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!!!

Day 11: Home stretch

 

We had a great day. Jacob was really active. He walked back and forth from the playroom a few times. He even ran to the toys which was not fun trying to chase behind him with his tube drain. He rode a bike they had in there, mainly wanted me to push him. He played with lots of toys, colored and took a TON of wagon rides. Seriously this kid loves roaming the halls in the wagon. It was so sweet tonight he we were going for a ride and he would blow kisses and tell all of the babies night night. The staff here loves him and waves to him as he goes by.

He drained about 90cc of fluid total yesterday and has only drained about 30cc all day today. If Dr. Spray (His surgeon) gives the ok they will be removing that tube tomorrow. Then if all goes well he will be here maybe two more days to make sure the fluid stays gone and for us to get all of his medications sorted out for home then we may be able to go home by Wednesday or Thursday! His sodium was a little low so they started him on that today. He is on Lasix and aldactone for diuretics but I am not sure he will go home on both. He is also on lovenox shots but they may switch him to coumadin before we leave.

Other then getting this tube out and waiting a day to make sure the chest x-ray continues to look good he is ready! He is eating like normal. Still throwing up some but it only when he gags on something. Hopefully that will get better with time. His gag reflex is sensitive since the vent from surgery. It is getting better and they are not concerned. He is eating and drinking like a champ. The docs all said that his levels showed he was borderline for the Chylous effusion but since he was eating more and it was actually getting better not worse they didn't think he needed to go on a low fat diet. Actually today the fluid has gone back to Cirus and looks really clear which is good. Still we will need to watch for signs at home to make sure it doesn't come back. Signs would be low sats, respiratory issues. They could do a chest x-ray at our local hospital and if it was really bad we could always go to Cincinnati Children's for a chest tube if he needed it. But we will be PRAYING that it is gone for good and once we are home we can stay there.

His incision looks great. There are some spots that don't even have scabs anymore. We kept it covered longer then usual because he was picking at it. I think it looks awesome!

He has been laughing and smiling all day. We all can't wait to get out of here! Today I have noticed his lips looks so pink. People always say post-fontan the kids look pink but Jake was never really "Blue". Today I really noticed a change. His lips looked so pink and his nail beds are also less purple. His oxygen has been staying around 88 which is great. It will get higher as his fenestration closes.

So the plan for tomorrow is to take off the dressing from the last chest tube and hopefully get out his other one. Then start planning to transition him to home meds and get out of here!

Thank you for the prayers, keep them coming. We are in the home stretch!!!!

Chowing down on pizza after the docs said no low fat diet lol

Best Medicine: Hanging out with Aidan

 

On the right track...

Jake has been doing great the past few days. He has been up and walking and we take wagon rides all day long. He is laughing, playing and just getting better and better everyday. We would have been home by now if it were not for the fluid draining. Andy had to go home today. My mom and Aidan decided to stay here so Jake and I wouldn't be alone. We also are hoping to be able to go home early next week so the car is here now and we can just all go together instead of trying to find a way for Andy to come pick us up.

They took out Jake's original chest tube this morning. The site was looking pretty yucky. He doesn't have any signs of infection but they will look at it Monday morning and if it has not gotten any better they may put him on antibiotics just in case.

No more Blake Drain.

He still has the pigtail drain that was put in for the pleural effusion in his right lung. The good news is the fluid is slowing down. Jake was draining about 10cc/hour and today it had slowed to 5cc/hour. Jacob's chest x-ray looked beautiful this morning. It was so much better then previous ones. When they have been flushing the line to make sure there are no clots they are not getting anything out anymore which is also a good sign that the fluid is stopping. They were afraid that the pleural effusion was becoming Chylous which scared me because that is not fun to deal with. It basically means there is fat in the fluid and the kids will have to be put on a strict low fat diet. That is not easy to do with a 3 year old but we would do what we had to. I just talked to a fellow and she told me his numbers were in normal range so they don't think it is Chylous. Praying that is the correct information. I will know for sure during rounds tomorrow.

I totally get the mom of the year award because I actually broke his chest tube today. Thank GOD it didn't pull out of his chest. Jake hasn't wanted to walk as much today. I think he is sore from where they took the tube out and we were up and walking a lot the day before.  I was making him walk and he was crying and reaching up for me to pick him up. I leaned down to give him a hug and then went to pick him up. As soon as I started to lift I heard a pop. I looked down and sure enough there was fluid on the floor. OH CRAP!The tube had gotten caught under my shoe. So I had the front desk call the nurse. Thankfully it popped between two sections of the tube. The nurse called CT surgery and they talked her through rigging it so it would still work until they could come fix it tomorrow. It is still draining but it can kink easier so I have been paranoid about it all night.

Broken tube. Nice job mom!

I am actually shocked Jake has not tried to pull anything off of him. He has leads all over his chest, bandages and the chest tube. He has to keep it covered. If you take off his shirt he says "Shirt" and if you lift it he pulls it right down. He also has to have the "No-No" on his IV. IF it is off he points to it and shows you to put it on. I think he just don't want to see the stuff because it upsets him. I am just thankful he isn't trying to pull it out. He is picking at his incision so we have been trying to keep that covered.

Physically Jake is great. Yesterday he climbed a big flight of stairs all the way up and down for Physical Therapy. He did it without any problems and didn't fuss at all. The physical therapist said he met all of the goals she had for him and he didn't need any PT anymore!

 
We also stopped by the playroom yesterday and participated in Music therapy. Jake loved it. He hit the drum, sang songs and played the shakers. He met a few new friends as well. During one of our many trips to the playroom we met a 14 year old boy named Tom who also has HLHS. He is such a cool kid and it is so great to talk to him and see how well he is doing. Jake didn't want to walk as much today but like I said I think he is sore. We took him on wagon rides all day. He wakes up pointing to it and saying "Ride". He LOVES the wagon. It also gives us a way to pass the time.

Music Therapy

Speech wise I am amazed at how much Jacob has improved. He has not had any speech therapy since we have been here but he is communicating so well. Tonight the nurse came in to check his vitals. She grabbed the blood pressure cuff and Jacob lifted his pants leg and said "This one". Then she grabbed the pulse ox and he pointed to his toe and said "This one" lol. Last she got her stethoscope and he pointed to his chest and said "Heart". I was so proud of him in that moment. First of all to be able to communicate with her but also because I would expect him to be scared or upset when he gets messed with, that is how he used to be. But instead he is being so brave and helping them. The other day a doctor was listening to his belly with the stethoscope, he picked it up and put it on her heart and gave her a look like she was dumb and didn't know where it went lol. I love him so much and am so proud of him. He is telling me when and what he wants to eat, drink, what movies he wants to watch and if he wants to get up and go to the playroom.

The best news of the day was that his heart echo looked perfect! His fontan pressures are just where they want them and everything looked great. So between the great chest x-ray and awesome heart echo I think overall today was a great day!

Brothers <3 i="">

High Fives!

Bubbles!

Thank you for visiting Jackie and Julia!