Belly Troubles...

When preparing myself for the Fontan I knew we would face issues with fluid. All Fontans drain a lot of fluid from their chest tubes because of the pressure changes which occur in their body. What I did not expect was all of the issues he would have with his stomach.

When the kids have their second open heart surgery (The Glenn), they get "Glenn Headaches". Basically their plumbing is re-routed and the pressures in their body go to their head causing horrible headaches. When the kids have the Fontan, their anatomy is yet again re-plumbed and their bodies once again have to adjust to the new flow and the new pressures. This time the pressures go down to their stomach causing a lot of belly pain. For Jake he has been battling lots of air in his stomach. I am not going to lie this is horrible. Jake looks better then I was expecting him to but it is so hard watching him go through all of this and not being able to do anything to help him.

The past few days have been really hard on Jake. Here is a quick run down of what has been going on. I hope it all makes sense because I am pretty tired but I wanted to give everyone an update.

FRIDAY

Good Stuff: Got a lot of fluid off lungs
Bad Stuff: Lots of fluid accumulated, Lost IV

Chest Tube

Jake woke up Friday feeling pretty bad. We expected the day after his surgery to be rough but his numbers were all trending down and he had a fever that was creeping up through out the day. He was pretty miserable and having problems keeping his oxygen up. His chest x-ray showed a lot of fluid on his right lung so they decided to put in another chest tube. It was really good that they did because they got 8 oz. of fluid off of his lung immediately. That is a ton of fluid! His fever went away immediately (The fever was the bodies response to the fluid) and his oxygen was a little better. His labs all went back to normal as well. He continued to put out about 20ml of fluid an hour through that tube.

One of Jacob's IVs started to infiltrate so they needed to take it out. I knew once one went the other was sure to follow. Since it was almost the weekend they called IV team who said there was no way they could get him (He is impossible even under the best of circumstances). It took over 10 tries in the OR which is the ideal place to get an IV since they are warm and asleep. I told them in the past we always needed a ultrasound guided IV placement. They called Interventional radiology but they didn't come up. The docs said that it was fine for him to just have the one IV and not to worry about it.

SATURDAY

Good Stuff: No Oxygen, No Catheter, Own Room!

Bad Stuff: Belly in tons of pain, Swollen liver, No IVs

  

The good news is Jacob no longer needed any oxygen support. The doctors were happy as long as he stayed above 80. His last IV blew which I was afraid it would. Now the only access he had was the Fontan line that goes directly into his heart. IV team tried but could not stick him and there was no one from Interventional radiology to do the ultrasound guided placement. This is exactly what I was afraid would happen. It was decided that he would need a PICC line for a more stable access site. We would have to wait until Monday or Tuesday for that. This meant that we would have to keep in the Fontan line which meant Jacob would be stuck in bed all weekend. He can not get out of bed with that line because it is directly into his heart so we can't risk it getting pulled out.

Another plus on Saturday was Jacob got his catheter out. He was able to pee on his own yay! The bad news is his stomach got progressivly worse. It was very hard and full of air. The x-ray showed stool that was stuck there along with a ton of air. We had been giving his glycerine suppositories, mirilax and Collace but nothing was working. He would cry if you went near his stomach. His liver was also enlarged but they said that is due to the fluid build up and his belly pressures.

The Best news of the day was we got our own private room. Before we were in a room with 3 other people includeing 2 infants. Everytime Jake would attempt to sleep the babies would cry and he would wake up. Having a private room is great! I can spend the night in the room with him and it is so quiet.

On a fun note, Taylor Swift visited CHOP yesterday.
I took her picture and got screamed at by security lol.

SUNDAY 

Good Stuff: He POOPED!!!!!! Got the ART line out. Still peeing on his own. Fluid is slowing down.

Bad Stuff: TONS of belly pain, Lots of vomiting, Still stuck in bed.

Sunday Jacob woke up and looked great. He was singing and repeating everything off his movie Chuggington. He asked to eat and ate one grape (We celebrate even the little victories). He just seemed so much better. Then started the major belly issues. He started wretching and vomiting. He wanted to drink so bad but he would take one sip then sit up and vomit. He started turning completely over in bed on his hands and feet and crying in pain. His belly was really hurting him. I felt so horrible for the poor baby. We again tried suppositories, anything to help him but nothing was working. He would sit up in bed and just dry heave over and over. We stopped giving him anything to eat/drink but he kept asking for it. He was no longer allowed to have morphine or oxycodone because it was contributing to his constipation.

Later on today we realized his ART line was bleeding. It looked like all of the turning and climbing in bed caused him to pull a suture. The docs agreed to take it out. I was a bit nervous about this because it is the place they would get all of the blood from for labs. They said they can access his Fontan line to get labs if need be and hopefully he will get the PICC soon and they can access that. The good thing is this line was in his groin and very uncomfortable. By taking this out he no longer had any lines in the diaper area which will be so much better for Jacob.

Finally tonight they did an Enema and he FINALLY pooped! I was hoping this would make him better but he still had a lot of air in his belly. He is still dry heaving and gassy. We are venting him and giving him gas medication. The docs say this is normal typical Fontan belly. His body is trying to adjust to the new pressures in there but unfortunately the gut takes a beating while adjusting. We know that if he could get up and moving then all of this would start to get better. The problem is the only access is that one Fontan line and as I said he can't get out of bed with that. He was supposed to get a PICC line tomorrow so we can get that Fontan line out and get him moving but the schedule is full. Please pray that they can fit him in. Another day of waiting in bed is not what I want for him. I want him to be able to feel better. If he moves the fluid and air will move easier through his body. He wants to get out of bed and I don't blame him.

Good news is his fluid is slowing down and turning clear which is all good. He has gone from about 20ml/hour to 10ml/hour. He had milk and there was no Chylous which can sometimes happen so that is GREAT! The color is changing to clear which is also great. Hopefully this is a good sign that it will be slowing more and more and eventually stop! The fluid is also contributing to Jacob not wanting to eat.

We also had some visitors today. We  had a surprise visit from my Aunt Linda and Uncle John. They live in Mass. but were in North Carolina and stopped by on their way up to New York. We had no idea they were coming and it was such a great surprise! We also had a visit from a fellow heart mom and friend Christa. She came to visit and brought some delicious food. It was great to get to take a break and chat for a while!

Jake with Uncle John and Aunt Linda! We love you guys!

Jake with Christa <3 td="">

Thank you for the continued prayers for Jacob. He is slowly getting better and I know with each day will come progress. Please pray they get Jacob in for the PICC line soon. This stay has been rough on everyone. Aidan is having a really hard time not having both his mommy and daddy with him. I stayed with him last night and Andy stayed with Jake. We don't leave Jake without at least one of us or my mom but it is hard because they both want their mommy. Please pray Jacob continues to improve and we can all be home together within a few weeks.