Saturday, September 27, 2008

A walk to the park






Some pictures from our outside fall trip today, and more dancing in the evenings.



Friday, September 26, 2008

Weekend

On the way home from his doctor's appointments yesterday, Mikan had another episode where his trach got turned a funny way and he began to turn a little blue. We had to pull over and help him recover. We didn't have to bag him, he recovered on his own once we gave him an airway...go figure.

Mikan got a chest x-ray to see if his lungs were hyperexpanded from the vent which we haven't heard the results of yet. We are allowed to introduce baby foods now every once in awhile to see if it will help him eat any better. We haven't tried this yet, but we are excited about the prospect of it.

Mikan's g-tube surgeon reccommended a longer G-tube and he thinks that will help with his granulation tissue and leakage.

We think Mikan is pretty close to smiling...that will be a fun development whenever it finally occurs.

Wednesday, September 24, 2008

Mikan likes home.

This morning we had a little scare. When I picked Mikan up out of his crib, his G-tube extension, which was still on from the night, got caught in his crib and it ripped out of his stomach. I quickly and calmly deflated the balloon, inserted the button, and reinflated teh tube. It was rather disgusting looking though. His sight is still seeping, and the balloon should not have slipped out that easily. His home nurse thinks it may be infected. And the balloon was inflated properly, so we don't know how it could have come out. Anyway, he sees a doctor tomorrow about his G-tube sight, so hopefully we can get some answers.

In the afternoon, his trach ended up getting slightly off-centered and the end closed up enough to make him turn a little blue, but we fixed it before he passed out and we didn't have to bag him. Oh the excitements of life at home.

Today we went to the Newborn Follow-up clinic at Memorial. Mikan saw an occupational and speech therapist. Then we came home and First Steps came and assigned him to an occupational/speech therapist that he will see once a week. He goes back to the Newborn Follow-up clinic again in 6 months. His evaluation showed that he was behind in weight, length, and fine and gross motor for his adjusted age. All of this was expected. The fact that he is making small progress now is good and he will hopefully progress rapidly once his respiratory status improves. A few days ago his two hands found each other. Now his favorite trick is holding them together. Right now he is wrestling with John on the floor, well, kind of, as much as you can wrestle with a ventilator-dependent infant. But he's also singing Brian Adams to him. So whatever manly activities John is trying to introduce him to are surely canceled out with "Please Forgive Me."

We also have new furniture! Helping keep Mikan's respiratory status stable!

Tomorrow: 2 doctor's appointments, his pediatrician and the surgeon who performed his G-tube, Nissen, and hernia surgeries.

Saturday, September 20, 2008

Mikan's trip around the house, a walk outside, playtime, bath time.





LIfe at Home






Mikan has been doing pretty well at home. His feedings are still sub-par. He barely eats anything in the morning; however, in the evenings he's beginning to take 25-45 ccs. This is an improvement from anything he was taking at the hospital. Last night he slept 12 hours (9-9). Perhaps he's going through a growth spurt.

Next week is full of doctor's appointments: His regular pediatrician who will probably wean his steroids more, some therapy assessments at the newborn follow-up clinic at the hospital, the surgeon who performed his G-tube surgery (His stoma has been leaking regularly and he has developed a large amount of granulation tissue), and 1st steps is coming.

We haven't been needing to turn Mikan's 02 up during the day at all, but with his growth comes new complications. While laying in bed the other night he ripped off his circuit from his trach. He's getting extra grabby which makes dealing with his ventilator that much more difficult. Some of the pictures show this well.

Monday, September 15, 2008

Monday Night

Currently, Mikan is sleeping calmly on his back, Jenna is at her night class, and Grandma Kartje is shopping. I am watching Mikan at home alone. Mikan certainly prefers his afternoons and evenings (according to what other people tell me). When I am around in the morning he seems to have good mornings. I think it may be that he is used to having his dad around in the afternoons and evenings. Alternatively, he may have inherited his Aunt Annette's mornings along with her voluptuous cheeks. Who knows.

Mikan is beginning to have Connor McCoy'ish baby desires. At certain times, Mikan can only be calmed by laying face down on one of our knees. At other times, he needs to be held and danced with to appease him. Jenna calls it high maintenance.

Mikan ate 36 mL or cm^3 tonight for dinner before we g-tubed the rest of his feeding. This is an improvement. Aunt Nikole showed Mikan how to take 30 mL for the first time in awhile on Saturday evening. In addition to Aunt Nikole, Mikan received visits from Grandma and Grandpa Gensic on Saturday for dinner and the ND vs. Michigan game. Last night, Grandma Kartje came over to watch him through the night so that Jenna and I could rest before school on Monday. However, we got a call at about 8:45 last night informing us about NPUSC's 2-hour delay because of flooding. Gotta love rural Indiana. Grandpa Kartje and Jenna's Aunt Debbie stopped by for short visits today.

Mikan appears to be getting bigger, stronger, and faster. He often squeaks around the trach showing growth. He also has de-chunked in his cheeks, or chunked up everywhere else.

One way to make Mikan happy is to hold him face down and then loosen his diaper to give him some fresh air down there. When we do this, we are amazed at how small his hips are compared to his belly. Someday we think his body will re-proportion itself.

Finally, in order to get Mikan to drink a little more tonight I whisper to him "I heard JT (my sister Annette's 35 lb. 8 month old baby) drank 8 ounces and cried because he wanted more." This seemed to light a fire in Mikan as he ate his 36 cc's (a little over 1 ounce). Not much in comparison, I saw the look of a competitor in his eyes.

Saturday, September 13, 2008




Some pics from the hospital


Mikan has been pretty fussy lately. He wants to be held a lot and hates lying on his back. We have been trying to get him to play on his back so he'll learn to roll over. I think that's a long time coming with his circuit in the way. His feedings are still terrible. We can barely get him to eat anything on his own. No one seems to know why they have deteriorated so much, but the general consensus is that he will grow out of it and eat eventually. Until then, we will practice with him and make use of the G-tube.

Below is some Daddy Mikan time and Mikan's first vegetable. You can decide whether he liked it or not.



Wednesday, September 10, 2008

Home Again!

This morning we were able to kiss the PICU goodbye, hopefully for good. We are home now and Mikan is doing well. His oxygen is around 1 liter, and he has been pretty happy ever since we arrived. The car ride was difficult for him, but now that he's home, he's doing great. We had two nurses from Memorial Home Care help us get situated this afternoon. We have follow-up visits scheduled with his ENT, pediatrician, opthamologist, first steps, and the newborn follow-up clinic for the NICU. It feels wonderful to be back at home for the following reasons:

1) Jenna doesn't have to sleep in a chair at the hospital anymore (possibly the root cause of her eye infection.
2) We can make dinner and watch Mikan at the same time.
3) We can feed Mikan when we want to feed him, paying attention to his cues and not the clock.
4) We don't have to make trips back and forth from work to the hospital (saves gas $)
5) We don't have to run into familiar faces at the circulation desks who ask, "You're still here?"
6) No more wondering about the patients in nearby rooms and the germs they might possibly be spreading our way.
7) No more cringing as we hear the sound of some kid vomiting nearby.
8) We can get Mikan some fresh fall air with walks to the park.
9) Mikan gets to watch the ND Michigan football game from our living room.

Thanks to everyone for their continued prayers and support. We'll keep you updated with Mikan's progress.

Tuesday, September 9, 2008

So Close!

Tomorrow morning we are going to be discharged from the hospital...finally. We finally have enough nursing that the doctor is comfortable with discharging us. We have nursing for Monday-Friday day shifts right now. This is definitely enough to get us through a transition home.

Last week Mary Anne and Angela came to visit Mikan after they worked their first shifts volunteering at the Ronald McDonald house. One of Mary Anne's students, Sarah B. brought Mikan a hat to the hospital. Thanks Sarah! Thank you Ronald McDonald volunteers for everything! That is one thing we will miss about the hospital, good free food, nice volunteers, a warm place to sleep, and free laundry :).

Mikan had a vaccination today and we are in the process of lining up several doctors appointments for the upcoming weeks after leaving the hospital.

Hopefully Mikan will be able to watch the ND Michigan game on our living room TV this weekend. We got rid of some old furniture and ordered new stuff for Mikan (to help out his respiratory status);however, the furniture hasn't arrived yet, so our living room is pretty empty. Hopefully this will help prevent him from getting sick soon.

Once again we welcome visitors who are healthy. We look forward to trying to get back into a normal home routine. Living at the hospital is getting kind of old.

Friday, September 5, 2008

Weekend

So Sunday discharge is not happening. Memorial is still looking for nurses to staff the cases that our nurses will be pulled from. We are hopeful for Wednesday of next week. That is the new date we have been given. I (Jenna) am feeling much better today after my freak eye incident yesterday. Both John and I stayed away from the hospital today in an effort to keep Mikan as healthy as possible. I will hopefully be feeling better enough tomorrow to go relieve Grandma Gensic from Mikan's bedside.

Apparently Mikan had a decent day. He finished off a round of antibiotics he was receiving for an organism growing in his trach, and he will get another round of immunizations tomorrow. We are requesting he just receive one at a time and that they are spaced out because of the bad reactions he's had in the past. Today is the first day that neither John nor I have seen Mikan since he's been born. The nurses assured us he was being taken care of...

Thursday, September 4, 2008

Today I got a phone call at school from Jenna while I was teaching. Needless to say, I was a little nervous with her calling me in an emergency situation. It turns out that she got an eye infection and her eye swelled shut. Therefore, she walked from the PICU to the ER with one hand over her eye and her right pointer finger in a claw shape (GE ARRRRRRRRRRRRRRRRRRRRRR). The doctor looked at her in the ER and then an ophthalmologist also looked at her. She is on an antibiotic eye cream. But, with her being infected and me having a cold, neither one of us is at the hospital with Mikan. Despite her request, no eye patch was given.

Thankfully, Gam-Gam (Grandma Gensic) came to save the day. I called and talked to a nurse about Mikan's progress this evening. The nurse made a comment about Mikan's evening feeding, "Your mom is as stubborn as Mikan, so he ate about an ounce." This probably ties for the most Mikan has eaten in the last week.

We aren't going home on Sunday, which is okay with us. We may go home in the middle of next week. Mikan is doing well, his steroids were weaned from 0.20 to 0.185 today. It is interesting to see different doctors have different steroid strategies all on the same kid.

Wednesday, September 3, 2008

Progress!

A nurse from Memorial Home Nursing came to visit Mikan at the hospital today. She said she was hoping to cover Mon, Wed, and Fri day shift for us as long as she was taken off of one of her other cases. She stayed from 7-3 today with us at the hospital and worked really well with Mikan. She's taken care of several small children on ventilators with trachs, so it sounds like she is a good match for us. There is another nurse coming to meet him tomorrow and another on friday. We are hopeful that discharge will be this Sunday; however, we still haven't seen an official nursing schedule, and the doctor hasn't technically approved discharge yet.

Mikan had a decent day. A speech therapist came to watch him eat and she suggested we try a different nipple. She thought he may have been having a nipple aversion to those used in the PICU. We got some nipples from the NICU and he did eat better in the afternoon; however, it's too early to tell if that really was the root cause of a lot of his eating issues.

His NICU nursing favorites came to visit today with his favorite NICU doctor. Mikan misses the NICU I think. PICU just isn't the same...too many older kids. He doesn't intimidate the other patients like I think he did downstairs.

Monday, September 1, 2008

Labor Day



Mikan and Maurice Crumm. Mikan gave him some pointers for the upcoming season.


Mikan has been moved back to his own room at the hospital. This is nice because now we have a TV and we are a little more isolated from all the other action in the PICU. However, he is far away from the nurses' station. Although he is hooked up to a central monitor, the trach prevents the nurses from hearing him cry...or maybe it could be the crazy teenager that just got admitted who curses at the nurses and needs to be restrained and sedated at frequent intervals. Consequently, we've been spending even more time at the hospital, if that is possible, in order to take care of everything Mikan needs. John wasn't feeling well today, so he spent the day at home, his first day away from Mikan since he's been born. Grandma Gensic is spending the night with Mikan at the hospital tonight.

Mikan is still doing pretty well. His feedings are still terrible, but his PT from NICU came and saw him today and said that he may do much better with solid foods. She says that often times babies that have difficulties eating from a bottle end up doing much better once they switch to solids.

The video below shows off some of Mikan's standing abilities. He's sporting his sexy hospital gown. Take note of the dirty look he gives the camera at the end. It's classic Mikan.