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

Saturday, July 5, 2008

Saturday, July 5th - Family time

Since Kevin and I stayed a little late last night (I didn't want to leave Kinley since I was holding her and she looked so peaceful) we slept in a little and didn't make it back to Children's Mercy until about 12:30 pm. When we arrived Kinley was fast asleep in her bed. Liz, Kinley's nurse for today, said that she had her IPPB treatment a little while ago and really did not like it. She was probably worn out from fighting with the respiratory therapist. Kevin and I have been so worried about Kinley's health that we forgot to teach her manners. Note to is not nice to fight with people who are trying to do their jobs and make you better faster. The good news is that her IPPB breathing treatments have been moved to every 12 hours instead of every 6 hours, so at least that will be nicer for Kinley.

Liz lets us know that today is a day for Kinley to rest and for us to spend some time together as a family. There are no changes to her plan of care and they are even giving Kinley a rest from weaning her versed.

Since I (Kathy still) have been hording Kinley's holding time I am letting Kevin spend time with Kinley today. He has been holding her since we arrived and Liz even let Kevin continue to hold Kinley during her assessments of Kinley. I don't think Kinley would have it any other way. She looks so comfortable in her daddy's arms and has even had some more practice with her binkie. On a side note, we forgot to mention that Kinley still has an OG tube. Her OG tube goes into her mouth and down to her stomach. It is used to suck out the contents of her stomach until she is ready to begin feeding. The nurses have been getting quite a bit of secretions out of this tube. Hopefully the amout of secretions will start to deminish so that the tube can be taken out and Kinley can begin eating. Because the OG tube is still in Kinley's mouth her binkie has to be cut to fit around the tube.

Big news for today is that Kinley is breathing "room" oxygen. Her nasal cannula has been delivering 21% oxygen for most of today and she has been able to keep her blood oxygen saturation in the mid to high 90s.

Friday, July 4th - Kinley has a new talent

July 4th was fairly uneventful for Kinley. She is doing well on the nasal canula which is still providing 40% oxygen at 4 liters of flow. Her oxygen saturation has been 100%. Way to go Kinley! Maybe soon she can upgrade to a NICU crib since she is starting to outgrow her current bed situation. Babies have to be off of ventillator support and stable on the nasal cannulas before they can get a crib.

During rounds it was decided to wean Kinley's versed drip another 10%, so she is now down to 110. She is still doing pretty well as far as withdrawl symptions go. She has some tremors and sneezes, but she hasn't thrown up in a while which is good. She also has not been too fussy, but I think that is because Kevin and I have been able to hold her a lot more lately. She seems to like being held because she usually just falls right aspleep once she is in our arms. It is so cute!!

Now for Kinley's new talent. I (Kathy) was able to hold Kinley for a good part of the day today. We have been trying to get Kinley to suck on a binkie (pacifier) because we were told that it helps babies who have had breathing tubes in learn to suck and swallow. It is also good for babies to know that some things can go into their mouths and be plesent (unlike the breathing tube and the tube that goes to her stomach). While I was holding Kinley she finally got a hold of the binkie and did really well sucking on it for about 30 minutes. Kevin and I were so happy. We missed 4th of July fireworks, but this was better than any fireworks display to us.

Friday, July 4, 2008

Thursday, July 3rd - Off The Vent & MRI Results

Hello everyone, we apologize for the late post. July 3rd was a very eventful day (both good and not so good) and Kathy and I needed some time to ourselves to process it all before sharing the news with friends and family. Due to this gap in time between experiencing it and writing it out we cannot recall every detail, but we will do our best.

We arrived early to make sure that we were here in time for rounds because if Kinley's morning chest x-ray looked good there was a pretty good chance that she would be extubated (remove her breathing tube and be off of ventilator support). Before rounds began Amber, the nurse practitioner, stopped by to see how Kinley was doing. During Amber's short visit she mentions that she has seen Kinley's morning x-ray and there is some air in her chest cavity. She is thinking that they will probably not extubate today and that they may have to consider putting a chest tube back in, but Dr. K will need to make the final decision. This news is pretty depressing because we were really hoping that Kinley would be able to come off of her ventilator today and also because putting in a chest tube means that Kinley will need to be cut again.

During rounds with Dr. K we receive news that is a bit different from earlier. Dr. K is happy with Kinley's chest x-ray and he is glad that her chest cavity is filling with air instead of fluid. This means that Kinley will not need to have a chest tube put back in, but more importantly, Dr. K puts in orders to have Kinley's breathing tube removed. In place of Kinley's breathing tube and ventilator support she will be given a nasal cannula. A nasal cannula is a tube with two short spouts that will blow oxygen into Kinley's nose, but before Kinley's breathing tube can be removed they want to make sure to have some epinephrine on hand. Epinephrine is used to help decrease swelling and the reason why they want it for Kinley is because she has had a breathing tube in her whole life and it is likely that her throat will be irritated and swell when the tube is removed. To finish up rounds Dr. K decides to decrease Kinley's versed drip by 10%. He also has the final results of Kinley's MRI, but will stop back by after his rounds are completed to talk with us and show us the images.

The time has arrived for Kinley to have her breathing tube removed. The nasal cannula is set up and placed on Kinley's face. It will deliver 100% oxygen at 4 liters per minute. This does not mean that Kinley will be receiving 100% oxygen because when she takes a breath the 100% going through her nose will mix with the 21% (room air oxygen) coming through her mouth. Brecklyn (Kinley's day nurse) and a respiratory therapist prepare to remove Kinley's breathing tube. It comes out pretty easily considering how hard it is to have a breathing tube put in. Kinley is pretty upset about having her breathing tube pulled out and she is trying to scream. Her screams are very faint and raspy due to her vocal chords being "beat up" by constant contact with her breathing tube. We are all watching to see how well Kinley can keep up her blood oxygen saturation. Unfortunately her blood oxygen saturation is steadily dropping so Dr. K decides to give Kinley the epinephrine they have on hand. The respiratory therapist hooks up the epinephrine to a gas mask and holds it above Kinley's face so she can inhale it. Neither Kathy nor I knew that epinephrine could be delivered as an aerosol and inhaled, but now we know. Kinley's drop in blood oxygen saturation begins to slow and soon it is going back up. Dr. K leaves orders with the respiratory therapist to begin IPPB treatments. IPPB treatments are where they "bag" Kinley and force her to take deeper breaths which will help her break up and move any secretions in her lungs. Dr. K also leaves orders with Brecklyn to try and keep Kinley's blood oxygen saturation at 99% or higher.

Once Kinley is stable with the nasal cannula, Dr. K takes us over to the computers outside of the ECMO room (where Kinley began her journey here at Children's Mercy) to discuss Kinley's head MRI results. There have been many moments in Kinley's life so far that have caused a great deal of worry and concern for Kathy and I. And this moment was no different. In fact, it was the worst moment so far. Dr. K explained to us that Kinley's brain is underdeveloped, most likely from periods of time where her brain did not receive enough blood or oxygen. He points out a few areas where there should be more brain tissue and less fluid. Since Kinely is so early in her life and the fact that the brain is such a complex organ, it is absolutely impossible to know how this will affect her later in life. It could range anywhere from nothing noticeable to those around her, to learning disabilities, to loss of motor skills and anything in between. To determine the final affects of this underdevelopment Kinley will require many follow up visits at Children's Mercy so they can track her progress, both mentally and physically. Along with the underdevelopment there are also a few blood clots in her brain, most likely from her 21 days on ECMO, but Dr. K does not feel that they are of much concern and he says that they will disappear once those areas are healed. As you can probably imagine this news was very hard to hear, and even harder to talk about to anyone outside of Kathy and I. (This is the reason this news has taken so long for us to post. Kathy and I needed 24 hours, and a follow up conversation with Dr. K, before we were comfortable telling others.)

Kathy and I spent the remainder of the day with Kinley, handling the earlier MRI news in our own separate ways. Kathy held Kinley while I sat quietly, withdrawn in a haze of depression. I knew that all of this was a possibility with CDH and ECMO, but it still hits you like a ton of bricks when they say it is happening to your child. Your one and only baby girl. She has already gone through more in her 39 days on Earth than I have in my entire life and it is just difficult to imagine that her life will continue to have such huge obstacles. I hate to do this and I don't mean to sound like I am complaining because I know, especially from spending time here at Children's Mercy NICU, that there are many families out there in worse places than us. I, just like any other parent, simply want the best for my child and it hurts to feel so helpless. Please don't get me wrong, Kathy and I have not given up. We are keeping hope alive that Kinley will come through this unscathed and we will do everything within our power to make sure that she succeeds in all of her future endeavors.

Kinley has had a big day and is drained physically, especially from being extubated and her first IPPB treatment. She absolutely hated her IPPB treatment. We, on the other hand, are emotionally drained from the excitement of having Kinley extubated and the results from her head MRI. By the time we leave, Kinley's night nurse George (short for Georgianna) is there to care for Kinley and the oxygen coming through Kinley's nasal cannula is down to 40%. At least we can rest easy knowing that George is caring for Kinley tonight.

Wednesday, July 2, 2008

Wednesday, July 2nd - Enough Drugs to Take Down a Horse

Kinley is back from her head MRI and it sounds like it was quite an adventure. Brecklyn lets us know that in order to get our daughter to lay still they needed to give her enough drugs to take down a horse. Kinley ended up getting 3 doses of versed (sedative), 3 doses of fentanyl (pain killer), 1 dose of pentobarbital (sedative) at three times its normal dose and finally, vecuronium, a paralytic that paralyzed her whole body. Up until the vecuronium dose Kinley was wide awake and moving. They even put three-pound sand bags on her legs to keep her still, but she simply kicked them off. It sounds like Kathy and I will definitely have our hands full once we are able to get her home. The initial results of the MRI did not show anything of major concern, but we will have to wait until tomorrow for the final results.

As promised, Kathy (a surgery nurse practitioner, I called her a surgeon in the previous post) returned to try and work on Kinley while she was sedated from her MRI. Kathy ended up removing one more suture and then she removed something that we were not expecting. Kinley's chest tube is officially gone. Kathy had talked to Dr. S (the surgeon who did Kinley's repair surgery) between this morning and the end of the MRI and he said it was a good time to remove Kinley's chest tube because it was not putting out much fluid.

One bit of information I forgot from the earlier post today is that Kinley's morning chest x-ray showed some congestion in the upper lobes of her lungs. They believe it is simply secretions and Dr. K has ordered the start of IPV treatments every 6 hours. Kinley had IPV treatments while she was on ECMO. These treatments are used to loosen the secretions in the lungs and get them moving towards the trachea where she can cough them out. Kinley's first IPV treatment went very well. Many babies de-sat (blood oxygen saturation goes down) during IPV treatments, but Kinley's actually went up.

Kathy's sister, aunt Mary, has created another picture montage. This one is of when Kathy and I were able to hold Kinley for the first time. The link below should take you directly to it. Enjoy!

Wednesday, July 2nd - A Busy Morning

Kathy and I arrived this morning to find Kathy (a surgeon) and Brecklyn (Kinley's nurse today) hovering over Kinley with the bed lights on. What's going on? Kathy, the surgeon, is here to clamp Kinley's chest tube, clean her surgery site and also remove some, not all, of the sutures from Kinley's diaphragm repair surgery. Kinley is kicking and silently screaming, even though Brecklyn has already given her an extra dose of both morphine and versed. Kathy, the surgeon, was able to clamp the chest tube and remove a few sutures, but not as many as she was hoping for. Kinley is simply moving too much for her to work safely with sharp scissors. If Kinley is able to get her head MRI today then Kathy will return after to finish. The reason Kathy wants to come back after the MRI is because Kinley will have to be sedated for the MRI and then she can work on removing more sutures without Kinley moving around.

Due to Kinley's earlier kicking and flailing, she is now without an art line. The art line was in Kinley's left foot, but she kicked it out entirely. The art line was used to draw blood for her blood gas tests and monitor her blood pressure. Now that Kinley is without an art line she will need be poked every time to draw blood whenever they need to do a blood gas test and the only way we will know her blood pressure is if they put a blood pressure cuff on her. The blood pressure cuff is the exact same as the one at your doctor's office, it is simply smaller. Not having constant blood pressure readings will probably be hardest on me since I tend to focus on her screen of stats, but at least I know that her blood pressure has been really constant since coming off of ECMO.

Good news! Brecklyn has received word that Kinley's MRI might be moved up to 11:30 am. Originally Kinley's MRI was scheduled for 4:00 pm. All we can do now is keep our fingers crossed that the 11:30 am slot stays open.

We made it in time for rounds today. Dr. K was planning on decreasing Kinley's versed (sedative) drip a little bit, but since she will hopefully be going to MRI today he decides not to make any changes because she will need the sedation during her MRI. Before Kinley can be extubated (breathing tube taken out) Dr. K wants her to have her head MRI and have her chest tube clamped for 24 hours. Since Kinley's chest tube was clamped this morning, Dr. K will take a close look at tomorrow's chest x-ray and make a determination then of if Kinley is ready to be extubated. Back when Kinley's original PICC line looked irritated they took a blood sample to check and see if she had an infection. While they waited for results they started Kinley on some antibiotics. Dr. K has decided to stop those antibiotics because the blood sample is showing no signs of an infection. But a recent tracheal aspirate (test of lung secretions) is showing a possible infection so they will begin a different antibiotic today.

Kinley left for her MRI around 11:45 am. It should take between one and two hours depending on what they see and how well they can keep Kinley sedated. She needs to remain very still during the MRI, but she is known for burning through her sedation very quickly. Remember this morning, Brecklyn gave Kinley an extra dose of both morphine and versed and it didn't even slow her down.

Tuesday, July 1, 2008

Tuesday, July 1st - It's Daddy's Turn

Before we get to daddy's big day we need to take care of some business first. This will not take long as there are not to many changes to Kinley's care plan today. Basically, when I (Kathy) arrived Katie informed me that the plan for today is to let Kinley rest a little. She will have her versed decreased from 150 to 135, but that is pretty much it for now. Kinley did really well last night and didn't need any extra doses of morphine or versed (PRN's as we medical folk like to call them). She is still getting blood gas tests, but now they will be every 8 hours instead of every 6 hours. The blood gas results have all been really good, but since Kinley is on such low vent settings already there is not really much more to wean, so the vent settings are staying the same. We are now just waiting for two things. The first is for Kinley to go to radiology for the MRI of her head. The second is for her chest tube to be removed, but surgery wants to wait until its output is a little less. Once both of those are done then hopefully she can be extubated (take the breathing tube out of her mouth and get rid of that pesky vent)! Hopefully Kinley will get to have her MRI tomorrow, but she is not scheduled until 4:00pm so there is probably a good chance she might get bumped to Thursday. Lets hope not though.

Today was a big day for daddy. First of all, he went back to work for the first time since Kinley was born, but with his new part time schedule he was able to get off at noon and be at the hospital by 12:40 pm. It is so nice that Kevin's work has been so accommodating for Kevin and I. It has really helped us out with Kinley being at Children's Mercy and it will be a huge help when Kinley comes home. Thank you. We really appreciate it.

Now for the other part of Kevin's big day...he was finally able to hold Kinley for the first time! Once again Kinley did really well with the transfer from her bed and fell fast asleep shortly after being placed in her daddy's arms.

Katie placing Kinley in daddy's arms.

Katie & Lindsay (respiratory therapist) get Kinley organized.

Kinley has come a long way, but she still has plenty of tubes and wires.

In daddy's arms at last.

He is such a natural daddy.

Kinley is already fast asleep.

I can't decide who is better looking?

The Melcher Family (if only Kobi, our dog, could be here)

Monday, June 30, 2008

Monday, June 30th - Mommy's First Hold

Kinley is 36 days old today and it is the first time that Kathy has been able to hold her. They are a perfect couple. My two beautiful ladies. Kinley fell asleep almost immediately after being set in her mommy's arms and she remained there, fast asleep, for 3 hours. FYI - it did take two highly trained nurses to move Kinley (with her tubes and wires and ventilator) from her bed and into mommy's arms. Here are some pics of mommy's first hold.

The transfer to mom by Katie and Sarah

What's going on here? This isn't my bed!

Sure is comfortable though. I'm getting a little sleepy.

Going. . .

Going. . .

Gone. (Oh yeah, GO WILDCATS!!!)

The Melcher Family. Together at last.

Still sleeping.

Kinley's belly button finally fell out the other day.

Back in her old bed.

Kinley was so happy and content in her mommy's arms today that I didn't want to disturb here. Maybe tomorrow I will get my chance to hold my baby girl.

Breathing Room Air (if only for a little while)

Just a really quick note because I am not sure how long it will last, but Kinley's vent is only providing her with 21% oxygen. That is the same as if she was breathing "room air." Hopefully she can maintain her blood oxygen saturation levels in the mid 90s.

That was short lived, but at least we know that Kinley is close. Katie had to turn the vent back up a bit because Kinley's blood oxygen saturation went down to the high 80s. Kinley was able to maintain the high 80s, but the doctors want her in the mid to high 90s. It looks like Kinley will be dancing around the 21% "room air" mark. She is currently at 23% from the vent and she is sating in the mid 90s. It is funny to see what a difference 2% can make.

Monday, June 30th - Lots of News

Kinley's trip to radiology and the placement of her new PICC line went great. She slept through the entire procedure. Her new PICC line is in her left arm and enters the vein right around the elbow. Dr. K has decided to keep Kinley's art line in place, but not sure how long he will want to keep it in because they can now draw blood from Kinley's new PICC line.

Katie is back today to take care of Kinley and she give us an update on all of the BIG news that we missed from rounds.

1) Versed Drip: Now that Kinley has been completely off of her morphine drip for a few days it is time to start weaning her versed (sedative) drip. Today they will lower it from its current rate of 180 to 160. They may also begin the replacement drug for versed, which is ativan, but it is not for sure yet.
2) Head MRI: Kinley is scheduled for a MRI of her head on Thursday. Every baby that has been on ECMO has to receive a head MRI. This is to check and see that all portions of the brain are having good blood flow. Remember, ECMO increases the risk of brain bleeds and clots.
3) Extubation: Kinley has been doing so well on the conventional ventilator that they may remove her breathing tube on Friday and then she will be ventilator free.

Drumroll please!

4) Best News of the Day: We may be able to hold Kinley today. This would be the very first time that we have been able to hold her since she was born 36 days ago.

Sunday, June 29, 2008

Sunday, June 29th - PICC Your Trip! (The Game Show)

Announcer: Hello everyone and welcome to a brand new episode of "PICC Your Trip!" The game show where contestants choose what to do about their vein irritating PICC lines. Today's lucky contestant is Kinley Melcher. Kinley was born with a congenital diaphragmatic hernia (CDH) on May 25th and has spent most of her life on ECMO (heart and lung bypass) while vacationing within the friendly confines of Children's Mercy's NICU. But now that Kinley has had her CDH repair surgery and come off of ECMO she is enjoying the life style, that we all know and love, of recovery and IVs. One IV in particular, the PICC line, is why Kinley is here today. Welcome Kinley and thanks for being on our show!

Kinley: Thanks for having me. Ow. I am so glad to be here. Oww!

Announcer: I see that you are in pain. Can you tell us what is going on?

Kinley: Sure. (grimace) I have a PICC line running up my right leg and it has irritated and inflamed the vein it is running through. Now I need to have it removed and a new one put in because it is used to supply me with all of my nutrition until I can eat for myself. But the problem with putting in a new one is that most of my limbs are already taken up with other IVs. The only places left to place a new PICC line are my left arm and the left side of my head. The right side of my head won't work because that is the same region where my ECMO tubes were in.

Announcer: Wow! Has anyone tried to put in a new PICC line yet?

Kinley: Yes. Brian, one of my previous ECMO nurses, has tried to place a new PICC line in my left arm, but my veins just weren't cooperating. I cried and screamed the whole time, mainly because I am currently going through morphine withdrawals. Not even extra doses of morphine and versed could calm me down. It is a good thing I was intubated because I would have woken up the entire nursery. It was also a good thing that my dad didn't take any pictures of me upset because I would have had to hurt him.

Announcer: That's too bad that it didn't take. Well, have you at least had the PICC line removed from your leg?

Kinley: Yes. It may have been just as painful as trying to get my new PICC line in. Initially, my old PICC line was coming out smoothly until my irritated and inflamed vein spasmed and clamped down on the line, making it near impossible to remove. The nurses had to bring in heat packs and wet wipes to help my vein relax. After about a half an hour of hard work by the nurses, and me silently screaming my head off, the old PICC line was out.

Announcer: Alright Kinley, I can see that you are in A LOT of pain.

Kinley: You're "bleep"ing right I am in pain! Today was supposed to be a relaxing day, but my veins aren't "bleep"ing cooperating and I have spent most my day "bleep"ing screaming and crying!!!

Announcer (off camera): Alert the nurses and security! We may lose control of this one. (A nurse brings the announcer a hand written note.)

Kinley: Sorry about that. I am just having a rough day.

Announcer: That's quite alright. I have just been informed that we can only offer you one trip on today's show, instead of the typical three we normally do. Apparently the doctors and nurses feel that it would be against your best interests, and health, to go to London or Cabo San Lucas in your current state. So we will only offer you the third and final trip. Are you ready?

Kinley: Yes, although it would have been nice to go to Cabo and work on my tan. But I am pretty sure that my ventilator wouldn't fit in the airplane's overhead compartment.

Announcer: Kinley Melcher, you are the proud winner of an all expense paid round trip to Children's Mercy Radiology department. Tomorrow morning you, and your ventilator, will be rolled down to Radiology. There you will be pampered and spoiled with the finest of sedatives. And while you are sedated the radiologist will place a new PICC line using an ultrasound machine to guide his movements. After the placement of your new PICC line you will be returned to your little slice of heaven known as bed station D-39. How does that sound?

Kinley: That sounds perfect. I better rest up for my trip. I wonder what I should wear? Got it! A diaper.

Kinley resting up for her trip to Radiology tomorrow

Kinley resting while her dad works on corny blog posts

Sunday, June 29th - Switching Vents & PICC Lines

Yesterday was an okay day for Kinley. There were no huge leaps forward, but there weren't any big set backs either. She is continuing to fight with withdrawals (vomiting, sweating, easily agitated, sneezing and extra secretions from her lungs), especially now that her morphine drip is completely gone. Her methadone doses, which are given every 6 hours, seem to curb her withdrawals for about 3 to 4 hours, but then she typically requires an extra dose of morphine to get her through until her next scheduled methadone dose. Kinley required 3 extra doses of morphine yesterday, one during the day and two during the night. The support from Kinley's high frequency vent was turned up a tiny bit last night because the CO2 levels in her blood were a bit high, but they did not need to increase the percentage of oxygen coming from her vent. The oxygen from Kinley's vent was around 35% and her blood oxygen saturation remained in the low to mid 90s all day.

When we arrived today there was a large crowd around Kinley's bed station. "Did Kinley decide to throw a party and not invite her parents? I mean, I know she has her own place now, but come on!" The crowd that had gathered (2 respiratory therapists, a nurse practitioner, Kinley's day nurse and Dr. K) was actually there to switch out Kinley's vents. Right as we walked up the respiratory therapists switched Kinley from the high frequency ventilator to the conventional ventilator. The respiratory therapists stayed for a little while after the switch to make sure Kinley did not need to go back on the high frequency ventilator. She did not, Kinley was able to maintain her blood oxygen saturation in the mid 90s and her blood CO2 levels are within range.

Shortly after the vent change Dr. K, Delores (the nurse practitioner) and Katie (Kinley's day nurse) take a look at Kinley's right leg. (FYI - Katie was Kinley's day nurse for a few days after Kinley came off of ECMO, but when she was still in the operating room.) Kinley's right leg is the leg that her PICC line goes through. The PICC line is the IV line that runs, inside a vein, from Kinley's right foot and ends just outside of her heart. It is used to give Kinley all of her meds and nutrition. Kinley's right leg looks red and irritated and it is definitely sensitive to the touch. She gets very upset whenever somebody touches it. Dr. K informs us that there are two reasons why this might be happening, but they are both connected with Kinley's PICC line. The first is that Kinley's PICC line is simply irritating the vein it runs through and causing it to become inflamed. The second is that the PICC line has given Kinley an infection. Either way, the PICC line needs to come out as soon as a new PICC line is put in. Later today Brian, another nurse, will attempt to place a new PICC line. He will try to place it Kinley's left arm because Kinley's other extremities are already in use. Her right arm already has her Mid line and her left leg already has her Art line.

Rounds were done before we arrived, so Katie gives us a quick update. No big changes other than the ones we have already witnessed or heard directly from Dr. K. Kinley's methadone dose and versed (sedative) drip will remain constant for today.