WE ARE GOING HOME!!

Today is the day, Jacob is coming home. We were waiting for the 10th treatment of his antibiotics. Should start it around 3PM and takes 4 hours to complete. Other than that, his belly looks good and he is eating. Well, I should say he loves to eat during the day. At nights, he only eats 2 ounces. He is usually sleeping while eating. We have to wake him up to eat still because they are wanting him to gain weight.  He actually lost weight from last night. As a CF patient, his body doesn't nourish all of what he needs. Thats why we are to give him enzymes to help. So with him eating is a big thing. and continue to gain weight.

 Here is Jake, June 15 when we took him into the ER. The second picture is of him today. He was so sick. I just can't believe that it would happen so fast over night. If you think something is wrong, don't hesitate, take your child to the doctor! If we waited any longer, after surgery, his intestines would have burst. I wouldn't be able to live with myself if something worse happened.

This is dragon breathing treatment. He is tolerating it more. Mixed with saline and Albuterol. This helps with breaking up any mucus in his lungs. He coughs and sneezes during it. 

Today, a nurse who will be coming to our house weekly and change Jake's broviac dressing came in and showed us how to flush his IV line. Showing us how crucial it is to make everything so sterile. Another lady came in and gave us a percussion massager. Said it was covered from insurance. Jake loves it. We have to do this twice a week. On his back, front and sides under arm pits. 

 Yesterday, we had two visitors. Kathyrn from work brought us lunch. Thank you so much! She brought us Olive Garden, soup and salad. Our room reeked of garlic, but that was ok. It was good!

 Here is Jobe feeding Jake. Stared at him the whole time while Jobe sang to him.

 One of our nurses we had during the week, who is obsessed with Jacob, turned on the slushy machine and gave us slushies. We told her the story and felt bad I guess.

Here is another picture of today. Will miss all of the nurses but glad to sleep at home. We have a follow up apt with the surgeons, next week, so hope they will see him progressing and then take out the broviac.

He Loves Visitors

Here we are still in Jake's hospital room. Slushy machine is turned off and we are both bummed. They are so good! I don't want to turn it on because they it is so loud. Our bathroom is right next to the room, you can hear it from the bathroom. Here is a picture of Mr. Jacob at nap time. I brought him a little outfit that buttons in the front so they can still get to his IV. Now he isn't naked.

We had some visitors today, this morning mom came around 9AM so I could go home and get a shower before my hair apt.  Thanks MOM! Jake already loves his Pam'ma. I am blessed to have an awesome aunt who does hair. Thanks JULIE!  She did a Brazilian Blowout on my hair. Hope its not so fuzzy when its dry. I saw Sam from work in the parking garage. He brought his son in for a cancer treatment. I think between Sam and I we know this hospital from one end to another.

Tony came up after work, around 2PM. Mike (Tony's dad) came up and brought up Marion's Pizza. Thanks Mike! So much better than hospital food. Theresa was here too when she got off work.

Around 7PM, my friend Katie, her daughter Brynn and mother, Mamma P came to visit. That was very sweet of them to see Jake. He appreciates all his visitors. He is so loved. A lot of the nurses and doctors say Jake's room is the most popular room with visitors. Even up in the NICU. I tell them he is a celebrity.

Jake is now having his breathing treatment. He gets this four times a day. Then percussions to break up any mucus in his lungs. CF patients have more sticky mucus than usual and leads to respiratory infections if not done. He sometimes tolerates the treatment, or he is screaming on the top of his lungs.

Hospital Observance

While staying here at the hospital, I am very aware with my surroundings. Smells are the top of the list. Elevators are the worst. We now take the stairs. The elevator in the parking garage, if you ever ride it smells like stale french fries and ketchup. When we would get onto an elevator, after someone got off, it always smelled like a mixture of BO and an ashtray. Nasty! People take care of your hygiene! They are the dirtiest of the hospital. Probably never cleaned.

I loved the smell going into the NICU. It was a clean smell, mixed with diapers and baby powder. I know I am weird.

I thought this hospital was smoke free. Every time I leave, I walk over a cigarette butt. On the side walk or in the parking garage. For your health and everyone's health, stop smoking! It makes you smell. Not look cool.

Since I have stayed here, with the little man, for so long, it would be nice if this hospital would have a workout center. For the doctors, patients and parents staying at the hospital. I feel so lazy laying around pumping. Only exercise I get is walking down to the cafeteria.  I know i could probably start being a "mall" walker around the hospital but I don't want people to talk.

The plus side of being here on Tuesday's, it is Chick-fil-a Tuesday. You have to come early. They sell out by 1PM. We experienced that one day and had to have meatloaf.

No new updates about Jake. He is going to be released on Friday. He will leave with his broviac IV in. We will make an apt for doctors 10 days from now, I do believe. Have a check up and see if we still need the broviac IV. Hope we don't need it and he can have it taken out and we don't have to have any more surgeries. This little boy needs to live and have fun outside of the hospital. Mommy and daddy need to go out and have fun in the real world.

No Communication

This morning is looking up for our little man. His surgeon came in and said, oh he looks awesome he can go home today or tomorrow. Maybe tomorrow. He also got mad that Jake still had his foot IV in. He went out to the hall and said, Why does he still have his IV in? I ordered for it to be out last Friday! So Jake's foot IV is out and they stopped his TPN and Lipids. He is now on half feeds (full feeds this evening)

Dr. Bacon came in, the pulmonary dr. She said he will be here until his antibiotics are done. He had a bacteria growing in his lungs/throat. When they did some suction from the ventilator, they did a lab on it and showed the bacterial. But everything looks good now. Just need to finish his 10 day antibiotics. Today is day six. That means we should be leaving by Friday morning.

We could leave tomorrow, but he would need to finish his antibiotics at home. He will be coming home with his broviac catheter IV. We could do it at home. Every 8 hours he will need it and then the nurse would come to our house and change his dressing. The area of giving his antibiotics would need to be sterol. If any germ get into the line could possible have more of an infection or bacterial growth. Not sure if I want to go that direction if anything would happen. I would feel so sad. It is in the heart area. He would be back in the hospital.

This was this morning when he was having his percussions. He loved it. Was so relaxing. He is a ladies man. He had four nurses around his bed. Loving on him and of course doing vitals, taking out IV and his percussions. I told him he had to many ladies in 

his bed.

He loves his new hat. A lady who worked with Amy (Eric's GF) made this hat for him. 

Today Julie and mom came to visit. Brought me My Favorite Muffin. Tony is at work today. Julie wasn't feeling good this past week but really wanted to see Jake. I told her she would have to wear the gown and mask. No germs in this room. If you do come to visit, make sure you wash your hands. Soap and water please!

Julie took this photo. He is now happy he gets to eat food and not pedilite. Pain meds every six hours. Tylenol and motrin. 

Today they are doing work on the hospital. Workers are on the first floor. We are on the third floor. The drilling and hammering started at 7AM and it sounds like they are on the floor under us. It is so loud! It sounds like they are jackhammering. In the little kitchen, we can use on this floor, has a slushy machine. It was broken and Tony really wanted some. I asked the nurse yesterday when it will be fixed. Well today it was fixed. I asked the nurse if i can try it. She said it was for patients only. Really? I will drink it for my son. He would have loved it. Well I just snuck another one! Blue Raspberry. Shhh don't tell. 

The ER has two flavors of slushies. Tony and I got them when we came in back on the 15th. We pay a $200 co pay when we visit the ER, so its our very expensive slushy!

Cranky

Jacob has been up all day besides a 30 min nap. This morning he had his last pedilite and we started him on breast milk. He started at 15 ML, we are going up 5ML every feeding. At 7PM he will have 30 ML. He is starving! Keeps looking for more after his bottle. He knows his paci is a joke. Nothing comes out.

This was him this morning. Wants to know what we are doing every minute of the day. I maybe got a 15 minute nap. Tony came back after work. 

Today, our visitors were the Wessel's. My sister, Sarah and bro-in-law, Jack. They brought us Fusian. Is it bad that we had Fusian three times this week? I don't :) 

Here is Sarah and her nephew. 

Cameron and Savanna came to visit too. This was a therapy dog named, Rocky. St. Bernard mix. He went up to cameron's hips. He was huge.

We have noticed on the weekends this place is dead. Usually this main hall is packed with patients, doctors and nurses.  Tony and i went down to the cafeteria for dinner. Grilled cheese and tomato soup wasn't bad.

Jacob was still awake when we got back. I ask the nurse for a bouncy chair that vibrates. We put this in his bed and now sleeping a little. Wonder if he will sleep in this tonight and myself. I hope! I am exhausted!

Lazy Day

Jacob has been sleeping all day. In between his breathing treatments and feedings. Tony and I watched three episodes of The Orange is the New Black and soccer at 3PM. Then we both passed out. Mom and Dad showed up and took us out to dinner. We needed to get out and see some sunshine. They took us to Dewey's Pizza by UD. It was nice to leave but sad to leave Jake at the hospital. Tony left from Dewey's and went home. Mom and Dad took me back to the hospital where I sleep for the next 6 days unless he comes home.

Another nurse came in and asked for me to wipe Jake down with 2% Chlorhexideine Gluconate Cloth. It was warm. I guess he needed this since he has a broviac catheter.

Jake has been up since I got back, he has been fed and now another breathing treatment. Hope he will sleep tonight. If not, Ill be a zombie tomorrow.

Tomorrow is going to be good. We will start him on breast milk. He acts so hungry. Rooting and his paci isn't doing much in that department.

No Sleep for Daddy

Last night, Jacob cried most of the night. Tony only got three hours of sleep. Not all at once. Brought him a large iced coffee. He will need it. The nurse last night took out his suction tube from his nose to stomach. They started to give him clear liquids. Pedilite for now. Tomorrow will start back on breast milk. They are giving his stomach a rest. He is having stools so that is good. They also gave him a new paci. A smaller one so hopefully he doesn't spit it out and then he wakes up.

Head IV is out too! He is starting to look normal. Maybe we will leave next Friday. Fingers crossed. 

Please go to bed

Tonight, tony let me go home to sleep. You don't appreciate your own bed and sleep when you sleep on a hospital couch. Next few nights I will be on that couch while tony works. But today has been bad. Jake has not taken a nap all day. I mean he has been up and cranky all day long. Maybe dozed off for 5 mins. Then woke up crying.

I just text tony to see how he was. Maybe sleeping?! Oh no, it's 10:30 and still crying and looking around. Nurses gave him Tylenol and another pain meds to see if he will fall asleep. Dear lord please let them both sleep. 

This was earlier today. 

Wally bear. Changes his outfit everyday. Hospital mascot. Oh and we also changed rooms. We are now on the third floor. Left the picu. I will miss all the nurses on that floor. I feel like on the third floor they forget about us. Well off to bed until a new adventure tomorrow. 

Bath Time

This morning, I brought Tony Golden Nugget for breakfast and I made it just in time for rounds. Tony said last night was bad. He was up half the night in pain. They gave him some pain meds to calm him down. This morning, in his suction tube, it was black like coffee grounds. Doctors said they have seen this color. They are monitoring it. It looks like his stomach lining is irritated and can have some blood. They are talking about taking that tube out for sucking and enter another tube for feeding. Jake was rooting for some food last night. Heard more bowel sounds. Hope he has a stool today.

Here is a picture of him this morning

Less swelling. His eyes still look bad, to me. He got a bath this morning too. He loved it until he got cold and screamed. 

Thanks to Erica (Bruno) Hummel. Friend from High School brought us snacks and drinks. We will be here for awhile. Doctors are talking about moving us to the third floor today. 

Ventilator out

5:30pm doctors and nurses came in and took out Jake's ventilator. His throat is swollen and he was trying to cry he sounds hoarse. 

He had an issue with his breathing because he got upset and kept trying to cry. Since his throat is swollen from the ventilator his airway started to close up. Three nurses and a doctor ran in. They put something up his nose with saline to help his nasal passages and helped with oxygen. It helped, but he looks at you like, what the hell are you doing to me. Help me! He has a rash or they call baby acne all over his face. 

Hope he sleeps well tonight and breathes through the night. Scary to think your child will stop breathing. Tony is staying with him tonight. It's so sad to leave the hospital again. Im so upset my child has to lay in the PICU and I can't help him. To top everything off, I left my pump equipment at the hospital. Hope I don't explode.

Thanks to mom today, she brought lunch, Fusian. Nancy and Andrew came to visit too. (Tony's aunt and cousin) Andrew came home from Korea after living there for two years. Haven't seen him since he left. 

Percussions

I took a video of Jake having his breathing treatment through his ventilator. It looks very sad, but it didn't hurt him. As a CF patient, his mucus in his chest gets thicker. On one of the x-ray's his chest looked full. They do this four times a day. It wouldn't let me upload the video… :(

This was just now waking up under sedation. If he keeps this up Dr. Joshi will pull out his ventilator. Maybe around 4PM

A New Day, A New Jake

This morning, I woke up at 6AM. We had so many nurses last night. They weaned Jake off sedation at midnight, then around 4AM the nurse said Jake opened his eyes and was looking around. When I was done pumping, I went over to talk to Jake. He opened both eyes and was just staring at me with a concerned look on his face. I explained to him he needed to get better and he could come home again.

The resident doctor came in this morning too. She checked his bowel movements. She said she heard more than she did yesterday. That is a good sign! We were waiting for his bowels to wake up from surgery and he can start pooping again. And eating!

Still waiting for the ventilator to come out. Will take pictures when this happens! I feel today is going to be a good day. Thinking positive for my little man.

This is him on his one month birthday. 6-12-14. We had dinner over at mom and dad. Pa'pa got his camera out and took so many picture of him. We had tacos for dinner and we brought a cherry pie for dessert. Dad loves pie. 

Broviac Catheter

Right when Jake left for surgery around 3:00PM the power went out to the hospital. The back up generator came on and the fire alarms starting to go off. Turns out workers, across the street working, cut power line. The AC of the hospital went off too. It was so hot in here. 

We got word from the surgeon that they wouldn't start his surgery until they got the clear. Tony and I ate at the "yummy" cafeteria and came back around 5PM. Jake was already back and they all said he did awesome. Prayers do work! Thanks to everyone thinking of Jake and praying. 

We are waiting for the ventilator to come out. The nurses and doctors will be taking it out tonight. They will wean him off sedation first, let him wake up. The other IV's (head, foot, and hand) will come out when they stop working on little baby veins. Once the ventilator comes out, his swelling should be going down. So sad to see his eyes swollen shut. 

They noticed he had mucus build up in his lungs, they attached a breathing treatment on him and shook him. I got a video  of it. He didn't mind it because he was sleeping.

Sitting here in his room, it is so hot in here. No air flow. Hope i can get some sleep tonight on this hard bed/couch. 

Thank you to everyone with all the kind words and prayers. It is nice to know how many people actually care about my little one and family. 

One month has gone by

May 12, 2014
Our son, Jacob Anthony was born at 1:23 PM at Kettering Hospital. 6 LBS 8 OZ 20" long. Our whole world changed at Wednesday morning around 2AM. Tuesday evening, Jacob was sent to the nursery for his car seat test and we were to go home Wednesday morning. Around 2AM, 5-14, the NICU nurse came into our room and said after a feeding Jacob's stomach had gotten descended. It was hard to the touch. Took some x-rays and noticed he had Maconium ileus. He needed emergercy surgery to take out of his intestines.

Tony and I packed up our room and I was released. Jacob was transferred by ambulance on May 14 and Tony and I drove over to Dayton Children's Hospital. I was a nervous wreck. I cried so much and so long I didn't know if I had tears left. Around 5PM, Jacob under went surgery and had his intestines removed and the "tar" stool scraped out of him. We were in the NICU for over 2 and half weeks. We found out within those weeks, Jacob's Ohio screening test came back positive for Cystic Fibrosis. I was a wreak again. I couldn't stop crying. I though I failed during pregnancy. Both Tony and I are carriers for CF which then passed off to our little one.

He was doing great. Eating well, started to poop good. We kept telling baby Jake we would have a pooping party when he finally pooped.  Jacob was released from Dayton Children's on May 31, to come home.

We had a great two weeks, at home, with Jake until Sunday morning, Fathers Day, June 15, 2014. At 11:30 PM (sat) Jake had his last feeding before he went to bed. He took down 5 oz. Still cranky, wouldn't go to bed. We finally got him to sleep until 2AM (sunday) he woke up crying. Thinking he was hungry again, I made him a bottle. I had him sitting up trying to get any kind of burp, air bubble out. He started to projectile vomit on me and himself. It was milk he was puking. This happened four times in a row. I changed us and finally got him back to sleep until it happened again at 3AM. Now i knew something was wrong. He loved to sleep on his stomach and i was told never to leave him unattended so I put him on his tummy while I slept next to him on the floor in the living room.

Around 8AM, he woke up crying, I thought he would be hungry since he really didn't eat since 11:30PM the night before. He wouldn't eat anything. He was pale and his eyes were sunken in. I woke up Tony and told him we are going to the ER. Something was wrong.

After they checked Jacob at the ER, they admitted him to a room. Needed a bunch of X-rays and then a cat scan. Jacob kept having projectile bile vomit, we all knew something was wrong. The dye that was going through his intestines was going through slow. Knew he had some kind of blockage. Only surgery would tell.

Monday, June 16, 2014 Jacob went under his second surgery and had 15" of dead bowels removed. They said this was not Cystic Fibrosis related but previous surgery. His intestines moved around and twisted creating them to die off. He came out of surgery great. He has been on a ventilator since but has been breathing on his own. They are waiting to take out the ventilator because today, June 18, Jacob will be going through another surgery. Since his PICC line (IV) wouldn't go in, they are surgically putting in a broviac catheter. A permanent IV through his collar bone down pass his heart.

The surgery is today around 1:30PM. Hope everything goes well. The ventelator will then come out and his swelling will hopefully go down. They also noticed around his insicion it is red. Keeping an eye on it that it is not infected.

Ill keep everyone posted through Blog.