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.