Saturday, October 27, 2007

Kinnick and Carver Hospital Pics

October 27, 2007

Sorry that it has been so long since I posted. Both babies finally came home on Tuesday. That was a very stressful day, but exciting day. The Home Medical Supplies place didn't bring their equipment to our home until 4pm on Tuesday - we were told we would be released at 10:00am. We didn't get home till around 2:00pm. I had no idea how much equipment we would need. By the time all of the equipment was dropped off, we looked like we just moved in. We had boxes and machines everywhere. It took a while to organize everything in a way that was useful. I'm still moving things as I go. The nights have gone amazingly well. Both babies sleep very good at night. Kinnick's saturation monitor goes off more then Carvers, so we get up to check on her quite a bit. Carver wants to sleep all night, but we have to wake him for his feeds. He has a hard time gaining weight, so we can't miss any feeds. The days have been very stressful. Luckily, I have a Home Health Care nurse that comes during the day to help me. The babies are on so many different meds that it takes both of us to keep them straight and given on time. In addition to the multiple meds, the babies have appointment booked nearly every day. It is a chore to get all of their equipment and them in the car and to the appts on time. I'm not sure what I would do without the help of the Home Heath Care nurse.

Carver has been on 1/4 lt at 100% oxygen. I don't even have to adjust his settings during the day - he just cruises along. We very rarely hear his alarms. He's been a sleepy little guy. He's starting to get a little personality - even starting to smile and coo. We are trying to schedule another BAER (hearing) test to re-evaluate his hearing. This should happen soon.

Kinnick came home on 1/2 lt at 100% oxygen. Her alarms sound a lot, and we were constantly adjusting her flow. By Friday morning, she was on 2 lt at 100% oxygen. We were having to suction her several times a day/night. She was on several breathing treatments, but we couldn't get her oxygen down to a reasonable level. We took her to the doctor on Friday morning and they sent her back to the hospital. She's back in the PICU at Wesley hospital. We were sad to send her back. The PICU is just full of sick kids and the germs are spread so easily in the unit. In fact, the reason she is back in the PICU is probably related to something she caught while she was in the PICU. She had been fluctuating a lot on her oxygen and had started spitting up a lot of mucus before ever coming home. It just got worse from one day to the next. They have tested her for several viruses, but nothing has come back positive. So, sounds like one of those "unknown" viruses. You know - the one they always say your child has when they don't know what's wrong. I'm not sure how long they will keep her. I would like her to be on a more reasonable level of oxygen before coming back home. Kinnick is supposed to get her Mickey Button on Monday. The temp G-tube looks terrible. It looks like a little rubber hose coming from her stomach with a pair of dull child size scissors to clamp it closed. The Mickey Button will be a little cap that just barely sticks up off her skin and is easily hidden. We are trying to schedule another BAER (hearing) test to re-evaluate her hearing. This should happen soon.

Please pray that Kinnick gets well soon, so she can return home with her family.

Tuesday, October 16, 2007

October 16th, 2007

Quick update..

Kinnick is doing amazing after her surgery. She is already on 1/8 lt flow at 100% oxygen. She is now on less oxygen then Carver. The doctor said that it is possible that she won't even need extra oxygen in the next couple of weeks. It's so hard to believe that her breathing problems were caused by acid reflux. With results like these in 1 day, I can't wait to see how good she is doing in 2 weeks. She came off the ventilator within a few hours of surgery and with very minimal swelling. The surgeon and doctors expected her to be on the ventilator at least 3 days. I guess Kinnick had different plans. She tolerated 1/4 feeds today. They will increase her feeds by 1/4 each day until she is on full feeds. Once she is tolerating full feeds, she can go home. The doctor expects both babies to be home the first part of next week!

Carver continues to do well. He is now on medication for his acid reflux and has not been spitting up. They have increased his calories to 30 cal/oz. They are trying to get his weight up. Kinnick looks huge compared to him and is only on 22 cal/oz. Carver was seen by the ENT yesterday. The ENT will fit Carver for hearing aides once he has been dismissed from he hospital. He doesn't feel like putting him in hearing aides while he is in the hospital would be a good idea - too much noise. He still believes that Carver has profound hearing loss. We will try the hearing aides for 6 months.

Thank you for all of your prayers! As always, they have been answered. We couldn' have expected anything more. Kinnick is doing fabulous! Thanks be to GOD!

Sunday, October 14, 2007

October 14th, 2007

Hello all!

Sorry it's been a while since I posted last. We made it back to Wichita safely. We celebrated 4 birthday's today. Hayden turned 2 on September 21st, Kirsten turned 18 on September 26th, Harrison turned 10 on October 2nd, and Bob turned 32 today! Wow, did we have a lot of cake! The cake was fun. Bob had a golf theme, Harrison had a football theme, Hayden had a Madagascar theme, and Kirsten had a Pirates of the Caribbean theme. The kids were such troopers waiting to celebrate their birthdays. We are blessed with very patient and understanding children. They really care about Kinnick and Carver and were happy to wait knowing this is what it takes to get their Brother and Sister home ASAP.

I met the ICU Pediatrician, Dr. Lindy Smith. I really liked him. He listens and acted immediately. Things are moving very quickly. An ENT (Dr. Harris) was in to see Kinnick Thursday evening. He confirmed that there is no block in her nose and the left vocal cord does not appear to function as well as the right vocal cord (meaning possible paralysis of the left vocal cord - this can repair over time). A surgeon also came in Thursday evening to evaluate Kinnick for a G-tube. An upper GI was scheduled and done on Friday to evaluate for G-tube placement. During the upper GI procedure, it was discovered that Kinnick suffers from significant acid reflux. The acid is causing inflammation of the esophagus which could be causing some of her breathing problems. Kinnick is scheduled for surgery at 7:30am CST tomorrow morning. She will get a G-tube and a stomach wrap procedure that will keep her from having the acid reflux problems. I am told that this should make a difference in her breathing within 2 weeks. While she is sedated, Dr. Harris (ENT) will come in and do a little more extensive research on her throat to see if there is any other obstruction besides the inflammation caused by the acid reflux. He will confirm whether or not scar tissue from the PDA ligation is causing an obstruction and the partial paralysis that we are seeing with her left vocal cord. I am told that the surgery combined with the add'l scope procedure could take 2 1/2 - 3 hrs to complete. Kinnick will be put on the the ventilator for the procedures. I'm told to expect her to be on the ventilator at least 3 days. The recovery is very painful. She will be sedated and will be given pain medication for at least 3 days. I was also told to expect a lot of swelling - similar to what we seen with her NEC surgery (intestines). This is going to be really hard for us. Kinnick has been doing so good lately. It will be hard to see a set back like this. However, this is the last step before Kinnick is ready to go home. In addition to all of this, they switched Kinnick from the high flow cannula to a low flow cannula. She seems to be much happier not having all of the high flow air blowing up her nose. To do this, they put her on 100% oxygen (same thing she will go home on) and just adjust flow as necessary. She has been on 1/4 - 1/2 lt flow.

Carver was also seen by a surgeon on Thursday. Nothing significant - he is just needing a circumcision. They wait to do this procedure until shortly before they go home. This procedure will be done early this week at the bedside with sedation. A nutritionist came to see Carver yesterday and added add'l fat to Carver's formula. They don't feel like he is gaining enough weight. Since we already have a hard time getting a minimum volume in him, it won't do any good adding add'l food. So, instead they're adding extra fat to the formula to increase calories. They have also put Carver on acid reflux meds. He spits up quite a bit a couple of times a day. They believe this is because of acid reflux. They have also started Carver on a diuretic drug. They believe between the diuretics and the acid reflux meds, his breathing will also improve. Carver was on diuretics when we went to Detroit. The Doctor's in Detroit cancelled his diuretics because they thought they were keeping him from gaining weight. We didn't see a significant difference in his breathing or his weight when the drugs were discontinued. We'll see what happens this time. Carver was also moved to a low flow cannula. He is on 100% oxygen at about 1/8 lt flow. We will see a different ENT tomorrow at 11:30am CST to start looking into Carver's hearing needs.

I am told that both babies should be home before the end of the month. They could be home in as little as 7-10 days.

Please pray that Kinnick will have the strength to recover quickly from this surgery. Please also pray for the Doctors and Nurses that will be caring for her. Please pray for the strength that Bob and I will need to make it through these last steps before taking the babies home.

Wednesday, October 10, 2007

October 10th, 2007

We will be flying back to Wichita at 9:00am (8:00am CST) tomorrow morning. I'm so happy to be going home, but sad to leave my new friends behind. I've met so many nice people during my 2 month stay in Royal Oak.

I'm told that we will not be going to the NICU at Wesley Medical Center. Instead, we will be going to the PICU at Wesley Medical Center. I'm nervous about the change. I really wanted to go back to the security of my Neo's and nurses that got us this far. However, I'm told that we have out-grown the NICU and need the experience of an ICU Pediatrician. I'm told that Wesley has a great ICU Pediatrician (Lindy Smith) on site that will work with Kinnick. Hopefully, he will be able to identify the cause of Kinnick's breathing problems. I really worry about her. They tell me the plan is to do whatever it takes to send Carver home ASAP. So, hopefully he'll be in our family home by the end of the weekend! We have a lot of work to be ready for him. You would think we've had plenty of time, but most of our spare time and energy has been focused on the babies health, insurance, moving into our new home, and family.

For all of our wonderful friends and family:
Thank you for being here for us through this journey.
Thank you for all of your love and support.
Thank you for all of your prayers.
Thank you for never leaving our sides.

It's been a long road and you've never forgotten about us. We thank God for all of you and his continuing blessings. God must have a lot of faith in us to give us these beautiful little angels.

Tuesday, October 9, 2007

October 9th, 2007 WBH NICU Pics

Carver 10/09/2007

Kinnick 10/09/2007

October 9th, 2007

Just a quick note....

The eye doctor cleared both babies to go home. So, hopefully we're back in Wichita by end of day tomorrow!!

Monday, October 8, 2007

October 8th, 2007

Miss Kinnick 10/8/07 and Sleepy Head Carver 10/8/07

Saturday, October 6, 2007

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying nearly all of my hotel expense and $10/day for food. They won't pay for my airfare, car, or taxi, but I hear that they will pay mileage if you drive.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 4 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

October 6th, 2007

We're just waiting for our Tuesday eye appointment. We're told that the plan is to send us back to the Wichita NICU on Tuesday. However, it is still possible that we will have to stay longer. Please pray that their eye exams go well and that we are able to go home.

Carver continues to do very well. Last night and today he's been a little crabby. I'm not sure what's bothering him. It's been a struggle to get him to eat his minimum amount of formula. Hopefully he'll be back to himself tomorrow. He continues to be on near room air on 1/2 lt of flow.

Kinnick still struggles with her breathing. The Beaumont hospital doesn't want to look into what is causing her struggles. They plan to leave that for the Wichita NICU when we return. They say that it will require a ENT to evaluate her and don't want to get something started in Michigan that will have to change hands when we return to Kansas. Guess that makes sense since we are supposed to be heading home next week. She still bottle feeds very poorly. The nurses always seem to have a reason (excuse) not to try to bottle feed her. This makes it difficult for her to start over after going nearly a complete day without trying. I've asked them to at least try during each feed even if she only takes 10ml. She needs the practice. Still doesn't seem to make a difference, because this isn't happening. Can't wait to go home and do it myself. Because of this, there is no doubt that she will require a G-tube for feeding in order to go home in the near future. The G-tube will not prevent me from bottle feeding her. I am confident that with consistent practice, she will learn to bottle feed and will not need the G-tube. It's too bad that the nurses won't do this for Kinnick. It's too easy for them to put her feed on a pump and do something else with their time. I'll quit talking about that - obviously it frustrates me.

I'm still working from my hotel. This seems to be going well. It makes for long hours working CST. I typically log in around 7:00am CST and log out between 7:00pm and 7:30pm EDT. I go to the hospital each night after work and visit the babies till around 11:00pm. However, this is much better then other options that were explored. Other options were quiting my job (can't do that because I need insurance), going back to Wichita to work and fly back to see the babies every other weekend (couldn't stand the thought of leaving the babies behind). So, this gives me the best of both worlds. I'm very fortunate to be able to work remotely.

I miss my family and friends. I can't wait to see everyone. It seems like it has been forever!

Tuesday, October 2, 2007

October 2nd, 2007

At least one more week in Detroit...

Carver's left eye is still a little sore and puffy. He didn't like having it touched and looked at by the eye doctor today. She really struggled to get a good look. He's a strong little guy. The doctor wanted to give it one more week before sending us home. Most of the blood is gone from his right eye. She was pretty pleased. The doctor will see him again on Tuesday. Our routine eye day.

Kinnick's eyes are looking good. The eye doctor didn't express any concern with Kinnick's eyes. The doctor will see her again on Tuesday.

Carver is doing amazing. He isn't requiring much oxygen. He spends most of the day on/or near room air (21%).

Kinnick is still struggling with her lungs. She's not requiring a lot of oxygen 35 - 45% most of the time. They have her on 2lt flow. She acts miserable with all of the flow. It dries her nose out and you can hear all of the air leaking out of her nose. Can you imagine how irritating that would be? Tonight, the nurse changed her to 1 1/2 lt flow and she did better. She rested easy and just seemed so much happier. Her oxygen needs remained between 35 - 45%. So, I don't think the flow is making any difference - other then making her mad. Several things were done today to get to the bottom of Kinnick's breathing problems. They did an echocardiogram today to look for cardiopulmonary disease. They did NOT find any disease. Tomorrow, they're going to do an EKG. They're just ruling out heart disease and making sure the heart is functioning properly with all of the lung issues she's had all of her life. They swabbed her nose to test for RSV along with a variety of other viruses. We should get those results back tomorrow. Tomorrow, they will discuss checking for pseudomonus (a form of pneumonia) since she has had a history of this in the past. They will also explore ways to determine if there is an obstruction in the lungs (possibly the scar tissue that I mentioned in my last couple of updates). They will also look into a different high flow cannula that provides more moisture.

RSV (Respiratory Syncytial Virus):
This respiratory virus is the #1 cause of hopitalization in babies under a year. Both babies were given a shot today called "Synagis". This is the only FDA approved medication to help protect babies at high risk from severe RSV infection. Each dose gives the babies enough RSV-fighting antibodies to help prevent a severe RSV infection for about 28 - 30 days. They will receive this shot once a month until April or May. This will not prevent them from getting the infection, but should cause it to be much more mild. It would be life threatening for Kinnick and Carver to get RSV.

Birthday news:
Today is my son, Harrison's 10th Birthday. Happy Birthday Harrison! I wish I could be there to celebrate the double digits. We'll have a big party when Mom and the babies return to Wichita.

Kinnick and Carver turned 6mths old September 29th. I can't believe they are already 6mths old. Wow, where does the time go?