Nursing Care Drama

So I haven't said much about the situation with Caden's nursing care. I guess that's because sometimes I feel a little weird about having a nurse in the first place. It's supposed to take some of the stress out of my life. However, it's actually been adding a whole different kind of stress into the house.

When a child qualifies for nursing care, the agency typically says they can't get a nurse for less than 40 hours/week because the nurses want to work full time. I can understand that perspective, but yet I really didn't think I needed a nurse for that much time! After all, I don't have a very big house and sometimes I like to have my own space to relax in without someone else around. But apparently we didn't have a choice.

So, in the middle of February, we had our nurse #1 start. We liked her pretty well. She was very soft-spoken, considerate of the fact that this is our home, LOVES children and you could see that in how she interacted with Caden and overall a nice person. However she has a lot going on in her personal life so she sometimes gets a little distracted and can forget little things. And, for those of you who know me, you know I am very particular and like things done in a specific way. So when I go to look for something after she left, I would never know where to find it. For many things it's not that big a deal. However, when it is your child's g-tube extension and you can't really feed them without it, it becomes a bit more of a problem. At any rate, things were still moving along okay. One of the things I really appreciated about her is that she is a Christian and was constantly singing bible songs to Caden. I love that!

Well, this nurse also happens to be in the military reserves which means she has training obligations and other things she is required to participate in. She had a two-week training scheduled beginning on April 19 and ending April 30. That was fine. We were told by the nursing agency they would be able to get us a temporary replacement during her absence. However, a whole week went by with no one being able to come out. Every day I was told “we don't have anyone today, but tomorrow we have the perfect person coming in to do orientation and we'll give you a call.” I wouldn't hear anything the next day so I would call them back and would hear, “well, they didn't have pediatric experience” or “they haven't worked with babies before.” So obviously I don't want them taking care of Caden if that is the case.

So I was on my own for that week and that was okay. However, the problem came in when I talked to the nursing agency on Thursday and they told me that the nursing supervisor had to come out to do a “re-certification” in order to justify Caden having nursing care and that had to be done by that day otherwise we would have our case discharged. I told them I didn't really feel that was fair to me because it wasn't my fault we didn't have a nurse. They told me I had two choices. We could either be discharged or we could be put on a “hold” status. I said I didn't really like either option but if those were the only two I had, I was choosing the hold status. The idea was that when our nurse came back from her two weeks of military training that she would come back and the case would resume as it was before. I said that was fine.

Then I got a call the following Monday, April 25 and was told that they had a nurse who could come out that day to do an orientation and could work that week. I said, great, send her out. So she came out that afternoon with the nursing supervisor. The supervisor told me they had to re-open my case since we had been discharged the previous week. I wasn't very happy when I heard that since I was very clear when I told them I did NOT want to be discharged. Anyway...

Enter nurse #2 into the picture. First off she seems “ok”. Not great, but ok. I notice that she doesn't seem to be listening to what I tell her because she will ask me a question I literally just answered. For example I will say that Caden takes a nap at noon. Then five minutes later she asks me if and when Caden takes a nap. Things like that made me wonder if she was just overwhelmed with information and she was having trouble remembering it all or if she truly just wasn't listening to what I was saying. I decided to give her the benefit of the doubt to start off.

Things started getting really ugly when she attended a few of Caden's therapy sessions though. The first session she came to was PT. Now, keep in mind that Caden's PT is phenomenal and we LOVE LOVE LOVE her! She is extremely knowledgeable and VERY good at what she does. She is also good at educating and explaining to people why she is doing certain things with Caden. She did a great job telling nurse #2 why we were trying to keep Caden on all fours as long as possible and keeping him out of standing position. (That's a whole other story and if you want me to say more about it, I can in another post.) She also had nurse #2 practice several exercises with Caden on the large exercise ball so that she would be able to do these at home. It became clear very quickly that nurse #2 was not “getting” it! In fact at one point she completely let go of Caden while he was on the ball. Now I'm pretty sure that anyone with common sense wouldn't think that was a good idea. Hello??? An almost 16-month old baby on top of a large round ball without support??? Call me crazy but that just seems like a no-brainer! So things weren't going great.

The next day she came with us to Caden's OT session. Caden's OT is also VERY good at what she does and we love her as well! She works at the same place as the PT. :) Caden has some sensory issues that she wanted to address with a brushing/joint compression technique that shows good results when done properly. Our OT says that if this is not done correctly, it is not only ineffective but can also be detrimental to children. So I was paying very close attention while she showed me what to do. She had me practice on her so she could make sure I was using the appropriate pressure and hand positions. She said I did very well; better than most people the first time. So I gave myself a little pat on the back. :)

The OT asked nurse #2 to practice on her. Nurse #2 responded by saying, “I already know how to do it.” Our OT replied that she did NOT want nurse #2 doing the technique on Caden without her approval of it first. So she half-heartedly went through the motions. I was thoroughly unimpressed! And, the other thing that about sent me through the roof during the session happened before this. As the OT was explaining the background about the brushing/joint compression, nurse #2 took Caden and stood him up and was holding on to him telling him, “Go on, take a step. Take a step to Mommy!” This is in COMPLETE opposition to what our PT had told her the day before!!! Our OT gave me a look of horror before firmly explaining to nurse #2 that we do NOT want him standing right now and went into all the reasons why. Oh how I love our therapists! They are looking out for Caden's best interest as our nurse clearly was not.

The icing on the cake was when Caden had his speech therapy testing right after OT that day. Normally I do not go in the room when the therapist works with Caden for speech because it's too distracting. But since she was doing testing in order to write up a report on his progress she needed me to be present to ask me questions. That meant that we all got to go in: me, Caden, Kyler, nurse #2 and the speech therapist. About halfway through the session, nurse #2 announces that Caden said “ducky” twice earlier in the day. I find this extremely hard to believe since we can't even get him to consistently repeat “duh” as the beginning sound for “duck.” The therapist (again, we LOVE Caden's speech therapist and she also works at the same place as the PT & OT) gave me a weird look but kind of ignored the nurse. So nurse #2 gets down on the floor next to Caden and starts saying “Ducky. Ducky. Say ducky” over and over and over again. Even if Caden could say “ducky” she wasn't giving him an opportunity to respond because she was pummeling him with words. I wanted to scream at her to get away from him. Thankfully she backed off and left him alone for the rest of the session.

So, the discussions began with the nursing agency. I told them I wanted nurse #1 back when she was back from her training. They told me they wanted me to have both nurses sharing Caden's care. This would mean that one would be here two days/week and the other would be here three days/week. I thought maybe I could put up with nurse #2 if I only had her two days/week. But then when I talked to the agency about it again, they told me that nurse #1 wanted to have a night shift and they had a family that needed a night nurse so she wouldn't be coming back to work for us. So they thought it was great because then we could keep nurse #2 with us full time. I, however, did not think this was fantastic news at all. In fact I told them I really wasn't interested in that. They suggested I think about it over the weekend and get back to them on Monday. So, Greg and I talked about it a lot over the weekend and I talked to some friends about it as well. The consensus was that nurse #2 did not have Caden's best interest in mind and we needed to keep that our priority. Monday morning I called the agency and told them we did not feel that nurse #2 was a good fit for our family. They started trying to pressure me into keeping her because they didn't know how I could know after only a week that she wasn't the right person. So I told them she wasn't listening to me and the things I was telling her and she really wasn't listening to the therapists and what they were saying. This was a HUGE problem and was not acceptable therefore we did not want her back. I told them I would rather do it myself than have nurse #2 in my house. I told them I would go without a nurse until they could find someone else to come out. So that is where we left it on Monday.

Tuesday came and went with no word which wasn't surprising. And then Wednesday (today) they left me a message telling me that nurse #1 is able to come back to work for us. I asked them what happened since she wanted to have a night shift. I guess it wasn't working out quite as well as she had hoped with her own family so she decided day shift was better after all. So, apparently, tomorrow morning nurse #1 will be back to work with us. We will see how it goes. Hopefully things will go smoothly. Poor Caden is starting to show some of the stress with all the changes recently and I think he really needs the stability in his life.

The label of the post says it all, I think... we've just been dealing with nursing care drama! Quite honestly I am tired of all the drama in our lives. I would really like to have a quiet, boring life. That sounds pretty good right now! In your prayers you can request for us to have a nice, boring, drama-free life!

Fighting...

I have gotten a little discouraged lately because I have been fighting some battles on Caden's behalf and have felt like I've been getting nowhere. There were days when it felt like nothing was going our way. It is so easy to give up in defeat. But then I would look at Caden's sweet smile and know that I had to keep going. It is for his benefit. God is good though and things happen in His time, not mine!

So, finally, we received some really great news! First of all, I know I have mentioned that we have been trying to get insurance authorization for Caden to have intensive feeding therapy through Clinic 4 Kidz. They have a 96% and higher success rate of getting kids off g-tubes and eating orally. It is a higher percentage the younger the child (they work with kids up to 12 years old). So we are anxious to get Caden going. There is an 8-month waiting list and we have been on it for 4 months. Our time should come up at the end of August. But in the meantime, we have spent the last 4 months going in circles with insurance and doctors trying to get authorization for them to pay for this program as it is extremely expensive!

For a long time they were saying they couldn't see any reason why they wouldn't pay for it. However, after doing a courtesy review, they submitted an official letter of denial saying it wasn't medically necessary. :( I was so frustrated! So, I talked to Caden's GI doctor's office again because they are the ones who made the referral. The dietitian at that office was finally able to make contact with the medical director at Blue Shield and convince them that this is medically necessary. They approved 4 weeks of services! That is FANTASTIC news! Unfortunately there are a few complications with that as well. If you'll remember I just said we aren't supposed to start until the end of August. That is more than 4 weeks away... The 4 weeks will be up on May 26. So at this point, we are hoping we can get the evaluation done in that time frame and then hopefully they will authorize the actual therapy services again when those start at the end of August. I can't even tell you how many times I've gone in circles talking to different people. It's exhausting! But, I am absolutely THRILLED to be at this point. I know God is working for good and things happen in HIS timeframe, not mine. But I tend to get a little impatient.

On another front, we have been receiving respite care services. For those who aren't familiar with this, it is childcare provided through UCP Family Respite Services. UCP stands for United Cerebral Palsy. They provide free childcare for children who qualify. It is paid for through Alta California Regional Center who also pays for all of Caden's therapies. Anyway, I talked to our service coordinator at the regional center a few weeks ago and she informed me that because we now have nursing care for Caden, we are no longer allowed to have respite care. She said it was her mistake that we have had both for the last couple months. I was really disappointed because the two things serve different purposes and I didn't want to lose the respite but at the time I didn't think I had a choice.

Then I started talking to people. Other families who have been through this with their kids. They encouraged me to fight. They said I needed to ask for a copy of the policy or law that says we can't have both. And, if they still continued to say that I can't have both, that I need to request a Notice of Action because I needed to take that to Disability Rights California. They provide pro bono legal help for families with kids with disabilities. I was in touch with them last fall when the regional center was denying OT and speech therapies. As soon as the regional center found out I'd been working with Disability Rights California, we were authorized for Caden's therapies two days later. Funny how that works!

In addition to talking to other families, I called the Warmline Family Resource Center. They also provide answers to questions regarding to the services offered by the regional center. They are very well versed in the Trailer Bill language which outlines services offered by the state of CA. When I told them I was being told that I couldn't have both nursing and respite care they said absolutely not! They told me the two things were completely separate. First of all, funding for the nursing care comes from Medi-Cal and the funding for the respite comes from the regional center. So since the money doesn't come out of the same “pot”, they said it shouldn't matter if we had both. In addition, they said the two things serve completely different purposes which is exactly what I said. So they said the same thing as the other people I had talked to. They said to ask for a copy of the policy that says I can't have both and ask them what changed in the Trailer Bill language which would preclude us from having both. So, after talking to them, I was set to FIGHT!

Let me give you a little background on how we use the two services and how they are different. Nursing care helps us keep Caden home and away from germs. It allows me to cook, clean, do laundry, etc. and know that Caden is being cared for. I am able to take Kyler to/from preschool without taking Caden and exposing him to all the germy 3 & 4 year olds. And, because I never have enough time in the day to do all the homework from Caden's therapy sessions, the nurse is able to devote her time to doing that. So in short, nursing care allows me to continue to run my household and still have Caden have all the therapy he needs. But don't get me wrong, I still have to drive Caden to/from all his therapy and doctor appointments and participate in the sessions as well. I am very involved with his daily care, it just takes a lot of the stress out of it.

Now respite care is different. UCP will watch siblings as well (nursing care only watches Caden). So, this allows me to get out in the evening, it allows Greg & I to go on a date. It allows Greg & I to take Kyler out and do something special with him. It is what gives us a true break! This is something nursing does not do.

So, I contacted our service coordinator and told her I wanted a copy of the policy and a Notice of Action because I was pursuing this. I received an email back from her telling me that they were allowing me to keep my services while they “clarified” the language on the Trailer Bill. Respite hours are provided by quarter and we have 90 hours/quarter that we can use as we choose. So, at this point, we have won another battle. But I have since heard from our service coordinator and she is still trying to take the respite away from us but it will be after this quarter. We will see. I'm not done fighting yet!

Slacker

I've been a slacker lately when it comes to updating the blog. I guess in our case, no news means good news. Or at least no bad news.

Actually we've had a few really good weeks since Caden recovered from having pneumonia. In fact, my little man recently started clapping and giving high-fives. He also appears to be signing the word “more” and attempting to repeat sounds when we make them. I love it! We have been trying to get him to do these things for so long and it is finally happening. He's not %100 consistent, but I'll take it.

Also, we saw his pulmonologist for a follow-up appointment last week and he said Caden's lungs sounded “perfect.” No sweeter words can be spoken about him in my opinion. His lungs are what we are most concerned about all the time. So, what a blessing! We are continuing a couple medications until middle of May and then we're done. Yay!!!

Overall, I really feel like Caden is on the verge of some great progress. It's already started happening and I feel like there is a lot more to come in the next few weeks. I'll try to keep you posted!

When I Became a Heart Mother

I found this blog (http://simmonsfamilyupdate.com/) from the Blenderized Diet list serve I belong to. It is another heart mom blogging about her son who was born with hypoplastic left heart syndrome. He is currently waiting for a heart transplant.

Her blog caught my attention because of her post on the blenderized diet she recently started her son on. I thought she did a wonderful job detailing the process of creating a healthy, nutritious blend for him. So, for those of you interested in having a better idea of what I do for Caden could read this and get more information.

Also, on her page, she has a poem, entitled "When I Became a Heart Mother" which really touched me. I am listing it here because I know there are many heart mamas out there who can truly relate to this! It puts my life into perspective. I was chosen to be Caden's mommy for a reason. He loves me like no other.

"When I Became a Heart Mother"
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick
I thought, am I to blame?
I don't think I can handle this
I'm really not that strong
It seemed my heart was breaking
As, I'd loved him for so long.
I will not give up on this child
despite your best "advice"
I will give my child a chance
No matter what the price
And I will learn all that I need
to help my child to thrive.
I'll even use that feeding tube
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this
I will not curse our fate.
The feeding pump beeps,(at 3:00 a.m.)
It serves as my reminder
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings
and I run to my sleeping child's bed
I watch him then, for quite awhile
(Bend down and kiss his head)
Then I cry for the parent's whose lives have been broken
And I look to God wondering why?
Oh Lord, I just can't know your ways
No matter how I try
And yet, I trust You hold his life
(and guide us through each day)
My mind says savor each moment he's here
But my heart whispers,"Please let him stay"
From pacing the surgical waiting room
to sitting by his hospital bed
From wishing for a good nights sleep
to learning every med
From wondering will he be alright
to watching him reach out his hands
with every smile, my heart just melts
despite life's harsh demands
For all who see that faded line
I look to them and smile
You see my child is loved so much
I would face any trial
That same scar I trace with my finger
It's the door to his beautiful heart
I never guessed how much I'd love him
Just as YOU loved him right from the start
A heart mom is always a heart mom
Now wise beyond her years
And for those who have angels in heaven
Our hearts share in all of your tears
Everyday I will strive to remember
You chose me for him and no other
And I will embrace that beautiful day
When I became a "heart mother".

~Stephanie Husted


Right now Caden is especially in love with me, his Mommy. I have to admit that I truly love it and savor it. As much as I love Kyler, he never went through a period where I was his most adored, favorite person. From the day he was born, he has been fiercely independent, outgoing, and fearless. He has been comfortable with anyone and everyone and loved everyone equally. I love that about him. But I never got to enjoy cuddles and snuggles with him. It's just not his personality.

With Caden, although he is not exactly "cuddly" (after all, we couldn't hold him much for the first 2 months of his life), he has definitely decided that Mommy is his FAVORITE person in the world. It makes my heart both happy and sad when he cries when I leave the room. It makes my heart swell with joy because I know how much I am adored. But it makes me sad to hear him cry for me. What an honor it is to be loved so wholly and unconditionally by my precious 15-month-old boy. He has changed my entire life in so many wonderful ways!

Pneumonia :(

A couple weeks ago Kyler got a cold. He was coughing and had lots of nasal congestion. I kept him home from preschool on the 11th because of it. I was really worried about Caden getting it so we were extra vigilant about having Kyler wash his hands. We were also going crazy wiping everything down and disinfecting things. Unfortunately it wasn't enough... By the 13th (Saturday), Caden started coughing and having a little trouble breathing. I immediately started his nebulizer breathing treatments in order to hopefully catch this and stop the severity.

By Sunday night I was getting more worried. In our area right now there are a lot of sick kids with pneumonia and RSV and both of those could be really dangerous for Caden. I didn't want to take him to an urgent care or ER because he would only be exposed to many more germs. So I decided to wait until 1st thing Monday morning to call his pulmonologist's office and try to get in to see him. Thankfully they got us in right away. He did an exam and told me Caden appeared to just have a bad cold. He said it didn't look like RSV and he said it definitely wasn't pneumonia... yet... He put Caden back on oxygen at night (we had stopped the night oxygen a couple weeks prior to that) and we started a more rigid regimen of breathing treatments as well as steroids in hopes of keeping the cold under control.

By Wednesday morning he definitely seemed to be better and I was relieved. We started to resume normal activities and he seemed okay, just sleeping a little more than normal. However, Thursday he was coughing more and sounded worse overall. By that night he was significantly worse. After 3:30 am, he didn't sleep at all. He was coughing a lot, in respiratory distress and had a fever of 102.4. But I still wanted to avoid the ER. So I called the pulmonologist's answering service at 5:45 and they put me right through to him. We already had an appointment to see him as a follow-up on Friday afternoon at 1 pm. I told him what was going on and he told me to give him another dose of steroid, give him another breathing treatment and bring him into the office at 7:30 am.

Greg had already left for a meeting at the church so I packed both the boys in the car and drove to the doctor's office. Greg met me there and took Kyler back to the church with him. Caden's home health nurse met us at the doctor's office as well. The doctor said Caden most likely had pneumonia and he sent us to get a chest x-ray for confirmation. After we got the chest x-ray, we took it back to the doctor's office and he confirmed it was pneumonia. :( I asked if there was any way we could treat him at home in order to avoid a hospitalization. I wanted to keep him at home if at all possible.

Luckily the doctor was in 100% agreement with us. He said he thought it would be better for Caden to remain at home as long as he responded to his medications. So I went to the pharmacy and forked over $100 in medications and started administering them to my poor little man. By Saturday his breathing definitely seemed better and by Sunday he had absolutely turned a corner for the better. I could tell he was on the road to recovery at that time. We followed all the doctor's orders to make sure he didn't regress at all. He continued to improve steadily.

On Monday he was pretty much back to his normal sweet self. He was playing happily and scooting around the house. Since he was still on continuous oxygen, we attached our extra long tubing to the oxygen concentrator. The machine is in his room, but it allowed him to move freely around the house and play almost like normal. Of course I had to untangle him periodically but at least it was mostly back to normal.

Then this morning (Tuesday) I took him back to his pulmonologist for a follow-up. He said his lungs had “significant improvement” which is FANTASTIC! And, he had us change the oxygen to “as needed,” discontinued the steroid (which makes him a little beast!). And, two of his breathing treatments are also only “as needed.” So we are left with completing his dose of antibiotics, Pulmicort twice/day and Singulair once/day for the next couple months. I would say that is improvement!

God is so good to us. He made sure we could get Caden treated on Friday before the weekend in order to avoid a hospitalization. If he had taken a turn for the worse on Friday night, we would have had to go to the ER and most certainly would have ended up with Caden being hospitalized. And, once Caden was receiving medication to treat the pneumonia, he responded relatively quickly. Our little man is such a blessing and I am so grateful for the progress he has made in his recovery.

Getting this respiratory infection was our worst fear come true. This is what we've been trying to protect Caden from for the last year. We have kept him at home and isolated for 5 of the last 12 months in order to keep him healthy. I think we have done a pretty good job. I think it is a blessing that he didn't get sick before now. At least now he is older and stronger and can fight it off a little easier. Thank you all for your continued prayers as we still need them. Caden is such a fighter but he has a lot of obstacles stacked against him. We know God has plans for him because he has overcome so much already.