were able to stretch it out with the balloon.  The hope is that it will stay stretched out so that he will have a few more years before needing the pulmonary valve replaced.  If it begins to narrow again they will go in with a cath again and try to stent the area.

Xyler had to spend the night in the hospital just for observation.  He did have to lay down and keep his leg still for 4 hours after.  He was a champ!  He was awake but in a daze during this time.  Scott and I took turns standing by him, holding his leg still.  When the 4 hours was up and I let go of his leg he instantly moved around and sat up.  He was ready to move.  He was tired but wouldn't go to sleep because he wanted to see everything going on.  That kid amazes me more and more all of the time.

I have some pics but for some reason I can't upload them right now.  I will try later.

The Call

Last week Xyler's cardiologist called to let me know what they had decided to do for him.  They believe that a trip to the cath lab should work.  What a relief this was for us, that Xyler will not have to go through another open heart surgery right now.  I just couldn't bare the thought of him going through that for the 3rd time in only less than 14 months.  What they will do instead is go through an artery with a catheter and balloon the area that is narrow.  They will see if it will hold after they stretch it out.  If not, then they will put in a stint.  This is still a dangerous procedure but a much less evasive one.  If Xyler is one of the first one's for that day and all goes well, then he should be able to go home that same day.  If he has it done in the afternoon then he will have to stay overnight. 

He goes in on the 20th for this procedure.  What a busy, stressful Christmas this has already been for us and still will be.  I just hope I can get everything done that I need to before the 20th so that I can just worry about taking care of Xyler and my other kids after.  We are just having a nice Christmas at home since we don't want to take Xyler anywhere.  We are pretty much home bound throughout the flu season anyway with Xyler.  His little body seems to catch everything and it has a harder time getting over sickness too.  We love when people stop by to visit but ask that anyone who is sick to please not stop by while you are sick, or if anyone in your family is sick.  Thanks!

This year money is super tight for Christmas.  It seems like everything just wants to go wrong for us and we can't seem to get our heads above water.  If anyone has any good helpful ideas or tips on Christmas gifts that don't cost much I am all ears.  I really want to get my shopping done by next week but have only done a little bit.  I am getting my tonsils out on the 26th so I am really trying to have everything super organized since it is such a busy month for us.  I would have held off on getting my tonsils out because of what we are going through with Xyler, but my deductible is met so it will be so much cheaper to get it done now.  I guess the bright side of it, is that I will hopefully lose all of the holiday weight and a little bit more.  :)

I am asking anyone who reads this to please pray for my son and our family, but I also want to ask you to please pray for my friend and her son.  He was born 15 weeks early back in January and was in the hospital until Sept.  He has some health issues so he needs constant care.  He has also had a few eye surgeries but they were not able to help one of his eyes, so he is blind in that eye.  My friend just found out, by her being insistent on them running more tests since she was listening to her mommy instincts, that he has 3 huge tumors on his liver.  He is starting chemo and they have put him on the transplant list.  Please pray for this sweet boy, his mom, and his family.  His name is Easton and he is a little cutie.  They have been through so much already and my heart just aches that they are having to got through this too.  I love them dearly and pray that Easton will get the care that he needs and that his body will grow strong and healthy.

I am really having a hard time with how so many kids have to go through so much.  It is so hard as a mom to have to watch your child suffer and to not be able to do anything about it.  I hate the overpowering feeling of such helplessness.  I wish we could just kiss these "owies" away.  I know that there is a reason for everything, I guess I'm just struggling with the not knowing the reason while it is happening.  If only we could look down the road and see that things will be for the better, but I guess we would never learn and grow if we were able to get a peak of the future all of the time. 

My kids are super excited for Christmas and we are trying to do fun things for it.  I admire and love all of my kids and am so proud of each one of them.  Xyler has been through so much and has shown so much strength in his first year of life.  My other kids have also been through so much and have shown strength also and so much love and concern for their baby brother.  I have felt like such a failure of a mom this year because it has been so hard for me to divide up my time with all of my kids.  My oldest two are the ones who end up with the short end of the stick.  They are amazing kids and thank goodness they love me even with all of my faults.  I love my hubby and kids so much and am so grateful for them! 

The last few weeks we started to notice Xyler having some symptoms that were concerning.  A couple of weeks ago we decided to take him down to Primary Children's(PCMC) ER and have him checked out since they have a cardiologist on call.  It was my hubby's weekend off and that is why we decided it would be a good time to take him.  Xyler had been acting different and had become whiny and clingy.  His face started looking puffy so I was worried that he was retaining fluid.  My hubby fed him a bottle on the Saturday that we took him to the ER, and he started sweating while drinking it.  These are all not very good signs. 

At the ER they took an x-ray and compared it to his last one, which was in September.  They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time.  When they weighed him it showed that he had gained over 1 lb in less than two weeks.  I know this because he was weighed at his 1 year check up less than two weeks before.  They sent us home and told me to follow up with his pediatrician and his cardiologist.  I left there feeling uneasy.  I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.

The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold.  He ordered an x-ray and some blood work.  He also talked to Xyler's cardiologist to see if there was anything else he wanted done.  The BNP blood work was elevated.  I was told this meant that he had congestive heart failure.  We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.

The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him.  Xyler had the echo yesterday.  We found out that there is a problem.  The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries.  They figure it is from scar tissue.  This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it.  His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option. 

I am hoping to find out today their decision.  I am going crazy while waiting.  Either option is scary but the cath lab is the easier route.  I am just hoping for good news.  It is so hard to have to watch my child go through this and feel so helpless.  To have to hold him still while they try to put in an IV and have him screaming the whole time.  I can't bare the thought of Xyler having to go through another procedure so soon.  At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery.  I just want my child to get a break.  To get to be a normal child with his heart working fine with no problems.  You wouldn't think that would be too much to ask for but in the heart world it seems like it is.  It is so hard and sad to see so many heart kids who have one issue after another.  These kids go through so much and are so strong.  I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.

One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough.  I am so thankful for his ped. doing more to make sure nothing was missed.  If this wasn't caught so many other things could have been damaged because of it.  I am thankful it was caught and can be fixed.  When we find out how it will be fixed we will go from there.  PLEASE...let them tell us soon.  I hate the waiting!

Birthday Time!

Yesterday was Xyler's birthday!  It was a great day to celebrate him turning 1!  One year ago I gave birth to a handsome baby boy whom we thought was healthy.  It was my easiest labor and delivery.  2 small pushes and he was out, but my dr says technically it was one because he was holding Xyler back because he wasn't ready to catch him yet.  :)  Xyler had the cord wrapped around his neck twice and was really purple and having a hard time breathing.  He seemed fine after he was cleaned up.  7 hours later we watched as life flight took off with our baby boy, not fully understanding what was wrong with his heart and not knowing what his future held or if he even had a future.

Now look at him!  He is 1 and doing so well!  He will pull himself up now and walk and is super speedy at crawling.  He likes to get into the dog dish and toss the food everywhere.  This boy is super busy now and gets into whatever he can.  I think he is making up for all of those months that he didn't have the strength to do much before his second surgery.  Now, you would never know that he was born with a CHD and has had two OHS's.  He is my hero.  I have learned so much this year from our experience with Xyler and what he has gone through.  I learn things from each of my children as they grow since they are all different, but with Xyler it was a lot in one year.  I have learned more about love, faith, enduring, and trusting.  I have also learned more about the heart than I can remember learning in physiology, or maybe I should say I paid more attention this time when learning about it.  So many other things but I won't go into them.

We are truly blessed to have Xyler in our family.  He is such a fun, sweet boy.  We all love him so much!  It was a great day yesterday and I can't wait for more of his birthdays to celebrate.

 

We got Xyler a heart cake to celebrate his birthday and his heart.

 

As you can see he was loving the cake.  :)

 

I love it when he pulls this face!  So cute!

 

 

Xavian seems to think that Xyler's new toys are his.  When I give it to Xyler to play with Xavian get's mad and says "Mine". 

 

Another of him eating his yummy cake.

 

He was having fun trying to grab the whole cake.  It was a great day!  :)