Home is in sight...

I have a lot to write about but for now I just want to give a very quick update. Jacob is doing well. We had a bad day yesterday and he now has a blood clot in his jugular vein. He will need to have Lovenox shots twice a day to help prevent the clot from getting worse and help the body naturally dissolve it. We will also need to go to Cincinnati every few months to have ultrasounds done of the clot to see if it is going away.

I will go into more detail over that later but for now we are grateful that Jacob is ok and moving forward with his treatment and recovery. We were told a long time ago that his groin cath sites were occluded but he had an ultrasound tonight to check the sites and there is a chance they are now healed and can be used for future caths. I will find out for sure tomorrow during rounds.

Jake showing off his coloring skills.

Jake had his bronche yesterday and his airway looks beautiful. ENT actually discharged him from their service. We are working with Speech and today he ate a container of applesauce and drank some Chocolate milk. He didn't seem to have any problems. He actually was not happy with how quickly the therapist was shoveling it in and grabbed the spoon to feed himself lol. Tomorrow we will take him off continuous feeds and get on  more of a "Normal" schedule. I will probably have to supplement through his tube with pediasure for a while. He got a brand new g-tube yesterday as well.

If I sit real still and put this bucket on my head maybe they won't know I'm here.

They cut his morphine in half today and will stop it completely tomorrow. He will go home on valium but I will have a weening schedule so he won't go through withdrawal. Tomorrow I will have a training class about giving him the injections he will need daily for his clot. Thursday he will have a swallow study to make sure that he is still not having any issues with food.

Friday we will be discharged! We are going to the Ronald McDonald House and leaving to drive home Saturday Morning.

I will write a bunch more later but didn't want to leave Jake's fans hanging. Thank you so much for all of the prayers. My little fighter is doing very well! AND HE IS SO QUIET!!!!!

Thank you for the Puzzles Bennett Family they have really kept me busy!

Baby Steps...

I am pretty tired so this is going to be short and sweet. It has been a long day. Jacob is doing well and progressing but has been pretty sad today. He has been sticking his lip out looking like he is going to cry then waving bye-bye. He is ready to bust out of this joint, I don't blame him.

We made good progress today. His morphine was weened from 8 times a day to 6. He successfully came off the high flow oxygen to the normal nasal cannula which means he can begin to learn to eat by mouth yay!!!! Speech is supposed to come tomorrow to work with him and give us the OK.

PT and OT came by and are going to come daily while we are here. He took 3 steps today which is great! He is getting his strength back. I notice a huge difference in that. He is able to sit up and hold himself up without shaking.

We replaced his g-tube (Twice). The first one the nurse put in was WAY to long and stuck way out. I told her the correct size but the system had something else. I called my husband to grab our extra at home and double check and the size I gave was correct. She then said she didn't know why formula wasn't coming back out and wanted to put dye in there and get x-rays to make sure the tube is far enough down. I told her that since he had not had food in an hour and before that was only on 45ml/hour the food would be digested by then so that is why formula isn't coming back up. But I humored her and agreed to the x-ray. Guess what, it was fine.

I have to chuckle because the day before I was worried that Jake was way too puffy. I told the docs I thought he needed lasix and everyone told me no he is not positive on his fluid balance so we don't think he needs it. The next morning I came in and the nurse told me "The doctors thought he needed lasix so we are giving him a few doses today". Uhm hmmm that sounds familiar lol. I know my boy.

So overall he is doing great. His spirits are down but he is making a lot of progress. Hopefully the Bronche looks great on Monday and we can blow this town. We will have to come back in a month for another Bronche but at least we can go home for a little while.

Thanks as always for keeping my beautiful boy in your thoughts and prayers. It is hard watching him so sad and defeated but I know he is making progress and we will be home playing soon.

Amazing...

I know that I already blogged today but I had to post this amazing video. Jake just keeps getting better and better. He was playing all day. Tonight I asked if he wanted to watch baby signing times and he clapped. I put it on and he smiled. And then the best thing ever happened.... He started cracking up.

God how I missed this.

Feeling Better!

Jacob had a rough night and was up most of the night having withdrawal symptoms. THey had to increase his oxygen overnight to help him since his body was having withdrawal but have been slowly decreasing it and weening him today.

He is going to have a scope on Monday. They are checking to make sure there is no swelling in his airway since removing his vent. If there is they would just put him on steroids but they said he looks and sounds great so they don't anticipate seeing anything. This will also allow them to come up with an aftercare plan. We will most likely have to come back in a month for another scope and then another at 3 months. He will need a 6 month scope but we hope to be able to do that one in Cincinnati since it is closer.

As far as this stay we just have to ween his oxygen and some of the meds and work on eating by mouth. We haven't been able to consult with speech yet because he is on high flow oxygen. As soon as they can get him to the regular nasal canula then he can start working on feeding. Right now he is  getting continuous feeds of Pediasure through his g-tube. He will most likely go home on Valium and Morphine so I need to get a weening schedule for him and may have to get at home nursing. They told me I may need it because he will still a lot of work to take care of him. I kind of chuckled and told them he has always been a complex baby and this will be nothing compared to coming home post Norwood. He was on 8 meds, oxygen, pulse ox, continuous feeds, gtube issues and doctors appointments daily. I don't like having to ween him off meds and deal with withdrawal however I will get a schedule from them and learn just as I have everything else. You kind of become a nurse when you have a hypoplast so I have learned to adapt and do what it takes to keep him healthy.

Reading his book!

Jake has been so much better today. He is still puffy but he is so much more alert. He has been fighting the nurses more which is a good sign and is playing with his toys! He has been doing puzzles and loves flipping through his book. He is even pointing at the pictures and pushing the button that says what it is. He wasn't even doing that before surgery. I think his hearing is probably so much better now that he doesn't have his noisy breathing blocking the sound.

Aidan, Andy and my mom left today. It was so hard saying good-bye to them. Aidan cried and it broke my heart watching how sad he was. My mother-in-law is here with me helping me out. Hopefully we will be able to go home in a week or so and we can all be together as a family.

Thank you for the continued prayers, they are working!

Road to recovery...

Hanging in there...

It was a rough night but Jake has been having a better day. He started having severe withdrawal last night and was shaking really bad and vomiting about 5 times an hour. I was very scared because he looked so bad. It is not uncommon because he was on a ton of medications and then they had to turn it all off to get him awake enough to extubate. They put the dex drip back on to help transition him and increased his valium that he was getting through his g-tube. They also gave him some rescue meds to help catch him up. It worked and he slowly started shaking less and has not vomited since last night. 

They had to put him on high flow oxygen to help since his oxygen SATs took a hit with how sick he got but we have been able to slowly ween that down today and will hopefully be going to the regular nasal canula. They are about to turn off the Dex IV drip as well so please pray he doesn't have any more withdrawal from that. It is so hard to watch him suffer and not be able to help him. 

Holding our sweet boy after extubation.

Everyone is very happy with his progress and there is even talk about sending us to the step down floor this weekend. He was not able to eat for a while because of his vomiting so speech could not come today. If he is successful at coming off of the high flow oxygen then they can start working on him eating by mouth. 

There was talk of us going home next week but we are going to see how it goes. His surgeon had said she wanted to do another bronche on Monday but today they said two weeks. I told them that we can't go home and come back a week later. It would be too much on Jake. So they are going to see if we can just go home and come back in a month for his bronche. Again we still have a lot to do before we can think about "Home" but it is being brought up. 

Andy, my mom and Aidan are going home tomorrow. If we knew for sure Jake could come home Monday they would stay and we would just go back together but since we have no way of knowing they need to get back. So we are going to play it day by day and if we get discharged before next weekend we may stay in the city for a few days and figure out a good time for Andy to come get us. 

Overall Jacob is doing really well. He has been alert and clapping and even playing some. He LOVES his beads of courage. As soon as I showed him he grabbed them and has even sat up to reach them. He got more beads today for everything he has been through over the past week. 

We have been holding him a lot today and giving him lots of love. We had a beautiful moment today as Aidan was able to sit and tell Jacob how much he loved him. Jacob kept feeling Aidan's face. Aidan told Jake that he was the best brother he could ever have. I am so blessed!

Brotherly Love

Me and my boys. Jake looks so sad.

Snuggling with Mimi.

Loving on Grandma.

Bubbles with Daddy!

Such a good big brother.

Aidan hanging with the grandma's.

EXTUBATED!!!!

Jacob was extubated and as you can see he was very happy about it! He is still shaky from the sedation but is doing well weening off of it. We put him on the nasal canula to help out a bit while he is still fighting sedation.

We still have a long way to go but today was a big milestone in Jacob's recovery. I am so proud of my amazing little fighter. To the moon and back baby, I love you.

Where do I begin?

So much has happened since last night and I have had about 3 hours of sleep so I hope I can explain it all clearly. First here is the picture I promised of me and my fellow heart moms...

Now for the madness... 

Last night Jacob's was waking up. I noticed he was opening his eyes a lot and seemed to be waking up. I told the night nurse and she gave him three rescues. He was still waking up and I continued to tell her that it was not normal for him and he should be out. I then felt the bed by his IV and it was wet. His IV that he was getting his continuous sedation from was leaking. I had her call in the fellow to look at it and they all thought it was flushing fine so it was good and to just keep an eye on it. I continued to worry about it and asked them to move his sedation meds to his other hand with the IV that was working. At this point he had not been getting his meds for at least an hour. Thank God I found it when I did. They moved the saline drip to the questionable IV and I noticed it was increasingly wet. I insisted that they call the IV Team. IV came and looked at it and unwrapped his IV board and immediately saw that it was leaking and infiltrating his skin, it needed to be removed. They called up another IV specialist to see if they could get another one in since he was down to one working IV. They came up but were unable to get one. After two tries of his eyes open and crying I told her to stop. It broke my heart seeing tears run down his face and him awake with all of this going on. Little did I know it would get worse.

So it was about 2 or 3 in the morning and I was afraid to sleep knowing that had I not found that IV he may have been much worse. I have loved all of his nurses until last nights. She just sat around and didn't seem concerned about anything. I had to insist on getting the fellow or iv team because she just acted like she didn't want to do anything. She had a very quiet personality and was nice but I just didn't trust that she would care for him. I finally gave into the exhaustion and told her that I would like her to spend extra attention to that IV since it was his only one.

I woke up at 7 as the ENT team was taking Jake down for his scope. I walked down with them and said good-bye to Jake and went to the 4th floor waiting room. The scope went by very quickly and we spoke to the ENT doc. Everything went well and his airway looked beautiful. The plan is to extubate tomorrow.

When we got back to the PICU all hell broke loose. I found out that after I went to sleep apparently the other IV went bad and was infultrating. The nurse who is supposed to check it every hour must not have because his arm was hard and cold all the way up to his shoulder. It infultrated into his tissue. To say I was furious was an understatement. His hand looked like a balloon. It was hard as a rock. Thank God they found it when they did or he could have needed surgery or worse. Thankfully his blood flow is ok and his tissue is ok so there is no permenant damage. The swelling has already started to come down.

I asked to speak with the charge nurse and told her how upset I was. I mean if it were just the first one yeah I get it, it happens. But the fact of the matter is that it is supposed to be checked hourly and the first one was only found because I was paying attention and found it. She thought it was fine and was going to leave it. I had to push and insist. Then when I finally go to sleep because it I can't stand any longer and it is her job to take care of my son, this happens. He had to go through a ton of pain and discomfort because of it and could have lost his arm had it been a different drug or gone on longer. It is unexcusable. So IV team came and took pictures and filed a report. The nurse will be spoken to as will the entire floor about safety and this type of thing.

My nurse today who was great and came into a crazy situation luckily kept a close eye on the new IV they put in while in the OR. That one was on the hand that previously infiltrated the night before. She noticed that IV was starting to look puffy and immediately told the fellow who happened to be right there talking to me about how she worried he would lose that one and not have access and thought he should have a Central Line. No sooner did she explain it to me did his last IV blow and they needed to put in an immediate central line. Poor baby was alert, not getting meds and no access.They were able to get his IV to work enough to get the paralytic in. They had to go in his jugular because his groin was occluded from his previous caths.

They got the central line in but the xray showed it was too close to his Glenn and wanted to make sure it did not affect his pulmonary artery because he will have more open heart surgery. They put in a smaller line which was easier since it was already in they just had to re-thread it. Jacob was pissed to say the least. He was shaking from the paralytic wearing off and he had not been getting meds so he was waking up. His heart rate was up to 170 and that was after getting a ton of sedatives. His pressures were also high for a while but he finally calmed down and has been resting for the last few hours.

The good news is that the scope showed a beautiful airway and he can be extubated tomorrow. He has also done very well with weening off of the vent. As of now he is on extubatable settings. He is breathing over the vent and I am very hopeful to a easy extubation tomorrow. Tonight we are going to try and keep his sedation pretty much the same because we don't want to rock the boat and risk him getting upset and having to go up on vent settings. Tomorrow morning they are going to cut down on his meds and then extubate.

We will then work on weening him off of the rest of the meds and start working on speech issues. He will have to learn to eat and use his airway again. If all continues to go well they will do another scope on Monday or Tuesday and if things look good we can talk about coming home. If we do come home we will have to be back in another month for another scope... but can't even think about that right now.

SO.... LONG DAY, STRESSFUL DAY, Jake is finally resting and please join me in praying for a peaceful night and easy extubation tomorrow.

Oh and a HUGE thank you to our roomate. She has been so helpful the past few days especially today while dealing with all of this. Her precious baby girl is thankfully well enough to go home soon and they went to the step down unit today. I must admit when I heard a baby was coming in our room I was nervous but she was so sweet and so good! We will miss you guys. Good luck, so glad you are busting out of here soon!