Home but not so settled.

We are back in West Virginia and a ton has gone on since my last post. Sorry I have not posted earlier but we have been trying to get into our routine and have had a few trips to the hospital. Jake is doing great and is loving being home. His breathing is so quiet it is kind of Eerie.

Before I get into everything that has happened the past few days I need to give you that back story I promised a few posts ago. I mentioned something happened and cause a blood clot in his Jugular. Before I begin I have to say that what happened in NO WAY makes me think any less of CHOP. They are an amazing hospital and if it were not for their doctors Jake would not be here with us today. It doesn't matter how big or small the hospital, mistakes happen because people are human. That being said we had a few nurses who I hope to never see again. I told CHOP that we travel 9 hours to go there because we want the best and although the doctors and surgeons have all been amazing, nursing care is equally as important because they are the ones taking care of Jake and mistakes like this could have cost him his life. It is not acceptable and I have filed a formal complaint. Here is the story.

Sunday night (May 6th) Jacob's nurse wanted to change the dressing from his central line. When she took off the dressing I noticed that a suture came out. I asked her if she should let the fellow know but she said no there were two more holding it in and it was fine. She slapped a new dressing on and went on about her business. About an hour later I noticed Jake was active VERY agitated. He was arching and just did not seem like himself. I let his nurse know. She said he was due for his morphine and was probably just feeling agitated because of that. She gave him his dose of Morphine. He calmed down and went to sleep... I went to sleep.

Fast forward to the next morning.... 

I woke up at about 7am. I heard the nurse say "He had a great night" to my mother in law who just walked in. I sat up and said "Hi beautiful" like I always say to him when I first see him in the morning. As soon as I looked at him I could see that his chest was swollen. I ran over to the light switched and was shocked by how he looked. He had no neck. His chest, shoulder, back of his head, back and neck were swollen with fluid. I knew immediately that the central line had infiltrated because this was the third infiltrate he had within the past week. I yelled to the nurse that I needed an attending IMMEDIATELY. She said "Let me look at it". I quickly told her NO, I want an attending NOW! She brings back a resident. At this point I am furious. I told them I wanted an attending that second.

There are protocols in place so that things like this do not happen. Nurses are supposed to check IV and central lines every hour to make sure that if an infiltration occurs it is caught before it gets this far. Jacob only has half of a heart so to see all of that fluid sitting on his chest scared me to death. I don't think the nurse checked on him at all that night or she would have seen it or at least noticed his bed. They called IV team up to look at it and before I knew it I had about 20 people in the room. Anyone I saw that day got an earful. I talked to the attending at length about how I did not feel safe there or feel like Jake was being properly taken care of. I told her everything and refused to let the nurse change the sheets on his bed (She tried) until the attending and the rest of the PICU team saw it. They were very good at listening to me and apologized that I was not being listened to. They told me that it would not stop there and that they would be taking action and also setting up a meeting for the entire nursing staff to discuss what happened and educate them about the risks of infiltration. The IV team also did a report and I filed a formal report with the hospital.

Jake had no neck, his chest was swollen and so was his shoulder, neck , chin and head. 

Picture I took of his bedding. If you look at his pillow you can see it is soaked in fluid. 

One of the fellows Nicole was AMAZING. She literally kept me sane during everything. She had been there for the previous infiltration as well and was the one that had to put the emergency central line in because of that one. She was very upset that the nurse did not tell a doctor that the suture had come out. She also was furious that the nurses were not listening to me when I would tell them I knew something was wrong. They changed my nurse since I was NOT happy with the nurse I had that day and asked me who I wanted looking after him that night. Nicole ordered a ultrasound of the central line site immediately and thankfully she did because that is where they discovered the blood clot in the jugular. She let me know and they started him on the lovenox shots immediately. Lovenox basically thins the blood so that more clots do not form. This allows the body to naturally fight the clot that is in his jugular.

I of course was a crying mess that day. It never fails, I always get through surgery and a few weeks of recovery without crying. I go into survival mode but then something like this happens and I have so much anger and emotion that my body just snaps and all of the tears come out like opening a flood gate. At one point Nicole (The fellow who seriously I just loved) and the child life specialist were sitting on the floor with me as I am crying my eyes out. I started laughing telling them that all we were missing was a bottle of wine. Seriously it was like an episode of Grey's.

Nicole showed me the x-rays that were taken right after the infiltration and the one that was taken after the line was placed. When the nurse took off the dressing she pulled the line all the way up into his chin. This was why he was arching and aggravated an hour later, he felt it. Then she hooked him up to the saline drip because he was going to the O.R. for his bronche the next morning. The saline had been flowing into the tissue of his chin and started filling his chest, neck, back etc. This poor kid looked like the state puff marshmallow man. He couldn't even turn his neck.

So that was a horrible day to say the least. We were also dealing with getting him a new G-tube that didn't leak so he was being poked, getting ultrasounds, x-rays and had his bronche that day. He also needed access to get meds for his bronche but IV team said they would not be able to get anything since his veins had basically called it quits and refused to hold one. They had to have interventional radiology come up and place one using ultrasound guidence. Jake will be on the lovenox shots for at least 6 months to a year and possibly until his Fontan. He only has one Cath site left so we have to be sure it stays clear of clots. We will see Hemotology in 5 weeks when we go back to Philly for his follow up Bronche and they will do another ultrasound of the clot to see if it has gone down any. They will also re-check his lovenox levels. We just had blood work done today and his levels are perfect so he doesn't need more blood work until we are in Philly. After that we will go to Cincinnati every 2 months to get a bronche and to get ultrasounds to check the clot. I told the docs at the PICU that I wanted someone to make it clear to that nurse how her mistake will affect us for the next few years. I know it is "Calmer" at night but it is still the ICU and the kids need to be followed. I never left his side but I have to sleep sometime and should be able to feel safe with him in their care.

Ok so now to catch you up. His bronche went great and he had a swallow study done on Thursday May 10th. Unfortunatly that didn't go as well. Jake had issues with thin and necter thick liquids. The liquid was not aspirating but was penetrating. Basically instead of it flowing down the esophagus like it should it was bouncing over into the pocket above the vocal cords then back to the esophagus and going down. Jake's vocal cords are always open now because of the graft that is there to hold them open so he can breathe normally. But this makes him high risk for aspiration. Prior to the surgery the liquids never did that so this is new. The hope is that as his airway heals that this will go away. We will do a repeat swallow study in 5 weeks when we are in Philly. But until then Jake is back on g-tube feeds. He is allowed to have as many purees as he wants. This consists of food like applesauce, yogurt, oatmeal, anything mushy or of that consistency. Thankfully there are tons of different packets available these days of all natural purees so we got lots of snacks for him. He can also have Honey Thick liquids up to two times a day. Basically it is any drink but I put a packet of Simply Thick into it which makes it the consistency of a milk shake. I have to work with him and only do a sip at a time. The rest of his nutrition is pediasure through his g-tube.

It has been hard for him. As soon as we got home he ran over to his cookie drawer. Andy moved them and he just stared into the drawer signing cookie and looking so sad. He doesn't understand why he can't have the foods that he loves. We are being creative and trying to chop, puree things he likes for him as a treat but it's not the same. It was strange getting used to doing all tube feeds again but hopefully it won't be for long.

He is still weening off of his Valium but doing well. I should be done with that by tomorrow. He is also doing great with his shots. This morning he didn't cry at all when I gave it to him. I guess I am also getting better at sneaking up on him. It is my mad ninja skills as Aidan would say lol.

We were discharged on Friday May 11th. That night I saw some puss coming from his central line site. Andy was flying in from WV to get us so as soon as he got there we went back to the ER to get it checked out. 3 hours in the ER and we found out it was not infected, he just scratched it. They gave us mupriacin ointment to help protect it and off we went back to the Ronald McDonald House. We drove home Saturday and Jake did great! I enjoyed Mother's day at home with my boys and couldn't have asked for a better gift.

Yesterday I was giving Jake a bath and felt something hard on the back of his head. I looked and saw a huge spot that looked like a blood clot. I immediately called his doctor worried it could be bleeding and since he is on blood thinners I worried something was wrong. The good thing was neurologically he has been great. He has been walking and even climbing since we got home and he was acting normal. Of course right before i saw it I sent Andy to Walmart for Pediasure so I had no car (Seriously need another car because I was stuck with no way to get to the hospital). I called my sister who picked up the boys and I and off to the ER we went... AGAIN!

GIant black blister. The skin is burnt and dead from the infiltration.

We checked in and after trying to convice the registration people that 77 was a correct pulse ox read and normal for him we waited to be called back. As I was sitting in the waiting room it dawned on me what it was. I remembered baby Mia's arm when she had an infiltrate. It had a huge black blister on it. I ran to find the nurse and let them know that I thought I knew what it was. We saw the doc and I was right, it was a huge blister from the infiltrate.

As I look back at pictures I took him the day of the infiltrate I can see red under his hair in that exact spot. I assume that there was so much fluid and he was laying on that spot so it blistered or maybe even popped but no one saw it. You can't see it under his hair so if I had not felt it and looked we wouldn't have known it was there.

If you look closely you can see red in the same spot the blister is now in.
This picture was taken right after I found the infiltration. 

It is red around the blister so they put him on Clendamyacin just in case the skin is or is getting infected. We saw his doctor today and she said it looks like the skin is pink from healing and she doubts it is MRSA. He has no fever or puss. The antibiotics may even be overboard but because of his history and just being in the hospital it is better to be safe than risk something else happening. So he will be on them for about 10 days. The last time he was on this medication (when he had the sternal infection) and on tube feeds, he got C-diff (Another type of infection). So I am praying it doesn't cause that again. He will most likely lose his hair in that spot when the new skin starts forming and the blister falls off.

Sorry for such a long post but as you can see we are home but it has still been very hectic. Thankfully Jake is doing great! He is very happy to be home and we are all adjusting to the new med and feeding schedule. We will be heading back to Philly in about 5 weeks. Please pray that we can stay OUT of hospitals until then.

Heart Hugs!