Code Blue

I thought I would open this crazy blog today with some sweet pictures!

Pretty girl wide awake! Thankfully her clothes are hiding all of her monitors!

Sully and Pink Bear watching over Karter

Hey guys what are you doing??

This should be about her stats; however this read is with oxygen being pumped into her body. Her oxygen level in this picture is 92, they would just like for it to stay in the 80's and go no lower than 75. One day it will read 100!!!

Mommy and I rocking....too bad I am not sleepy!

Today was the day we were suppose to be going home; however, God was watching his little angel and had other plans in store for us today!

So the bags were packed, packets turned in, and the medicine was in the cooler, the only thing missing was the final signature of our nurse on our discharge papers and for Karter's monitors to be pulled off (they save these till right before you walk out the door). While we were waiting on the nurse to come in the room to finish our process of discharging us I feed Karter that way she would have a full belly for the ride home. As I did this her PCT (Vitals Tech) came in and made sure that her blood pressure was good and fixed all of her cords so that they could get accurate vitals for the final few minutes of her stay. Upon finishing her bottle I tried to burp her; however, she was having one of those times where she only burped just a little bit. Therefore we decided it would be best to lay her on her side to sleep so that she would be better able to burp if she needed to. It is not uncommon for me to lay her on her side to avoid getting a flat spot on her head, plus she loves to lay this way and it seems to help with her nose congestion. As we were waiting on the nurse Terri and I both noticed that her stats were dropping into the 60's and pretty much staying there. Since they have someone to monitor her stats at all hours we decided not to bother her but let her be and ask the nurse if we needed to allow her to lay like this at the house or if it could cause her to loose oxygen laying like this. About 10 minutes later the nurse walked into the room saying that she was going to grab our discharge papers and be right back. She apologized for it taking so long but she mentioned that she had to discharge another patient and had done them first. (This is where we believe God had intervened for the day) Before she left I asked her my question concerning her laying on her side. She said that she would call the doctor but before she did that she wanted to see if her stats would turn to normal if she laid her on her back. She turned her on her back and low and behold they did go back up. She then proceeded to lay her back on her side and her stats began to drop. Since we knew that she was keeping her stats in the norm when on her back she turned her back to her back before she was going to make her call to the doctor to ask what could be causing this weird reaction. MIND YOU KARTER WAS STILL ASLEEP AND LOOKED VERY PINK! SHE WAS IN NO DISTRESS NOR HAD SHE BEEN PRIOR TO THIS TIME.

After returning her to her back Karter then started to go down hill. Her oxygen level began to go down and down so the nurse called her charge nurse. By time the charge nurse arrived Karter was clearing in the 50's so the charge nurse asked for a resident to be called in, by time the resident was called Karter was in the 40's. This set off another chain of reactions from the Children's Miracle Crew, they then pulled out the oxygen mask from the wall and put in a code blue. Karter's oxygen was now in the 30-40's and it was not coming up. We were in a full fledged Tet Spell. The Code Blue crew we began to find out involved a respiratory team, the CRASH CART (which was specifically asked for by the charge nurse), the cardiac team from the 8th floor, our cardiac doctor, the ER crew, and the ICU Cardiac Crew. All of these people were in the room in just a matter of seconds of her giving a code blue page. In the meantime the nurses were trying their best to get Karter oxygenated. When the doctor walked in he took over and began doing his tricks to handling a Tet spell. His drug administrator grabbed Karter's dosage chart off of the wall so that she was prepared for dosage of medicine for CPR. When she grabbed this sheet we knew it was bad, well and the fact that a PRIEST was called into the room to console us! After about 15 minutes they were able to get her under control with some oxygen. The doctor then explained to us that she had a Tet spell and that obviously we were not going home today. He told us that they would be trying to up her medicine and see how that worked.

So as of today we will not be coming home until they can officially regulate her medicine. A doctor did come in later this afternoon to check on Karter and I asked if having these Tet spells were common while they were sleeping and calm and he did share with me that they were not common at all. The spells are generally set off by becoming distressed. He also shared that our main cardiologist would be giving us more information tomorrow. So for now Karter is on oxygen and doing good. They did try weaning her early this evening and she just could not tolerate it so they put her back up on 5 liters at 40% which is not bad but is not necessarily good either. They will probably try to start SLOWLY weaning her late tonight or early tomorrow morning.

We are very thankful that we were not discharged first today and can only thank the power of prayer and the grace of God that we were chosen to be discharged second. Had we have been discharged first she would have had the spell on the way home and there is no telling what could have happened. Thank you everyone for your thoughts and prayers!

Please continue to share Karter's Bow of Faith!

Love,

The McHams

Putting the books down...

Karter once again is defying all of the odds! She is now breathing better than ever, she has been breathing in the 90 oxygen percentile most of the afternoon all on her own. I use to read books, tons of websites, and other articles on her conditions but I believe that I am done for the most part with my reading. I know that most of the things they write and journalize are for the "typical" or what they call standard down syndrome child and that not everything in there will pertain to Karter; however, the more I read the more I realize that she is definitely her own person! She rarely follows anything that the book says. She is such a fighter and I believe she is going to be the one that proves some of these doctors wrong. She already has proven to me that nothing is impossible! Every time the doctors come in to tell us something it is like they tell us the worse cause scenario. I understand that they do it to prepare us for the worse but every time they do Miss Karter proves them wrong! This may be the only time I will allow her to challenge an adult! I love it when she does this and proves that they do not really have an answer for everything because some things are left to the Lord and the power of prayer. I think that Karter and I are going to write out own book someday cause she is breaking all the rules! I may need some help with my grammar though and spelling if you guys have not noticed! ;) Oh and help with some of this medical terminology!!!

Anyways enough of my tangent! WE ARE GOING HOME TOMORROW!!! (Knock on wood!) I am so ready to see Addison! We did get to Skype with her tonight and loved it! Miss Addison went to gymnastics today at Gym Tyler and from what I heard she did an A-M-A-Z-I-N-G job! She is such a little hunny sometimes...that is when she is not being the Tasmanian devil! :)

I am about to go shut my eyes now! Thanks so much for all your thoughts and sweet comments! We truly do appreciate everything that you do!

Love,

The McHams

The Eighth floor loves Karter Bear!

So Karter was welcomed to the eighth floor today! They have decided that she had what they call a "tet" spell today. A "tet" spell is caused when the valve leading out of her right ventricle (This is the valve that is too small and it part of her tetralogy of fallot) spasms. This spasm shuts the valve and does not allow the blood to flow through it properly to the lungs. These spells are pretty common in Tetralogy patients although the severity of the spells can vary. The spells can be caused by too much stress or any sickness. They believe this spell was caused when she was deep suctioned at the ER the other morning. While getting suctioned out the other morning Karter through a pretty big fit about three or four times due to them sticking her with the suctioning machine. The stress from the situation caused her pretty serious "tet" spell.

When we go home this time we will be on an heart medication. Up to this point we have been really lucky that we have not had to be on any medication. They have put her on Atenolol which will help with her spasms and it will also help regulate her blood pressure. This medicine will have to be administered twice a day. There still has been no word on if we will have to take home a monitor or not. I kind of would like to have one at home to check her oxygen every now and then. I do not want to have to keep her hooked up all the time but it would be nice to have something to measure her oxygen level with at home.

As far as surgery goes it will still be later in the summer or early fall. We will find out more information on an estimated date tomorrow. So as I go to bed tonight Karter Bear is doing great still, she is finally off of her oxygen cannula and as long as she can stay off of that for 24 hours we should be ready to go! The Nurses on this floor are just as wonderful as the nurses on the 3rd Floor. They all love our Karter Bear and care for her as if she was their own. Children's Hospital is the best hospital we could have ever asked for to care for our sweet angel.

Thank you all for your kind words and prayers! Please continue to pray for her heart to be as sturdy as it can be until her little body is fully ready for surgery! Please also keep the patients of the 3rd floor (Cardiac ICU) in your prayers for as we left the floor today their were still a few very serious cases that need our prayer! I thank God everyday that at least Karter has a heart that can be patched up!



Love,



The McHams

The grace of the Lord is upon us!

Okay sorry I did not make it to the blog last night but yesterday was another incredible day! First off Karter gave Jeremy the best birthday gift ever! She came off of her breathing tube!!! They did have to put her on some oxygen through her nose in a tube called a canula. She at first did not seem like she was going to be able to tolerate being off of the breathing tube but with three changes to her camelot and with a small breathing treatment it worked! They did have to give her a steroid to strengthen her lungs but other than that she is pretty much breathing on her own! YEAHH!!!!
Now as far as what caused everything they are calling it a "tet" spell which has not really been explained to us but as soon as I find a doctor I will get more information on that! I believe it has to do with her tetralogy of fallot heart defect but as soon as I know more I will let you know! I am just glad that it was nothing to do with her respiratory system but instead was just an effect of something that was already wrong.
She is on some heart medication now that I believe she will have to continue at the house. While we were at home these last few week she did not have to be on any medicine but an iron vitamin. This to me was in itself a small miracle! I mean to have so many problems with her heart and essentially a small hole in the center I can not believe that she has not had to have any medicine until today!
As far as eating...she did get to eat last night. They started her off with some pedialyte and then moved her back to breast milk through a bottle. SHE LOVED IT!!! Now she is back to her normal self, eating, sleeping, pooping. I just love it!
Now we are just waiting on the doctor to come in and let us know what is going on exactly. I am still at this point if we will have to stay here until her surgery or if we will get to come home. I really think that with as well as she has been doing that we will be able to go back home for a while before surgery, but then the big question comes in as to when they will do the surgery...that is still up in the air at this point in time. I think they are now waiting for her to get up to at least 10-12 lbs and just a little bit older before they are comfortable enough that they will get a good repair. If they go in and repair now they said that they could fix it but it would not be a repair that they would feel like would hold her for a long time which would mean more surgeries. The Doctor once explained it to me like this: Right now her little valves that they would be operating on are not much stronger than tissue paper, so going in and cutting on them and sewing them back up would give them almost a temporary fix but would still be a hard surgery to complete to the the delicacy of her valves. Once she is bigger and older those valves start to firm up which would lead to a better complete repair.

THIS JUST IN!!! WE MAY BE MOVING UP TO THE EIGHTH FLOOR!!! AS SOON AS I KNOW MORE I WILL LET YOU KNOW! THE EIGHTH FLOOR THOUGH IS EVERYONES' AIM HERE AT CHILDREN'S!

Thank you everyone for your support and prayers for Karter Bear! Please continue to pass on our project Karter's Bow of Faith so that we may also help the other children up here! As soon as we know more on our possible big move today I will at least get it posted on Facebook!

Love,

The McHams

God is AMAZING!!!

The power of prayer is so wonderful! Yesterday Karter was all over the charts with craziness and today it was like a whole new world! SHE IS DOING GREAT! They have taken her off of all her meds except a little dose of antibiotics (as a precaution) and some pain medicine. Her intubation tube is still in but they have began to ween her from her oxygen and hope to have her off of her breathing tube by tomorrow. That's right TOMORROW! Today has been blessed with nothing but good news. They are still waiting on one virus test to come back but so far all of the others have been negative. They still have no clue what caused her "little" episodes yesterday but hopefully they will have more insight as they continue to monitor her over the next couple of days. So for now we are still playing the waiting game. Since she is off of her paralyzation medicine she did wake up a few times today while we were in the room. It was so uplifting to see her eyes full of life! Tomorrow after they pull her breathing tube and if her stats go up we will get to hold her again!

As I leave out tonight I would also like to make a small post about our new friends we met today! We have heard two other incredible stories today of babies fighting for their life. While Karter;s journey may be scary at least we know that in the end it CAN BE FIXED; however, for our new friends it is not so simple. We ask that you pray for baby Bella, for she went into surgery thinking that the doctor were going to be able to repair her and came out with a temporary fix. She eventually will have to have a heart transplant, which is not what her family was expecting to hear. Please also pray for baby Cohen as he is fighting hard for his life. He is only FIVE DAYS old and has already had three surgeries on his heart. He is truly an inspiration!

I can honestly say that although it is heart wrenching for me to watch Karter go through all of this I still feel so blessed. She could have always had a worse heart defect. I am so thankful that God put this angel into our lives and showed us into this other world of sick children. I have meet so many amazing people throughout this adventure and I can not wait to meet even more! Please continue to pass on Karter's Bow of Faith! WE ARE NOW ADDING SOMETHING FOR BOYS AND NEEDING DONATIONS OF BEANIES for them to wear! I am truly touched by the generosity and out pour of kindness for this cause! Thank you all so much for being so great to these children and to us!

Love,

The McHams

Karter's Bow of Faith

Okay ladies listen up! I am starting up a collection in HONOR of Karter for the little girls here at Children’s Medical Center. Upon walking into Karter’s room yesterday all I could see were machines, tubes, and lines hooked up to my precious angel. However, last night she was given another bow to put onto one of her wires….This changed everything!!! You would not even imagine the difference seeing a bow made on my little girl. Instead of seeing the wires and tubes I just saw a sleeping beauty. The bow made all the difference in the world to me and made me realize that she is still my baby girl!

So with this discovery I have decided to start up a collection in Honor of Karter called Karter’s Bow of Faith. I am asking for all donation of bows of any size, shape, and color! These bows will be given to the girls at Children’s Medical Center. You can mail them to me or we will pick them up. I will be attaching a little prayer to each bow and will even attach your name if you would like. Please help me help other families see their sleeping beauties amidst all of their medical problems. I know that by receiving these bows we will be lighting up the life of lots of little girls. Please pass the word and contact me with any questions here on our blog or on Facebook!
Thank you so much for your time and consideration! With your help I know Karter’s Bow of Faith will be a great success!

Love,
Tara McHam

P.S. We will have a P.O. Box for you to send all bows to! Thanks!