Monday, June 30, 2008

Monday




So Mikan's home health care for the thirty days after his discharge will be split between 2 agencies- one located in Valpo and another in Merrillville. The doctors have discussed the possibility of sending Mikan home on a continuous feed pump that would slowly pump milk through Mikan's feeding tube at a certain rate during the night. The amound of food he gets during the night would depend on how much he is able to take orally by day. This would allow him to sleep during the night if he wanted and eventually learn to eat more during the day. They are also considering splitting his steroid dose in half, administering half in the morning and half in the evening. Hopefully this will make his mornings a little easier. One doctor suggested that Mikan may be metabolizing his dose faster because he is getting bigger (He's 8lbs 12oz by the way). So it's still looking like we have some loose ends to tie up here. He probably won't be home this week, but maybe the end of next week.

Sunday, June 29, 2008

Another Sunday

Mikan had his usual round of stressful morning and mellow afternoon/evening. We haven't heard anything new about nursing care. Hopefully we will have some answers by tomorrow. We did a lot of shopping today in preparation for the homecoming: antibacterial wipes, hand sanitizer, new slippers we only wear around the house, etc. Mikan is making us create a sterile environment inside our house.

Saturday, June 28, 2008

Mikan is still getting 10 bpm and is in about 35% oxygen. He is also 8 lbs. and 12 ounces (almost 4.00 kg). He had a pretty quite day and we were able to play with him for awhile in the morning and evening.

Last night Grandpa Gensic and Gam Gam visited with Chuck and Roe. We enjoyed the visiting, dinner, and breakfast shared by all.

Today Jenna and I did a little more preparation for Mikan to come home. All the carpet from the living room is gone and the concrete floor is awaiting the laminate to be installed, maybe on July 4th. We have a busy week ahead. But about two weeks from going home. Our home nursing will not be through Memorial Home Care, but instead either from agencies in Valp or Merriville, we'll see. Memorial will still be providing equipment, just not nurses.

Friday, June 27, 2008

More of Mikan's Ride


Mikan's Big Day Out








Mikan's mohawk was the result of surgi gel combined with a few nurses with a little extra time on their hands. Everyone loves Mikan's hair.

As a result of some good gases this morning, Mikan's rate was dropped from 15 to 10 bpm. He's been in about 40% oxygen for most of the day. Today we put all of Mikan's travel equipment together in his stroller and the doctors let him go for a ride outside of the NICU. He loved it.

We found out today that we will have to switch home health care agencies because our first choice could not accommodate 16 hours a day for a month. A few of the NICU nurses have volunteered to apply and work for the other home care agency in addition to working at the NICU in order to help fill the staffing voids. Mikan is lucky to have such great people taking care of him.

Thursday, June 26, 2008

Mikan was pretty fussy today, especially in the morning. Still recovering from circumcision and hernia surgery. He gets Tylenol every 4 hours. We had our second round of home ventilator training, Nina Kartje was there for both the fussiness and vent training. We are awaiting nurse assignments from the home care company. This could take anywhere from 2 weeks to who knows how long. Once we go home, we qualify for 16 hours of in home nursing for 30 days. This is viewed as "transitional care." Therefore, after the 30 days, we will not receive any in home nursing, regardless of Mikan's condition. It is not viewed as respite care. The only exception would be if Mikan digresses from his current path, or we appeal the insurance decisions.

Wednesday, June 25, 2008

44 Weeks

This morning and evening Mikan needed morphine because his heart rate was really high and he was visibly agitated. His steroid dose was also slightly increased today. He seems to be liking it. His oxygen was down to 30% this evening. We had a 2 hour training session on the home vent today. Another 2 hour one to follow tomorrow. Unfortunately Mikan's insurance will only cover one month of home nursing after he leaves the hospital, regardless of whether he is still on the ventilator or not. This is disappointing to us as well as all of the doctors and staff at the NICU. But they have agreed to 16 hours per day for that month, now it's just a matter of finding nurses who are willing to participate (and it can't be NICU nurses because of a payroll stipulation). We are looking at appealing the insurance decision so that another month would be possible.

Tuesday, June 24, 2008

Mikan has resumed his feedings and is in about 40% oxygen. They pumped his steroid does up slightly. We brought our stroller in today to possibly test it tomorrow to see if it holds everything. We have heard that it will be at least 2 weeks before we go home. He still fluctuates on his oxygen requirements, therefore he is not as stable as desired. Hopefully the IV will be out by the morning.
He let us play with with for about 45 minutes tonight without fussing.

Monday, June 23, 2008

Post Op (hopefully for the last time)

Mikan is currently recovery from hernia surgery and a circumcision. Both operations went as planned, and Mikan is receiving morphine every two to four hours for the pain. He is visibly uncomfortable: back arching, grimacing, mute cries, arm flailing. He is on a dextrose IV that replaces his feedings. Tomorrow morning he gets to resume digesting his food.

We have lots to do before we bring Mikan home:
1.) Home vent training. (Wednesday and Thursday afternoon)
2.) Get outlets grounded. (Wednesday afternoon)
3.) Clean house really well. (Tuesday and next weekend)
4.) Bring in stroller to rig it up with all the stuff we need. (Tuesday afternoon)
5.) Clean car really well. (Day before come home)
6.) Go grocery shopping to have some food at our house, lots of paper towels, alcohol wipes and hand sanitizer. (Day before come home)
7.) Send notices to local utilities and emergency response groups. (hospital may do this for us)
8.) Make up sign that lists the rules for visitors to our house. (Take shoes off, Kiss the feet, wash the hands)
9.) Get electric stove fixed. (Tuesday Afternoon)
10.) CPR Class (TBA)
11.) Interview and select home nurses (TBA).
12.) Select a pediatrician (we're pretty close to having this done).
13.) Have duct work cleaned. (TBA)

There, I feel better putting it on paper helps me to see what needs to be done. At least there are two of us and only one of him.

Sunday, June 22, 2008

Last Huge _______ Day

Mikan is currently in about 40% oxygen getting 15 breathes per minute at a pressure of 50 cm of water. We are excited for the hernia surgery tomorrow. We are hoping for a quick recovery and the swelling to decrease once the hernia is all taken care of. We are thankful Mikan is not infected because there was a scare last week that would have postponed surgery.

While we are excited to be going home relatively soon, we wish our move would be accompanied by Mikan's lungs showing progress. However, this is not currently the case. Mikan had initial success during the transition to the home vent, but this weekend he had a couple of episodes (breathing quickly and shallow with a heart rate over 200) that required his support to go up.

We think these episodes have one of two causes (or both at the same time):
1.) Time from last steroid dose. His episodes usually happen mid morning. He gets his daily steroid dose at 8:30 am. Therefore 9-11 am is when we are waiting for the steroids make their impact.
2.) Gasiness. He drinks breast milk that is fortified with formula that makes sure he gets 30 calories per ounce. This is necessary to prevent fluid retention in the lungs, but he gets real angry and agitated with the passing of gas and bowel movements.

He has been making progress in his feeding. Today he nursed from 5:30 to 6:30pm and did not receive any supplemental milk (this is an important step to taking out the feeding tube). Ask Jenna just how difficult it is to force a feeding tube down Mikan's esophagus.

Saturday, June 21, 2008

Saturday


Yesterday afternoon NPHS graciously threw a baby shower for us. After the shower, we returned to the hospital for a quick intro to the vent inservice and then enjoyed a night at Rum Runners with Grandma Gensic (Gam Gam), Annette, and Nikole. It was our first and probably last night away from the hospital. Good times had by all. The name "Sally" took on a whole new meaning for Annette. Ask her about it later.

Mikan had an episode this morning where his heart rate wouldn't dip below the 200's and he couldn't keep his blood oxygen saturation up. He was very irritable. After drawing some blood gases, the doctor realized his CO2 was over 3x the normal amount. They increased his home vent pressure control from 38 to 45 and his rate to 15 bpm, then he immediately began to look more relaxed. They speculated about a possible lung collapse, which Mikan is no stranger to. However, his is doing better with breast and bottle feedings.

Mikan spent most of the day with his diaper unhooked and an oxygen tube blowing air near his butt because of a nasty rash. He peed all over his bed throughout the day, but his nurse thought the constant changing of linens was worth his comfort. He's lucky to have such great people taking care of him. video


Gensic Boy Handshake

Thursday, June 19, 2008

43 Weeks Yesterday...15 weeks in the NICU...Have We Really Been Here This Long?

Today Mikan was switched to his home vent. He appears to be doing pretty well on it so far. All of his settings have remained the same, which is good. He will have blood drawn tomorrow to check his CO2 levels to see if there need to be any additional vent changes. The home vent is about the size of a laptop, but it makes some loud sucking noises whenever Mikan breathes. It kind of makes him sound like Darth Vader...As if our kid didn't have enough qualities about him that might freak out young children.

His breast and bottle feedings remain stagnant. He eats when he feels like it and we still have to use his feeding tube when he refuses to wake up. However, he does take enough of his feedings by bottle that the doctors don't think he will need the feeding tube too long after he goes home.

We met a potential pediatrician for Mikan who works in South Bend. She has worked with other patients who have health issues similar to Mikan, and she was recommended by his current NICU doctor. He really impressed her with his obnoxious gas.

As long as Mikan remains stable on his home vent, we hope to be out of here soon. However, we still are waiting for approval of home nursing through our insurance company.

Tuesday, June 17, 2008

Tuesday









Bathtime; Mikan and Nina; Mikan's hearing test; Post Bathtime; Mikan's first date with another NICU patient.



Mikan's 4th and hopefully final hernia surgery is scheduled for Monday afternoon. We are still working on organizing home health care for Mikan and rigging up a specialized stroller for all of the equipment he will need. Mikan's ENT doctor visited today and said his granuloma wasn't really a granuloma, he thought it was just tissue that was still trying to heal. Tomorrow we have a tour of the PICU. Mikan is looking good. He is growing and getting stronger each day. Hopefully we will not be here too much longer. Right now we are still looking at leaving near the first week in July if all goes well.

Monday, June 16, 2008

Mikan had been pretty lethargic the past couple of days. Therefore, they did a blood test to check for infection and it came back negative (which is good). A blood gas also showed a good level for his CO2. He lost a 40 grams today (1 1/3 oz.), but he gained around 70g yesterday.

We're another day closer to going home. Jenna talked with the social worker today and we are in the process of acquiring the necessary materials for home care. Hopefully, insurance red tape does not prolong the progression, as it has for others in the past. We have various random things to take care of in order for him to go home. Each day we hope to knock out a few of them to be ready when the time comes.

Sunday, June 15, 2008

Happy Father's Day

Mikan is in about 40% oxygen on his rate of 10 bpm with the vent. Nikole and Grandma Gensic watched trach care today. Mikan's disposition throughout trach care is sometimes moody, but usually relatively calm. According to some RT's this is impressive.

We had many visitors this Father's Day. Nikole, Mike, Connor, Maria, Maggie, Jack, Pete, Tia, Liam, Grandma Gensic, Annette, Gil, JT, and Jake all visited and we did the Strawberry Pie Olympics. We played stick racing, maple seed helicopter hangtime, and big ball kickball. I think that Tia won for the day but somehow lost because she won according to Jake and Pete's rules. Everyone's mouths were the real winners at the Strawberry Pie Olympics.

Happy Father's Day to All Father's, Grandpa's, and Uncles. We are certainly thankful for all of ours. This being my first is kind of a weird feeling. Having everyone come up to play certainly made it more memorable. Last night at mass I felt a little strange standing when asked "If all the father's could stand for a blessing." I wondered if the people that saw Jenna and I thought we left our kid with a babysitter while we went to mass. If they would have asked us, I probably would have said, "yep" just to save all the time so that Jenna could get back to the hospital to pump keep the schedule.

Saturday, June 14, 2008

The Vent will be the ticket home

Mikan appears to be going home on the ventilator. He was showing signs of stress being just on CPAP. So, at about 2 this afternoon he was put back on the ventilator. Therefore, we are going to be getting the equipment around that we will be going home on. This will take 2-3 weeks, more details to follow. He will probably have the hernia surgery before we go home.

Also, tonight there was this little white growth in the opening of his trach called a granuloma. Thanks to Jenna's eyes we caught this. If the granuloma gets much larger it will need to be removed by the ENT. I have read about granuloma's causing stressful moments at home when that get in the way of a tracheotomy tube that needs to go in.

We are thankful for the challenge that Mikan has been and will continue to be for us. I believe that God's Mission for us is "Never a dull moment." From starting teacher jobs, Marriage, ACE, IUSB, buying a house, moving, Great Western Expedition, Pregnancy, and now Mikan. What's life if its not changing? Or challenging for that matter.

We have been getting lots of information about going home from various sources: Doctors, nurses, social workers, respiratory therapists, physical therapists. We think we get a special ventilator stroller that insurance will cover, or at least we hope so. We haven't talked with the social worker directly for awhile, she will have most of this information.
Mikan was taken off of the ventilator and onto CPAP on Friday afternoon. He is currently just receiving a pressure of 10 cm of H20 constantly. He is no longer receiving "breathes" of air. As of 5:45 am, his oxygen requirement had gone up from 46% to 55% since the shift from the ventilator. He has been working a little harder, but that has been expected. We will start to decide on Monday whether our discharge plans will be for the ventilator or CPAP level of support. Regardless, it will be the same machine, just different settings. Throughout the day, Mikan was very sleepy and was given almost all of his feedings by tube.

Alexa, Grandma Nina Kartje, and Michelle visited yesterday. Grandma Nina was able to hold Mikan for the first time. Also, they were able to observe a trach care session.

Jenna and I are getting more efficient at trach care. Mikan is still variable in his mood during trach care, but we are better at making sure we do everything in the right order when we clean his trach.

Thanks for the prayers and support. We may be at home in a few weeks. Once Mikan is on a level of support that he is stable with, we are comfortable, and home nursing works out, then we will be back home.

Thursday, June 12, 2008

Mikan's respiratory support remains consistent. He has an arterial blood gas test tomorrow morning that will indicate whether his support can be dropped to possibly just CPAP before we go home. The lower the CO2 the better the chances of attempting CPAP only. We start with a different doctor tomorrow, our currect doctor went to Alaska. We have been told our next doctor will be the one that establishes the plan for going home.

Mikan is getting better at feeding. He takes his time. Tonight Jenna fed him, then he was put back in bed. He was fussy. IF the nurse would have been there, they would have given him more of his feeding through the tube. However, the nurse wasn't there, so Jenna fed him some more. He enjoyed the second round. It was good to teach him that just because he quits eating, that doesn't mean he gets the rest through the tube. We teach perseverance. Or we learn perseverance from him, one of the two.

We were given the offer of touring the Pediatric Intensive Care Unit (PICU) today. We will probably tour it next week. Hopefully Mikan will not need to visit there and we can go home from the NICU.

Continued Thanks for your support and prayers.

Wednesday, June 11, 2008

Wednesday

Mikan is still on the ventilator, rate of 10, 50% oxygen, peep of 6. His doctor said that we needed to decide about if we would feel comfortable taking him home on a ventilator. Even though he doesn't think he will need it for a long time, he just needs time to grow and get stronger, which he can do at home. However, he gets a new doctor beginning Friday who will cement any of Mikan's discharge orders. We may try the CPAP one more time before leaving. We are still looking at coming home the first week in July if everything goes according to plan. His feedings appear to be going better and Mikan stays awake for a larger part of the day now and remains pretty active. He acts pretty much like a normal baby with the exception of all of the tubes and wires. We also found out today that if Mikan goes home on a vent, we would qualify for everyday home health care where a nurse would come into our home and help us care for Mikan each day. This makes us a lot more comfortable taking Mikan home on whatever support he needs.

Tuesday, June 10, 2008

Mikan's respiratory support is the same: 10 bpm, 6 PEEP, and pressure support of 32 cm of H2O. He had an atrocious trach care again this morning. He has yet to be really successful at breastfeeding. He is inconsistently successful at bottlefeeding.

We are able to "play" with Mikan now. This will help the development of his other body systems and he really seems to enjoy it. We do a little tummy time, arm games, leg stretches, side laying, and sitting up.

Annette and Gil came by with JT on their way to Wrigley for a Cubs game. We were able to play around with a 20 pounder for a while. We decided that the three cousins born this spring, JT, Mikan and Liam, are very similar to the story of Goldielocks. JT is big, Mikan is small, and Alec is just right. At least for now.

Monday, June 9, 2008

Mikan is down to 10 bpm on the ventilator, but he is up to requiring 52% oxygen. We tried to give him feedings through the bottle or the breast every other three hours today. During trach care this morning, Mikan threw his largest trach care fit ever. He had to be restrained the entire time. This was because I was at work and not letting him know who the boss was during trach care. After trach care, Mikan slept most of the day and was unsuccessful in his feeding attempts until the late afternoon.

Today I was able to attend rounds. Rounds is where everyone in the NICU is updated on Mikan's status and questions or issues are addressed. During rounds, our doctor brought up a couple of possibilities we would not like to see come to fruition. First, it is possible that Mikan will go home on a ventilator. Second, it is possible that Mikan will still require gavage feeding (feeding tube, I think gavage refers to gravity) at home as well (for a couple of feedings each day).

Also during rounds, I asked the doctor why there does not seem to be any respiratory progress since the tracheotomy. (Because before the tracheotomy, Mikan was on a CPAP of 10 but not the ventilator, and now Mikan has been on the ventilator for the past week). We thought the tracheotomy would make the respiratory support requirement go down, but it hasn't. The doctor seems to think that Mikan is requiring more support because after the tracheotomy we tried to wean steroids too quickly. However, Mikan's lung x-ray does not look as bad as it has in the past. Therefore, we think there is a lower airway issue and not just scarred lung tissue that is causing Mikan's respiratory stress. Enough with the isolating variables and whatnot.

Once again, we thought surgery was going to be a pivotal turn in the right direction. The PDA surgery did not lead to a healthy baby. The steroids did not get him right off the ventilator. Now the tracheotomy is taking awhile to see profound positive impacts on his respiratory system.

Sunday, June 8, 2008

Mikan was more successful with breast feeding and bottle feeding today. He finished a full 60 cc's (about 2 ounces) tonight. His CO2 levels were not good enough to wean any respirator support this morning. He is in about 37% oxygen with the daily dexamethasone dose of about 0.1 mg per kg.
Jenna and I attended a NICU parent meeting where we were asked to start to think of ways that NICU parents from Memorial Hospital in South Bend could give feedback to the unit in order to help them improve the care they provide along with support for other parents. It was interesting to hear two stories from people who are about 2 or 3 years removed from the NICU experience.
Mikan is now the oldest baby in the NICU. He looks like a little Buddha.

Saturday, June 7, 2008

First Breast Feeding

John giving Mikan a bottle for the first time.

John taking advantage of Mikan while he's sleeping.

JT's not the only Gensic grandbaby Cubs fan.

Kangaroo time.

Mikan's crazy face.

No blog last night because we didn't bring our computers into our house with us. Today I (Jenna) breast-fed Mikan for the first time. I have to be specific with my identity because apparently there are men who have tried to experience the breast feeding experience in the past by draping a tube over their shoulders near their nipples and letting their child feed from it. John hasn't asked to do this yet, but the nurses have offered. Mikan did ok with it. Like all of his feedings, he is interested in sucking, but he is just slow. He finished a bottle today after about 35 minutes. He slept through most of it.

Today Mikan got his trach care done to the tune of Elton John's "Tiny Dancer." He is in about 38% oxygen now and the doctor has determined he needs everyday steroids and he will need to go home on the same dose he is currently taking.

Thursday, June 5, 2008

3 months old today

Mikan's peep was dropped to 6 today because of good blood gases. He is still on a rate of 15 and about 50-55% oxygen. He ate 40 of 55 ccs today during his bottle feeding. Mikan had another follow-up eye exam. The doctor said he saw some regression, which was good. He is pretty confident that the surgery was successful and he is only going to visit Mikan every 2 weeks now. Thank God because Mikan HATES the eye doctor.

We have been successfully completing trach care together in the evenings. We've decided we need to have a trach care routine where we choose a song that we play and sing with Mikan to distract him while we change his trach ties and wash his neck. Anyone have any suggestions?

Wednesday, June 4, 2008

Mikan is still on the vent at a rate of 15 bpm. His pressures were turned up very slightly today because of a mediocre carbon dioxide reading. He took about 26 cc's of a 55 cc feeding today. We are hoping that breast feeding is in the cards for the near future. We are also hoping to wean back off of the vent through the trach soon.

Apparently, we may have a decision to make about whether we want Mikan to have steroids once a day or every other day. If he gets them once a day, this may have less long term side effects on his neurological systems. If he gets them twice a day, he will probably have less lung scarring in the mid to long term because he will not require as much vent support. Notice all of the apparently's, may's, and probably's. This uncertainty has been a trademark of our experience thus far, which makes most decisions difficult. So, we'll listen to the doctor and continue to look for advice on what's the best path from this point.

One thing is for certain, Jenna changed Mikan's trach tube today for the first time. Our ENT Doctor was there to witness it and said she did a great job. We also did all of his evening assessment, including the weighing. I felt like I was back in a chemistry lab when I pressed the tare button and waited for everything to zero right before I lifted the diaper.

Tuesday, June 3, 2008

Tuesday

Mikan's first bottle feeding


Mikan had a rough night. He had to be bagged 4 times after his heart rate and sats dropped and wouldn't come up. He had to be bagged again this afternoon. Most of the time this happens after he needs to be suctioned, or when he has really bad gas. But he turns blue and refuses to breathe. So the doctor put him back on the ventilator this morning as a way of letting him rest for a day. We hope that he will come off again tomorrow and we'll see how he does. He also received three shots of vaccines yesterday and today his white blood cell count was very high. He had some blood cultures done that we will won't get results back from until tomorrow. He was put on antibiotics today. One step forward, two steps backward. He did well again with his bottle feeding. This time he ate 48 of his 55 ccs. Then he fell asleep. Right now he has orders for bottle feeding once a day.

Today we were asked to speak at the Ronald McDonald house fundraiser dinner in November at the Hilton at St. Mary's. They asked us to share our story and explain how the house has helped us through our hospital experience.

Mary Ann and Angela visited us today with Fruitistas from Taco Bell. I recommend the strawberry mango.

Monday, June 2, 2008

Monday

Tomorrow Mikan's doctor leaves for India. When I asked who his new doctor would be, he replied, "I don't know yet...I'll ask in rounds today. I'm not sure anyone will volunteer to take him." He was joking about how much of a challenge Mikan is. Mikan is currently in 41% oxygen. His nurse tonight is one of his primaries. She sets goals for herself in an attempt to make Mikan as comfortable as possible so she can take credit for weaning his oxygen way down. We told her to shoot for 38%, but she insists that she can get him much lower. We'll see.

Mikan had his first bottle feeding this evening. He ate 35 of his 50 ccs. I'm pretty sure 10 ccs of it ended up on his face though. He seemed to like it at first. It's hard for him because when he breathes fast he works up secretions in his trach which make it even harder to breathe, so he had to be suctioned at periodic breaks during the feeding. Overall, the nurses think he will do well with bottle feeding. They haven't mentioned when he will be able to begin breast feeding.

Tonight Mikan had an episode where he desatted to 26% and his heart rate dropped to the 60's for about 3 minutes. Turned out he just had to poop. He filled his diaper and recovered pretty quickly. He was pretty purple in the meantime.

Sunday, June 1, 2008

Sunday

Dad holding Mikan's feeding syringe.

Our first family portrait.


This morning Mikan was taken off of the ventilator, and he is now getting CPAP through the vent. He is breathing on his own, receiving a peep of 8 through the trach. He is on about 40% oxygen. He gets Tylenol ever 4 hours for pain instead of morphine. He resumed his feedings today. Some of his pictures may make him look deceptively huge because of his massive steroid cheeks. He really weighs about 6lbs 4 oz now. Mikan's doctor said that if he is doing well tomorrow he may be able to try bottle feeding. Mikan was a little on the chilly side today. His nurse made a reference to him acting like a baby born in Antarctica. We've usually been keeping him naked because he gets so hot. His post-surgery chill may allow us to use some of the cute outfits we've been accumulating.