Thursday, July 31, 2008

Mikan appears to be getting over whatever he might of or might not of had. He was alert from 2 pm to 10 pm this evening with only a short 30 minute nap. He was supposed to of had a tracheal aspirate today according to the pediatrician, but we never heard from the home health equipment agency. He looks good though.

Mikan's liter flow is currently around 2 plus or minus 3. He is still getting 0.35 mL of the dexamethasone. His breathing rate fluctuates greatly: from 85 bpm when active to 12 bpm when resting (letting the vent do all of the work). His ventilator settings have not changed since coming home from the hospital: vent rate of 12, pressure control of 45 total, pressure support of 33 total. He gets vitamins once a day. We are giving him Tylenol for post immunization pains. His circumcision was a little bloody yesterday morning, but he is doing okay.

I have heard that if you sneeze, cough, fart, hiccup, puke, and blink all at the same time you die. Well, Mikan is still alive. This must have been an urban legend.

Still home nursing issues. I get to make some phone calls tomorrow.
We recieved a phone called at about 8 pm on Wednesday night that our nurse would not be able to make it to New Carlisle tonight so that they were looking for a replacement. No replacement was found, therefore Jenna and I are on our own for another night.

Diary of Home Nursing after one week:
July 23rd-day Mikan goes home, all staffing taken care of.
July 24th-all staffing taken care of
July 25th-all staffing taken care of
July 26th-Night nurse calls in sick, no replacement found.
July 27th-all staffing taken care of
July 28th-No night nurse was even scheduled. Therefore we had many phone conversations during the day with the nursing company. One phone call included a conference call with the owner of the home nursing company. Result: 11 pm-12:30 am ventilator training training session of the night nurse at our house, in Mikan's room, where we keep the spare vent.
July 29th-Night nurse scheduled, but not yet trained on the ventilator. Therefore, 11 pm to 12 am training session at our home in Mikan's room, where we keep the spare vent.
July 30th-Night nurse calls off for an emergency at around 8 pm, no replacement found, therefore I am posting this at 12:44 am.

We are certainly happy to be home. We are not happy with the home care company. We get to do something about it (call appropriate agencies with oversight in these matters)
Is it okay for me to mention the company's name online? I think it is but Jenna advised against it.
Is this common for home nursing?

Monday, July 28, 2008

First Doctor's Visit

Mikan's first doctor's visit went okay. He weighed 10 lbs. 4 ounces, this is up at least 4 ounces since leaving the hospital. He received 3 immunizations today. He did the usual baby immunization thing, cry. If Mikan's feedings do not improve, there is a possibility of putting in a G-tube in about 6 weeks. Also, Mikan has had a little yellow nasal secretions in the last two days. We asked about this, and apparently nasal yellow does not necessarily indicate infection. Now, yellow lung secretions are a different story, and Mikan has not had any of these.

Mikan dislikes onesies and all other clothing. Maybe it is a late July thing. Maybe it is a guy thing. Maybe it is a Gensic thing. Probably not a Kartje thing. Clothing Mikan may be Jenna and I's most heated debate on a regular basis. She'll get some clothes ready, and I'll ask "Why?" This creates a look on Jenna's face that makes me want to go hide. Mikan is a hot body (referring to temperature hot).

Continued thanks for the help, prayers, and support from the community of readers and nonreaders. We appreciate the thoughts, messages, and visits.

Monday

We have a pediatrician's visit this morning.

His weekend went okay. Our nurse called off for a noncontagious illness on Saturday night, so we had our first slumber party as a family in the living room. Jenna basically stayed up until 3:30am then I took over from 3:30 on. We caught up on sleep throughout the day on Sunday.
He still has periods of rapid breathing and white/clear nasal secretions. He is adjusting to the new air in our house.
Overall, we have not had to make any emergency calls during the first 4.5 days (knock on wood) so it has been a success. His feedings could be going a little smoother and his sleep schedule does not follow a schedule, therefore we have room for improvement. I am praying for a weight gain.

Friday, July 25, 2008

Friday




Mikan's final day at the hospital with a visit from the South Bend Silverhawks; chillin' out at home.

Mikan seems to be adjusting well to life at home. We have our First Steps assessment today and he has his first Pediatrician appointment Monday. He went for a walk around town this morning, but slept through the whole thing.



What happens when Jenna leaves for class..

Wednesday, July 23, 2008

WE'RE FINALLY HOME!!!

Pictures to follow. We are finally home...with Mikan. Discharge went pretty smoothly today and Mikan appears to enjoy the transition. Everything is set up at our house and we have home nursing in place for 30 days. We are extremely tired, but happy to have him home. He is currently hooked up to the same machinery as he was at the hospital: Vent, suction machine, oxygen, biox monitor. We welcome healthy, clean visitors. Please call or email ahead of time. Based on the car to stroller transitions, we don't anticipate leaving the house too often. Thank you to everyone for your wonderful support over the last 5 months. 141 days at the NICU in case anyone else was keeping track.

Tuesday, July 22, 2008

Wednesday

By the end of the day on Tuesday, all of Mikan's home nurses should be trained on the LTV 950 ventilator. The home medical equipment company agreed to train for free.

If the training is completed by today, we should be going home tomorrow.

Did you know that Mikan is not Anchor Home Nursing's only patient? Apparently they have about 100 other patients. Thank you for the info, Anchor, even though I didn't ask.

Monday, July 21, 2008

One More Day? Maybe?







All of Mikan's repeat blood labs have come back normal, so it looks like his pneumonia is under control. This means he is ready to be discharged tomorrow; however, we are still having issues with home nursing meeting the requirements that our home health care (equipment supplier) requires. We are both really frustrated as is everyone that works here. Unfortunately we don't have a lot of options and just need to wait it out. Hopefully that means we can leave tomorrow, but we won't have any clear answers till then.

Sunday, July 20, 2008

Hoping for Tuesday

Mikan and Jenna spent today recovering from the birthday party. Jenna's allergies are acting up and Mikan didn't really wake up until about 5 this afternoon.

Today Mikan moved from the NICU to PICU to accommodate construction in the NICU. We are not sure if we like it or not. There is less noticeable activity in the PICU than the NICU. However, we really liked the visits we got from the NICU nurses whenever we were there. Mikan likes the attention.

We enjoyed a birthday visit from uncle cousin Matt, cousin Connor, and Matt's lady friend Stacie on Saturday and Sunday.

We hope to bring him home on Tuesday. Leaving will be mixed. We have been longing to go home to be able to live a more "relaxed" lifestyle. However, I am nervous about the around the clock responsibility Mikan is going to be. I don't like to speak for Jenna, so I won't, and she's asleep, trying to rest up from the allergies.

I am curious about allergies. If anyone could post situations about heredity of allergies. Do they come from dad? Mom? Neither? I don't have allergies. So, I'd like to hear that allergies are inherited from fathers, but I don't have any real experience.

Happy Birthday

Yesterday Jenna celebrated her 25th birthday. Mikan was all dressed up for the party that we had in our NICU room. There were balloons and streamers throughout our room. Mikan and the nurses made her a card. It was an excellent surprise and we are very grateful to the nurses and Ronald McDonald organization for the cake and dinner.

Mikan appears to be recovered from any infection/pneumonia he had in the middle of the week. He has gone from 27 cal. per ounce to 24 cal. per ounce formula to try and help his digestive system from being as explosive and gunky. He has been awake and eating more during the day (or at least yesterday). It is difficult to describe patterns in Mikan's behavior, because each day has significant differences. He likes to keep the nurses guessing with never a dull moment.

Jenna's birthday present from me was 30 pounds of blueberries in the freezer. We recommend Rambo's in Southwest Michigan or the Blueberry Ranch in Mishawaka. Rambo's had tastier berries. Mmmmmmm berries.

Also, all comments will not be posted immediately anymore. I have decided to moderate comments because of my sister Annette's latest post. Way to go Annette.

Thursday, July 17, 2008

Update-Jenna is awesome

So the earliest we will go home is on Tuesday of next week. Mikan is on at least a five day antibiotic dose. He really looks pretty good. A little secretious, but overall he acted like himself tonight.

Let me brag on Jenna for a little bit...
1.) She has pumped faithfully since March 5, keeping her supply up even after doctors told her that she will never be able to solely breastfeed because Mikan requires fluid restriction.
2.) She puts up with my outfits at the hospital, which some might consider a public place.
3.) Today we were at home for a little while when Jenna opened the deep freeze to get some ice cream. Lo and behold, the freezer light didn't come on. Jenna actually stayed calm and we realized that there was only an issue with the outlet and not the freezer. So we hooked up an extension cord and plugged the freezer in across the room. Hopefully just a circuit issue put we didn't feel like we had time to try and figure it out. Jenna kept her composure even with 4.5 months supply of frozen breastmilk on the line.
4.) It's her birthday on Saturday and her baby is still in the hospital. I don't think she is crazy...yet.
5.) Have you ever seen her change a trach in an emergency situation? I have, and it's pretty hot.
6.) I don't know of anyone else that is capable of putting up with me. I like to pose for hospital security cameras.
7.) She can still laugh. Story: I like to leave Mikan some breathing room for his penis after changing his diaper. Today, our doctor came in during one of these moments and noticed a discoloration on Mikan's scrotum. The doctor decided to have an ultrasound done to see if Mikan had the proper flow of blood to this area (kind of important on the Grandchild front). So, as Jenna and I walk out of the NICU I decide to shout to her

"Good thing I left his penis exposed!"

thinking I was only talking to Jenna. Little did I know a grandmother and her grandson were sitting within earshot in the NICU lobby. I shouted this and then saw their eyes staring at me. At this point, Jenna and I burst out laughing as we went to the Ronald house for dinner.
8.) One day Jenna wore her hair down at the NICU. At this sight, some of the nurses commented to her, "You really are perfect."
9.) She wins all McCoy coloring contests.
10.) I know I couldn't hang out at the hospital as well as she has for the past 4.5 months.
11.) She is really good at locking in laminate flooring.

Still Here

We're not going home Thursday. We have a slim chance of going home on Friday. On Wednesday, Mikan was feisty in the morning, lethargic in the afternoon, and full of secretions all day. Therefore, he had a blood test done and some of his secretions were used to see if anything would grow on a plate. Something grew. It could be harmful, it might not be. Regardless, he has been started on antibiotics through the IV. He will be watched closely to look for more symptoms. The blood test came back pretty good, but the secretion test is what we're currently worried about. I hope he is okay.

We'll see. What's a couple more days?

It is weird though because we have already said goodbye to many of the nurses he has had. Now, we will probably see them again and be all "What are you still doing here?"
Thursday morning and Mikan is still in the hospital. He had to be bagged on Tuesday night. There are also details to be worked out between the home medical equipment company and the home nursing company. The home medical equipment people need to have written certification that the nurses know how to use the ventilator that Mikan is on, the LTV 950. Mikan's steroids are beginning to be weaned. His dose went from 0.4 to 0.35 mL. Since this wean, his ventilator rate was increased by 2 to 12.

Hopefully, we will go home today, Thursday. We're not sure.

We have to sign papers that say we will cover all expenses not covered by insurance. But the agencies that make us sign this paper don't provide an estimate for those costs. The definition of "out of pocket maximum" has been clarified in the past couple of days. We will have to watch the agencies/insurance like a hawk. However, we feel relatively confident that because our home nursing has been preapproved.

Monday, July 14, 2008

Getting Closer

We are still tentatively planning for a home arrival either wednesday or thursday. Mikan has been doing well, his oxygen has been weaning enough that his doctor decided to reduce his steroid dose beginning tomorrow morning. His feedings are only mediocre, but he still doesn't have his feeding tube anymore. His doctor said that his physician may decide to use the NG tube at night if he can't gain weight quick enough on his own. Right now we think his gas is the biggest hindrance during his feedings.

Tomorrow is our second care conference. Hopefully this one goes smoother than the first. We will be able to meet the nurses who will be taking care of Mikan at home. Our house is ready for him, and we are excited that the day is finally nearing.

Sunday, July 13, 2008

We are planning on taking Mikan home on Wednesday. We'll know for sure on Tuesday. We went back to Albion and Fort Wayne on Friday night and Saturday during the day. We figured it would be the last chance for us to travel in a while. It was nice to be a little relaxed with his condition enough to drive 2 hours away from the hospital.

Today we scrubbed down the house as best we could. It is definitely not sterile, but we wonder how long ago the ceiling fans were cleaned. No more shoes are allowed in the house and we have strategically placed hand sanitizer bottle throughout the house. We will be excited to have visitors once we go home, school will start way too quickly.

Friday, July 11, 2008

Update

The two overnights with Mikan went pretty well. He has also been without the feeding tube for about 2 days. We still need to see if he gains the weight that he should. His MRI came back normal. He does not have any signs of cerebral palsy. During the overnights, we were able to work out some things with the monitors and his suctioning that will make life a lot more comfortable at home. For example, the monitors would start beeping if Mikan was doing really well, showing that he could use less oxygen. However, our doctor has told us that it is not really that important that we turn down his oxygen every time we can. It is okay for Mikan to not be weaned on his support in the middle of the night, if it means Jenna and I get much better rest.

He could sleep about 6-7 hours during the night if we didn't have to wake him to feed. He needs (according to his doctor, determined by Mikan's weight) to be taking 15 ounces of 27 calories per ounce breast milk/formula mix each day.

Tuesday, July 8, 2008

Overnight Slumber Party?

We are spending our first night together as a family tonight. We have had him alone in a mother baby unit room since about noon Tuesday. Our goal is to go until Thursday morning. We have minimal assistance. Our goal is also to have him feed without using the feeding tube.

Monday, July 7, 2008

The First Care Conference

So much for next Monday. We learned a lot at the care conference today. The home nursing company that tried to staff Mikan's care backed out today. Therefore, we are left scrambling for home nursing once again. This is disturbing for a couple of reasons...
It means we won't go home until awhile later.
It means the nurses at Memorial who went to Valpo to apply and go through testing to be employed basically wasted their time.
It means that we have wasted the last week pursuing a company when we could have been pursuing other options.

Our insurance has approved for 16 hours each day for 30 days. However, our social worker has not found a company capable of staffing those hours. Therefore, we may have to make some choices...
1.) We could try to have our doctor write for only 8 hours a day for 30 days.
2.) We could leave Mikan in the hospital for an undetermined amount of time until he does not require home nursing.
3.) We could try to negotiate with the HR at New Prairie to see if they can get the insurance company to change the 16 hours for 30 days into 8 hours for 60 days (easier to find staffing for).
4.) We could live out of bags at Ronald McDonald until kindergarten. We're not sure if the bus would pick him up from the NICU. Maybe our doctor could write for that.

We feel uncomfortable making decisions about requesting less time with home nursing because we are not sure about what it feels like to care for him around the clock. We will be caring for him from tomorrow morning until Thursday morning "on our own." After this, we may feel more comfortable about making decisions about how much nursing we need at home.

I am hoping for 8 hours a day for 60 days. 16 hours seems like too much and not a realistic transition. Especially because the nursing company that was originally going to staff planned to have the same person cover 16 hours each day, with no backup in case of illness.

Mikan had an MRI on his brain today, we'll know the results tomorrow. MRI's are standard for babies this premature, just to make sure everything is revealed before he leaves the hospital.

Sunday, July 6, 2008

Our care conference is tomorrow. This is where we make the plan for going home. On Tuesday we will be the ones in charge of taking care of Mikan. On Thursday, some members of our families will be learning CPR through the trach.

I learned to do to conventional suctioning through the trach today. Jenna learned that Mikan can projectile vomit "exorist" style tonight (no pictures of that).

Our doctor told us to take a couple of days away from the hospital before Mikan comes home. We think the plan is to go home next Monday. There are still some pieces to fall together to make that a reality. For example, getting the home nursing schedule worked out.

Saturday, July 5, 2008

Update

So we think Mikan will be going home next Monday the 14th of July. He is getting better with feedings, but his respiratory health is more stabilized than improving. However he is continuing to grow which is apparently good.
We are caught in a conundrum. We want Mikan's body to grow because this in turn means his lungs are growing larger. But, with growth comes a larger body that requires more oxygen to respire properly. So, we want his lungs to grow faster than the rest of his body.
A huge thanks goes to Pete, Sarah, Tia, Liam and Alec. They all came to visit last Friday. This was our first opportunity for us to see Alec. Pete also helped put the laminate flooring down in the room where Mikan will be spending most of his time (we pulled out the carpet to reduce the risk of respiratory stress on Mikan. Sarah also helped by reading the directions and making the operation work more efficiently.

Thursday, July 3, 2008

Mikan wanted to tell everyone something. something.

Wednesday, July 2, 2008

Mikan is getting a little more consistent with his feedings. He will probably start the night pump tomorrow to make up whatever he does not eat during the day. Still a vent rate of 10, about 38% oxygen.

Each Monday and Wednesday, the NICU does rounds. Rounds is where all the doctors, and staff at the NICU get briefed on each child by the child's nurse. Then they discuss the plan for that child. As far as I know, I am the only parent that regularly attends rounds. Jenna attended rounds once, had a traumatic experience, and has sent me since. I enjoy rounds. It is fun to listen to the nurse report what is going on to the doctors. I also enjoy to notice different doctors approaches to the same problems. Some doctors swear by steroids. Others avoid using steroids except in emergencies. There is an eclectic mix of personalities and backgrounds at the Memorial NICU Neonatologist staff. One is from India, one from Russia, one from Nigeria, and another "American." They have learned their trades at different institutions and had different experiences with patients and research that cause their different approaches.

During rounds, I asked when will we be going home. The three doctors there said to wait until the other doctor comes back from India (because he is Mikan's primary care doctor at the NICU).