Monday, April 30, 2012

Wish us luck...

Jacob is having a scope tomorrow morning at 7:30. They will be looking to see how his airway is healing. If everything looks good they will put in a smaller vent tube to allow for more room in his airway.if they think it looks good enough they will extubate him on Wednesday. He is starting steroids tonight to help with any inflammation in his airway. If they decide that he can be extubated on Wednesday they will begin to power ween him off of his sedation meds and the vent tomorrow. Please pray for his comfort because he is on a large amount of meds.

They started giving him anxiety and pain meds through his tube to help prepare him for the transition but it is going to be really rough. To give you an idea he had 33 rescues yesterday. A rescue is basically a large dose of the meds he is also on continuous by IV. So he is getting three meds through iv plus needing rescues almost every hour and getting them through tube. Even with all of this he is STILL waking up every hour or two and aware enough to squeeze my hand and try to open his eyes. He is also cracking up his nurses because he keeps kicking his leg up into a figure four position which is what he does at home too. I hope the fact that he is still waking up through the meds will mean his weening will be easier. Meds or not he is going to be pretty ticked off when he wakes up.

The good news about extubation is I can hold him again! I hold his hand all of the time but it is not the same. Jacob will also have to learn to breathe, swallow and eat again so please pray he doesn't struggle. It is going to be a rough few weeks but my baby is a tough cookie and I know we will get there. I have some cute pictures of him with a Mohawk that his nurse and I gave him but I am on the iPad so I will have to put those on tomorrow's update.

I also was able to get away for an hour and have coffee with some other heart moms tonight. Andy watched Jake and it was so great being able to hang out with them for a while. I met Katrina the other day, she was so sweet and brought us a goody bag to help with the stay. Her son Stosh has been having issues with his oxygen levels and medication. Please pray the doctors can figure it out so they can get out of the hospital. Stacie I had never met in person but chatted online with. It was great getting to finally meet her. Her son Kellen was here because he had a respiratory bug and was dessatting. They should be able to go home tomorrow! Thank you ladies for getting me out even just to another floor for a while. It helps especially talking with people who walk this journey every day. Wish us luck with the scope and week ahead. I will update tomorrow!

Sunday, April 29, 2012

Day 5... Holding Strong.

Jacob has been doing much better.  I actually slept until 10:30 this morning! I walked by the clock when they were doing rounds and blinked thinking I must have read the clock wrong. I don't even sleep that much at home. He did not desat at all yesterday which was wonderful. He is still needing rescue meds pretty often. The attending actually joked this morning that if he keeps it up he will just have to go to another hospital because he is chewing through all of their meds lol. I love the staff here they have been wonderful. Today he has been going longer between needing rescue meds which is great. Yesterday he was waking up every 40 minutes and trying to open up his eyes and move around. It is such a balance between to little and two much.  His Oxygen and Heartrate have been great. He was even satting around 87 last night which is beautiful.

Jacob's Monitor. Holding Steady.
They added oral meds (Valium and Morphine) through his g-tube to help with sedation and to get ready to transition him and ween him off of the IV meds. He currently is on 6 different sedation meds. He is on Fetynal, Dex and Versed through his IV as a continuous drip. When he wakes up he gets "rescue meds" which is basically a big dose of the same meds he is on by IV. Yesterday they added Penebarb which is another sedation med. The day before he had desatted while getting the Penabarb so I was incredibly anxious when they were going to try it again but he has been fine on it. We think the desatting/bagging he had the few days before was more positional because 2 out of three of the times it happened they were changing his bed and he was rolled onto his side. Now when we change his bedding the nurse lifts him up while I move the bedding and put new bedding under him. It has worked much better. He is on a lot of drugs so he will be weened next week and we expect him to have some withdrawal issues so it will be a daily weening process off each drug.

Meds, Meds and more Meds...
Yesterday he was way more aware of his vent. He kept waking up and scrunching his nose and moving his mouth. He wants it out. I don't blame him AT ALL. They took the penrose drain out of his neck and ENT said the incision spot looks very good. He has about a 2" incision by his rib and one on his neck. More scars for him to show off to the girls when he is older.

They had to put in another IV last night because it went bad again. Poor kid has had so many it is hard to get them and keep them. He has 2 IVs and one Art line so three of his extremities are being used. His arms are still tied to the bed and will be until he is off of the vent. I can't wait until he comes off of that thing so I can hold him again. I miss holding my baby boy. He is very aware that we are here and responds to our voices.

My sweet boy resting. 
The plan is that Jacob will go into the OR on Tuesday and they will see how his airway is healing. If it looks good then they are going to put in a smaller vent tube to allow for more room in his airway and give him steroids to help with swelling. If everything looked good then they will extubate him on Wednesday and begin to "Wake him up". After that then we will be working on weening him off of the medications and teaching him to use his airway again. I am hopeful that he will still have the want to eat because every time they do oral care on him he tries to eat the sponge. Basically since he is on the vent he is not swallowing and they don't want bacteria to build up. So they swab his mouth with a mint antibacterial solution that will clean and moisten his  mouth. Every time they do it he chews on it and licks his lips.

We had a really nice visit yesterday from another heart mom who was here with her heart warrior. She brought us a care package full of snacks and things for Aidan to play with. I can't tell you how much it meant to me. I have said it before but its worth saying again. I would never have chosen this path of being a heart mom but I am proud to be a part of such an amazing group of women. Despite what they are going through they always are there for each other. It is really amazing. Thankfully her son Stosh was able to go home yesterday! Praying he continues to do well.  

Jacob's cardiologist from home called last night around 9pm. We have the best doctors in the world. What doctor takes time on a Saturday night to check on one of their patients who is out of town? Dr. Heydarian, that's who. He wanted to know how his buddy was doing. Love that man. His pediatrician Dr. Shields has also been checking in on him by messaging and facebook. We are so blessed. I really love all of his doctors and love how much they care about him.

Aidan with Jacob's Nurse Jenna. She is his favorite.
Aidan has been giving all of the nurses and doctors ninja stickers. It is so adorable. All of the nurses are walking around with stickers all over them. He is so excited to teach them about Ninja's. They love him and he has been having so much fun. I am so proud of him for how well he handles everything. Every once in a while he goes over to Jacob's crib and tells him that he loves him and can't wait for him to feel better.

I think you need more stickers Jenna. 
I got the picture from CHOP that they had taken of us dropping off the Sisters by Heart Care packages to the SDU.

Fellow Heart Sister Christa with her daughters Kaileigh and Gabby,
Jacob and I, Our fetal Coordinator Denise Donaghue who I adore and my mom
delivering packages to the Special Delivery Unit at CHOP. 
It warmed my heart to see Jacob smiling in the photo. I can't wait to see my baby smile again. I know we will get there.    

One day at a time...                                                                                                                                                                                                                                                                                                                                                                                                                                             


Friday, April 27, 2012

Having a rough go of it...

Jacob has had a very rough few days and we appreciate any prayers sent his way. He has been having a very difficult time balancing sedation. Yesterday he was waking up every hour and thrashing. It took two nurses and myself to hold him down. His arms are tied to the bed for his own protection. They were upping his doses of meds every hour but he continued to need rescue meds to knock him out.

Two of the times he got the rescue meds he desatted down very low and needed to be bagged to be brought back. One time his oxygen levels went down to the 30s but came back up pretty quickly. The second time he went down to the 40s and it took a little longer. His lips drained of color before the machine picked up on his desatting. I told the nurse he looked purple and then right after I said that he started going down. I was very scared because the color just drained from him before my eyes.

As the day went on the more worried I got. His eyelids got very swollen and his color didn't return to his lips. I told the attending that I was very uncomfortable with the direction he was headed and wanted cardiology to come look at him. They had been consulted by phone but I wanted someone to physically see him. Most of the day he was breathing over the vent and he was set to 40% oxygen vent setting, his sats were stable in the 80s which is great for him. As the day went on the vent settings increased and he continued to go down in SATs. At one point he was set to 100% oxygen on the vent and still satting in the 70s. I was very uneasy and cardiology was called to come take a look.

He is in the PICU not the CICU because it is not a cardiac issue so he needs to be down here where they are used to dealing with airway issues. Last night around 2am we had about 10 people around his bedside for about 2 hours. The PICU attending and fellows, respiratory and the cardiac fellow all watched him to make sure that he was coming back to a safe place.

He had a chest x-ray which showed that the lobe of his right lung was partially collapsed. They agreed to give him a dose of lasix to help with his puffiness in his face. They also paralyzed him and moved the ventilator up 1cm to allow for better airflow to the right lung. He was also given aggressive PT to try and break up some of the junk in his lung. The doctors decided to go down on his sedation because although it put him in a more comfortable place it was affecting his blood pressure and vent settings. He was too sedated.  It has become a very fine line and a balancing act between keeping him comfortable so he does not wake up and thrash around but also keeping his pressures where they need to be and not over sedating him. Unfortunately it will be a week of this back and forth. We just need to get him through this week.

I had not slept in about 3 days so my mom and Andy kicked me out and had me go to the Ronald McDonald house for some rest. I did and was able to get about 3 hours and a SHOWER! When I got back Andy met me by the elevators and told me that he desatted again to the 40s. This time it took them at least 2 minutes of bagging and changing the vent settings to get him back up to where he needs to be. His baseline o2 is 83 so 40s is way too low, scary low.

I knew this would be a hard surgery but I really didn't expect him to have this hard of a time with the sedation. I figured he would be knocked out all week and be able to heal. It is scary when he thrashes around because he can damage the airway that they just operated on. Watching the color drain from your babies face and not be able to help him is not something any parent should have to see especially over and over again. But he is here, he is fighting and I have faith that he will get through this and things will get easier.


On a more positive note, midst the chaos yesterday I was able to work with Child Life and get Jacob's Beads of Courage started. Beads of Courage is a charity that provides beads to children with serious illness. Each bead represents a different surgery, procedure, test, needle stick or milestone. It is to help children with anxiety and give them something to look forward to and cherish. The beads tell their story. Here are some pictures of Jacob's beads so far. I am sure I missed some but I am amazed at how much our little angel has been through so far in his short little life. I am beyond proud of my warrior.

Aidan has been amazing through all of this and is so sweet to his brother. Every day he leaves and says "Bye brother, feel better I love you!" I am so amazed by both of my boys. They are perfect and I am so blessed.

Please continue to pray for my beautiful little heart warrior.


Wednesday, April 25, 2012

Resting Comfortably

Jacob had his airway surgery today. We had hoped that he would be able to have a less invasive procedure and have it done endoscopically but they were not able to cut through the scar tissue because it was to thick.

They let us know they had to do the complete airway reconstruction. We were disappointed because we knew this meant a harder recovery for our beautiful boy. We knew this would be a huge possibility though. The surgery was supposed to take 5 hours but thankfully it only took 2 and half. He did very well during surgery. They took cartilage from his rib and built a graft in his airway to open it up. He is now in the PICU resting.

We spoke to the surgeon and she said that he did very well and the plan is to keep him sedated and on the ventilator for about a week. Sometime Tuesday through Thursday they will take him to the OR and do a scope to see how he is healing. If everything looks good then he can be extubated the next day. That is when the hard part begins. Jacob may have withdraw issues from all of the sedation medication. He will also need to learn to breathe, swallow and eat all over again. His voice will be very hoarse for a while and he will need speech therapy (Which he already gets once a week). It will be a long road but the hope is that Jacob will be able to breathe better and won't have the stryder (Loud noise while breathing).

The incision in his rib is very painful and he had a drainage tube in his neck and his rib right now. They should come out in a few days. Please pray for comfort and a quick recovery for my sweet baby boy.

If Jacob does well the next few weeks and doesn't have any setbacks we may be able to leave in 2 weeks. He will need follow up scopes to check to make sure the scarring doesn't come back. The surgeon said in the single stage airway process like Jake had done she has never had to repeat it. It usually works and they do well.

I have been sitting by his side and he just woke up. It broke my heart. I had to hold him down while the nurse gave him medication. He has two nurses right now so the other nurse held him down as well. My sweet baby had a single tear fall from his eye. He kept signing "All done" over and over while looking at us and struggling to move and get the vent out. He was also coughing but it is all silent because of the vent. It broke my heart but I know that he won't remember any of this. They gave him more medication and he is now resting comfortably again.

Good news we got today was Ronald McDonald House had a room for us so Andy, my mom and Aidan will have a place to stay.

Thank you for all of the prayers, please keep them coming!


Tuesday, April 24, 2012

Tomorrow is the big day.

We had another long day at CHOP. Today Jacob had a hearing screen and a heart echo. Everything went well. His hearing screen was not concerning at all. He responded to all of the voices and louder noises. He had a harder time with the lower sounds but he is a very noisy breather so that is probably why. That and they said it was typical for 2 year old because they have a shorter attention span. He can definitely hear. We will get another test done in 6 months or so when he will hopefully be quieter because his airway will be fixed (fingers crossed). He will also be older then so it will be much easier to get it done. 

After his hearing screen we went up for his heart echo. We didn't have a appointment to meet with the doctor we just had the echo so I assume everything looked good.

When we were done with the tests we had a quick lunch downstairs at the cafeteria and then grabbed the Sisters by Heart care packages to deliver to the Center for fetal diagnosis and Treatment at CHOP. That is the delivery unit that Jacob was born in. We met a fellow heart sister up there and both dropped off the packages to be given to families who are in the Special Delivery Unit and those who go to the center to get diagnosed. Seeing all of the pregnant mothers there brought me back to just 2 short years ago when I was pregnant and full of fear sitting in that waiting room. I can't tell you how amazing it was to see my beautiful little warrior running around that room and climbing on everything, full of life! I hope we were able to spread some hope to others just beginning this journey.

Speaking of my Heart Sisters, they put together a coffee travel mug full of goodies for me and Jake. Thank you ladies I love you all so much!

We have to be at CHOP at 6am for surgery. It is going to be a long day! I will be getting up at 4am to give Jacob his morning medication and we will head to CHOP around 5:20 or so. We are staying across town tonight. Tomorrow I will stay with Jacob at the hospital. I am not leaving his side. We still have not been able to get a room at the Ronald McDonald House, they have been booked. Please pray they have an opening soon because my mom, Andy and Aidan will need a place to stay. We have this room tonight and tomorrow but after that I am not sure what we are going to do. I am going to call around and find the lowest rates but even with discounts it cost a lot of money to stay in the City and we can't do it for long.

Jake has discovered how to open hotel doors. I was looking for a number to call CHOP for his surgery time and I heard the door close. I ran out and Jacob was running down the hallway. Thank GOD I was right behind him. Now we know that the latch at the top of the door has to be on at all times. He was also opening every door to the doctors offices at his appointments today and running away. He hates the hospital and has had a bunch of anxiety with his appointments this time around. Can't blame the kid, he is no dummy.

A really exciting thing was tonight he walked over to his pack and play at the hotel and signed sleep. As he was doing that I saw his mouth moving. I got closer and could hear him saying "Nigh Night". It was very low like a whisper but he was saying the words. I see him trying to talk a lot and always thought he was just baby talking but I wonder how many words he is actually saying but we can't hear him because it's so low like a whisper. I am so proud of my baby.

Please pray everything goes well tomorrow. I pray they are able to get it done by the bronchoscopy and we could be home in a week! If that doesn't work they will do the complete airway reconstruction which will be a 5 hour long surgery. If he has to have that then I will most likely be here for a month with Jacob and Andy will take Aidan back to WV and come get us when we are able to come home.

I will keep everyone posted as often as I am able to.

Thank you for all of the prayers for my beautiful little boy. 


Monday, April 23, 2012

We have arrived...

We made to Philadelphia. My laptop keyboard is not working with me right now so I have to keep it short.

The ride up here was horrible. It poured the whole time so we were very thankful to get here safely.

Today we spent the day at CHOP. We met with cardiac anesthesia. Jacob then had to have bloodwork. His veins are so tiny and so used up it took forever for them to find one. Poor kid had heat packs on every limb and was crying so hard. After that he had a swallow study. I was so proud of him for eating and drinking everything they gave him. Everything looked great going down!

Tomorrow we will be getting a hearing screen done and a heart echo. Basically we think he is not talking because of his vocal cords but to be sure we are having his hearing tested also.

After the echo we are going to deliver a bunch of Sisters by Heart care packages to the Fetal Center for diagnosis at CHOP. I love being able to bring Jacob and drop off these packages full of goodies to make the hospital stay a little bit easier for families who are just beginning this journey. Most of all I love being able to watch Jacob spread Hope! I am also excited to meet up with one of my fellow heart sisters!

Jacob's surgery is on Wednesday. As of now we need to be there by 6am. If they end up having to do the major reconstructive surgery then he will be in surgery for 5 hours. Please keep him in your prayers.

I will update as often as I can but this keyboard is driving me nuts. I probably won't be able to update the blog until Wednesday night. The fastest way to get updates is through my facebook page. I can post updates on there through my phone and will as I can.

Click here to view my facebook page. 

Thank you to everyone for all of the support. Handing over my son for yet another major surgery is beyond difficult but I have faith that he will be ok.


Friday, April 6, 2012

2 Years Old and Saving Lives!

My little rockstar is 2 years old!

Jacob celebrated his second birthday on March 23rd. We had a great day and the birthday boy was super happy all day long. We sang happy birthday to him and he smiled and clapped while screaming yay! Aidan, Andy and I couldn't get enough of his beautiful laugh so we spent the day singing happy birthday over and over lol. We decided not to have a big party since he will be going to surgery this month so Grandma came over and we had a small party which honestly was perfect. 

Jacob loves Yo Gabba Gabba so I decided to attempt to make a "Brobee" cake. I have never attempted anything like this but I think it turned out good considering I had no clue what I was doing. The best part was it tasted amazing! Jacob ate every last bite of his cake and ice cream. This kid has quite the sweet tooth.

With the help of  his grandparents we got Jacob the complete second set of Baby Signing Times. It is one of his favorite shows and he has been doing so well learning sign language by watching it. The set included 13 dvds and 2 cds. He also got some new blocks and Grandma got him a sit-n-spin which he loves. 

The best birthday present was an email we got that day from his cardiologist at CHOP. She said that his heart looked great and they cleared him for his airway surgery. There was a little narrowing of the pulmonary artery but she said almost all children have this (hypoplasts). She said that they will do an MRI study and a cath prior to his last open heart surgery but right now his heart function is great! Music to my ears.

Personality wise Jake seems to have hit his terrible twos overnight. It is funny because Aidan never really threw tantrums. Jake wants what he wants when he wants it and if you say no, watch out lol. He throws himself to the ground and kicks and screams and scoots like a worm backwards. He has figured out that if he throws himself it could hurt so a lot of the time he will lay down carefully then start throwing his fit. Kind of funny how dramatic he is. It is really hard when we go out because he is not used to being out in public. He is used to being able to run around wherever he wants so he doesn't know boundaries. I tell him "No" and he immediately will cover his eyes and start crying. I know some of it is due to communication barriers since he can't talk because of his vocal cords but most of it is him just being a two year old. He has always been a little spit fire and I think that is what has kept him fighting.

Despite the tantrums I can't get enough of this amazing little boy. His smiles light up the room and he has this hysterical belly laugh. He has started to pull me to whatever he wants. He takes my hand and has me follow him then puts my hand on what he wants. He is doing very well communicating his needs despite all of his obstacles. It is also great because he used to hate when anyone would hold his hand. I think it is because he hates to be restrained and he has had so many IVs. He has been doing really well in therapy as well. His speech therapist said she is very impressed with his progress lately. Jake and Aidan have been interacting so much lately. Aidan is also getting to be very protective of his little brother. I love how much they love each other. My boys are getting so big. Aidan will be five on Easter Sunday. He is my Easter baby, he was born on Easter as well. The boys had fun dying Easter eggs this year. Jake lost interest pretty quickly but Aidan didn't mind dying all of the eggs for his brother.

Overall things are amazing. We leave for Philly in a few weeks for Jacobs surgery. I am scared but I know that he needs this. His breathing is holding him back. His breathing is more labored now that he is more active.  I am so used to his noisy breathing because it has been this way since birth but I realize how "abnormal" it is whenever we are out in public. People look at him and I like we are aliens. I don't mind but I swear they must think he is having an asthma attack and I am not doing anything to help him. If they only knew how much he has been through and how amazing he is. We were at Aidan's Karate lesson the other day and there were two women there who looked like their eyes were going to pop out of their head. I swear they stared for half of the class. I thought my friend was going to flip out on them lol. At the park parents give me a strange smile then take their kids to the other side of the park, maybe they think he is sick. I used to explain it to people but you know it is kind of hard to keep telling people. Sometimes I feel like I should have a t-shirt that says... 

"My son has half of a heart and half of an airway, he is the strongest person I know. He is not in respiratory distress would you please stop staring.. thank you".
I don't mind the stares I know how amazing he is. I just don't want him to ever feel self conscious. I will raise him to not worry what others think but life is hard enough for him without dealing with others who don't understand.

Aside from all of that Jacob needs his airway opened because it is risky for his heart. The older he gets the more active he gets. When he is active he struggles so hard to breathe. I am so amazed by him though because even though he is gasping for air he never slows down. I literally have to put him in a swing at the park to get him to rest for a while. He would climb the stairs to the slide and run around for hours.

Making A Difference

We had a very exciting day today. We went to the public signing of the WV Pulse Ox Bill that we have been working so hard for. Michelle, Ruth and I along with the American Heart Association have been pushing to make Pulse Ox testing mandatory for all newborns in WV. You have heard me talk about it many times but just in case you are new to the blog this is a very simple, cheap test that can literally save lives. 1 in 100 babies are born with a CHD. Sadly some are sent home undiagnosed only to pass away or suffer very severe complications. The quicker a child is diagnosed the greater the chance of survival and a good quality of life. We got the bill introduced in January and it was officially signed into law this week!

We were able to be up there when Governor Tomblin signed the bill and he gave us each a pen that he used to sign it. I am going frame the picture above with the pen and a copy of the bill so that I can give it to Jake when he is older. After the signing we were able to share our story with the Governor and thank him.

This bill is in memory of a beautiful baby boy named Corbin. Corbin's mother Ruth has been the driving force behind getting this passed. He was born with a severe Congenital Heart Defect and was not diagnosed until days after he was born. Sadly he passed away at only 81 days old. Corbin's life may have been way to short however his legacy will live forever. He will live on in every baby that is tested because of him and ever little heart that is saved. This bill is in honor of all of the children who are fighting heart disease and all of those whose lives were cut far to short. I can't wait to tell Jacob how his story helped save lives.

Thank you to everyone who wrote their lawmakers and helped us get this bill passed.

You can view the language of the bill here.

Click here to learn more about baby Corbin.

It was very exciting to be up their while Governor Tomblin was signing the bill.
Sharing our Story with the Governor.

My adorable boys ready to go see the Governor.
Jacob ready to take on the Capitol.
Me and my beautiful boy. Jake was sleepy, it is hard work saving lives.