Sunday, April 24, 2005

 

Nurses Needed

Thank you for your prayers and much needed advice. Your emails really do help. I am writing in part to clarify our needs.

We’ve been asked what is happening with the night time nursing help. Hank’s insurance is expected to continue nursing care until May 16th when we will have used up the 60 visits that is provided in a contract year. We are going to request an “extension” from the insurance but we are having difficulty getting the case supervisor or medical director’s name and number. We really wanted to make our case to them for 2 reasons: the case manager assigned to Caden was unable to approve the extension and because the approval has to go through one or both of the people mentioned above. I pray that we are able to get the information soon, we are able to communicate effectively and compassionately, and that the powers that be are open minded. An extension is some temporary help until we have a more permanent solution like the Medicaid Waiver.

The Waiver has been a confusing, frustrating process shrouded in secrecy. The Waiver is best described as an extension to regular Medicaid that provides services like in home nursing care which are not covered by the standard Medicaid insurance. Much time has been spent trying to figure out who to talk to and what steps need to be completed to get a Waiver. Getting the Medicaid Waiver for Caden will be a very subjective process since he doesn’t fit into the 3 main categories for immediate nursing care (mental retardation, on a ventilator, spinal/brain injuries). He does partially qualify for the Dept. Disabilities and Special Needs (DDSN) until age three. The category Caden was placed is “at risk/high risk,” thus the subjective area. We finally got to speak to a human being in Columbia about the Waiver and it looks like there are 96 people on the “critical” list waiting for a slot to open up. People are moved off the list when someone no longer needs the Waiver thus freeing up the funds for someone else to receive care. The estimate is a 6 month wait if Caden is accepted.

As ironic as it may be, our biggest problem right now is finding the nurses not the funds since Hank’s insurance has not yet run out! I have called all the nursing agencies I could find and ALL have a LPN shortage. Our primary nurse is leaving the agency this week and so far we only have 1 nurse and 1 night a week covered (including the week Hank travels!). This leaves Hank and I to try and split the nights. Then Hank has to go to work in the morning as I am getting with Riley and Caden. The only way we can figure is for Hank to go to bed right after dinner while I stay up with Caden so that he can get 6 hours of sleep and I can get him up and go to bed. I’m not looking forward to this schedule because Riley and I will see very little of Hank. We are already exhausted even with 8 hours of sleep at night. The stress really drains us! I can’t imagine how it will be with less sleep. Due to the shortage of LPNs the nursing agency we use has not been able to find us anyone to orient to Caden’s case in the past month. They ran an ad in this weekend’s paper that we are praying will bring in nurses. I have spent hours calling nursing agencies and talking with different people at MUSC to get the word out that we are in need of a nurse. My next try is going to be the nursing schools and to continue to give out our name and number to nurses we meet. If you know any LPN (or RN willing to take LPN pay) that wants some extra hours please give them our phone number or email us with their contact information. We so appreciate it!

Thanks for your time in reading this long message! May God bless you.

Sherry

Tuesday, April 19, 2005

 

A Little Better

It has been three weeks now that Caden has experienced reflux every single day. The past few days have been a little better since we have not seen as many reflux episodes per day. We took Caden back to his pediatrician yesterday. The doctor said that Caden's lungs sounded clear. Caden got weighed and was at the same weight (12lb 3oz) that he was at last week. That is good because we were concerned that Caden might loose weight with all the reflux and the fact that he has been getting a lot of pedialyte over the past few weeks.

This past weekend started off really bad. Sherry and I got about as low as we have been in months. We were both sick, sad, depressed, confused, and just plain tired. I personally can not remember being that upset since the night of Caden's surgery when we thought we might loose him. Fortunately my mom and sister came into town to our rescue on Saturday. They sent us off on a date Saturday and even took the night shift with Caden on Saturday night so we could sleep. They were both amazed at how busy Caden keeps you. My sister is an RN and offered some advice on how to suction Caden to minimize the irritation to the rim of his nose. His nose has become raw due to the amount of suction required to keep his airway clear over the past three weeks. He had never had a rash on his nose until the first of April.

With all of this going on I guess it is worth mentioning that I am nursing a tooth ache that I have found out is a cracked molar. This is a tooth that I had gum surgery on to save it about eighteen months ago. The surgery was done to expose more tooth for a new crown since my old crown kept popping off. The tooth was weak due to the root canal, post and crown. The crack has caused my gum to get infected. The dentist referred me to and endodontist (root canal specialist) who has now referred me to an oral surgeon. Hopefully I can get it removed today or tomorrow. It has been bothering me since the middle of March. I have since acquired a sinus infection to go along with it.

We did not have a nurse last night. I don't believe the details are important, but it was an unexpected situation. Sherry and I had to split the shift last night. I did not find out until about 2:30 AM when Sherry woke me to tell me that I would need to relieve her soon.

I don't know where we are headed with all this, but I hope we get there soon. We pray constantly and we are searching high and low for a solution to the nursing problem. We hope the answer to our prayers is found in healing for Caden. He will get better and we know that. In the meantime, we have to be responsible and look for ways to deal with the situation at hand.

We have friends as well as Caden's pediatrician looking for counseling assistance for us to sort through our emotions. They may be able to help us identify some resources to get care for Caden as well. Caden's pediatrician knows a pastor at our church and our friend Kane is making a few calls as well. I am taking all the suggestions I can come up with at this point.

Please keep us in your prayers. If you have any ideas, please pass them on to us. We are ready to do what ever God wants us to do. It has not come clear yet, but maybe one of you have the answer and you just don't realize it.

Blessings to you all,
Hank O

Tuesday, April 12, 2005

 

Signs of improvement after a rough weekend

Things are improving for Caden after a rough few days. Sunday was a very rough day. Caden got to the point where he could not tolerate food at all. He would reflux at every feeding and when moving food in and out using a syringe to flush medicines. He was also running a low-grade fever. We called the doctor to get guidance on what to do even though we had a pretty good idea. We put Caden on clear liquids, kept and eye on his temperature, and watched for a change in breathing. The clear liquids did the trick. He went for almost 18 hours without reflux.

We took him in to see the pediatrician first thing Monday morning. The doctor heard a little wheezing and ordered some breathing treatments. The first treatment was administered in the office and did help the wheezing. The doctor also prescribed some antibiotics. This was due to what the doctor believes is a bacterial infection in Caden's sinuses due to all the congestion. We took Caden back to the doctor on Tuesday. The doctor wanted to make sure the wheezing was getting better. The wheezing was better, but it was still hanging around. The doctor wants him back in one more time this week to make sure the it goes away. The doctor seems very cautious about the wheezing since that is where the last trip to the ICU started.

That was the good news. Now for the great news. Caden is now back on his normal feeding regiment. He has actually gone through this deal without losing any weight to this point. He actually gained three ounces over the past week and is now up to 12 pounds 3 ounces.

I have been home for over an hour this evening and have not had to suction Caden yet. His secretions seem to be getting better and I just gave him a full feeding with no reflux.

Sherry and I both have been a little under the weather over the past week. Sherry was off to bed by 8:30 tonight. I went to bed early last night. Riley has shown signs of being affected by things too. He has been whinny and has not been sleeping well. We know he is seeing and feeling our pain and frustration. The amount of quality time we spend with each other and with Riley has suffered due to Caden's needs. Riley knows it too. He said to me the other morning, "Caden's sick Daddy."

Even though things are rough some days, I know that it could be worse. I continue to get encouraging emails and have encouraging talks with folks who read about Caden on this web site. Many of you know that encouraging words are what make me tick. Last week Sherry and I were getting very frustrated and depressed over many different issues. I called a friend who came over that night to talk to us. He helped us realize where our true strength is actually at if we will just reach out to it. The true strength is in God. You are never alone. You always have someone to talk to. You always have someone you should talk to. For it says in 1st Thessalonians 5: 16 - 18, "Always be joyful. Always keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus."(TLB) How can you argue with the word of God? ... You can't!

God Bless,
Hank O

Sunday, April 10, 2005

 

Reflux Continues

Caden has had a rough week. We have not seen a 24 hour period without reflux in over 10 days now. He has averaged about 4 reflux episodes per day since March 30th. His little nose is raw from all of the suctioning that is required to keep his airway clear.

I have been up with Caden since about 3:30 AM. Sherry was up with him until then last night. This is a typical Friday and Saturday night routine for us. The only difference now is that we both felt confident enough in the past to dose in the guest bedroom as long as we had the baby monitor volume turned up.

Sherry will get to go to church this morning while I stay home with the boys. She is planning on taking the afternoon as a break away from the house. I took Riley to church on Saturday evening. He loves going to his class. You can ask him now what he learned today and he will say, "I learned about Jesus." Sherry stayed home with Caden since he has not been able to ride in his car seat without refluxing in over a week.

Sherry took Caden and Riley out on Friday to go about a mile down the road to the drive-thru pharmacy. Caden refluxed while she was sitting at the drive-thru window. Sherry immediately interrupted her transaction to suction Caden. Sherry said that the young man at the drive-thru window turned white as a sheet when he saw it happen. She turned back around to complete the transaction and the man could only say, "Wow! You have your hands full."

I had to stopped writing for a few minutes during that last paragraph. Caden refluxed without any warning whatsovever. I was sitting right next to his bed while writing this posting. He did not even move, grunt, or anything before it happened. All I heard was a sound that resembled that of water being poured very slowly from a cup. I jumped up and saw a stream running down Caden's face from his right nostril. On this particular occasion he was about 90% done with his feeding. I turned off his feeding pump with my left hand as I lifted it from the suction pump power switch to get a grip on his head. My right hand was simultaneously reaching for the suction hose and pulling it towards his face. Even though he looks at you with that "please help me" look, he will almost always fight when the suction hose it placed up to his nose. After I suctioned long enough to clear his airway, I used a syringe to attach to his feeding tube so that I could pull out the ounce of food remaining in his stomach. This has been a typical scene for me or the nurse on duty between 5:30 and 7AM this week. This is the only time when a reflux spell has become predictable in recent days.

I hope the description was not too graphic for you. Sherry and I were just talking about the pharmacy incident yesterday and how it is impossible to describe what it is like when Caden refluxes. Dealing with it has become second nature to us even though it causes us to get some pretty weird looks in public. We try to be discrete, but you don't have time to find a restroom. We sit at the back of the church right next to the door when we take Caden. I know the people around us have wondered what was going on when I jump up with Caden in one hand and the suction machine in the other and dash out the door. The most dangerous situation for dealing with he reflux is while driving with no other adult in the car. You have to pull over immediately. You don't have three minutes to wait until the next exit. You have to pull over in the same fashion as if you had no other choice due to running out of gas. We just get out of the flow of traffic and proceed to clearing Caden's airway. Sherry tries to schedule Caden's appointments near the beginning or end of the day or around lunch time so that I can ride with her without having to take a day off from work. That does not always work out and she ends up traveling by herself with the two boys quite often.

I had to take another break. Riley woke up crying with an extremely wet diaper that required me to change his bed linens. This is one of those situations where you just remove whatever residual is in Caden's stomach with a syringe so that you can tend to the other problem without worrying as much about Caden. That way if Caden even tries to reflux he has nothing that will come up and get in front of his airway. You can't leave Caden without anything in his stomach for very long or he will get behind on his feedings for the day. He is getting a tad bit more than is required to maintain his current weight. Since we can't measure how much he looses to a reflux spell, we really don't know how much he is retaining, but I guess we will find out if it is enough when he gets weighed again. The output on the other end is pretty good so we nor the doctors are worried about dehydration or malnutrition.

I am going to close for today. Once again, I apologize for the graphic descriptions. It is hard to visualize and you would not want to voluntarily see it anyway. Please keep this little boy in your prayers. I will keep you posted on his progress.

Thanks for checking on Caden.
All our love,
Hank, Sherry, Riley, and Caden

Tuesday, April 05, 2005

 

New Pictures Today

This is an example of the 16 new images today. Click the picture below to see the latest. Don't forget to read the latest details on Caden's progress just below this picture.




I hope you enjoy the pictures.

Hank O

Monday, April 04, 2005

 

Tremendous Weight Gain

Caden has had tremendous weight gain . Caden now weighs 12 pounds. Caden's feedings had been delivered into his tummy over a period of about an hour up until about two weeks ago. Sherry has been working very hard to get Caden's feedings to where he completes a feeding in approximately thirty minutes. This has him currently getting 110 ML of the formula and mom's milk mixture via g-tube in thirty minutes out of every three hours. Sherry has been working hard to break Caden of his need for the pacifier to go to sleep. We are very pleased with her success and Caden no longer requires a pacifier to go to sleep. Caden's physical therapist visited today and was very pleased with Caden's progress. Caden is gaining strength. He has great head and torso control. He grabs and puts just about everything in his mouth. He has not found his feet yet, but I am sure he will soon. We visited the doctor today with Caden. Caden has had some rough days with reflux since Thursday of last week. These reflux spells are as traumatic as ever. He has been very difficult to suction. Caden is showing no new evidence of being able to swallow. We have still not found any rhyme or reason to what causes the reflux. The doctor believes that Caden may have a virus that is causing him to have thicker secretions and causing us difficulty trying to suction him. We asked the doctor to refer us the pediatric surgeon. We are wanting to gather more facts on the Nissen Fundoplication. This is the procedure that wraps stomach tissue around the lower esophagus to help prevent reflux. We have not decided to proceed with the procedure. We just want to get the facts straight form a person who specializes in this area. We have also contacted CHOP (Children's Hospital of Philadelphia) to get some guidance. We still do not have appointments arranged with any of the CHOP clinics, but we are hoping to make that trip before we have to make any big decisions regarding the swallowing difficulties and reflux problems that Caden has experienced.

We are still having a nurse monitor Caden between 11pm and 7 am Sunday night through Thursday night. We have a nurse here over the weekend when my travel runs through a weekend. We would like to use the nurses on the weekends now, but we are trying to conserve the days that the insurance will cover. My insurance will cover 60 visits in a contract year. Those 60 visits will run out for us sometime in May at our current rate. We are working with Caden's doctors to get the required information to Medicaid to see if they will pick up the tab where my insurance drops off. We are not sure what we will do if Medicaid will not pick up the tab. The rate for the nurse is well over $30 per hour.

We consider the nursing care to be a necessity. Sherry and I still split the shift on Friday and Saturday nights and find that plenty of action still takes place in the wee hours of the night. The unpredictability of Caden's reflux puts him at extreme risk of aspiration if the reflux is not cleared by us or a nurse. In the event he refluxes right after exhaling or coughing, then he has no way to clear his airway before trying to breath in. She suspected that this may have happened today. She went into the restroom for just a couple of minutes, and returned to find Caden with a big bubble expanding and contracting from his nose. He was struggling to breath but could not. Sherry cleared his airway by the suction on him, but was concerned that he may have aspirated some of the fluid. The trip to the doctor today was primarily to have the doctor listen to Caden's lungs. He sounded okay from what the doctor could tell. He gave us signs to look for that could signal an onset of pneumonia due to aspiration. We have not seen any of these signs.

While the news tonight is mixed, I assure you that we are doing pretty good. Sherry is exhausted, but she remains in good spirits. I give her a chance to get some alone time for the evening or the whole day sometimes on Saturday so that she can go do whatever she wants. My few hours alone with these two boys gives me a good enough feel for what her day must be like when I am working. It takes a special person to endure such a situation everyday. I am truly blessed to have her.

It is now 11:30 PM and he nurse has been here for a while. I finally got Caden's apnea monitor downloaded to the monitoring service, have drawn up his medications for the next 24 hours,and moved him to his room. Oh yeah, Caden's Reglan dose was increase by 66% today due to his weight gain. I am now off to bed.

Please keep Caden in your prayers. He has seen some success lately, but still has room for improvement. Sherry needs rest, strength, and encouragement. I was gone on travel to New England for over 10 days over the Easter holiday. She has still not had a break since before my departure on 3/20. I will give her a break this weekend. While I am tempted to ask for you to pray for success in getting Medicaid coverage for the nursing care, I am going to say pray for complete healing of Caden's swallowing and reflux problems instead. I would rather just skip that red tape process and get to where we no longer even need a nurse at night.

Thanks again for your prayers.
Hank O

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