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

Saturday, June 21, 2008

Saturday, June 21st - Everything is fine, sorry for the late post

Well, Kinley's first night off of ECMO went as well as we could have hoped for. Nurse Kathy did a great job taking care of Kinley. It was pretty quiet for the most part, so I was able to get some sleep. We were lucky enough to be able to stay in our PCU room overnight so I didn't have to leave the hospital, or even the NICU, to get some rest. Kevin on the other hand did not sleep. He stayed with Kinley, at her bedside, until 6:30 am and only after I came back from my full 4 hours of sleep did Kevin step out to get some much needed rest of his own. He is such a wonderful dad and I am sure Kinley already knows how lucky she is to have a dad like Kevin.

Overnight Kinley was weaned on the amount of oxygen that she received from the vent. At one point during the night she was down to 60%, but her oxygen saturation got too low (92%, not bad, but not over 95% like the doctors want). When I came back to Kinley's room in the morning she was receiving 78% oxygen from the vent and was doing good keeping her oxygen saturation up. Kinley was also doing a good job of keeping her CO2 down and when her 9:00 am labs were drawn her CO2 was at 52 (we want this to be in the 50's or low 60's).

A little after 9:00 am Dr. M came by to round on Kinley. Overall she was pleased with how Kinley is doing. She decided that Kinley's bleeding is much, much better, so she is going to stop the med that was paralyzing Kinley and let her move a little again. Also, we are going to start to wean Kinley's BP meds slowly since her BP is starting to normalize again. (I guess she has never really had "normal" BP, she has been at one extreme or the other.) The plan for today and into early next week is to monitor Kinley's oxygen saturation and continue to wean down the percentage of oxygen from the vent. We are also going to monitor CO2 and try to control that with vent settings. Kinley still has her belly button IV tubes that the nurses are using to give meds and blood products. Normally these are taken out around 9 days of life since that is typically when the belly button scab falls off. Obviously Kinley is a little over 9 days old by now, but since she was on ECMO everyone was hesitant to change out those tubes and put new ones in. Now that she is off of ECMO, and the heparin, she really needs new tubes placed in a different part of her body. We are going to wait until Monday when someone can come to insert new tubes and then pull out the belly button tubes once and for all. One bit of information that I really got excited about was that Dr. M said once Kinley's belly button tubes are out and she is off BP meds she can start feeding!! (For those of you that don't know, Kinley has plenty of milk at home that I have been collecting for her.) She will not be able to eat normally at first. She will need to have a feeding tube to deliver breast milk directly into her stomach, but at least she will finally get to use her stomach and bowels. Up until this point she has been getting her nutrition via IV.

At around 3:30 pm we got the results from the most recent blood gas test. Kinley's O2 is really good, but her CO2 is rising and was at 72, which is too high. Dr. M and Kinley's new neonatal nurse practitioner (NNP) Patti ordered an x-ray to see what was going on with Kinley's lungs. The upper portion of both lungs were a little collapsed, so they decided to change some of Kinley's vent settings some more to try and open those parts of the lungs.

Later on around 5:30 pm we get the next set of blood gas test results. Kinley's O2 remains good and her CO2 is down back to 62. Yeah Kinley! I guess the new vent settings are working. With Kinley looking pretty good, Kevin and I left around 6:30 pm to get a bite to eat.

After shift change we return to see Kinley, and nurse Kathy is back taking care of her. Kinley has maintained good O2 and CO2 while we were at dinner, but just because it is Kinley and things can't go too smoothly, now her BP is back on the rise. Kinley was on dopamine to raise her blood pressure, but that has been stopped and her blood pressure is still on the high end. Nurse Kathy changed Kinley's diaper, suctioned her breathing tube and gave her an extra round of pain and sedation meds to see if any of that would help to lower her BP. Dr. H was thinking that we may even need to start Kinley back on hydralazine to lower her blood pressure. Kinley sure likes to keep everyone on their toes.

Friday, June 20, 2008

Friday, June 20th - First night off ECMO

A little before shift change we were able to go in and see Kinley again. It had been 21 days since we had seen Kinley without ECMO tubes going into her neck and she looks so much better now without those in!! Her body was pretty swollen after everything she had been through, but she looked beautiful to us. Also, Kinley has her high frequency ventilator back because she was having some difficulties getting rid of CO2 on the conventional vent.

After shift change we came back to Kinley's baby station and found nurse Kathy (really a nurse named Kathy, not Kinley's mommy) taking care of Kinley. Technically, since Kinley is not on ECMO anymore she only requires one nurse, but Carrie has been in and out helping Kathy. Kinley's oxygen saturation has been really good, but that is mainly because she is receiving 100% oxygen from her ventilator. Her blood pressure also looks good, but she is now requiring 2 medications, epinephrine and dopamine, to help raise her BP.

During Kinley's first assessment of the night shift we all noticed that her abdominal drain was not holding its suction. This is a problem because it means that it will no longer suction any excess blood from her abdomen. Carrie called in Dr. O for a consultation on how to handle and Dr. O ended up calling surgery to see if someone could come up and check why it is not holding its suction. Dr. Y, from surgery, came to Kinley's bedside and with the help of Kathy took off all of Kinley's dressings. (Kevin snuck in a few pics of Kinley's "battle scars." Viewer Beware: they are posted below.) Dr. Y was able to do some tricky work and now Kinley's abdominal holds its suction again.

It is close to 10:00 pm now and Kinley has been keeping her O2 sats around 100%, so Kathy the nurse was able to turn down the percentage of oxygen coming from her ventilator. Kinley is now receiving 80% oxygen from her vent and is keeping her O2 saturation above 95%. Way to go Kinley! Our goal is to keep her O2 sats above 95%. Kinley has also been able to keep her CO2 down with the help of the high frequency vent.

Kevin and I plan to stay close to Kinley this evening and are hoping for a quiet night.

Friday, June 20th - Updates While We Wait

All of these updates occurred in our PCU room:

Dr. M stopped by our PCU room to give us an update on Kinley's ECMO status. Kinley is officially off of ECMO. They have cut the tubes connecting Kinley to her ECMO machine. The tubes in Kinley's neck are still there, we will need the surgeons to remove those. As of Dr. M's update Kinley is still on the conventional ventilator. She is oxygenating well, but Dr. M wants to make sure that she is getting rid of her CO2. So she is going to run a blood gas test before making the decision of whether or not to move to the high frequency ventilator.

A little while later Pablo (surgeon) came by to get a consent form signed. This consent form was to allow the surgeons to place a catheter in the vein that Kinley's ECMO tube is coming out of. This catheter will be Kinley's central line for the nurses to input blood, drugs and/or anything else she might need.

After the surgeons were finished, it was time for Dr. S (a surgeon) to visit us. He came in and told us that the ECMO tubes have been removed from Kinley's neck, but he was not able to place the catheter. He was not surprised by this because Kinley has been on ECMO for 21 days and the vein in her neck is pretty beat up. Since the catheter could not be placed the vein was simply tied off to stop it from bleeding. For now, Kinley still has the tubes going into her belly button which they are using to give meds, blood, etc. These tubes will need to be removed soon because they are typically taken out after 1 week of life, but they could not do this for Kinley since she was on ECMO at that time. Now that Kinley is off of ECMO they will try to place other vein and artery lines tomorrow.

Dr. M returned one more time to let us know that Kinley is still on the conventional ventilator, but she is now requiring 100% oxygen (she started the day at 40%). An x-ray shows that the upper lobe on Kinley's left lung has collapsed and they are doing an open lung tool to try and get it back open. The high frequency ventilator is still on stand-by in case Kinley needs it, but her blood gases are still looking okay. Dr. M is pretty confident that Kinley's lungs can handle all of her gas exchange, but we need to make sure that they stay open. Kinley is now receiving a new medication to help with clotting and they have a second new medication for clotting on stand-by. The biggest issue continues to be Kinley's bleeding. They are still infusing a lot of blood products. Once that is under control we will all be able to sleep better (or at all). Finally, Dr. M lets us know that we are in for a pretty rough, and long night.

We are very disappointed to find out that tomorrow is Dr. M's last day with Kinley. How much do doctors make a day? I wonder if any bank will loan us enough money to keep Dr. M as Kinley's doctor.

Friday, June 20th - Bleeding Issues

Kathy and I ended up staying pretty late last night to watch over our beautiful baby. This caused us to get a little later start than normal.

As we were walking into Children's Mercy my cell phone rang, it was Dr. H. (FYI - Anytime my caller ID shows "Children's Mercy Hospital" my heart stops.) Dr. H informs me that Kinley's BP number and urine output did not improve overnight and now they are having a hard time feeling Kinley's pulse in her legs. The doctors have already met and they feel these problems are probably being caused by blood leaking and pooling in Kinley's abdomen. Extra blood in the abdomen puts pressure on the veins returning from the legs and stops that blood from returning to the heart. This would cause the pulse in her legs to be weak and would also explain why she is not producing urine. The kidneys cannot produce urine if they are not receiving much blood. As I am speaking with Dr. H, Pablo (a surgeon) is in with Kinley and he is putting in an abdomen drain.

When Kathy and I arrive at the NICU we are shown to the same PCU room we were in yesterday to wait. We cannot see Kinley yet since they are still working on her and they need to keep the room sterile. We end up waiting for close to 50 minutes before we hear anything. It felt like an eternity and our worries grew more with each passing minute. Dr. H was the first to come by our PCU room. She lets us know that everything went well and Kinley is looking much better. The new abdominal drain had already removed 300 mL (10 ounces) of blood. (If you are not sure how much that is you may want to measure it out when you get home.) Kinley's abdomen is already smaller and the color and pulse is returning to her legs. On a different note, this new found bleeding means that we need to move faster on getting Kinley off of ECMO. The new plan will be to test Kinley this afternoon and see if she can support herself by doing all of her own gas exchange. Before we can see Kinley the nurses will need to get her cleaned up.

Our next visitor is Dr. M. She reiterates a lot to the information Dr. H told us and gives us a few more details on why Kinley needs to come off of ECMO. The main reason is still the amount of bleeding, but Dr. M feels that Kinley's heart needs more support right now than her lungs. Kinley's set up on ECMO only helps her lungs and Dr. M can support Kinley's heart better if she is off of ECMO. They will let Kinley rest for about an hour and then around noon they will start to lower the support of the ECMO machine. If Kinley can tolerate supporting herself they will clamp and cut her ECMO tubes. This will allow the heparin levels in her body to drop and her blood will begin to clot.

We return to Kinley's bedside and see that she looks very similar to when we left her. The few changes are the new abdominal drain and her skin is pretty pale, but we have been assured that her pinkness will return as they work to replace the blood she is losing. This is kind of sad to say, but it means so much. Kinley is peeing again. She has catheter since she is paralyzed (by drugs) and we finally have urine output. There is almost constant motion in the operating room/Kinley's room as Dr. M, Dr. H and multiple nurses work to stay on top of Kinley's blood loss and also get her prepared to come off of ECMO. Around noon they begin to lower Kinley's ECMO support.

Kinley has handled the lower support pretty well and they decide to cap off the oxygen that is being put into the ECMO machine. Kinley's oxygen saturation levels are still good, but her CO2 levels are going up a bit. It looks like Kinley will need to be moved to the high frequency ventilator because it helps more at removing excess CO2. They have discovered that Kinley is leaking blood around her abdominal drain and this is causing her BP to drop. Now that Kinley is losing more blood than thought before, she has to come off of ECMO soon. A perfusionist will be here at 2:30 pm to cut her ECMO tubes and the surgeons will be here at 3:00 pm to remove the tubes from her neck.

We will try to post an update later today when things have settled down.

Thursday, June 19, 2008

Thursday, June 19th - Post Op Update

Before we were able to see Kinley, Dr. W took us to see her post op chest x-ray. The difference is amazing. The biggest difference, Kinley actually has two lungs! And both of them have air in them. The upper lobe of her right lung is still compressed/collapsed, but Dr. W feels that it looks better than her previous x-ray. Also, her heart has already begun to move towards the left side of her chest. It is currently sitting right in the middle of her chest cavity.

Now for the moment Kathy and I have been waiting for since 10:00 am. We walk back into the operating room and see immediately that Kinley has already been moved back into her old bed. As we get closer we can see that the majority of her belly is covered in bandages. Her belly looks huge now that all of her organs are in their correct place. The bandages, on her belly, are covering three different incisions: the largest (a bit over 4 inches) was the one made to perform the diaphragm repair surgery, the second (the width of a finger) was made so Dr. S could push the spleen out of the way and the third (the width of a pencil) was made to put in a chest tube which will drain any excess blood from Kinley's chest cavity. Her chest, on the left side, looks like it is collapsed. (Don't worry, it isn't collapsed.) The reason it looks that way is simply because the bowels that were occupying the space in her left chest are now in her abdomen where they belong. The final difference we can see is the chest tube, coming out of her bandages, allowing blood to drain out of her chest cavity. Other than those three items, she looks like the same Kinley we left 10:00 am.

Walking into the operating room after surgery. Kinley is back in her old bed.

Our first view of post op Kinley.

A closer view of her bandages.

The red ball at the bottom is collecting the blood from her chest tube.

Kinley's vitals are looking good considering she just went through major surgery while on heparin. Her BP is at a normal level without the help of hydralazine (BP med to lower BP) and her oxygen saturation is right around 100%. Her heart rate is a bit elevated, but just a bit over normal.

After getting our fill of making sure that our baby was doing well we headed back to our PCU room, where our families were awaiting our return and our update. Once Kathy and I were back we all took turns visiting Kinley to make sure everyone got their chance to see her.

As the afternoon progresses into the evening, Kathy, myself, Jackie, Sarah and Dr. M all begin to notice that Kinley's BP is steadily going down. On top of that, Kinley is not producing very much urine. Dr. M, Jackie and Sarah do not find the urine issue to be too concerning since Kinley just went through surgery and is currently paralyzed (on purpose, by drugs) to limit her movement. The lower BP issue needs to be addressed though and everyone agrees that the main cause is Kinley's loss of blood due to the heparin and her inability to clot. Kinley is not losing excessive amounts of blood, but her chest tube is draining pretty consistently. To offset this loss of fluids and to help bring Kinley's BP back up, Dr. M orders replacement fluids. Replacement fluids can be saline (volume filler), albumin (volume filler), packed red blood cells (to increase oxygen carrying cells), platelets (to help with clotting), fresh frozen plasma (to help with clotting) and/or cryo-precipitate (to help with clotting) depending on what needs Kinley has.

After shift change we find Gayla and Melissa watching over our recently surgerized daughter. (Yes, I just made that word up. Surgerized: to have gone through surgery.) Dr. P is here tonight and the decision is made to continue the replacement fluids to help with Kinley's BP. Dr. P informs us that tomorrow, when they stop the drugs that are paralyzing Kinley, we will be able to get a better idea of what her status and vitals are. The paralytic drug that Kinley is on right now is known for lowing BP and her lack of movement could be directly connected to the lack of urine output. Also, the stress and physical changes to Kinley, from the surgery, will need time to work themselves out before we really know what her condition is.

The care from everyone, nurses and doctors, here has been so amazing and extremely supportive. Dot and Megan were working today and both made sure to stop by and see how Kinley, Kathy and I were doing. Phyllis and Aja both came in on their days off to check on Kinley and make sure that her surgery went well and Julie called in from home to check up on everything. Another thing that happened today that gave us even more comfort in Kinley's care is that Dr. M refused to leave Kinley's side until her BP began to rise.

One item that I would like to correct is that I have not properly recognized Kinley's night nurses in this blog. Please know that Kinley, Kathy and I love all of our nurses, both night and day. Unfortunately for Kathy and I we cannot spend as much time with our night nurses due to lack of sleep and extreme exhaustion, but know that they are the only reason Kathy and I can get any sleep. Overall this lack of time together is probably more of a benefit for the night nurses because they don't have to answer my constant questions and listen to my horrible jokes. (You should see some of the eye rolls I get from Kathy. Lucky for me, Kinley is too young to roll her eyes, but I know that day will be here too soon.)

Thursday, June 19th - Surgery is Done!!!

It is 11:30 am. Kathy and I are waiting in our PCU room, with our families, when there is a knock at the door.

It is Dr. S and Dr. M. The surgery is done and it went as well as can be expected. Luckily, Kinley's diaphragmatic hernia was small enough that Dr. S did not have to use a patch. This means that Dr. S was able to close the hole by suturing tissue to tissue. Dr. S had to make a separate incision, other than the main incision for the repair surgery, in order to push Kinley's spleen out the way. He informs us that Kinley has a good amount of left lung which we are overjoyed to hear, but size does not always correlate to function. We will have to wait and see how her left lung functions. A chest tube was put in to help drain any excess blood that may be pooling in her chest cavity. Since Kinley's body has always grown with some of her bowels in her chest, her abdomen was not quite large enough to contain everything once the bowels were moved down. To get around this situation Dr. S left the inner most layer of muscle open and closed the remainder of Kinley's incision above it. This means that Kinley will have a hernia in her abdomen wall and this will allow room for everything to fit. This abdominal hernia will need to be fixed later, but not for a few months or even a year. Dr. M informs us that Kinley's BP and oxygen saturation were great through the entire operation. She also lets us know that they plan to keep Kinley completely paralyzed for the next 24 hours. This is mainly to minimize her bleeding while she is still on ECMO and receiving heparin.

The nurses are getting Kinley presentable and we will soon be able to see our baby girl again.

Thrusday, June 19th - Surgery Has Begun

Late last night we found out that surgery will be moved from 8 am to 10 am. This was a little disappointing, but at least we are still scheduled for the same day.

We arrived very early this morning to allow us to spend as much time with Kinley as possible before surgery. Gayla and Connie gave us an update on everything we missed. To allow the surgeons as much room as possible they must take away Kinley's heater, but don't worry because Kinley has a different type of heater now. For surgery, Kinley will be laying on a heated air mattress that will help to keep her body temp up. Kinely also received the open lung tool treatment again and her oxygen saturation is looking much better than yesterday. Her BP is much better also, but that is mainly due to an increase in hydralazine doses. Seeing Kinley's BP down and oxygen saturation up immediately raised our spirits.

After shift change Jackie and Sarah begin to get Kinley prepared for surgery. Setting up all of her pumps and drips and everything else they might need during surgery.

Dr. S and the surgery team arrive at 10:00 am. Dr. S speaks with us briefly about the procedure before we have to leave the room. We kiss Kinley goodbye, wish her good luck and head to the PCU room that the NICU has set aside for us to use during Kinley's surgery. Both Kathy's family and my family are here for support. Now all we have to do is wait.

Here are some pics to enjoy while we all wait.

Kinley got a new bow so she can look pretty for surgery

The Melcher Family

Resting up.

Another look at my pretty new bow

Wednesday, June 18, 2008

Wednesday, June 18th - More ups and downs

Today has not been what Kevin and I thought it would be, to say the least. We left Kinley's bedside last night at midnight when her oxygen saturation was in the high 90's and her blood pressure was normal for her. That is pretty much how she was all day yesterday, so it was a good day. We were feeling pretty good about her going into surgery. Today has been nothing like yesterday. Kinley's blood pressure has been pretty high all day and her oxygen saturation has been in the 80's and low 90's. I guess it is that CDH roller coaster ride of ups and downs that we have heard over and over again. Phyllis and Aja, Kinley's nurses for today, have been great at trying to keep Kinley calm so that her blood pressure doesn't stay too high and her oxygen saturation doesn't stay too low. Kinley is not making their job very easy today.

We did get some good news today though. While Kinley was bumped from surgery today, she is back on the schedule for 8:00 am tomorrow morning. Hopefully since she is one of the first surgeries of the day she will not be bumped again. I know that we asked for extra thoughts and prayers for the surgery that was scheduled for today, but please keep her in your thoughts and prayers again for her surgery that is now scheduled for tomorrow morning.

Wednesday, June 18th - Surgery Postponed

Quick update: Surgery has been moved to tomorrow. The surgery team has some emergencies that they have to handle today, so Kinley got bumped. While we are obviously disappointed, this will give Kinley more time to prepare for surgery.

Tuesday, June 17, 2008

Tuesday, June 17 - Kinley's New Room

Around 6:30 pm Kinley began her journey from her bed station in the ECMO room to the surgery table in the NICU operating room. To move Kinley and all of her equipment from point A to point B it took 2 respiratory therapist (1 for the ventilator and 1 for the NO machine), 3 nurses and the ECMO Coordinator (2 nurses for Kinley, her bed and her pump/med stand and 1 nurse and 1 ECMO Coordinator for the ECMO machine). The move was slow and steady since Kinley is attached to each piece of machinery in one way or another. Once in the operating room, Kinley was picked up and moved to the surgery table where a new bed had been made up. Kinley got a little fussy when she was picked up, but settled down quickly in her new bed.

After shift change we came back to find Kinley hanging out with Angel and Gayla. During the shift change Kinley needed an extra dose of morphine and versed to help her stay calm.

Around 9:00 pm Kinley received an IPV treatment. Unlike her previous IPV treatments, she absolutely hated this one. She turned her entire body red and would have definitely deafened someone if she could have made noise. Lucky for us, and every baby in the NICU, her screams were silent due to her breathing tube. And luckily for Kinley, Gayla had already given her a dose of hydralazine (BP medication) before the IPV treatment began so her BP never got too high. She also received another round of morphine and versed to help her calm down.

Kinley is resting comfortably now with her oxygen saturation still in the high 90s, but she did require and extra dose of hydralazine around 10:40 pm to help keep her BP down. Kinley's urine output remains excellent and was 10 for the day shift today.

Kinley, Kathy and I really really really appreciate all of the comments, emails, thoughts and prayers from everyone. Please continue to keep Kinley in your thoughts and prayers, especially during the next few days as they will be some of her toughest yet. Keep fighting Kinley!!! We know you can do it!

Tuesday, June 17th - The Day Before Surgery

We arrive around 9:45 am and see that Brian and Dot are back with Kinley today. We also notice that Kinley's oxygen saturation is still between 95 and 100. Way to go baby girl! Dr. P decided not to do any of the pulmonary treatment options last night, so it turns out that Kinley actually had a quiet night and slept a lot. Maybe she is finally starting to get her day and nights straightened out. Lastly, we find out that Kinley's oxygen challenge score was 271. Pretty good for a 3 week old baby with one good lung that was entirely collapsed yesterday morning.

We met with Dr. M & Dr. W to talk about possible pulmonary treatments and the upcoming diaphragm repair surgery. For pulmonary treatments, we will do the open lung tool one more time and continue with IPV treatments every 6 hours. For surgery, neither doctor has seen a reason to cancel and, as of right now, Kinley is confirmed on the surgery schedule for tomorrow at 1:00 pm. Later today Kinley and all of her equipment (ECMO machine, ventilator and NO machine) will be rolled into the operating room that is next to Kinley's current room. The surgery will be done on ECMO because Kinley has not been able to show that she can support herself safely off of ECMO. Dr. M also mentioned that the ECMO tubes going into Kinley's neck have slid out a tiny bit and may need to replaced during surgery. Kinley has been on antibiotics, for her pneumonia, for 10 days, but we will continue them through her surgery to make sure her pneumonia does not return. The biggest risk of surgery on ECMO is loss of blood, both during and more importantly after surgery. This is due to the heparin (blood thinner) that Kinley must be have to be on ECMO. Therefore, the goal after surgery will be to get Kinley off of ECMO within 48 to 72 hours to decrease her risk of bleeding.

Kinley's first pulmonary treatment of today is an IPV treatment. Kinley handles it really well and does not even drop her sats during the treatment.

Early this afternoon Pablo, a surgeon, stops by Kinley's bedside to discuss surgery plans tomorrow and to get a consent form signed. We start off by talking about the how long the surgery will last. The length of time for a diaphragm repair surgery all depends on the size of the hole in the diaphragm. A diaphragm repair surgery with a small hole and where everything goes smoothly typically takes a couple of hours. Unfortunately for everyone, there is no way to know how big the hole is until they have Kinley in surgery. A small hole means that the surgeons will be able sew tissue to tissue to repair the hole. A larger hole will require the surgeons to sew a patch into her diaphragm. Pablo reminds us that the biggest issue with surgery on ECMO will be excess bleeding due to the heparin. Due to excessive internal bleeding the surgeons may have to put in a chest tube or an abdominal drain to remove any excess blood collecting in those areas. Pablo re-confirms that Kinley will need to come off of ECMO soon after surgery due to bleeding risks. Coming off of ECMO soon after surgery may be a very concerning issue. Even if Kinley is not ready to support herself, she will need to come off of ECMO at some point simply because she will never completely stop bleeding until the heparin is out of her system.

After our meeting with Pablo, the respiratory therapist arrives to do the open lung tool with Kinley. Kinley must be paralyzed for this treatment because it delivers higher pressure to her lungs and we don't her to fight the ventilator to breath.

A tentative schedule is set to move Kinley into the operating room at 5:00 pm, but it doesn't look like that will happen as the operating room is currently in use.

We will keep you posted after she is moved.

Monday, June 16th - Emotional Roller Coaster

We were told early, and often, that we were going to go through an "emotional roller coaster" of ups and downs with having a CDH (congenital diaphragmatic hernia) baby and her treatment. There have never been truer words spoken.

If you remember, we started today with a collapsed right lung, the lowest O2 saturation levels we had ever seen for Kinley and the bowels in her chest were full of air. Exactly the opposite of what we want, but hard work and new vent settings helped to remove the air from her bowels and start her lung back on the track of opening up.

This afternoon Kinley had a new treatment to try and open her lungs. It is called the "open lung tool." What it is is an adjustment of her ventilator for a brief amount of time. The rate of breaths remains the same, but the pressure is turned up pretty high. An x-ray is scheduled for 9:00 pm to see how her right lung looks after the open lung tool treatment. We are guessing that it will look good because her oxygen sats have gone up.

This roller coaster is making me sick. Kinley is bleeding internally from being extubated and intubated earlier this morning. We have been assured that this is nothing to be overly concerned about for right now, but it is hard not to be concerned when your baby is bleeding from some where that you can't see and she is on heparin. Diane has been able to suction a small amount of blood from Kinley's breathing tube and a fair amount is coming from her OG tube (the tube that goes from Kinley's mouth to her stomach). The blood coming from the OG tube is dark and appears to be old. That is a good sign that she does not have a major bleed that is constantly bleeding. Kinley did get a cut in her mouth when she was re-intubated this morning and we are guessing that she is swallowing the blood from her mouth and that is why it is coming up through her OG tube. After Diane finished her suctioning, Kinley's oxygen saturation went up to 100%. I don't know if Kinley has ever been that high before. Hold on to those roller coaster handles.

The 9:00 pm x-ray shows that the bottom half of Kinley's lung is open and clear, but the upper lobe is still congested or collapsed. Dr. P is here tonight and she is happy with Kinley's turn around from this morning. She is not sure which treatment we will move forward with to try and open that upper lobe, but she is confident that we should move forward with surgery (while on ECMO) on Wednesday afternoon. Possible future treatments would be IPV to loosen and move any mucus, open lung tool to try and open the upper lobe or another bronchoscopy to literally see why the upper lobe is not open. Kathy and I are a little concerned about the IPV treatment because last time it appeared to move mucus from the congested area into the open areas. This is how it is supposed to work, but we want to make sure as much of Kinley's lung as possible is open and clear for after surgery so she can have a speedy recovery. We are more concerned about another bronchoscopy because Kinley is already bleeding and we do not want to make it any worse by doing more work in her throat. Whichever path we go down we feel confident that Kinley's doctors are making the best decisions possible.

Once Kinley is asleep, Kathy and I head home around 10:30 pm for a little shut eye with Angel and Aimee to watch over her. Kinley oxygen saturation is still holding strong in the upper 90s. Let's hope they are still there when we return tomorrow.

Monday, June 16, 2008

Monday, June 16th - Things are looking a little better

Around 2:30 pm Dr. W came by to let us know that the head ultrasound Kinley had this morning came back normal. Also, the chest x-ray that was taken at 2:00 pm showed some improvement. The air that was in Kinley's bowels is much better now and her right lung is showing signs that it is beginning to open.

Monday, June 16th - Another Bad Monday

After an uneventful weekend Kathy and I were looking forward to seeing Dr. M again and hearing her thoughts on Kinley's status and future treatment plans. Overall, we were expecting another uneventful day of getting Kinley ready to come off of ECMO.

We arrived a little after 9:30 am and immediately know that today would not be uneventful. As we walked in Kinley's room we could see that her O2 saturation was the lowest that we had ever seen it. Dot gave us a quick update. A chest x-ray that was taken a little after 7:00 am showed that Kinley's entire right lung had collapsed because her breathing tube was out of place. Dr. M and Dr. W had already changed out Kinley's breathing tube. Changing breathing tubes can be dangerous with babies on ECMO because if a bleed is caused while placing the new tube it may not clot due to the heparin (blood thinner) that ECMO babies must be on. Dr. M has also made some adjustments to Kinley's ventilator to help re-open the lung. Another chest x-ray is scheduled for 2:00 pm. Another thing that happened, due to the breathing tube being out of place, was that the bowels in Kinley's chest have filled with air. This places more pressure on her heart and right lung. To try and remove the air in her bowels they will paralyze Kinley. This will stop anymore air from entering her bowels and will allow the nurses to try and suction the extra air out through Kinley's OG tube (a tube that goes from Kinley's mouth to her stomach). Hopefully with a new breathing tube, new ventilator setting, being paralyzed and suctioning the air from her bowels will allow her right lung to re-open.

Around 11:00 am Dr. W came by with an update on Kinley's treatment. We will continue her IPV treatments to try and get the mucus out of her lungs, but we will skip the next treatment due to everything that happened this morning. The doctors are also planning on moving forward with Kinley's diaphragm repair surgery. It is currently scheduled for Wednesday afternoon. We plan to sit down and talk with Dr. M and Dr. W later today and discuss the risks and benefits of moving forward with surgery at this time.

Sunday, June 15, 2008

Sunday, June 15th - Father's Day

First of all, Kinley would like to wish her daddy a very happy Father's Day. In addition to the hammock stand that she got her dad, Kinley also gave him a fairly uneventful day as a Father's Day gift. She is so thoughtful!!

Kevin and I arrived a little later than normal today, around 11:00 am. When we arrived Phyllis and Carla gave us the routine update from the night before. Apparently Kinley actually slept last night and really threw Carrie and Kathy (the night nurses) off. Up until now Kinley has had her days and nights mixed up, so when she actually slept during the night it was a little out of the ordinary for her.

This morning was also pretty uneventful. Kinley's oxygen challenge was 120, which was down a little from yesterday and her urine was 4.8, which was also a little down from yesterday, but still in the normal range. She did require a dose of morphine and versed right at the morning shift change, but nothing the rest of the day shift.

Rounds were at 2:00 pm today for Kinley and basically the plan is the same as yesterday. No changes to speak of at the moment. The real test will be tomorrow when she is re-evaluated for surgery and possibly coming off of ECMO. Hopefully Kinley got enough rest over the weekend and we can report a good evaluation tomorrow.

Since Kinley was telling us that she was ok by having an uneventful day, Kevin and I felt comfortable going out to dinner with his family to celebrate Father's Day. Once again, Kinley is so thoughtful of her daddy on Father's Day. What a sweetheart!!

After dinner and the shift change, Kevin and I returned to Kinley's baby station to find Connie and Angel looking after our daughter. Neither Connie or Angel have taken care of Kinley before, so they are in for a treat tonight. Angel let us know that Kinley did not really tolerate her last breathing treatment and they had to give her an extra dose of morphine and versed to help calm her down. It could have also been the fact that the breathing treatment happened to take place the same time as shift change. All that extra commotion at the same time as the breathing treatment could have been another reason Kinley did not tolerate the treatment as well as normal. After a little time Kinley calmed down and is resting comfortably now with her daddy looking over her.

Saturday, June 14th

As a Father's Day gift for Kevin, I will be writing the blog for this post and the next so that he can spend some quality time with his daughter. Fortunately for me, Saturday was pretty quiet and this will most likely be a short post.

We arrived around 9:00 am to find Tiffani and Carla taking care of Kinley. They gave us a quick update from last night, and by quick I mean they told us that not much at all happened. Kinley required one round of extra morphine and versed, but other than that she was pretty quiet and stable. We always like those updates.

This morning we find that Kinley's BP has improved since they changed her medication to be given every 6 hours and not just after her BP gets too high. In fact it improved so much that they acutally had to skip one of her doses. Kinley's oxygen challenge this morning was 156, so it is moving in the right direction. Other than that, we are just holding the course of IPV treatments and pulmozyme to help get the mucus out of Kinley's lung.

Around 6:50 pm Kevin and I decided that Kinley has had a pretty good day and we should be ok going home (to our own house and not the Hyatt) for a couple of days. Kinley didn't even need any extra doses of morphine or versed at all while we were here today. Once we get home and see our other baby (our 3 year old Boxer, Kobi) we are going to celebrate Father's Day with Grandpa and Grandma Seep (my partents). While it is very nice to stay at the Hyatt so close to Kinley, we are looking forward to going home for a couple of days.

Carrie and Kathy should be back again after shift change and will take great care of Kinley overnight.