Home and LOVING IT!

THANK YOU FOR ALL OF THE PRAYERS!
 As you can see, they worked.

I am sorry I have not updated the blog since we have been home but we have been busy. Jake is doing AMAZING. He is pretty much back to normal. Happy, playing and pretty much pushing every limit and restriction he was sent home on lol.

As soon as we got home I set up my command center. 

Anyone who knows me also knows that I do better when I am in control (I am a serious control freak). Jake being sent home on all of those medications made me feel pretty uneasy but as soon as I set my board back up I felt so much better. I only really needed it for the first day or two but still it makes me feel better to have it lol.

We have been pretty busy with appointments since we have been home. Last week we had 2 chest x-rays, blood draw and two cardiology appointments. When we left CHOP Jake still had some fluid on his right lung. They increased his oral diuretics and we were able to come home. By that Monday the chest X-ray showed almost no fluid! It could be the added diuretic but I think it is because he was happy to be home and out of that hospital bed.

The X-ray on Friday looked even better. There was no fluid! Yay, now lets hope it doesn't come back. We went back to the Cardiologist today and the X-ray still looked awesome so we were able to get rid of one of his meds! Diuril is now cut off that long list pictured above. If things look good on the X-ray next week then he can drop the Aldactone and Sodium and the Lasix can be cut down to two times a day. That would mean we would be down to only 4 medications a day. We are headed in the right direction! We have to slowly ween off of the diuretics to make sure the fluid doesn't start building back up.

Jacob's oxygen levels are still hanging out around 85. This is normal. It could take 6 months to a year for his fenestration to close and the oxygen levels to get up into the 90s. If in a year they are still low then he will need to have the fenestration closed through a Cath. Hopefully that won't be necessary and those numbers will start to go up on their own. Either way it is not something we need to worry about right now.

Jake is back to his crazy 3 year old self. He is still technically healing yet you would never know it. He is climbing on everything despite me telling him he isn't supposed to yet lol. I woke up the other day and he was in my bed. He climbed up on the table next to my bed and climbed in bed with me while I was sleeping. SERIOUSLY JAKE. A few days ago I looked over and he was trying to go down his little slide on his belly. I ran over and grabbed him and he started laughing at me. He may be driving me crazy with worry but it is so awesome to see him back to normal. A smiling, happy rambunctious three year old boy. He amazes me daily.

I will try to write again soon but as always no news is good news. If I am not posting that just means we are living life and enjoying every minute! 

 

DISCHARGED!

Post Fontan Day 16

 DISCHARGED! 

As happy as that makes me I am scared to death. We still have a long way to go before I feel "Safe". Jacob still has fluid on his right lung. He is on three different diuretics so that will help him get the fluid out. It is just going to take time for his body to re-absorb the fluid. That being said my biggest fear is the fluid re-accumulating. It is not uncommon for kids to have to be readmitted for another chest tube. I am not trying to be negative or pessimistic and I am praying to God that we won't have to go back to a hospital but lets just say I am being very cautious and kind of feel as if I am walking on egg shells.

My job is to keep him well fed and well hydrated and pray the diuretics do the trick. We will be going to our local cardiologist on Monday and they will do a chest x-ray then. Hoping it shows improvement or at least doesn't show any signs of it getting worse. I also need to watch out for signs that it could be coming back like coughing, lower SATs, fussiness. I am also going to continue to do chest pt (Pound on his back with a little thing they gave me) to help break up the fluid. Please continue to pray the fluid goes away and doesn't come back.

Another thing we have to adjust to is all of the medication Jacob was sent home on. Before his surgery he was only on Aspirin and Enalapril. Now he is on EIGHT different medications!!!

Overwhelming doesn't quite cover how this makes me feel lol. I feel like we are Post-Norwood all over again. The Norwood was his first open heart surgery and he was on 8 then as well. Many of these will be weened off in the next few weeks to months. Here is a list of what he is on and when he takes it.

Lasix  1.5ml
Frequency: 2x/day
Type: Diuretic

Diuril  2.6ml
Frequency: 1x/day
Type: Diuretic

Aldactone 2.5ml
Frequency: 2x/day
Type: Diuretic
 
Zantac 2.6ml
Frequency: 2x/day
Type: Reflux Medication

Sodium 3ml
Frequency: 1x/day
Type: Suppliment

Cephalexin 6.9ml
Frequency: 4x/day
Type: Antibiotic
Last dose tomorrow

Lovenox Injections 9 units
Frequency: 2x/day
Type: Anti-coagulant

Enalapril 2ml
Frequency: 2x/day
Type: Blood Pressure

Enough to make your head spin, right? I know after a week it will be nothing and I will be in my routine but for now I am checking them 4 times before I give it to him and being super cautious. I have a med schedule they gave me but I need to go home and make it on my dry-erase board so I can easily keep track of what I give him each day. I feel better the more organized I am with this stuff. He was throwing up with the Sodium, like clockwork but tonight I gave it to him and he didn't. I am wondering if it was positional because he wasn't in bed. He was up and playing. I also diluted it with more water and used a bigger flush. I give it to him in his tube. The nurse said diluting it helps. He gets a lot of meds at one time so they said I can give them however works best for him as long as I space them right. I don't want to be giving meds 5x a day but I also need to give certain ones like the Sodium by themselves. That way if he does vomit the rest stays in.

Right now we are doing:

• 8am: Lovenox, Lasix, Enalapril, Zantac, Aldactone, Antibiotic
• 12pm: Diuril
• 2pm: Lasix, Antibiotic
• 8pm: Lovenox, Lasix, Enalapril, Zantac, Aldactone, antibiotic
• 10pm: Sodium
• 12am: Antibiotic.

Luckily the antibiotic will be gone tomorrow.  So that will help. Then he will just get meds 5 times a day lol. UGH. Oh well we have to do it and hopefully he can be weened off some in a few weeks to a month. I need to get in touch with Hematology in Cincinnati so they can be our point person on when to stop the lovenox injections. It will most likely be in about 3 months. I will discuss this at his doctors appointment on Monday as well.

Jake has been so happy since leaving the hospital. He is driving me crazy because he is running everywhere, climbing, playing basketball... pretty much trying to do everything he is not supposed to do. He will stop if it hurts but I still worry. The fact is he is a 3 year old boy so it is kind of hard to hold him back. It is also great he feels so well.

We are at the Ronald McDonald House tonight and will be leaving first thing in the morning to go back to West Virginia. Like I said earlier we still have a while before we can "Relax" and truly feel Post-Fontan but please continue to keep Jake in your prayers. I will update the blog after his appointments on Monday.

I have to say it is pretty amazing to look over and see both of my boys sleeping peacefully beside me. I am so blessed!

Another day hanging out in the CCU...

Post Fontan Day 15

Jacob's chest x-ray looked a little better today, YAY! Not too much to report other then that. All of his labs look good so they don't need to stick him tomorrow... double yay! Today he was on oral diuretics only, no IV diuretics. If his X-ray looks the same or better tomorrow then we may be able to go you know where. It is all riding on that. I am a little nervous because he has not drank as much today and is not peeing a lot. I have been trying to shove the sippy cup at him as much as I can lol. If it looks any worse then we will be stuck here the weekend so praying it looks better. People have been asking me all day if we are going home tomorrow. I am so afraid to jinx it. His cardiologist came by to see him this evening and Jake was driving all around the cardiac unit in a lightening McQueen car. He said "Looks like he is ready to go home". I just replied "We would love to, fingers crossed".

His buddy Sophia went home today and we seem to do everything at the same time so maybe that is a good sign. Another little boy who was here for the Fontan and went home last week came back tonight because of the fluid. It scares me because I know it can come back anytime and he still has some but I know they won't send him home unless they are sure. The fluid will take a while to reabsorb and he will be on diuretics for quite some time to make sure it stays away. If we do go H_____ tomorrow then we will go in for a chest x-ray at our local hospital on Monday morning. We will have to do a lot of follow up to make sure we monitor the lungs and fluid. 

Jake is beyond ready to get out of here. Tonight he literally tried to jump OFF his bed. He gave me a sly grin and I noticed his legs were hanging off the bed and he was scooting off. I ran over to catch him. I have since lowered his bed as much as I could and warned all of the nurses that he is crazy lol. He has been out of bed and running around most of the day. He just looks awesome. Love my boys so much.

I hope to write tomorrow from my own home but we will see what the xray shows. Until then here are some pictures of my little monster from today. Enjoy.

Laughing with a mouth full of food!

Super Aidan!

Looking for a way to escape.

Crazy Man behind the wheel :)

 

Emotional Rollercoaster

Post-Fontan Day 14

Today did not start out how I had hoped it would. I was woken up (around 5am) by x-ray. Jake and I fell back to sleep and about 6am we were woken up by phlebotomy. That is probably the worst part about being in teh hospital for Jake. He is woken up every morning by them sticking him for blood. The past few days the phlebotomists have been amazing and got him right away. Today she poked him a few times, then got blood everywhere on his bed even though she had already took the needle out so none of that counted. Then she got him on his foot and said to me "Next time you really should tell the person who comes that he has good veins on his foot so we don't have to stick him more then once". She said it with attitude like it was my fault she didn't get him and made him upset. Seriously, isn't this your job to look for good veins? Ugh.

She left and we went on with our day. Since they wake Jake up like that he starts out the day trusting no one. He tells anyone who steps foot in our room "Bye-Bye... See you later". He is afraid of everyone. It is pretty sad, but he is so sweet about it. Next the fellow came in. He told me the X-ray looked a lot worse (My heart sank). Then he said Jake might need to have a chest tube put back in. He as well just have punched me in the gut. I felt so defeated. I held back the tears although I just wanted to scream that it was not fair and he had been through enough. The nurse came in and had this look on her face that she was so sorry about the news. At that point I couldn't hold them back. I just started crying my eyes out.

One thing about me is I always try to be so strong. I don't usually cry, not even on surgery days. I always want to be Jake's Rock. I don't want him to see me upset because I want him to know it is ok. I told the nurse I felt so ridiculous and so guilty because I knew this is just a minor setback and I know how blessed I am that Jake is doing so well. So many kids are fighting bigger battles, some fighting to hang on until they get a new heart. How selfish was I that I was crying over a little fluid and a chest tube. She told me not to feel that way. She said you have every right to be disappointed. He is my child and it is hard seeing him go through all of this. You get your hopes up only for them to be crushed and this could keep him here a lot longer.

Think there is enough stuff in his bed lol?

I realized how right she was. I have every right to have a moment to vent, cry or feel dissapointed. That doesn't mean that I don't realize how lucky we are that Jake is doing so well. That doesn't mean that I am not being positive and that I don't know that this will pass and we will be home before I know it. It means that I am human. It means that I am exhausted, that I watch both of my boys being so brave but wanting and wishing to go home. Jake looks great and feels great but he also has super high anxiety in here. He is afraid of everyone and has more bruises and needle marks than I can count. I am his mother, of course I want to take him away from all of this.

This doesn't mean I will be a crying, blubbering crazy woman every day but I think it is ok to take 20 minutes and cry to get my frustration out. Living in the hospital day in and day out is not easy. I haven't even seen outside or had fresh air in days. Being separated from Aidan every night is not easy, especially when he cries and tells me he wants his mommy. Heart moms are the strongest women I have ever met. We put on a smile when some would crumble. I am so proud to be a heart mom. I plan on always being tough and strong and pushing through no matter what set backs we face. I am also so glad that I know in my heart it is OK to be human and take a moment let myself let it all out. I truly think that is important in order to keep your sanity. I took that moment then I sucked it up and it was time to figure out a plan of action and move on. Ride the roller coaster no matter how many drops and loops it had.

So I had a good cry and then the attending came in and didn't know why I was upset. I told her the fellow came in and said Jake needed another chest tube. She said "No he doesn't" lol. Wait.... WHAT? She said the X-ray was not worse. It was done at the bedside and yesterday's was done downstairs as a 2D so the fellow thought it was worse but it was just a different technique and actually the fluid was exactly the same. So the tears and stress was for nothing but hey I got a good cry out of it lol. It is not great news that the fluid had not gotten any better but after hearing before that it was so much worse it sounded like the best news ever!

After she left the dayshift nurse came in with Jacob's fist full of medication. I told her he tends to throw up once in the morning and we were not sure why. She told me she was surprised he got so much medication at once and asked why we didn't mix the sodium with anything to dilute it. I told her we have put it through his tube and no one has ever mentioned doing it any different. She suggested we hold off and give him the Sodium at 10 instead of with the others at 8am to see if it helped. Jake had all of the other meds and sure enough he didn't throw up. He ate breakfast and was fine. Right before rounds we gave him the Sodium. We put it through his tube so he woudln't have to taste it (Can you imagine taking a syringe full of salt water, YUK). Within 10 minutes he started vomiting. FINALLY AN ANSWER TO HIS VOMITING. It was the Sodium all along. So the good news is we found out why. The bad news is he did it during rounds so I missed most of the discussion about his chest xrays lol. We told the attending the nurses discovery about the sodium so they said he could decrease it and only give it to him once a day instead of twice. We are also going to give it at night since he doesn't seem to vomit at night (Maybe because he has a full belly from eating all day).

Best big brother EVER.
He even let Jake use him as a foot rest lol.

As for the chest x-ray. They decided to add a one time dose of IV Lasix on top of the oral Lasix he has been getting. They also increased his Aldactone (A less potent diuretic) to twice a day. Praying this does the trick. So we wait and see what tomorrows x-ray and labs look like. Even though we all want to go home we also want to make sure Jake's fluid is completely gone before we do. We don't want to get home and then have to turn around and go back to the hospital. So we are on his time and we know his body will heal, these pleural effusions can take forever and be a HUGE pain in the rear.

We did take him downstairs again today. CHOP has a big interactive sculpture down there. It has balls that go all around these metal tracks, slopes and funnels. The kids can turn different knobs to make different mechanisms work. They loved it. Jake was mesmerized. While we were down there a little girl was chasing him around and purposly standing in front of him so he would have to look at her. He ran away but she followed, so cute. I of course lathered his hands and arms up with hand sanitizer as soon as we were done playing.

The boys also got to do a few crafts today in the playroom. They made rain sticks which were pretty fun to make. They also made sun catchers. His fellow HLHS buddy Sofia was also in there doing crafts. She is in the same boat we are waiting around for the fluid. Jake went up to her today and gave her a hug. It was so sweet. She backed away though and looked at him like he had two heads lol.

Another BIG thing we did today was Jake got to have a bath in the bathtub instead of a sponge bath in bed. We have to make sure that he doesn't submerge any of his incisions so he can only have a little bit of water in the tub. Still it was nice to be able to really clean him and give him a more "Normal" bath. When I said bath he ran to the door and right up to the tub. He was a little upset when we had to cover his IV with a bag but I think over all he enjoyed it.

Jake ate like a CHAMP today. He ate a whole pizza for lunch. For dinner he ate all of his chicken nuggets, potato stars and apple slices. Go Jake Go! His eyes look pretty sunken in on the picture below. They were much better tonight. It is a fine balance because he needs the diuretics to get the fluid off. BUT if he isn't getting enough to drink he gets too dry and his eyes look sunken. They almost held his lasix tonight but luckily he ate really well and continued to chug his milk. He was positive on his INs and OUTs (They weigh everything and keep track of what goes in and what comes out). So they gave him his night time dose.
 

Chowing down on some pizza.

Discharge planning also came in today and sent his Lovenox prescription to the pharmacy for us. So once this fluid clears we should be good to go. I am going to take a child CPR class before we leave. It isn't mandatory but they asked if I wanted to and I thought it would be good to have a refresher. I took one when he was an infant but it has been a while. 

The plan is wait and see what the x-ray looks like tomorrow then go from there. Like always please pray it looks better and starts to clear up. I will update the blog tomorrow.

We escaped the 6th Floor... for a little while.

Post-Fontan Day 13

Not to much to report today. Jake's chest x-ray looked a little hazier then yesterdays so they added a one time dose of a diuretic that tends to get that extra fluid off. They also switched him to oral Lasix and increased that. He has been peeing a lot so I am PRAYING that the x-ray looks better tomorrow. His eyes looked a bit sunken in today after all of the diuretics so I have been trying to get him to eat and drink as much as possible. They are looking better tonight.

Hematology decided he will go home on the Lovenox injections. I will touch base with Cincinnati to see when they want to see him for follow up with that. Most likely we can just do bloodwork at home once a month to check and make sure he stays at a theraputic level.

If the x-ray looks good tomorrow then hopefully we can discuss going home on Thursday. So please pray it looks good!

The attending gave Jacob privileges to be off of his telemetry box and go anywhere he wants in the hospital. Most of the time you are not allowed off of the unit but since his telemetry has been stable and we are just waiting around to make sure the fluid doesn't come back they said he can go off the floor and try to have some fun. Once the order went through we decided to take him down to the Atrium. It just so happened that they were having a big Music Therapy Session down there.

Breaking free of the 6th floor... for a little bit.

 

This only happens for one hour once a month. All of the music therapists get together and bring a ton of instruments for all of the kids to play. What luck we would go down there just then. The music therapist that knew Jake from a session up in our playroom came over and gave the boys a drum and some tambourines. Jake and Aidan had a blast. Then Jake ran over to be part of the drumming circle and jumped up onto the chair. He loved getting to play all of the instruments. What a great mini get a way. He was able to just be a normal 3 year old for a little while, no leads, no doctors just a boy having fun! Aidan was also excited because he isn't allowed in the playroom up on the cardiac floor. This way he was able to participate and have fun with his brother.

I am super tired because it is impossible to sleep in this place. That being said I am super grateful that Jake is doing so well. As much as I want to go home I also know how blessed we are. Jake is happy and running around, laughing and playing. There are so many people who are here watching their children fight with no hope of going home in sight. I am glad they are being extra cautious. We need to make sure the fluid goes away completely.

Hope to have more news tomorrow!

Little ball of energy!

Post-Fontan Day 12

CT surgery came in this morning and pulled Jacob's final chest tube YAY! He was a champ. He didn't get any pre-med and as soon as she was done he stopped crying and was good to go. Shortly after hey left the room he was out of bed and RUNNING toward the playroom. I seriously had to run to keep up with him. He ran in and started playing with the toys. Then he went over to the book corner and grabbed a play mat and said Jump. He climbed up and started jumping on it like a trampoline! I was in shock. This kid just had a chest tube yanked from his chest and he was jumping like nothing happened. After playing for a while we walked back to our room to rest. His heart rate was up and we figured he may be sore so we gave him some Tylenol. He was up most of the day, we went on a zillion wagon rides and played a few times in the playroom.

Now that the chest tube is out we are basically waiting a few days to make sure the fluid doesn't re-accumulate and then we can go home! We are also working on getting all of his meds switched over to what he will go home on. They left the IV lasix on today to give him one more day of that. Tomorrow they will switch that to the oral lasix. Hopefully the fluid stays away! We also need hematology to let us know if he will go home on the Lovenox or Coumadin. He had to get his Lovenox blood-work done this afternoon to check his levels. They came back a little high so they are lowering his dose a bit. Not sure why they came back high, usually after they are at a therapeutic dose they stay that way. I hope it evens out or it could keep us here longer. They have to make sure the level is stable before sending us home.If they switch us to coumadin it may not make a difference. He is also on aldactone as a second diuretic, zantac and sodium. I am hoping once he comes of the IV lasix they can stop the sodium. I am pretty sure that he is on the zantac for the throwing up. Today he only threw up once so I am hoping that is getting better and we won't have to deal with that much longer.

They took his temperature earlier today and it was a little high (99.5). I was a little concerned because the site of his original chest tube had looked pretty yucky. He took a nap and woke up pretty fussy. We checked his temperature again and it was back down. The attending decided to go ahead and put him on antibiotics as a precaution . Better safe that sorry, we don't want to get home and it be infected. He may finish the antibiotics while here, if not he can go home on it.

Jacob got to go to Art Therapy today and make a really cool painting. He drew all over the paper with white crayon then painted over it with watercolor. It was a fun activity to break up the day and I got a nice keepsake!

Later this evening Jake wanted to go to the playroom. We got there and he found a toy shopping cart they had in there. He went out into the halls and took it around the step down unit. I figured after about one lap he would get tired and be done. Boy was I wrong. He wanted to keep on going so we walked over to the Cardiac Intensive Care Unit (CICU). Our room is at the end of the CICU hallway, we are in the overflow area. Jake walked all around the unit, he did at least 10 laps if not more.

The nurses, doctors and even the other parents got such a kick out of seeing him walking around pushing the cart. Some called out "Clean up, Isle 5". Another nurse would run to the supply closet every time we came around and fill his cart up with goodies. Thanks to Jake we have a new bottle of hand sanitizer, sippy cup and tissues. He would grab the items and throw them in the cart.

We joked that we were on the hunt for some better food because we were sick of hospital food. One of his nurses from a few days ago raced him up and down the hall. They love seeing kids looks so good because they are used to seeing the kids when they are really sick and stuck in bed. I finally had to MAKE him come back to the room so his nurse could do his 8pm vitals and meds.

When we got back we saw his heart rate was yet again in the 150s while up and running around. This must be his baseline. He tends to have a higher heart rate even when resting. It isn't super high, just his baseline. I notice at home when he is super active he tends to breathe a little heavier. He was acting exactly like he does at home and is playing. His heart rate probably has always done this when he is up and playing I just don't have him hooked up to machines at home.

Jake has been eating like a champ all day. So many kids don't want to eat after this surgery so it is such a blessing that he is back to normal. He drinks and eats all day. Like I mentioned earlier he only threw up once today and that was when he was super upset from being messed with. So hopefully that issue is almost over.

So all we have left to do is wait and play. Please continue to pray that the fluid stays away. Hopefully in a few days we will be on our way home! Fingers crossed!!!