Born May 25th, 2008
2:59 pm
6 pounds 13 ounces
Length 19 3/4 inches

Saturday, June 14, 2008

Friday, June 13th

Kevin and I decided that today would be as good as any day to try and get caught up on some sleep since Kinley is still on ECMO and will be for at least a few more days. We arrived at Kinley's baby station around 11:05 am. Kinley had a new nurse today, Brian, along with Linda, who she has had before. (I know, it seems like Kinley should have met all of the nurses by now, but not everyone can be lucky enough to take care of Kinley.) Brian and Linda informed us that Kinley had a pretty quiet night, but she did require a lot of PRN meds (PRN means extra doses) overnight because she started waking up and being fussy. She got 4 doses each of morphine and versed plus an extra couple doses of fentanyl. Fentanyl is another type of pain med. Since Kinley seems to be building up a tolerance for her morphine and versed drips, Dr. O increased them overnight. Now Kinley will be receiving morphine at a rate of 140 and versed at a rate of 130 from her IV drips. Another med change that was made overnight was to give Kinley her blood pressure med every 6 hours and not just when her BP reaches the upper limit. This way it is a little more proactive and hopefully we can prevent her BP from reaching the higher limits. Kinley's oxygen challenge this morning was only in the 60's, but remember, switching out the ECMO pumps usually sets the baby back a few days, so the low score this morning was not a huge surprise. Kinley is still getting pulmozyme every 12 hours and her IPV treatments every 6 hours. Her x-rays do not show significant changes in her lung, but Kevin and I feel like the treatments are working since we can see Kinley coughing and bringing up mucus during the treatments. Kinley's urine output remains good and was 8.7 overnight which is great.

Around 12:20 pm Brian called a music therapist for Kinley. Later on today she should be getting her very own IPOD to use at the hospital. The IPOD will play lullabies for Kinley to see if that helps her relax at all. Brian also noticed that Kinley was sucking on the tubes in her mouth sort of like a binkie, so he cut a real binkie to fit around the tubes. Kinley will need some practice on how to use the binkie because she just kept spitting it out.

Dr. M and Dr. W came by around 1:30 pm to round on Kinley. Basically the plan has not changed from yesterday. We are just going to sit back and continue the pulmozyme and IPV treatments over the weekend and re-evaluate on Monday. They did make some slight changes to Kinley's vent settings to see if they could allow Kinley to rest her lungs a little more over the weekend and also help her lower her CO2 a little more. One bit of disappointing news was that Dr. M does not think that Kinley is stable enough, even on ECMO, to have surgery at this point. We will still re-evaluate on Monday, but if Kinley's status is not changed, she may not even have her diaphragm repair surgery next week. Lets hope there is some improvement after letting Kinley rest over the weekend.

Around 4:15 pm there were a couple little hiccups with Kinley's care. First off, one of the tubes that goes in through Kinley's belly button. The tube is used to monitor her BP and is also used to draw blood from. The tube got a kink in it when Kinley was getting some labs drawn and has been leaking blood ever since. An IV team came to look at the leak to see if they could just repair it. Luckily they were able to repair the leak and the tube, as well as Kinley, are doing just fine now. The reason this could have been a problem is because Kinley is now too old to put another line in her belly button and it is not ideal to have to put another line in somewhere else since Kinley is still on heparin (a blood thinner). Secondly, Kevin and I noticed some blood oozing around the site where Kinley's ECMO tubes are inserted in her neck. Dr. M stated that this is to be expected since the IPV treatments shake Kinley some. She did not seem too concerned and we will just continue to watch that area a little more closely.

At 4:30 pm Kinley's IPOD is hooked up. Hopefully she will like the lullabies.

Kevin and I are still staying at the Hyatt across the street, so we decided to stay through shift change again. When we returned Carrie and Kathy were taking good care of Kinley. We stayed until 11:00 pm and then decided to head to our room for some rest since we knew Kinley was in good hands.

Friday, June 13, 2008

Thursday, June 12th - New Treatment Plan

Note for the reader: You may want to find a comfortable chair to read this one. It was a pretty busy day. Sorry for not getting it posted sooner. I will tell Kinley to try and keep her days less eventful so mom and dad can keep the blog up to date.

We arrive around 8:00 am, right after the morning shift change, to find Sunny and Sarah watching over our baby girl. The morning is pretty uneventful as we wait for the doctors to do their rounds. As soon as they get to Kinley we will have a better idea of what her new treatment plan is.

It is 12:30 pm and the doctor's rounds still have not made it to Kinley's bedside. I am guessing that they are saving the best baby for last. Instead, we have different visitors. Sofia Miller and her parents have stopped by to say hello. Kathy and I step out for a few minutes to catch up with a family that was literally at the same baby station, with ECMO, around 3 months ago. Sofia is looking great and by what we have been reading on her blog ( she is having a ball being at home with mom and dad. We are very very happy for the entire Miller family, to finally have their little girl home and doing so well.

Around 12:45 pm Dr. M stops by to discuss Kinley's new treatment plan since she did not respond well yesterday to trying to come off of ECMO. As of right now it looks like we will be working on a 4-step process to try and get Kinley off of ECMO and into surgery.

Step 1: A new pulmonary treatment to try and get Kinley's pneumonia mucus moving out of her airs sacs and towards her breathing tube, where it can be suctioned out. This new treatment is called IPV. The official name is far to hard to spell and type, but it works similar to the high frequency ventilator Kinley has been on in the past. It delivers the same volume of air as the conventional vent, but at a higher pressure and at very rapid intervals. It works by getting air behind the mucus and pushing it towards the main bronchi of the lungs. From there the lungs should take over and keep the mucus moving so Kinley can cough it up and then the nurses will suction it out. Dr. M is wanting to try the IPV treatment once and see how Kinley responds. Many babies dislike IPV treatment and tend to drop their sats (oxygen saturation), which means they have to stop the treatment. If Kinley can tolerate the IPV treatments, they will be done every 6 hours and each treatment will last 10 -20 minutes.

Step 2: Change out Kinley's ECMO machine. The artificial lung and circuits on ECMO machines tend to have a life span of two weeks before blood clots in the system become a concern. Today is Kinley's 14th day on ECMO and we know now that she will need to remain on ECMO through the weekend, at the very least. They will change out Kinley's ECMO machine today (after her IPV treatment) in a controlled environment rather than waiting for a clot to form in the system and having to change them out in an emergency setting. Switching out ECMO machines usually causes the baby to regress a day or two because it takes about that long to get all of the settings on the new machine to where the baby likes them.

Step 3: Try to lower the amount of air in Kinley's bowels. (This will not be attempted until Kinley is stable on her new ECMO machine.) Recent x-rays have shown that the bowels in Kinley's chest have a fair amount of air in them. This causes there to be more pressure on her heart and lungs. In order to lower the amounts of air in her bowels they will need to paralyze Kinley. This will stop Kinley from inhaling any more air into her stomach and it will also allow the doctors to be able to manipulate Kinley more and try to get the air moving out of her chest.

Step 4: Re-evaluate Kinley and decide whether to try and see if she can come off of ECMO or move forward with surgery while she is still on ECMO. Either way, we are looking to have Kinley's diaphragm repair surgery sometime next week.

Kinley's first IPV treatment begins at 1:15 pm. It lasted around 20 minutes. They were worried the IPV would agitate Kinley, but she loved every second of it. All of her numbers got better during the treatment. I guess we shouldn't have been that surprised since we know that Kinley prefers the high frequency ventilator over the conventional ventilator. Kinley was coughing during the IPV treatment, but that is to be expected and is a good thing because it means the mucus is moving.

At 1:40 pm we get the results back from Kinley's heart echo test this morning. Honestly, I had not even thought about her heart echo test. I assumed that they were going to cancel it once they knew that Kinley could not support herself off of ECMO. Her heart echo results show that the pressure in her right ventricle, and therefore her lungs, is still the same. So it looks like it wouldn't have mattered if Kinley could have supported herself off of ECMO because her pulmonary pressure is still too high.

A little before 3:00 pm Kinley gets a chest x-ray. The reason for the x-ray is because Kinley's sats (oxygen saturation) has not returned to normal since her IPV treatment. The chest x-ray shows that the mucus is less concentrated in the upper lobe of her right lung, but some of that mucus has moved into the areas of her lung that were clear before. Kathy and I had not thought about the mucus spreading throughout her lung, but overall it is a good thing because now it is less concentrated and Kinley should be able to move it easier. Also, the nurses will be suctioning Kinley more often now and rotating her on her bed to try and keep the mucus moving.

The moment that we have been most worried about since hearing the new treatment plan has arrived. At 3:45 pm they began the process of switching out ECMO machines. The entire process did not take very long, but it felt like an eternity for Kathy and I. The moment that really takes your breath away is when they clamp and cut (literally) the tubes that are transferring blood to and from your baby. Once the tubes are cut they must connect the set coming from Kinley to the new ECMO machine. There is obviously much more that goes into this process, but too much to put into writing. Just know that we feel that the switch went fairly smoothly and at the same time we hope we don't have to do it again.

After the ECMO machines had been switched it took quite a while for Kinley's numbers to normalize. Her BP was staying pretty high and her O2 saturation was on the low end of acceptable. Kinley ended up needing a few doses of BP medication to keep her BP down and her O2 saturation levels slowly came back.

Kinley's 2nd IPV treatment of the day was scheduled for 7:00 pm, but we weren't able to start until around 9:00 pm. For this IPV treatment we are adding an extra step to the process. The extra step will be to give Kinley a round of pulmazyme first, before her IPV treatment. Pulmazyme is a liquid that will be vaporized and connected to Kinley's ventilator. It will help to loosen the mucus in her lungs. She breathes in the entire dose (probably takes between 10 -15 minutes) before her IPV treatment begins. Once again, she loves her IPV treatment. She coughs a bit (which is good) and the nurses are able to suction a fair amount of mucus out. This time, after her IPV treatment is over, her sats return to normal much quicker than before.

Soon after the IPV treatment is over a chest x-ray is ordered to see how her right lung is looking. The x-ray shows that Kinley's right lung still has mucus spread throughout. Earlier today Dr. M told us not to expect drastic changes because the IPV treatments will most likely need a few days before we start to see real improvement. She also told us that they may discontinue the treatments if they begin to feel that they are counter productive. As of right now, Kathy and I feel that the IPV treatments are doing more good than harm and we hope that the doctors decide to continue them.

Wednesday, June 11, 2008

Wednesday, June 11th - Delayed Again

The plan to remove the oxygen from the ECMO machine went as planned at 7:00 pm. We were not able to be in the room for this because it was during shift change. By the time we returned to Kinley's bedside (8:05 pm) she was already back on full ECMO support. For that short period, Kinley was able to keep her O2 levels in a good range, but she could not get rid of her excess CO2.

We are uncertain what the next step will be in Kinley's care. Her x-ray at 6:30 pm and a second one at 8:15 pm (after Kinley was back on ECMO support) both showed that the upper lobe in her right lung was still closed. According to Dr. P, there are two options to follow. One, they will attempt new ways to open her lung or two, they will do the diaphragm repair surgery on ECMO. Dr. P is guessing that they will need to move forward with surgery while on ECMO. For tonight though, Kinley will rest with the support of the ECMO machine and tomorrow a new plan for Kinley's care will be thought out.

Wednesday, June 11th - The Gauntlet Returns

Dr. W came by to talk with Kathy and I about the most recent set of plans for getting Kinley off of ECMO and into surgery to repair her diaphragm. The plan is as follows. . .

Today, at 6:30 pm, Kinley will get a chest x-ray to see how her right lung is looking. (FYI - Kinley's chest x-ray from this morning showed that the upper lobe of her right lung was a tiny bit more open than yesterday.) The 6:30 pm chest x-ray will also be used to compare to tomorrow morning's chest x-ray. At 7:00 pm today, the oxygen on Kinley's ECMO machine will be capped. This means that Kinley will be responsible for all of her gas exchange, both O2 and CO2. As long as Kinley is tolerating it well, they will leave the ECMO oxygen capped for 12 hours.

Tomorrow, after 12 hours of doing all of her own gas exchange, Kinley will have another chest x-ray and a heart echo test done. Based on the results of both of these the doctors will make a decision whether or not to take Kinley off of ECMO. If they decide that she is ready to come off of ECMO, the surgeons will be called in to remove the ECMO tubes from Kinley's neck. Once the tubes are removed, Kinley will be put on the schedule for diaphragm repair surgery. The surgeons prefer to wait 24 hours from tube removal to beginning the diaphragm repair surgery. This is to make sure that the baby is stable before surgery. Our hope is to have the ECMO tubes removed from her neck early tomorrow so they can do her diaphragm repair surgery on Friday. If you can remember from last time, the surgeons do not do surgery on the weekend so if they cannot get her in on Friday then she will have to wait until Monday.

Wednesday, June 11th - Extreme Crib Makeover

(Announcer) Good morning ladies and gentlemen and welcome to another edition of Extreme Crib Makeover. Let's get a quick update from Kinley's parents and then we will move on to the main event.

(Dad) Hello, thanks for having us on the show. Kathy and I arrived at 8:00 am to find Kristen and Jackie, Kinley's nurses for today, and an ultrasound technician giving Kinley her head ultrasound. The head ultrasound did not take long, but like normal we will need to wait for official results from the radiologist. As soon as the ultrasound technician is gone, Kristen gives us an update on Kinley's most recent activities.

(Still Dad) Kinley's night was pretty quiet. She had a chest x-ray at 5:00 am (we have not heard the results yet) and needed some extra morphine and versed around 6:00 am because she was a little restless. Kinley did not need any BP medication during the night shift which means that she has gone 24 hours without BP medication. Way to go baby girl! And last, but definitely not least, Kinley's oxygen challenge came back with a score of 335. That's two days in a row with scores over 300.

(Announcer) And now onto Kinley's Extreme Crib Makeover. Let's begin with Kinley showing us all how she wants a bigger bed.

Kinley loves to spread out and relax.

(Announcer) Sorry, we can't get you a bigger bed, but we can get you some new bedding. But before we pick out that new bedding and get them set up, why don't we get you cleaned up? We'll have mommy trim your nails and give you a massage. Then both mommy and Kristen will give you a bath so you will be clean for your new bedding.

Kinley loves her massage. Thank you mommy.

(Announcer) Alright Kinley, what would you like to see with your new bedding? (Kinley) I would like to have a nice green, as the base color, because I know that green is my daddy's favorite color. And I want to make sure to have some pink so that everyone knows that I am a girl.

(Announcer) How about any animals? Would you like any animals on your new bedding? (Kinley) I like frogs. Both of my parents went to TCU and the TCU mascot is a horned frog. If we could get some frogs on my new bedding, that would be perfect.

(Announcer) Alright folks, our designers are out scouring downtown Kansas City looking for just the right bedding for Kinley. When we come back we will show Kinley what our Extreme Crib Makeover team has come up with.

(Please pretend that you are watching some commercials. Guys, feel free to switch channels during this commercial break and women, feel free to yell at the guys for switching channels.)

(Announcer) Okay, welcome back everybody. Kinley, are you ready to see your new bedding. (Kinley) Yes, I am so nervous right now. I think I can feel my blood pressure rising. I hope they don't have to give me any morphine, versed or BP medication. I am trying to kick the habit. (Announcer) Alrighty then, let's hope we don't have to sedate Kinley before she sees her new bedding. Here we go!

(Kinley) It's perfect. I love it. My bedmates love it too.

Lovey bear and Sugar bear both love the new bedding.

(Announcer) Well everyone, it has been a busy and productive morning for both Kinley and the Extreme Crib Makeover team. I think we should probably let Kinley get some rest.

Tuesday, June 10, 2008

Tuesday, June 10th - Evening Update

Kathy and I have returned to Kinley's bedside after the shift change. Kinley did require an extra dose of morphine and versed during the shift change because she was getting a bit fussy. Good news is that, so far today, she has not needed any BP medication. Now that I have said that, I am sure that I have jinxed Kinley and she will probably need some BP meds soon.

Head ultrasound update - the final results are in and her brain is looking good.

To finish out a good day, here are a couple of pics of Kinley with her bears. Below the two pics is a link to a montage of "Kinley's Spa Day" that Aunt Mary (Kathy's sister) created. Enjoy.

Tuesday, June 10th - A Good, But Busy Morning

It is a good thing that Kevin and I stayed at the Hyatt across the street from Children's Mercy Hospital last night. This morning around 7:25 am we received a call from Sarah, one of Kinley's nurses for the day. She told us that the surgeons were ready to do a bronchoscopy on Kinley, but we needed to come over to sign the consent forms. Apparently the surgeons had an opening and wanted to get Kinley in first thing this morning. We were able to get to her baby station by 7:45 am to sign the necessary paperwork.

The bronchoscopy is a procedure where the surgeon goes down Kinley's throat with a microscopic camera to look for any reason that may be causing the right upper lobe of her right lung not to open. Kinley will need to be sedated for the procedure. The doctors originally thought that Kinley might have a bunch of mucus in her lung, but it turns out that the upper lobe of her right lung was just collapsed and a little inflamed from the pneumonia. The surgeon was able to suction a little mucus out of Kinley's lungs while she was down there with her camera, but for the most part we will just have to wait for the inflammation to go down. That will just take some time of Kinley being on antibiotics to treat the pneumonia. The surgeon did notice that in addition to the pneumonia, Kinley also has some yeast growing in her mouth, throat and lungs. This will be treated with an antifungal medication, Diflucan. Finally, since they had to take Kinley's original breathing tube out for the procedure, they put in a new tube which is a little larger. The larger tube should fit Kinley a little better.

After the procedure was done, Kevin and I were able to come back and be with Kinley. We learned from Sarah and Megan, Kinley's nurses for the day, that last night was pretty uneventful. No big issues or concerns to write about. Some good news is that Kinley's oxygen challenge this morning was 306!! Lets keep those high numbers coming.

Around 12:15 pm Dr. E and Dr. W came by to do rounds on Kinley. Basically the plan is to wait it out for 48 to 72 hours to see how Kinley and her lung are responding to the antibiotics and the Diflucan. She will remain on all the medications for another week. They also had respiratory therapist come in to look at Kinley and change her vent settings to help open the closed lobe of her right lung. Also discussed in rounds was the fact that Kinley's clotting factors are still a little off. The plan for that is to continue to treat with blood products. The doctors stated that being on ECMO for this amount of time can cause the machine to form clots, but switching out the machine usually results in a setback for the babies. Since Kinley will hopefully be coming off of ECMO in 48 to 72 hours the plan is to ride it out and not opt for a new machine just yet.

At 12:35 pm a respiratory therapist came by and changed Kinley's vent settings. She is still a little "out of it" from her procedure this morning, but she tolerated the changes to her vent well.

Kiney had an abdominal and head x-ray done this morning and the results are in...everything is looking normal so far, which is good. She also had a head sonogram, but that was done a little later and we do not have those results yet, but that is also a good sign.

Overall, a good, but busy morning for the Melcher family. As for the afternoon and early evening, Kinley is just sleeping away. She is more sedated today from the extra medications that she received before her procedure, but that should give her some time to rest. Now, if only her mommy and daddy could get some rest.

Monday, June 9, 2008

Monday, June 9th - No Signs of Sepsis!

Just a quick update to let everyone know that an infectious disease doctor just stopped by to see Kinley. He looked her over and did not see any signs of sepsis. He is just recommending that Kinley stay on her antibiotics for about 5 or 6 more days to make sure she is able to kick her pneumonia.

There was one other change for Kinley today. Dr. W decided to switch Kinley back to the conventional ventilator. This happened around 3:30 pm. The hope is that the new ventilator will help Kinley open up that upper lobe of her right lung.

On a brighter note, Kinley is getting one of her old toys back. The trial blood gas machine that she had before she went on ECMO is being set up again.

Monday, June 9th - Another Reason Not to Like Mondays

We arrive shortly after the morning shift change. Dot and Teresa get us updated on Kinley and her night. Overall, it was a pretty uneventful night. Kinley did need a few extra doses of BP medication, morphine and versed to make it through though.

This morning Kinley had a chest x-ray, a head ultrasound and a heart echo test. We are still waiting to hear back on the final results, but none of the technicians gave any indication that they could see anything different from their last scan. Kinley got a bit upset before her heart echo test and sent her BP to a new high. (Hello gray hair!) They had to give her some extra drugs to get her to calm down. Kinley also had an oxygen challenge this morning, but it was not one of her best. She only scored in the 60s.

During rounds Dr. W and Dr. E discussed Kinley and her treatment. The results are back from Kinley's heart echo and her pulmonary pressure is still too high to consider coming off of ECMO today. Kinley's morning chest x-ray showed that the upper lobe of her right lung continues to be closed. Her lung should be more open after 4 days of being on NO (nitrous oxide). Both Dr. W and Dr. E believe they know, based on Kinley's last tracheal aspirate, why her lung is not responding to the NO. It turns out that Kinley has pneumonia. The antibiotics that Kinley has been on the past few days have been fighting the pneumonia on a broad spectrum basis and today they will change to a new antibiotic that will more specifically target the pneumonia. On top of the pneumonia, both doctors are concerned that Kinley might also have sepsis. If she does have sepsis that will be a much bigger concern because sepsis is when the disease is in the blood and being spread throughout the body. Sepsis is much harder to fight.

We are hoping and praying that her pneumonia has not spread to her blood and that she will have a speedy recovery so we can get her lung open and get her off of ECMO.

Sunday, June 8, 2008

Sunday, June 8th

Today Kevin and I arrived at Kinley's baby station around noon. Jackie and Tiffani were Kinley's nurses for the day. Tiffani gave us the quick rundown on Kinley's status overnight and into the morning when we arrived. She told us that Kinley's blood pressure goes down with the hydralazine, but as soon as it wears off, the BP rises again. They had to give a couple of doses of the BP medication overnight and this morning. They also increased Kinley's sedative medication drip to see if that would help lower her BP any. Her morphine is still at 80, but now her versed drip is up to 70. That seems to help a little. Kinley's chest x-ray this morning was only slightly better than yesterday. She still has an area in the right upper lobe of her lung that is not open all the way yet. Also, her blood gases are just OK for now. Kinley will have both checked again in the morning and hopefully they will improve so that she can be taken off of ECMO.

Dr. M is Kinley's doctor for today and she is thinking that the high blood pressure may actually be from a clot somewhere in Kinley or the ECMO machine. The reason for her thinking this way is because lab results for Kinley showed her clotting factors were a little off. She received some more blood products to try to correct the issue and the doctor ordered her blood to be a little thinner than it was previously. Dr. M also ordered another ultrasound to see if there were any visible signs of a clot in Kinley's main arteries and veins as well as her liver and kidneys. If you remember from yesterday, Kinley had an ultrasound of her brain to check for a bleed. Around 1:15 pm we received the final results for both ultrasounds, and they were both normal. However, Dr. M also ordered an analysis of Kinley's urine and they did find microscopic amounts of blood in her urine. This could be a sign of some kidney damage either from a clot or from the amount of blood products that Kinley is requiring as a result of being on ECMO. Dr. M ordered a series of abdominal ultrasounds to continue to check for clots in Kinley's kidneys. With Kinley being on the ECMO machine there is a delicate balance that has to be met in terms of keeping her blood thick enough so that she will not bleed, but also not think enough to cause clots. We are still trying to find that balance. Hopefully Kinley will be able to come off of ECMO soon and we won't have to worry about that anymore.

Tomorrow is another big day for Kinley. She will have a heart echo test in the morning, a head ultrasound, a chest x-ray and an ultrasound of her abdomen. If all looks well and her blood gas tests look alright we will hopefully try to wean her off ECMO again. Kinley is such a strong girl at such a young age. We are so proud of her and will be by her side cheering her on tomorrow.