Caden’s Page

If you have been following me on Facebook or Twitter then you know that Caden has been hospitalized since Friday.  He has never completely kicked the pneumonia from his last hospitalization in August that was initially caused by H1N1 (Swine Flu). Caden’s condition is improving and I expect he may get off oxygen sometime tomorrow.  God willing and the creek don’t rise Caden should not have to stay past Tuesday.

I know you are probably wondering what is up with the title of this post.  Well Sherry was taking her turn with Caden today while I took our birthday boy out for some fun.  Riley turned seven today. Wow! Seven!

…Anyway a nurse showed up to Caden’s room with a new oral (g-tube) medication that no one had ordered. That’s right, not a single mention on Caden’s chart about this drug.  I looked at the chart myself.  The drug was a generic of Zantac called Ranitidine. The dose was even more odd so I am hoping this is just some kind of electronic mix up.  This particular medicine is delivered in syrup form at 15mg/ml.  The dose brought into Caden’s room with his name, patient id, and DOB was only .33 ml which means it was only 5mg of the drug in total.  After a look on RxList.com I found that the lowest recommended dose is 2-4mg/kg.  That is an amount of medicine to child weight ratio.  Caden weighs 21kg(Approx 46 lbs) so he would need a dose of somewhere between 2.6 ml – 5.2 ml of the syrup based on 2-4mg/kg.  To reverse this calculation for the meds that showed up…the .33ml would have been the correct dose for a baby between 1.25 and 2.5kg.  [are you following all the math?] Here’s the bottom line. The dose of Zantac that the nurse brought into Caden’s room tonight would be the correct dose for a 2.75 – 5.5lbs baby.  This ward of the MUSC children’s hospital doesn’t even take babies that small so this dose was most likely not just labeled for the wrong kid.

So the moral of this story is that we have once again validated the absolute necessity for parents to stay with their children at all times while they are hospitalized. This medication would have been harmless and would have caused no problems for Caden. But what if the meds had been something more powerful and had also been written for a kid four times his size.  The nurse got the meds from the pharmacy and the label had all the numbers that matched Caden’s ID bracelet. Scary stuff.

We have already had somewhat of a doctor whipper snapper type run in with a resident caring for Caden.  They have been running rabbit trails and can’t really give us a good reason why. It’s like they don’t trust that we are seeing all the specialist that Caden needs to see even though they can look at Caden’s appointment schedule in the computer and see that we have clinic visits scheduled with everyone they have asked about.  I may just have to rattle off the list of clinics that Caden has seen regularly: Cardiology, Endocrinology, ENT(x3), Craniofacial, Orthopedics, Immunology, Dentist, Speech (x2), OT, PT, and EI.  He has previously seen Genetics, GI, Storm Eye, to name a few. I am sure I missed a few as Caden has seen some of these clinics in multiple locations for second opinions.  We end to CHoP (Children’s Hospital of Philadelphia) for Orthopedics (scoliosis), ENT, and Genetics. He has also seen the Genetics clinic in Greenwood, SC.  I think we have been doing a pretty good job of getting Caden in front of the right specialist as needed.

[End Soapbox]

I thank you all for praying for a little Caden.  Please also keep Riley and Josiah in your prayers.  This is the second birthday party in a row in our family that has been interrupted by a hospitalization.  Caden and I will not get to attend Riley’s party at the park tomorrow for lunch.  Riley was very disappointed to hear this news today.  He will have plenty of his homeschool friends there so I am sure he will have fun anyway.

In my last post I talked about the ER visit that we did due to fever and noise in Caden’s left lung.  That visit ultimately led to a follow up with a pulmonologist last Thursday October 8th.  The pediatrician was concerned with this lingering fluid on Caden’s lung that appears to have never cleared up since the hospitalization for pneumonia caused by H1N1 flu back in August. The pulmonologist agreed that the fluid was lingering and decided to treat Caden with a drug called Pulmozyme.  The doctor warned us that the drug was normally used for cystic fibrosis patients and would likely need prior authorization with insurance. I did not think much about having to jump through hoops to get a medication approved that was bring prescribed outside the normal use. We went through this with synagis shots for RSV prevention a couple of years ago because Caden did not fit exactly in the criteria that would qualify him for the shots.

This time things have become a little more complicated.  We were told on Monday that the Pulmozyme for Caden had been denied.  We were encouraged to appeal the denial for the authorization and I immediately wrote a letter to CAREMARK (the Blue Cross Blue Shield pharmacy arm) and faxed it in within the hour.  Since we had not heard anything back today…and CVS was still getting a denial when trying to run the prescription, I called CAREMARK this afternoon.  The man who answered was very nice and said that he could not verify that my faxed letter was received for another couple of days.  He said it takes 3-5 days for an appeal letter to post in the system.He suggested that I simply pay for the medicine out of pocket and work on the reimbursement later if approved.  I told him that the thought had crossed my mind but I did not have $1500 on hand for this medicine. I told him that if I and my employer stopped paying $1,100 per month for health insurance premiums then I might be able to afford to buy the medicine and since I was paying these premiums I would like to actually be able to get a benefit approved when a doctor determined a medication was needed to treat a serious medical condition. I asked if there was a supervisor I could talk to and he said that I had done all I could do and suggested that I call back on Thursday to see if the letter made it though.

Caden being the complex little guy that he is happens to have his own personal case manager with BCBS. She is the one who told us to appeal the denial on Monday.  After my talk with CAREMARK I called her today and she poked around a little. What she found is that my letter had made it though and that CAREMARK had sent the medical records and my appeal letter out to a medical consultant for review.  She said that she was told that this review of our appeal could take up to 30 days.  She said the only alternatives we have to buying the medicine out of pocket or simply waiting on the review are (1) to get the doctor to admit Caden to the hospital or (2) to get the doctor to administer this medication in the doctor’s office or outpatient clinic.  For some weird reason the insurance will pay without question if the same doctor who prescribed this medication gives it during a hospitalization.  A medication given by the same doctor while a patient is hospitalized does not get the same level of scrutiny with the insurance company as when the medication is prescribed for home application.  We have not had a conversation with the doctor yet to see if she wants Caden to have the medication bad enough to admit him in order to administer the drug.

In the meantime we are staying in the Marriott Renaissance in Asheville, NC for a couple of night thanks to my abundance of hotel points from my work travel in recent years.  We will be apple pick’n and a look’n at the leaves. Our Big Boy Riley will be seven years old on Sunday and this trip is a birthday present.  Tomorrow we are going to try to find the spot shown below on the Blue Ridge parkway again.  This picture was taken 6 years ago this month.

The past 24 hours have been quite a ride for Caden.  He had a rough night last night.  He ran a fever of about 103.5 and required an above normal amount of suctioning.  Caden has had an increasing amount of greenish secretions this week and the full fever (above 101.5) justified Sherry taking Caden in for a visit with the pediatrician today.  The pediatrician listened to Caden’s lungs to see if there were any signs of pneumonia.  She also had the nurse check Caden’s oxygen saturation levels (SATS).  The pediatrician did hear something in his left lung that she thought justified a chest xray.  The O2 SATS also were 93-94% which is low even for Caden the recipient of numerous open heart surgeries.  Sherry sent me a text message giving me the news.  I left work to meet her at the MUSC emergency department.

By the time I arrived they had already processed Caden in and moved him to an ER bed.  The doctors came in to listen to Caden’s lungs, take his temp, etc, etc. They said they had talked to Caden’s pediatrician and based on what they saw they agreed that he needed a chest xray because they heard the same noise int he left lung.  Caden still had SATs in the low 90s.   We asked that they run a flu test just to humor us.  I told them that I knew folks were not supposed to get flu twice in a season, but they are also not supposed to get RSV twice in a season and Caden has already broken that rule.  The flu test came back negative. It was sent off for a second verification since false negatives on a flu test are supposedly not uncommon.

The chest xray results came back and the ER doctors said, “this chest xray looks better than the one Caden had at the end of August.”  They said that if they did not have a chest xray to compare to then they would consider this xray to be pneumonia and would treat him for it.  They leaned more toward an assumption that the “better looking” chest xray today could be explained by saying that Caden is still recovering from the pneumonia from mid August.  Their follow on to this assumption was to turn their focus to Caden’s secretions.  They said they needed to get a CT scan of Caden’s sinuses.  My initial conversation with the resident delivering this news of the CT scan centered around us trying to avoid getting an IV until there was a diagnosis that required treatment via an IV.  Sherry had stepped out with Riley to get a sandwich and she came in immediately after the resident departed. Within a minute later the nurse came in to announce that they were prepping for an IV.  WHAT? I just finished a conversation with the resident on avoiding an IV.  Turns out the resident did not know the CT would need contrast and come to ind out they actually wanted to get some blood tests anyway. Sherry raised some great questions that led to having the doctor come back and explain in more detail how their treatment would change based on the results of a CT scan of Caden’s sinuses.  They convinced us to go forward with the IV to prep for a CT scan.  Ultimately after two nurses attempts in each of Caden’s hands the IV would not thread.  I had given them our standard “Caden is a VERY difficult stick” speech with no real response.  I am not sure I have met enough nurses in five years to count on one hand who are humble enough to say, “I am not the most experienced with kids who are tough to stick.”  Most nurses get a little offended when you suggest that there might be a difference in the level of experience and skill involved in placing an IV in your child.  While they did not get the IV in they were able to make Caden bleed enough to draw some labs that ended up clotting before the tests could be run.

After this episode with the IV we had a little heart to heart with the 1st attempt nurse and a resident.  I told the resident that I can get past the screaming and crying and can restrain Caden all night to assist in getting an IV if I know that a procedure is really needed.  But the more I thought about it the more convinced I was that Caden did not need a CT scan.  Sherry had drawn attention to the fact that we have been dealing with sinus infections since Caden’s birth and all of a sudden a CT scan of his sinuses is needed to determine a treatment.  I piggy backed off of that by saying that if the pediatrician had not heard some noise in Caden’s lungs and seen his SATs low, we would not have even been sent to the ER.  We would have been given an antibiotic to treat sinus infections and Caden would be home playing by now.  They were pretty amendment about the sinus CT and even had the “educator” nurse come in to discuss the next attempt for an IV. I told her that we needed to wait a few minutes to see how the doctors responded to our questions concerning the real need for the CT in the first place.  After all, Caden had sounds in his lungs, his chest xray did show some some signs of concern on the side of the noise, and his SATs were below normal.  All of these things pointed back to the lungs as a target treatment area and as Sherry reminded them (based on our own knowledge of antibiotics) the antibiotics used to treat pneumonia and sinus infections are very often the same so why not prescribe an antibiotic with a broad enough spectrum to cover both and let us go home.

After a little doctor pow-wow and a call to Caden pediatrician’s office they agreed to forgo the CT scan and the IV.  They came back and had a discussion with us on the best course of antibiotics to choose based on our experinces and told us that if we were comfortable going home then they felt like that would be okay.  We all agreed that Rochepine injections would be a good boost for the night until we could start an oral (g-tube) delivered antibiotic.

Scoliosis

While I was out getting be a sandwich I stopped by to retrieve a copy of the doctor notes from Caden’s recent trip to the Orthopridic surgeon.  They told us that the scoliosis had not really changed since the last six-month check up even though Caden had grown significantly.  Normally they see the curve increase with growth spurts, but that was not the case for Caden.  The composite curve was recorded on the notes at 63 degrees during this recent visit which is a very small increase of less than 10 degrees over the past 18 months as compared to the 20 degree increase in jsut five months between late 2007 and early 2008.  The orthopedic surgeon did not even try to expain it and I did not need an explaination becasue I know that God is way bigger than this diagnosis.

BONUS

Many of you know that I am the technical adminsitrator behind the scenes of the GroingKdis.org web site.  I have been working with Gary and Anne Marie Ezzo over the past coupel of weeks to post a new page on GrowingKids.org dedicated to delivering a preview to the new Toddlerhood Trainsitions video series.  Sherry and I have the priviledge of leading one of the very first classes in the world using this new material on Monday nights are Seacoast Summerville.  Your bonus is to get a peek at this series before anyone else even knows the clips are available on the Internet.  Enjoy the Growing Families International Toddlerhood Trainsitions Series Preview!

This will be a status update and it will include the story behind events that happened earlier in the week that I mentioned on Facebook concerning Caden’s treatment.

First the status.  Caden was put on room air for most of the day today.  He is still dipping into the low 90s and high 80s on his oxygen saturation levels at the end of a tube feed.  We will see if we can get through the night without oxygen and may…JUST MAYBE we will get to go home tomorrow.

We did have some issues earlier in the week that I mentioned on Facebook.  I will give the scoop here as promised.  We found out throughout the week that there were some communication problems between doctors, residents, and nurses.  Most could have been easily caught and corrected if we had been fully informed about the care plan.  Tuesday evening we were basically offered a chance to go home but we just weren’t comfortable with Caden’s numbers on the pulsoximeter. The over night and early morning of Wednesday confirmed that our parental gut instincts were working well.  Caden had taken a turn for the worse that would have ended up with a trip back to the hospital due to worsening pneumonia.  The doctors said he sounded worse and the chest xray confirmed.  The plan as a result was to start a new IV and then begin running a course of Vancomycin in addition to the Rocephin.   I stayed around until the IV was in place because Sherry and needles don’t mix very well.  Later Wednesday evening I was home trying to get a nap when Sherry called the house pretty upset.  First Sherry said that the IV meds had not been set up properly and the saline mixture (needed for dilution) had actually pumped into the bag of medicine rather than into Caden’s IV.  The IV was no longer working unless it was held at just the right angle to his skin.  On top of that the on duty doctor had come into tell Sherry that some needed labs (blood draw) had not been completed earlier and that this had to be done before the Vancomycin was given to get accurate results.  The results would be skewed during the culture if the Vancomycin was given first.  She had not been able to determine why the order to start the meds was given before the order for the culture, but the good news was that the failed IV (caused bya  nurse’s mistake) had given an opportunity to get the blood culture after all.  That meant that Sherry would have to see a needle after all.  She put on her big girl pants and they gave it a try…and they were unsuccessfully at getting the needed blood.  I finally arrived to find Sherry holding Caden down while a couple of nurses tried to get blood from a vein in the side of Caden’s right foot.  They were fishing pretty hard and not getting any blood so I called them off.  As you might imagine Sherry was pretty upset and frustrated so she gathered her stuff and headed home.  It was nearing 11PM anyway so I took over. The nurses gave me a few minutes to talk to the doctor and gather my thoughts before asking if I wanted them to give it another try at gathering a blood sample.  I agreed and showed them a good vein in Caden’s left foot where IVs had been run successfully on numerous occasions in the past.  They went for it and got the blood they needed.  Unfortunately one of the tubes clotted and they were not able to get a blood gas.  The doctor and I agreed that he looked pretty good and that a blood gas could wait until later if his vitals got worse. The IV meds were almost immediately started after the blood draw.  This was about 11 hours after the chest xray led to the decision to go this direction.

We also learned that at the beginning of the week (Monday morning) while Caden still had his original IV he was given some Vancomycin without our knowledge.  We knew he was give Rocephin.  The Vancomycin was abandoned when the IV failed and they just went to Rocephin injections.  It is now believed that the Vancomycin is what Caden needed to be on all along, but was put on and taken off without our knowledge.  At another point the round-the-clock Tylenol and Motrin was stopped without notifying us and Caden’s temperature almost immediately started back up.  The original reason for these meds was to keep the fever down so that Caden’s breathing would not be affected by fever.  He is characterized by rapid shallow breathing when he has a fever so we were trying to prevent any extra work on his lungs with the round-the-clock meds.  One of the doctors along the way got the bright idea that because he was not having fevers he no longer needed these meds.  The doctor simply wrote an order to stop the meds rather than asking why the meds were originally given or even mentioning that she thought the meds should be stopped due to the lack of fevers.  I realized about five hours after the last dose of Tylenol that I had not seen any lately and asked if it had been overlooked.  The nurse said that the order was written in the middle of the night to stop the meds.  I asked the doctors about it during morning rounds and one resident tried to throw the nurse under the bus by saying it was the nurse who stopped the meds.  I was quick to inform this whipper snapper resident that I knew that the nurse could not make these decisions and that it required a doctor’s order.

After all this, on Thursday morning I had a good conversation with the attending doctor and a couple of the residents who had been involved in writing these orders in the day before and earlier in the week.  I gave them a good little speech and told them that I realized that they probably saw the full range of parents come through here in terms of involvement in the care of their children.  I have seen these parents run the full spectrum.  You see those who drop their kid off and tell the hospital to call when the child is fixed.  To their defense some parents do this out of necessity.  They have 6 or 8 other kids at home and no one to help care for the others.  Then there are those parents that want nothing to do with the care decisions for one reason or another..they just completely turn care over to the doctors even for the simplest issues. We are at the other end of the spectrum.  We are fully involved in aspects of Caden’s care.  It is almost required due to the fact that there is no one else to sort through the combination of issues unique to Caden.  We don’t pretend to have training in medicine but we are specialists in field of Caden care.  I asked them to simply look at how complicated of a child Caden is in terms of swallowing issues, immune posture, tube feeds, heart repairs, scoliosis, speech development, physical development and so on.   He is 4 1/2 years old, has been exclusively tube fed since birth and weighs 44 pounds.  Caden has not been hospitalized in nearly a year due to illness.  This doesn’t just happen by chance with a kid who has dealt with as many issues as Caden.  This is the same child whose cardiology team debated over whether he could live through his first heart surgery at six days old.  This is the same kid that some prenatal doctors tried to convince us to abort due to the difficulties involved in raising a child with serious health problems.  This child did not get to where he is at because we sit on the sidelines and watch other people care for him even when he is in the hospital.

After my lecture I went on to recommend that they bring us completely into all the care decisions moving forward.  I told them that we can and will maintain consistency between shifts as long as we know what needs to be done and why.  I asked that they move their morning pow-wow into Caden’s room or allow us to join them in the hallway.  Normally most of the observations discussed and decisions are made in the hallway and then they step in and tell us.  They agreed to move the meeting into the room and that happened for the first time today. This immediately brought light to misinformation again today form one residents who did rounds earlier to gather information for input into this pow-wow between the attending, other residents, students, nurse practitioners, pharmacists, etc.  One resident said during the pow-wow that Caden had been off oxygen and on room air since yesterday evening and had slept all night on room air.  Sherry corrected this statement and said that the oxygen had been on all night and had just been turned off at 5:50am this morning just a couple of hours earlier.  The resident proceeded to argue with Sherry over this issue. They settled it by going to the nurse and CA notes to confirm than Caden had in fact been on oxygen all night.

This has been one heck of a week.  We have been blessed to have such an awesome place to take our child, but it is full of humans that are capable of mistakes as we are ourselves.  I will leave you with a short note about the nurse that made mistake with the IV pump that sent saline into the bag of Vancomycin rather than sending the mixture into Caden’s arm.  She was on shift the next day and requested to be our nurse.  She did not yet realize the mistake that she had made from the end of her previous shift.  Once she found out she came and ask us to forgive her.  Of course we did and I told her that we don’t believe in luck.  Everything happens for a reason and obviously we needed to draw that blood before beginning the IV antibiotics.  I told her that her mistake helped cover the mistake of the doctor who wrote the order for blood work after the IV was ordered to begin.  Later a nurse manager came and asked me if we wanted the nurse removed from Caden’s care.  I told her that we were forgiving people and actually preferred to have the same nurse again.  She had been on Caden’s case for two previous day shifts and she had worked well with him and us.  The nurse stayed on Caden’s care team for the day and we were all happy for it.

Riley, JJ and Nana came to visit Caden today while I was home recovering from my 0-dark-thirty root canal.  Nana said that Caden just grinned from ear to ear when they came through the door. Nana (my mom) has been taking care of Riley and JJ all week while Sherry and I have played leap from on Caden’s care.  My mom and the other boys also brought Sherry some lunch since she had to be here at 6am to allow me to go get my root canal.  Yes…I was able to get the tooth fixed.  God put it on a couple of people’s hearts to help us out financially.  This has happened a handful of times in five years and every time it has been right on time.  We began working on getting our finances straightened out in 2005 by taking a Crowne Finacial course through our church.  We followed that up by reading and listening to some of Dave Ramsey’s stuff which has blessed us.  We have a peace of mind with what God has given us stewardship over. The enemy trys hard to discourage us in our efforts to pay off these lenders as we have seen in recent weeks.  I just laugh and trust that God will provide us a way through these silly games that we face from time to time.  You can read more about our financial testimony in a post I wrote titled Tithing in A Financial Storm.  To summarize I will steal the words of our pastor, “if you want God to help you with your finacnces then you have to get him involved in your fincacnes.”  Have you ever been tempted to forgo tithing because you knew your budget was going to come up short before you even started?  I can’t tell you how many time that thought has crossed my mind in recent years.  If it had not been for these blessings that these people shared with us this week I would not have been able to get my tooth repaired until mid September due to my work travel schedule and availability of funds in our budget.  The notes from the different people said almost the exact same thing and yet I am almost certain that they have no idea the other was given the same words to say to us.  It wil not be too long before God will be able to use us in the eact same way to bless others and I can’t wait.

My little car is still in the shop.  Yes it has been a full two weeks now just to repair the A/C.  The repair shop is now waiting on a replacement part for a defective one that got put on earlier in the week.  They assured me that they will not charge more for the replacement of the defective part. The shop let me borrow a nice loaner car (2006 Honda) that has a for sale sign on it.  The shop said they have had three calls this week as a result of me driving it around.  I am just glad the potential buyers were not calling to complain about my driving.  The shop has been patient with me driving their car around and I am sure they have been amazed at how calm I have been over the fact that they have not got my car A/C repaired after two weeks.  I have dependable loaner wheels and they are getting advertisement for the car.  Hey it works out for both of us.

Grandma and Grandpa (Sherry’s mom and dad) are scheduled to come into town tomorrow.  Sherry’s mom is going to stay the week while I am in Washington DC….assuming Caden is discharged and doing good as of Monday morning.  I will not be going anywhere if Caden is not home and doing better.

We continue to be blessed in so many ways.  We have great family and friends.  Thank you all for praying for Caden and our family.

Final note of the night…it is 11:45pm Friday night and Caden’s sats are 96 on room air while he sleeps. PRAISE GOD!!!

We got word today that the strain of flu that Caden has is H1N1 (Swine Flu).  We do not know where he got it from as he does not get out much.  Maybe it was his visit to the immunologist last Monday but that is pure speculation.  The treatment does not change as a result of beign H1N1 positive but the reactions from people can be quite interesting.  For instance the Child Life group here at MUSC told Sherry that we could keep all the toys that Caden was loaned to play with because their policy required them to trash everything touched by a patient who was found to be H1N1 positive.  Not sure if this has been the standard reaction to the flu every year at MUSC but I doubt it.  There is a whole lot of mask wearing my most people who enter the room..except the actual doctors.  They have been way more relaxed on the mask wearing thing.  Sherry did notice that they tend to back away from Caden when he starts moving around.  I am actually a little relieved that the labs came back positive for H1N1.  The initial statistics show that this year’s H1N1 (swine flu) has been less deadly than previous year’s run of the mill flu. If you are going to have flu then you want to have a strain that is less severe right?

Caden came very close to getting discharged today, but he is still needing a little oxygen to keep is saturation levels up when sleeping.  His respirations are a little fast and deep as well which means he is working a little harder than normal to breath even when on oxygen.  He has been doing beautifully without oxygen when he is awake.  He was sitting up and playing and smiling quite a bit.  The only other bad element to his current condition is that his stools have been straight liquid.  Changing a diaper or pull up has been an ordeal.  Not sure how we will handle that one at home.

We hope that tomorrow will bring us closer to discharge.  We are being cautious, more so than normal.  Maybe it is a tad bit of the fear creeping in form the other folks round us who are overreacting in such dramatic fashion, but none the less we are moving slowly to keep from getting rushed into a discharge.

Caden got another set of Rocephin injections tonight and is sleeping peacefully.   He is on less than a liter of oxygen while sleeping.  He has been dipping into the 80’s on his O2 sats while sleeping without oxygen.  Stay tuned via Twitter or Facebook as I will be updating there first as things change.

I think I mentioned last night that I initially resisted when the ER doctor said he wanted to admit Caden and put him on IV antibiotics.  My initial reaction had more to do with protocol than anything else.  Oh by the way…the protocol changes depending on where you are in the hospital and who your doctor is for a particular shift.  I am pretty convinced that there is little the hospital can do for Caden in a regular hospital room that we can’t do at home or at least in combination with home medical supply (for oxygen) and daily visits to the pediatrician when injections are needed.  Tonight I had a conversation with a resident that sealed my opinion.

I want to set the stage first.  Earlier in the day Caden’s IV failed.  The IV was the method for delivering the antibiotic (Rocephin) last night and some extra hydration today.  Since Caden has traditionally been a very difficult stick for IVs Sherry asked if they would forgo the IV and simply administer the Rocephin by way of injection(s).  She assured them that we could add water and electrolytes by g-tube for hydration if needed. The staff agreed and Sherry probably sighed with relief since the injections would likely come later in the night when I was back at the hospital.  This would save her from having to watch/hold Caden while he got a new IV.  Anyway…I showed up at about 10pm and Sherry said the Rocephin was on the way. She had carefully choreographed the routine for me.  They (nurses and assistants) were going to get vitals, give fever meds and Tamiflu via feeding tube, and give the injections all in one visit to Caden’s room to minimize the amount of disruption to his sleep.  About an hour later the nurse came in with the vitals cart and the fever meds.  She said that the day shift must have forgot to order the Rocephin injection because it still had not shown up. I agreed to go ahead gathering vitals and giving Caden Tylenol and Tamiflu via g-tube.  We were mostly able to get this done without waking him too much.  I noticed that Caden did not have the Lidocain patches on his legs.  Normally Caden would get Lidocaine on his skin at least twenty minutes prior to an injection of Rocephin.  As a matter of fact the ER even did Lidocaine on Caden’s hand before giving an IV and I did not even have to ask for it.  The nurse just looked at me as if I had just asked her for the square root of 841.  She said she would check into it.  About another hour later a young whipper snapper resident popped into Caden’s room. No mask, no gown, no gloves by the way even though we are in an isolation room.  Our conversation went something like this:

Dr. Whipper Snapper: Good evening sir I am Dr. Whipper Snapper. [extends hand to shake]

Me: [Shaking hands] good evening Dr. Whipper Snapper how are you?

Dr. Whipper Snapper: Good…so…about the request for Lidocaine cream.  Has there been indications that this has helped him in the past?

Me: Uh…well I really don’t know.  He has had the cream in his skin for every Rocephin injection I can remember and there have been quite a few.

Dr. Whipper Snapper: Well the cream will probably do very little to help.  The majority of the pain on these deep muscle shots is caused by the medicine entering the muscle tissue so the initial stick will barely be an issue with this type of shot. The cream will do very little to ease the pain.

Me: So if it will take away any of the pain then why not do it?  Is it an inconvenient to put the patches on?  Are there adverse side affects?  What is the problem with using the cream?

Dr. Whipper Snapper: No it is not about inconvenience and there are no real side effects to be concerned about.  It is just that I don’t want to do something that is futile. Do you know if the lidocaine helps at all?

Me: I have not had Rocephin with and without the topical cream so I really could not say.  I would have to test the process both ways to be able to say for sure.  Caden’s limited verbal skills have prevented him from articulating his preference.

Dr. Whipper Snapper: Understand. So can we forgo the cream?

Me: I will say that I am more concerned about how the medication is reconstituted than whether he gets cream on his legs.  I have seen the difference between Rocephin reconstituted with sterile water verses Rocephin reconstituted with lidocaine.  The pain for Caden is considerably more severe if the Rocephin is not reconstituted with lidocaine.

Dr. Whipper Snapper: Oh…Uh yes…that makes sense.  I will check into how the prescription is written and make sure it is mixed with lidocaine instead of sterile water.

Me: Thanks.  I am willing to forgo the cream as it will likely wake him up to put the cream on.  If he were already awake then I would say that we should go forward with the cream.

Dr. Whipper Snapper: Okay. Is everything else okay?

Me: I lowered Caden’s oxygen to 3/4 of a liter.  His O2 sats were 100% at 1.5 liters.  He is still hanging near 100% even at 3/4 liter.

Dr. Whipper Snapper: Oh yes.  That’s great. We want to wean him off the oxygen.  Let me know if you have any questions.

Note: The names have been changed to protect the guilty.

Still not sure why it was so important for Dr. Whipper Snapper to come in and have a conversation over the Lidocaine cream other than what he said about not doing something he saw as futile.  Since he did not volunteer that he had tried Rocephin shots with and without Lidocaine cream I will assume that he has never tried it either.  He did not seem to even blink with agreeing with me on the reconstitution issue even though he was not sure if it was ordered that way.  If he has such a keen sense for what is futile and what is not in terms of comforting a child, why would it not be common knowledge and practice to order Rocephin injections reconstituted with Lidocaine liquid to ease the pain for children?  His job in the ordering the Lidocaine cream would have only required him to put pen to paper.  Instead he got up and came to visit me to have this conversation over something that he had no objective evidence to support.  Subjectively I will agree that the initial poke seems to pale in comparison to the burn of the medicine deep in the muscle for Caden.  I gave in with the hopes that I have gained a little ground with him in case I need something later. 😉

Caden is doing pretty well considering the circumstances.  While you get monitored all too closely in the hospital there is little to no chance of getting rest.  Caden is on about 3/4 liter of O2 and his saturation numbers are at 97% while sound asleep.  If he keeps this up then we might be able to blow this popsicle stand within the next 24-48 hours with the doctors’ blessings.

Well…”the Rocephin is on the way” meant that it would be here in 4 1/2 hours.  That is right.  It is now 2:48am and Caden is finally back to sleep after 2:30am injections of Rocephin.   I could have driven to the ER from home, got the Rocephin injections, and been back home in bed.  ARGH…inpatient hospital protocol brought to you from room 727 at the Medical University of South Carolina Children’s Hospital.

Oh…Caden seemed to do okay without the Lidocaine cream ahead of the injections.

The flu has caused pneumonia for Caden.  We are being admitted to MUSC Children’s Hospital.  I resisted at first but I am not 100% due to my tooth ache.  He looks good and seems to feel good.  However pneumonia is not something you want to play with when you are already fighting 104 plus fevers due to flu, ear infection, and sinus infection.   Please keep Caden in your prayers.  I will keep you posted on his progress.

We were trucking along pretty good this weekend considering the circumstances.  Caden has had 103-104 fever on an off since Thursday.  Normal stuff for the flu.  Today we went out in the yard and even let JJ open his birthday presents out on the screened porch.  He also got to make a mess of his birthday cake.  After all the fun all the boys went down for a nap.  I kept Caden downstairs on a mat in the living room floor while Sherry did a grocery store run.  Caden coughed a time or two as he normally does.  I suctioned and did diaper changes as required.

Riley and JJ had both already got up from their naps.  Caden was still snoozing at about 5:45.  I took a look at him and noticed that his cheeks were rosy red.  Nana called at about the same time.  I told her that I just felt Caden’s neck and that he was on fire.  I can tell when Caden has a fever and generally how high just by laying the back of my hand against the side of his neck.  I immediately drew up Tylenol and Motrin and put that in his feeding tube with a water flush while holding a thermometer under his arm.  The number on the digital thermometer topped out at 104.9 F.  Since it was under the arm we add a degree to get the actual temperature.  This was the highest temp I can remember measuring on Caden.  I immediately took Caden up and put him in a cool bath and was able to get him down to 104.6 within about 15  minutes.  The pediatrician was calling back by this time.  Fortunately the same doctor that saw him on Friday was on call.  She said that she was concerned that the small amount of fluid found during the chest xray on Thursday night might be turning into full blown pneumonia.  So she said that we should er on the side of caution and go back to MUSC (Medical University of SC) to have him check out.

That is where we sit.  We are at MUSC and waiting to get results from another chest xray.  Caden’s temp is down and he is acting like his normal little silly self.  He is watching Boz and Veggie Tales videos.  He keeps patting me on the arm and showing me how he can make the numbers change on the telemitry.

Oh…And Riley has a sore throat.  he tested negative for flu.  Praise God!.  He is on an antibiotic and is gettign tylenol for he fever.

For those of you who follow me or MrsOzz on Facebook you know that we have had a rough week. For the rest of you here is the scoop. Caden went to his immunologist on Monday. While there the doctor noticed signs of an ear infection and sinusitis. Caden is normally on a maintenance dose of antibiotic due to his immune system status but these symptoms justified bumping Caden up to a full dose of a stronger antibiotic. That was started on Monday evening. As of Thursday Caden’s fevers had not got any better and in fact had got much worse. Three days on a strong antibiotic and seeing worse symptoms is an automatic trip to the doctor. We decided that the 104.6 fever justified a trip to ER.

As with most of our trips to the ER this one was good timing. Caden tested positive for influenza type A and showed a small amount of fluid in his lower left lung. He ear was still actively draining too. The antibiotic dose was left in place and Caden was also given tamaflu. A culture of his sinus drainage was sent off to verify the strain of flu. Given the fact that a lot of H1N1 has been showing up in the MUSC ER they were confident that Caden’s would be positive as well.

Today the fevers have lingered in the 104 plus range and Caden has been blowing clots of blood out of his nose. The blood thing just started today and sort of freaked us out at first. It was coming out in clots about the size of a marble. A good bit has been collecting in the back of his throat as well causing a lot of suctioning since Caden is not able to swallow and clear any of it from his throat area. We had just seen the pediatrician a few hours before this bleeding started so I called them back. The doc said it was just a dryness and a humidifier would help. Caden has been much more grumpy and his eyes are puffy and red. He has not slept much…us neither…in the last few nights. I think it catching up with him on top of just feeling bad due to the flu. I cannot remember the last time he looked this rough. He is obviously very uncomfortable. My primary prayer request is for Caden’s healing and comfort.

I decided to stay home to assist Sherry today for a few reasons. To summarize let me just say that Murphy showed up at our house this week with an attitude. That is the Murphy from Murphy’s Law that Dave Ramsey talks about all the time.  Murphy came in an took our entire emergency savings fund and then some this week. I am still trying to figure out how I am going to cover everything. First the A/C went out in my car. I went to pick it up and paid the $500 tab only to find a mile down the road that the A/C was not fixed after all. I went back and took the mechanic for a ride and now it looks like we are in for at least another $350 on the car. On top of the car thing I had some dental work done about two weeks ago that involved a very large filling being put in very near to the nerve. The nerve has not forgiven the me and the dentist and now the nerve is insisting on moving out. Yes…That means a root canal is in the near future. The dental insurance I have with the government is one of the worse plans I have ever had and it cover almost nothing causing me to fork out over $600 out of pocket for this root canal. If you are keeping up with the numbers then you know what adds up to $1450. We are on baby step 2 which means we only keep about $1000 in savings and pile the rest of our excess cash on debt. By the way, we have only one payment left on our minivan and we will be down to one credit card and a small student loan to pay off. Those two items will be paid off shortly after the first of the year if I can manage to evict Murphy.

So all of this post so far and a few other things adds up to a ton of stress for Sherry. She has been cooped up in this house most of the week with no way to go. I used to van to get to a from work while my little Jetta was taking a siesta at the repair shop. I have not been a ray of sunshine either due to the tooth ache. I have been eating more Vicodin than peppermint Lifesavers in the past two days and I will not be able to see the endodonist until Wednesday of next week. On top of all this Sherry is bummed that this flu illness has put the brakes on Josiah’s birthday party for tomorrow.  All of the boys were so excited to be celebrating JJ’s second birthday this weekend with a few friends and family.

Pray requests:

• Healing for Caden
• Protection over the health of the remainder of the family
• Sherry to have a peace of mind
• Comfort and healing for me
• Financial blessings
• A sense of understanding  and compasion for JJ and Riley towards Caden