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

Saturday, July 12, 2008

Saturday, July 12th - Slow and Steady Progress

As you can see from today's title it has been a pretty quiet day for Miss Kinley Seep Melcher. There have been some changes to her care though. None of them earth shattering, but all are positive moves forward on her long road to going home.

Based on Kinley's residuals (amount of food remaining in her stomach after a feeding) from last night they have decided to increase her continual feeds from 3 ccs per hour to 4 ccs per hour. Kinley began her 4 ccs per hour feedings at noon and her first residual check at 5:00 pm came back with only 2 ccs remaining in her belly. Way to go baby girl! Continuing the trend from yesterday, and the day before, they have lowered the dosage on both her methadone and her ativan. She will continue to receive the same erythromycin doses (to help with stomach and intestine motility) every 8 hours and her oxygen settings and support will be left alone today. Kinley is still on 21% oxygen (room air) at a flow of 2 liters per minute.

Friday, July 11, 2008

Friday, July 11th

This morning Kathy had her 6 week follow up appointment with Dr. M, her OBGYN. Everything looks good and Kathy will not need to go back until September. Hopefully at her September visit Kinley will get to go along because Dr. M and his nurse would really like to meet Kinley in person.

When we arrive at Children's Mercy we found Delores (nurse practitioner) visiting Kinley and she got us up to speed on the changes to Kinley's treatment. Before we arrived they had turned Kinley's oxygen flow down to 1 liter per minute, but Kinley was keeping her blood oxygen saturation in the mid to high 80s so they decided to move her back up to 2 liters of flow per minute. The dosage of erythromycin has been increased to help with the motility in Kinley's stomach and intestines. Also to help with Kinley's processing of food, the dosage on both her methadone and ativan have been decreased again. This decrease should allow Kinley to spend more time awake and that will help process her food faster. With these changes, that will hopefully allow Kinley to eat more, they have increased her continual feedings from 2 ccs per hour to 3 ccs per hour. And finally, Kinley has not pooped since yesterday so she has been given another glycerin suppository to help everything move through her a bit easier. What is that? I think I smell something already!

The biggest news of the morning is that Kinley will be making some new friends. Both Occupational Therapy and Physical Therapy have been contacted to come and evaluate Kinley. Occupational therapy will work on Kinley's ADLs (Activities of Daily Living), this includes oral stimulation to help her get ready for breast and bottle feeding. Physical therapy is going to work on Kinley's muscle tone and head control. Occupational therapy has already stopped by, but Kinley was sleeping so she will probably have to wait until Monday to meet her new friends.

Thursday, July 10, 2008

Thursday, July 10th - Yea! We Have Poop!

Those glycerin suppositories really work. Kinley's first diaper after the evening shift change was full of poopy. And guess who the lucky one was to change that diaper. That right, it was me. Yea for baby poo!!!

After I got Kinley all cleaned up and into a new diaper she jumped right into Kathy's arms for some "mommy time." Below are a couple pics of my two ladies cuddling.

Thursday, July 10th - Less Drugs = Better Eating

Last night Kinley must have snuck in a coffee break when the nurses weren't watching because we were told that she was awake from 7:00 pm to 1:00 am. This is the longest period of time that we have ever seen or heard of Kinley being awake. We were also told that Kinley got a bath last night. I bet that is what finally put her to sleep.

During rounds today Dr. C decided to keep Kinley's continual feeds at 2 ccs per hour. Kinley's residuals from yesterday evening, last night and today have ranged from 1 to 5 ccs, all within the range to continue her feedings. The oxygen coming through Kinley's nasal cannula is still at 21% (room air), but Dr. C wants to back down the flow from 3 liters per minute to 2 liters per minute. Also, both Kinley's ativan and methadone doses will lowered slightly. The frequency of both doses will remain the same, every 6 hours, but the dosage amounts will be changed. The ativan dose will be moved from 0.07 mg per kilo to 0.06 mg per kilo and her methadone dose will be lowered from 0.2 mg per kilo to 0.18 mg per kilo. The idea and goal behind decreasing both the ativan and methadone doses is that Kinley will spend more time awake and the more time she spends awake the better her stomach and intestines will process.

Kinley has not had a poopy diaper since July 7th so Delores (nurse practitioner) has decided to give Kinley a glycerin suppository. Glycerin will not increase the motility in Kinley's gut and it is not a laxative, but it will help to move things through her intestinal tract.

Wednesday, July 9, 2008

Wednesday, July 9th - Slowing the Rate of Changes

Quick update from last night - Kinley had 14 ccs of residual after her first continual feed yesterday. Katie put it all back in Kinley's stomach and was going to check it again after one hour. After that one hour Kinley still had 12 ccs of residual. Katie notified Delores (nurse practitioner) and the decision was made to stop Kinley's feedings for the night and re-access her tomorrow morning.

During rounds today Dr. C decided that there should only be one change made to Kinley's care each day. This will allow Dr. C to more easily track how each change affects Kinley and hopefully determine what might have set off Kinley's "episode" that occurred two nights ago. Three items that will remain the same today are Kinley's oxygen flow rate, at 3 liters per minute, and also her methadone and ativan doses. They will re-start Kinley's continual feedings, but at a slower rate than yesterday. Today Kinley will receive 2 ccs per hour. Dr. C has also ordered that Kinley be given doses of the antibiotic erythromycin. Don't worry, Kinley is not sick. The main side effect of erythromycin is increased motility in the stomach and intestines. The hope is that this side effect will help Kinley begin to process her feedings a bit more quickly. Kinley will receive one dose every 8 hours.

Katie checked the residual in Kinley's stomach after 2 hours of feeding and finds that Kinley has not processed any of her milk. She informs Amber (nurse practitioner) about the residual and Amber decides to have the residual put back in Kinley's stomach and continue the feedings. FYI - all of this occurred before Kinley had received her first dose of erythromycin.

As of 2:00 pm, Kinley is back to "room air!" Room air is 21% oxygen. Kinley had to have her oxygen turned up to 70% the night of her "episode" and she has slowly been working it back down. She started today at 35% oxygen through her nasal cannula.

We have not been tracking Kinley's weight gain since she was born, mainly because Kinley had bigger obstacles to overcome and the fact that she couldn't eat anything, but Katie informs us that Kinley is now up to 9 pounds 4 ounces. I think that's pretty good for someone who was born 44 days ago and only started eating 3 days ago. (I am trying to make that sound really dramatic by not mentioning that Kinley has been receiving IV nutrition the whole time. Shhh, don't tell anyone.)

Tuesday, July 8, 2008

Tuesday, July 8th - Searching for Answers

We arrive early today so we could see Kinley right after the morning shift change. George (Georgianna - Kinley's night nurse) was still here giving her update to Katie (Kinley's day nurse). Kinley's "episode" occured last night between 2:00 am and 2:30 am, soon after George had given Kinley her dose of methadone. Kinley was very agitated and her heart rate and blood oxygen saturation dropped very rapidly. They had to "bag" Kinley and give her another treatment of vaporized epinephrine to get her oxygen saturation back up. Even after all of that they were considered re-intubating her and putting her back on a ventilator, but thankfully it didn't have to come to that. After about 30 to 45 minutes Kinley was back to her normal heart rate and blood oxygen saturation, but her nasal cannula oxygen had to be turned up to 70%. Kinley's methadone doses and feedings have been placed on hold until they can get a better idea of what happened. She has been pretty stable this morning, but a majority of that could be from how exhausted she is from her "episode."

Soon after we arrived Delores (Kinley's nurse practitioner) stopped by to talk with us about Kinley and what might have caused her "episode" last night. She has three different ideas.

1) Sepsis - an infection in Kinley's blood.
2) Airway Constriction - babies that have been intubated for a long time tend to have "floppy" airways due to the main airway being held open by tubes and those airways can contract and constrict if they become too irritated, cutting off air flow entirely.
3) Drug Interaction/Withdrawals - a possible negative reaction to her methadone dose or a severe withdrawal reaction to being taken off of versed.

Delores also talked with us about Kinley's current status. She has seen Kinley's morning chest x-ray and she lets us know that it looks really good. Kinley's blood gases are good now also. They are going to re-start the methadone doses every six hours because Kinley had been on methadone for days before this and had not had a negative reaction. Plus, they do not want Kinley to start having withdrawals from being off of methadone because if she were to get too agitated she might have another "episode." Kinley's ativan doses will continue to be given every 6 hours, but the dosage will be increased slightly in case her "episode" was from versed (sedative) withdrawals. Another vaporized epinephrine treatment has been ordered. The vaporized epinephrine will help with any inflammation in Kinley's upper airways. Blood will be drawn to check for sepsis and, finally, an ENT (ear, nose & throat) doctor has been asked to come up and examine Kinley. The ENT doctor will run a scope up Kinley's nose and down her throat to get a better idea if her "episode" was caused by airway constriction.

When Katie went to draw blood for Kinley's labs she found that the PICC line would no longer draw. This is not a huge concern because the PICC line is still functional for giving fluids, it simply can't draw blood anymore. This means that Kinley will have to go back to being stuck in the foot each time they need blood. When Katie poked Kinley's foot Kinley didn't even flinch. In fact, she didn't cry throughout the entire blood drawing process. This worried me that something was wrong, but Katie reassured me that Kinley is simply exhausted from her "episode" last night. I had not thought about how much energy someone, especially a baby, would use up if their body had to fight to keep up its heart rate and oxygen levels, but I am sure that it would be almost all that that person had.

Today is our second day with Dr. C as Kinley's attending doctor and this time we are here for rounds. Delores begins rounds by updating Dr. C on all of Kinley's general information, like current meds and dosage, urine output, feeding status etc. During Delores' update the ENT doctor, Dr. W, arrives with her team to examine Kinley. Dr. W is the same ENT doctor who did Kinley's bronchoscopy while she was on ECMO. The entire scope procedure does not take long and Kinley handled it pretty well for having scope up her nose and down her throat. Dr. W says that Kinley's main airway looks really good and it does not show any signs that it contracted last night. Dr. W's scope cannot go down this far, but she is guessing that the constriction happened down in Kinley's lungs. After Dr. W and her team have left we continue rounds. Dr. C agrees with all of the changes that were made earlier in the day, but she would like to make one more. Dr. C puts in orders to re-start Kinley's feedings, but this time they will be continual feedings. Continual feedings push milk consistently (3.5 ccs per hour) into Kinley's stomach, through her NG tube, over a 4 hour period. Kinley's feedings before put 5 ccs directly into her stomach over a 5 to 10 minute period and she was fed every 3 hours. The continual feedings, while more food, should allow Kinley's stomach to remain less full.

Kathy, the surgery nurse practitioner, returned today to examine and remove the remainder of the sutures left over from Kinley's diaphragm repair surgery. Kinley handled all of this amazingly well considering she was wide awake for the whole thing. She never cried, but that was probably because we made sure that her binky/pacifier was always in her mouth. Both Katie and Kathy feel that Kinley's surgical site is healing very well.

The hole above the surgery site is where Kinley's chest tube went in and the line about that is where the surgeon had to make an extra incision so he could push her spleen out of the way.

Kinley's first round of continual feeding is over. Katie checks the residual to see how much of the 14 ccs (3.5 ccs per hour for 4 hours) of milk is still in Kinley's stomach. Uh oh. The residual that Katie pulled back was 14 ccs. Once again, it is not all milk, but a combination of milk and saliva. Katie called Delores with the results and Delores says to put all 14 ccs back in Kinley's stomach and check it again after one hour.

The final results from Kinley's blood labs are back. Kinley does not have sepsis. This is great news because it means that Kinley does not have an infection in her blood. The only problem is that we do not have a definite answer on what caused Kinley's "episode" last night. The best guess that we have so far is that it was caused by airway constrictions down in Kinley's lungs. If this is correct we will simply need to try and keep Kinley from getting too agitated and that will give her time to grow out of the risk factor of closing those airways again.

For some fun news, Kinley got to put on her first full outfit today. We could not get her left arm in due to all of her IVs, but other than that she is fully dressed.

Tuesday, July 8th - A Rough Night

I (Kathy) received a phone call from Dr. J at Children's Mercy around 3:00 am. Kinley had an "episode" around 2:00 am. I was told by Dr. J that Kinley's oxygen had dropped really low, really fast, after she got her methadone dose and that she had to be "bagged" in order for her oxygen to come back up. Kinley also received another dose of the inhaled epinephrine during the ordeal to see if that would help her breath at all. Dr. J assured me that she was fairly stable at the time she called me. Kinley's oxygen did have to be turned up to 70% however. It was at 21% before the episode, so that was a disappointing setback. This whole ordeal was a big blow to Kevin and I after she had made such great progress during the day.

Monday, July 7, 2008

Monday, July 7th - Big Changes!!!

When I arrived today I found out that Kinley has made a decision. (And A LOT of changes.) Kinley has decided that she does not like spending time away from her mommy and she is going to pick up the pace on going home. If you remember, today is Kathy's first full day back at work since Kinley was born on May 25th.

I cannot say that I am a huge fan of listing Kinley's changes, but she wants to make sure that everyone can see how many she did today. Please remember that all of the changes that Kinley made were done with the full approval of Dr. C, Kinley's new attending doctor. Also, most of these changes were actually done by Katie (Kinley's day nurse) because Kinley is trying to rest.

1) No more versed (sedative) drip. Kinley wanted to go cold turkey, but Dr. C convinced her to replace the versed with ativan to help control her withdrawals. (Thank you Dr. C. Kinley can get so cranky when she is "craving.") Kinley's versed drip will be stopped at 6:00 pm and her ativan doses will be given every 6 hours.

2) No more IPPB treatments. Kinley hated her IPPB treatments and they were not the most enjoyable thing to watch either, mainly because Kinley got so upset during them. IPPB does do a lot of good though. It is a pulmonary treatment used to help break up and move the secretions in her lungs. They did this by placing a gas mask (which is providing 100% oxygen) over her face and then force her to take deeper breaths than she would on her own. The way they make her take a deep breath is that the gas mask over her face was connected to a bag that they would squeeze, like the ones you see in medical shows where the doctor or nurse is doing the breathing for the patient. They will do a chest x-ray in the morning to make sure her lungs are staying open.

3) No more scheduled blood gas tests. Blood gas test will still be done, but only when Dr. C orders one. They can now draw blood through her new PICC line, but Kinley did have to get poked a few times to draw blood and that was enough for her to try and put a stop to blood gas tests entirely.

4) Lowering the flow on my oxygen support. Kinley is tired of having a ton of air blown up her nose. The oxygen flow through her nasal cannula has been at 4 liters per minute, but it will now be lowered to 3 liters per minute. Kinley has been and still is breathing "room air" (21% oxygen) and the last thing to wean her off of will be her flow support.

5) No more tubes in my mouth. Kinley's OG (mouth to stomach) tube has been pulled and a NG (nose to mouth) has replaced it. This is the first time that Kinley has not a tube in her mouth. Until Kinley learns how to eat the NG tube will be used to feed Kinley, putting the food directly into her stomach. And once she does eat for herself, it will be used to give her any feedings that she does not finish herself.

6) Let the feedings begin. Kinley's first feeding ever was today at 11:00 am. It was only 5 ccs, but we all have to start somewhere. Kinley's feedings will continue every 3 hours, but before any feeding they will need to check the residual. Checking the residual means that they will suck out the contents of Kinley's stomach to see how much of her previous feeding is still in her stomach. If the residual is too great they may skip some feedings in order for her stomach to get caught up processing everything. The residual before Kinley's 2nd feeding at 2:00 pm was 4 ccs, but it was not entirely milk. It was a mixture of both milk and saliva/mucus. Katie notified Amber (the nurse practitioner) about the residual from Kinley's 1st feeding and Amber gave the approval to move forward with the 2nd feeding. So Katie put the 4 ccs of residual back in Kinley's stomach, through the NG tube, and then proceeded to give Kinley her 2nd feeding of 5 ccs, once again through the NG tube. Before Kinley's 3rd feeding today she had 6 ccs of residual, but it was mainly saliva and mucus. So Amber approved her 3rd feeding of 5 ccs at 5:00 pm.

Overall, a very productive day with many steps in the right direction of going home. We know that going home won't be very soon, but at least we know that Kinley is moving down the right path.

Sunday, July 6, 2008

Sunday, July 6th - A Big Girl Bed

When we arrive we find something new at Kinley's bed station. A CRIB! Kinley has graduated from her baby bed with a heater to a real crib. Congratulation Baby Girl! They just grow up so quickly. During the night George (Georgianna - Kinley's night nurse) ordered Kinley a crib and got her all moved in. Kinley is very happy with her new place. I think she was starting to feel cramped in the old one.

We arrived early this morning, right after the morning shift change, to spend as much time with Kinley as possible because Kathy is returning to work tomorrow. Kathy hates that she will not be able to spend as much time with Kinley while she is in the hospital, but this will allow her to take more time off when Kinley is able to come home.

During rounds today we found that Kinley was supposed to be weaned on her versed (sedative) drip yesterday, but the order did not get run (or processed) until early this morning. Children's Mercy started converting to a new computer system on June 25th and everyone is still learning all of the ins and outs. Since Kinley's versed drip was just weaned this morning, nothing will be done to it today. The biggest change to Kinley's care is that Dr. K has decided to stop the suction on her OG tube. The OG tube is the one running from Kinley's mouth to her stomach and ever since Kinley has been at Children's Mercy it has been sucking out the contents of her stomach. Now that Kinley's stomach contents are clear (this means that things are passing through her stomach and not simply sitting there) it means that she should be close to being ready to eat. The only issue now with her stomach contents is the amount. To see if Kinley is ready to eat, Dr. K will stop the suction on her OG and see if she can process everything (excessive saliva) that enters her stomach. If she can process everything, without throwing up more than normal, they will pull out her OG tube and begin to think about feedings. When Kinley does begin to eat they will place another tube that runs to her stomach. This will allow them to drip milk directly into her stomach since she will most likely have problems with swallowing. I know that was a lot of news, but at least it means that Kinley is moving in the right direction. To finish rounds, Dr. K informs us that today is his last day with Kinley. His two week rotation is at an end and tomorrow Kinley's new attending doctor will be Dr. C.

Most of Kinley's day was spent being held by either her mommy or her daddy. So needless to say, Kinley has had a very good day. She did throw up a couple of times, but Liz (Kinley's day nurse) assures us that they are small amounts compared to what Dr. K and Dr. C will be looking for in making a decision about removing her OG tube. This does not mean Kinley's OG will definitely be removed tomorrow, but we will keep our fingers crossed.