Saturday, August 30, 2008

Labor Day Weekend

We were able to get away from the hospital for awhile to attend the baptism of Tia, Liam, and Alek, and see some other family as well. We participated in the traditional boxball tournament in the church parking lot. Mikan had a pretty decent day; he is still not eating well, but he seems to be tolerating his lower dose of steroids, which is encouraging. His NICU girlfriend has been in the hosptial the last few days as well (the one from his date pictures back in late June/early July). She had an upper respiratory infection and was staying on the same floor, so we caught up with her parents.

We are still hoping for a discharge within the next week. If we can get nurses for Mon/Tues, we will try to discharge on Sunday; however, the doctor wants to see more nurses. This could take forever though, so we might try to get discharged and then just add nurses to our schedule as soon as they free up (if the doctor will agree to that).

Thursday, August 28, 2008

Hospital Length of Stay Still Questionable

After talking with the social worker this morning, we discovered that the best nursing we can get as of now is a nurse that will cover our day shift on Mondays and Tuesdays beginning September 9th. Right now that is not adequate enough for the doctor to allow Mikan to be discharged. So we are supposed to wait and hope that more nurses will pop up before now and then. If not...we are still stuck here waiting. Each day it seems like a new nurse or nursing supervisor up in the PICU comes by to talk to us and sometime in the conversation she says something like, "Well, the hospital isn't exactly a great place to live. It's a place where sick people come. We don't want him catching anything here. He'll be better off at home." This just makes the situation more frustrating because there is nothing we can do about it.

On the bright side, Mikan's steroid dose was reduced again today to .2mg. He had an eye exam that went well; however, we are currently trying to get him to relax after the exam. We can't get his heart rate under 200, so he's getting tylenol. He's not too happy.

Tuesday, August 26, 2008

Mikan was a little fussy today. I think he was a little upset to not see his mom two straight mornings. Tomorrow starts Jenna's weekend so that should solve the problem. Mikan is getting better at tracking with his eyes. He is also pretty good about standing on one of our laps. He stood up today with support just with his hands, then he dropped to his knees. His legs only have to support between 11 and 12 pounds, but at least he enjoys being up. Also, he does a good job with shifting his weight from leg to leg like he is bouncing. He would be very entertaining to see in a bouncer chair. We're hoping for a steroid wean later in the week, we'll see. Mikan always has a very serious look on his face. I think he emulates the faces most people gave him when he was very young. He is also a Gensic, so he saves the smiles for special situations.

So were waiting for an agency to take our home nursing case. It looks like we are going to try to go back to all the agencies and see what they can give us.

Sunday, August 24, 2008

Update

It's Sunday night and we are sitting with Mikan in the PICU. Tomorrow, we'll hopefully hear from a home nursing agency about their staffing possibilities. Mikan is currently on a 0.25 mL dose of steriods each day. His ventilator is still 12 per minute. However, he breathes more than the ventilator back up rate. His pressures are 35 cm of water on pressure control and 33 cm of water on pressure support.

Mikan does a good job of supporting his weight on his legs. While this is only around 11 pounds, he likes to bounce up and down when we hold him. We are trying to push the doctors to wean his support (steroids first and then ventilator second). But, our doctor changes each week because our pediatrician is part of a group of pediatricians who rotate weeks of visiting the hospital.

Saturday, August 23, 2008

Mikan is doing pretty well. His feedings continue to be like torture. He is only taking about 10 to 30 cc's at each feeding. We were hoping for immediate progress after the surgeries, but it looks like it will take some more time. However, Mikan's respiratory health appears to be improving, which is the most important.

We were moved from our single room to be more out in the open at the PICU. They had some more critical patients that needed the low stimulus rooms for recovery. Tonight a little baby in the PICU passed away. That was the first time I had been present for the passing of a child. Jenna has been around for couple a while ago at the NICU. I don't know how I feel. Certainly lucky, but still wishing I could do more for Mikan than I am currently. I think staying healthy and sane are probably two of the more important things that Mikan needs us to do right now. We are waiting to hear back from some of the home nursing companies we think we'll have some answers by next week. We'll see.

Thursday, August 21, 2008

Mikan is now allowed to eat by mouth. Unfortunately, he is still only tolerating about an ounce at the first couple of feedings. We'd like him to take about 3 to 4 ounces.

Good news is that Mikan's steroids were weaned from 0.3 to 0.25 without any visible negative effects. This is one of the small steps for him to wean from the ventilator. Jenna is once again being fed by the hospital. They decided since she is still pumping and providing all of Mikan's meals, they could at least provide some of her meals. Nice.

There are two agencies putting out their feelers for home nursing right now. We hope for honesty.

Go Cougars, Beat LaPorte.

Wednesday, August 20, 2008

Pics from the hospital

John and Mikan in the ER; Mikan's distress over hearing about the 3 surgeries he would need; Mikan being his ridiculously cute self.





Some Pics from home, just before going to the hospital again.






Tuesday, August 19, 2008

Mikan is recovering from surgery. All the surgeries went as planned. He was pretty irritable right after surgery and Monday night. He slept much of Tuesday. The only painkiller he received was Tylenol. Wednesday morning will be his first opportunity to eat without the tube going down his nose. We hope that his feedings will improve. We think he is very hungry. He incessantly sucks on his pacifier. Hopefully, by the end of the week, Mikan's steroids will be weaned a little.

We will be here until Mikan recovers and a home nursing agency takes our case. Our first choice for home nursing already has informed us that they will not be able to take our case. So now on to agencies 2 and 3. We'll see.

Thanks to Grandma Kartje for spending the night with Mikan and allowing Jenna and I a night at home to slept.

Jenna is excited to be spending the next 5 days with Mikan at the hospital.

Saturday, August 16, 2008

Another Weekend Here

After talking with a seemingly endless amount of doctors over the last few days, it was decided that Mikan will get 3 surgeries in one on Monday (or whenever all the surgeons can organize their schedules). During a suck-swallow study and Upper GI study, doctors noticed some signs of reflux in Mikan and a high risk of aspiration. Apparently he doesn't have a strong swallow unless rice cereal is added to his breast milk. We discovered this after barium was added to his milk and he swallowed in front of an x-ray machine. The milk isn't going directly to his lungs, but it is close enough that he has a high risk of aspiration. In addition, he does have a reflux problem, therefore, his pediatrician is recommending a Nissen operation at the same time that he gets his G-tube (The top of the stomach is wrapped around the bottom of the esophagus to prevent food from coming back up).

Unrelated to his feeding issues, Mikan's granuloma in his stoma has increased in size, so he is going to get the extra tissue removed to make sure his airway remains open and easy to access. So Mikan's 5th, 6th, and 7th surgeries (all minor) will hopefully take place at the same time.

In the meantime, Mikan is looking good, staying active, and keeping the nurses on their toes. His poop looked like pale yellow spray paint today and all of the nurses were pretty confused. They said they would "watch it." There seems to be a lot of "watching" things here.

On a side note, on Friday morning, a nurse from our home health agency showed up at our house. Not the first communication problem we've experience with them.

Thursday, August 14, 2008

Mikan is going to get a G-tube put in next Monday because he is failing to eat adequately. The follow could be the reasons for his poor eating:
1.) Reflux/heartburn
2.) The feeding tube that he has right now could be causing a sore on his esophagus that irritates his eating.
3.) He started late on the sucking because of being on a ventilator and it is just a developmental delay
4.) He might be aspirating. This is where the milk goes into his lungs and not his stomach.

Jenna is going to be off from work until next Monday. We're trying to get her off on the day of surgery also. He is getting tobermycin as an inhalation antibiotic. He will get this for the next 4 weeks to treat his staph and pseudomonas.

Tuesday, August 12, 2008

Mikan had another episode today. He needed to be bagged and they even did some chest compressions because his heart rate dropped into the 30's. Apparently, his trach tube was displaced from his trachea and found another opening in his stoma. So, he desat and they tried bagging him but this did not work. Therefore, they changed the trach tube. Upon changing the trach tube, Mikan was once again ventilated, his color came back and he was back to normal. One of the nurses that was there told us, "It looks like he had a little meeting with angels and then decided to come back." Not a real reassuring comment. I wish Jenna could spend all of her time at the hospital.

Anchor Home Health called today. They decided to let us know that they did not have staffing for Mikan any longer. It feels like one of those situations where the employee is about to be fired so they quit.

Today was the first day for New Prairie. A little early I think. The students were good. I am sure they will continue to to be this way.

One interesting observation. Mikan was released from the hospital on the last day of St. Adalbert summer school (where I was the principal). He was then readmitted to the hospital the day before school started in the fall at New Prairie.

Tomorrow Mikan has a visit with a surgeon to see about putting in a G-tube. This should help the development of his digestive system because of the elimination of nasal tube. We do not know when surgery will be. Hopefully, we'll be able to talk with the surgeon tomorrow.

Other than that Mikan continues to maintain his respiratory status. No bacteria is growing in his blood culture. There is some stuff growing in his lung secretion culture, but the antibiotics he is already on should take care of that.

We'll be here until the home nursing is corrected, he recovers from surgery, and he is clear of infection. We think home nursing will be the limiting reagent in this reaction. We anticipate waiting longer on nursing than anything else.

Monday, August 11, 2008

Mikan will be in the hospital for a little while. His feedings continue to be disappointing. He eats about an ounce then becomes irate whenever the bottle is brought close to his mouth. He'll suck on a pacifier, but resists the bottle. So a G-tube could be in the plans for this week. Also, we have decided to go with another home care agency so long as our insurance will support it. Our social worker is working on this.
He did have a slight ear infection, so he is on the antibiotic augmentin for that. Tonight, he had some greenish secretions around his trach opening which the respiratory therapist thinks might be a bacteria of the genera pseudomonas. We'll see.

Sunday, August 10, 2008

Back in the hospital again.

So we're back in the hospital. Last night at 2:43 am Jenna and I were awakened to the sound of our night nurse yelling our names. We ran into the living room to see Mikan's face blueberry colored. Therefore, I started to give him breaths with the bag while the nurse ran to turn up the oxygen flow. Then the nurse ran back into the living room to bag him while I called 911. After bagging him for a little bit his face regained the appropriate color and he started breathing again after having passed out. The New Carlisle Fire Department came quickly and stayed until the paramedics from Northwest South Bend arrived. By the time the paramedics arrived, Mikan was breathing somewhat normally, but was requiring about triple the amount of oxygen he did prior to the incident. Therefore, Mikan and Jenna rode in the ambulance to Memorial Hospital. I followed shortly after with some of our stuff.

We do not know exactly what happened. The nurse does not know either. Without knowing the cause we are a little worried. Also, apparently the monitors did not alarm before or during the situation, except when I removed the circuit to bag him. With all of this uncertainty, we are concerned.

Currently, Mikan has returned to his pre-incident baseline. His feedings are not going well. He may get a g-tube before we return home. They did a lung x-ray and it showed no signs of pneumonia but signs of hyperextension. Therefore, the intensivist actually weaned Mikan's pressure from 45 to 35. This will help prevent some of the lung damage associated with being ventilated. Mikan appears to be doing well with the new pressures.

We hope this is an opportunity to change our home nursing situation. We will talk with a social worker tomorrow about exploring options. We understand this may keep us back in the hospital for awhile. We feel the following are the best places for Mikan to be...(in order)
1.) At home with adequate home nursing support.
2.) At the hospital.
3.) At home with inadequate home nursing support.

Because number one isn't an option currently, we'll be in the hospital until it is the option.

Finally, Jenna, Nikole, Cousin Ben, Connor, and I were going to go to Lake Michigan today as an end of summer fling. Apparently, Mikan knew the waves were going to be too (4-7 feet) big for Connor to handle, so Mikan did all he could to save Connor. Connor, your welcome.

Saturday, August 9, 2008

Mikan was on an oxygen flow of zero liters per minute for about 3 minutes during his afternoon nap today. Therefore, Jenna and I did a little celebration dance. Then his sats dropped so we turned him up. He is currently in about 1.5 liters per minute flow. We may need to be getting a new pediatric flow reducer.

His steroids were weaned from a 0.35 to 0.30 and this has not appeared to have any detrimental effects on Mikan. We think that by weaning him he'll pass the doping test after he wins the cheek size gold medal.

We have not had a nurse since Thursday at 3 pm. Now it is Saturday at 10 pm. Our insurance approved 16 hours of service each day. Thursday night the nurse canceled and was taken off the case. Friday morning there was a scheduling error and finger pointing between nurses and schedulers. Friday night the nurse had an emergency, we weren't called until about midnight. This morning, no one was scheduled. We got a letter from the Indiana Board of Health informing us that they were beginning their investigation. They also gave us a contact for the person investigating our class. This should be interesting.

Jenna and I are set on having some sort of restitution from Anchor for time missed. We're not sure how this would look. But, we're aware of how fortunate we are to be two competent adults in this situation who aren't really working yet. We wonder about others in more difficult situations working with Anchor. We would like to be a part of their changing the way they work with patients or ceasing to work with patients.

Friday, August 8, 2008

Same Old Same Old






No nursing again today. Big surprise. Everyone we talk to on the phone at the agency reminds us that with home nursing, this is a pattern, and they can't force nurses to work hours, regardless of whether our insurance doesn't roll over nursing days. We are hoping to get some sleep tonight with a nurse, but this 30 day period is flying by fast and we are worried we will be left in the dust with no nurses even if our insurance does grant us an extension.

Mikan's doctor gave us permission to lower his steroid dose today to .3mg. He hasn't seemed to notice the difference yet today; however, his feedings are still poor. It's looking like a temporary G-tube is in our future.
Today Grandma Gensic and Grandpa Kartje came to visit. Mikan was on his best behavior. He was very alert and playful. If you ever look at his eyes when you are at our house, you'll probably want to go right to our freezer and eat some blueberries. His eyes look very similiar to blueberries.

Tonight Jenna had her last summer session class. I tried to give Mikan a bath while I we were alone. The result, poop on my shirt. Really, though, his poop really doesn't smell that bad. Jenna has been busy the past week, therefore no pictures of said poop.

Once again, a night without a nurse. The nurse that canceled for tonight has been taken off of Mikan's case. This might have been the result of a conversation I had Anchor about this nurse. When our case supervisor called to tell us about the cancellation and also let us know about upcoming gaps in the schedule,

I asked her, "What should I be doing about this? As the father of a kid on a vent who qualifies for home nursing through insurance, but is not receiving the full benefit?"

She replied, "Well, we are looking for other nurses and when I go home at night I pray about your case."

"Okay, good night and thanks."

Tuesday, August 5, 2008

Mikan is continuing to grow. However his feedings have not been going well. The last two days he has only sucked down about 15% of his calories. We will call the pediatrician tomorrow. This appears to us to be guiding Mikan toward a G-tube. We'll see.

He is currently in 1.5 liters of oxygen. This is trending in a good direction. He is getting noticeably bigger. My nickname for him is "Chubba Bubba." Jenna's nickname is simply "Yoda Bubba" or "million dollar baby." Million dollar baby would not be appropriate, yet. Maybe, "0.745 million dollar baby." Ned Flanders did not have health insurance because he viewed it as a form of gambling. I'm glad I'm not Ned Flanders.

Monday, August 4, 2008

Mikan is maintaining his lack of schedule. Right now he has no real sleeping patterns or eating patterns. He likes to snack during the day, eating about 1 ounce. But sometimes he'll go for 2.5 ounces. He is becoming a strong cougher. You can hear this cough through his circuit. Usually after he coughs, he needs to be suctioned out of his lung secretions. Coughing in general makes me nervous because I think he is getting sick, although his secretions were white over the weekend. Apparently, coughing is sign his lungs are getting stronger. And we like strong lungs.

Grandma Kartje (Nina) and Alexa and Alexa are visiting from Sunday afternoon until Tuesday. Grandma Kartje is learning how to take care of Mikan and his nuances as she will be taking care of him 2 days a week during the school year. Last night she got an "extra special" opportunity as our night nurse called in sick and Anchor failed to reschedule another nurse for the assignment. Also this weekend, Anchor failed to schedule someone to work 4 hours on Saturday and another nurse who was supposed to do training on Sunday failed to show.

Anchor's Night Average: Who claims to be "Specialists in Home Ventilatory Nursing Care"
Night Nurse One (NNO):
Call Offs 3, Fill in 1. 1 for 3=33.3%
Unless you're in Europe, that's failing. Also, NNO has been scheduled 7 times. NNO is 4 for 7 on attendance. According to the NPHS attendance policy, 2 more and she will fail the class.
Night Nurse Two:
Call Offs 1, Fill in 0. 0 for 1=0%.
I don't think it matters where you're at on this, 0% is failing.

We continue to thank our family, friends, and work support.

Friday, August 1, 2008

Weekend

After a day full of calls to our home nursing agency in addition to our insurance company and the accredidation company for the state, there is a tentative plan in place for the remainder of our nursing days. We are looking into possibly switching agencies or adding a second agency soon. This will probably depend on whether or not we are granted an extension through our insurance company.

Mikan had a great day. He stayed awake and happy most of the day. We had Betsy visit with Atticus and Nora and the Mikos stopped by as well. Earlier this week Nurse Dee from the NICU came and so did the McCoys and the Saouds and Coach Rek. We welcome visitors since it is difficult for us to get out much.

It's a good thing Mikan doesn't appear to be sick anymore, because the trach culture the doctor ordered 2 days ago through our nursing agency never was completed despite our follow up phone calls. I guess if we want our son to really be treated we have to pack him up and drag him to the doctor's office or the ER. Luckily he's a fighter and is testing out his own immune system.