Friday, September 23, 2011

Climbing Back On The Blogging Train, Part 2

Picking up the story. Last I left you, we had seen the cardiologist. The week prior to seeing cardiology was NOT fun. We have added some new mechanical members to our family, and along with that, all the ins and outs and breakdowns that come with them. Oh, and the beeping, lots and lots of beeping. Mostly when you are asleep. This is the oximeter, or pulseox:

It tells us what his oxygen levels are, and what his heart rate is. This particular machine is where we found out that Little Man not only desats, (oxygen goes too low) when he is asleep, he also desats as soon as he lays down. He can not keep his oxygen levels above 92% when he is prone. AND add to all that he is also having heart rates that are below 50 every night. The pulmonologist (sleep/lung doc) said we needed to wake him up every time his heart rate drops below 50. We, mostly my sweet Bald Man did that. Blearily, sleep deprived, tried at least. After we saw the Cardio and found out Little Man's heart was fine, I called the Pulmo and said if it was really important to Little Man's health that his heart rate not drop below 50, they really needed to get us nursing and have someone trained and, most of all, AWAKE, be there to shake the boy when he needed it. No nurse, so we set the alarm to go off at below 40 instead. It hasn't ever gone off at that level yet.

When the pulmo said we needed to start Little Man on oxygen, she shook her head, we shook in our shoes. Between the autism and his behavior problems, we all had our doubts over whether or not our boy would be able to tolerate the oxygen delivery system. A CPAP was out of the question. With all my heart, I believe what happened next to be nothing less than a miracle. We asked for prayers and prayed fervently as we watched the tanks and the oxygen concentrator brought into our home.

(The IV pole is for his feeding pump, which he still uses every day, for fluids and sometimes for food when he isn't eating.)

Little Man can not have the windows down in the car, because he HATES wind in his face. Remember The Swine Flu Debacle of '09? The one where Little Man would NOT wear his oxygen and even hated the blow by? Yeah, well, we remembered it really well. Enough to be afraid of what was ahead of us in terms of getting him used to wearing an oxygen cannula at night. It was very anti-climatic and I mean that in the best way possible. This child, who can't bear to have anything blowing in his face, accepted the oxygen cannula without a blink or a fuss. CREAK, CRASH! That is both his parents falling over in shock, surprise and ultimately, gratitude. Miracles happen.

goofy kid, he couldn't smile while his eyes were open. This is our new normal and he just accepts it. Who knew? If you are scratching your head in wonderment, so is EVERYONE else who knows him! Between the oxygen therapy and the increase in one of his meds, Little Man began to sleep better, much to our relief and sanity.

We have seen the cardiologist, check, everything is fine with his heart. Do they know why he is having bradycardia every night? Nope. Um, maybe it is his VNS he had implanted for his seizures is causing it the cardiologist wondered... So off to Neurology we go. They said it was unlikely, but possible. The only way to know was to turn it off. Oh yeah, I guess I forgot to mention Little Man had started having grand mal seizures at night again. The first since we had the VNS implanted years ago. Turning the VNS off isn't a great idea unless he is inpatient.

So now we had a referral to see the Ear, Nose and Throat doc, (ENT). What I am most afraid of is that they will want to take out his tonsils and adenoids and we will go through all that, operation, and recovery, (with an older kid, ACK!) only to find it didn't help a bit. So, off we went to the ENT and they said.... wait for it..... um, we need to take out his tonsils and adenoids. When I expressed my concerns to the ENT, he said, I had a valid point. And with "syndromey" kids, they have a much lower success rate. I loved that he made up that word, "syndromey" and that he admitted it might not work. He also said that it the least dangerous thing to do, with the greatest chance of helping Little Man, even if it doesn't "fix" the sleep apnea. It will not be a day surgery for our boy, because he is complicated and already having problems breathing, I was informed that we will be being admitted to the PICU. Gut punch. On one hand, I am glad they are going to monitor him closely, but the other hand, my mommy hand, wants to break down and cry for the step up in medical complexity.

So October 5th is the day. I am dreading it. I wish it were much sooner so we could just get it over with. I am not really scared about the surgery, but I am terrified of the recovery. All I can say about it, I am glad he has a g-tube, so he can and will be hydrated, medicated and fed without him having to swallow anything. They will also be doing some more tests with his VNS to see if it is causing the problems and scoping his mouth and throat to check on things. ,

Let me end with every thing else going on, we are enjoying life! Little Man's school and behavior program continue to rock and he is doing really well! In his new school he is a star student and beloved by teachers and students alike. GRATITUDE!
We continue to feel blessed, with our beautiful grand children, with our home, our marriage, our friends and our family. Bumps, and anxiety, but abundantly blessed with so many things!

Thursday, September 22, 2011

Climbing Back On The Blogging Train Part 1

I am back, sort of. One of the reasons why I haven't returned to blogging is a sense of guilt. Of the blogs I had abandoned reading, (all of them!). I felt like I couldn't go back to blogging myself, without being a participant in other blogs. But my life has pushed me to return to blogging, regardless of my reading, because things are happening quickly and I really need to keep track of this stuff, for Little Man's sake, my sanity and the journaling aspect of the whole thing.

Life was busy and good from last you heard from me. I continued to work part time, as a big chain store portrait photographer. (I can tell you now, cause I quit in May) I am not sorry I took the job, not sorry I quit. We parted on a high note, with the company being sad I was leaving, so I felt good about that. It was great while it lasted, and I learned what I needed/wanted to learn. Mostly about getting more comfortable with posing people. DONE! In fact, I am tossing around a thought of doing a posing workshop for beginning phototogs.

Moving on to summer. Summer was kind of rough, summers always are with Little Man.Still, it was MUCH better than last summer, because he has his behavior program working with him. He had a tough time, I wasn't getting enough time away from him, it was fairly stressful. Medically he was stable, so we were okay. Fast forward to August and the Boy stopped sleeping. Not the 3-5 days a month he normally does, but every single freaking night. If I had been working it would have killed me, the only survival tool I had was my nap times. Bald Man was just trying to work and bring in the dough to keep us going.

I knew better than to call his doctor, because the last time this happened, she wanted us to do a sleep study, which never got done. I have a great excuse though teacher, I promise! His last sleep study was scheduled while I was doing this. I suppose I don't have a really great excuse for the next year, except I was busy recovering, then moving etc and most of all, he was sleeping fairly well. I really, really don't deal with his stuff very well unless it gets moved to the top of the emergency list. The not sleeping thing did it. I scheduled the sleep study for July 16th.

Little Man did really, really well, or really, really bad, depending on your point of view. He sure showed them he was capable of sleeping for less than 4 hours in an entire night!

The sleep doc informed us it was hard to get information for a sleep study when they don't sleep. Am I the only one who thinks that is just bizarre? Why would we go see a sleep disorder doctor if our kid slept? The tech seemed super concerned about Little Man's breathing and kept coming in, and at one point, put a nasal cannula on him. Yeah, that was the end of the sleeping for all of us.

I went back on Thurs to discuss the results of the sleep study with the doctor. They were only able to use the pulse ox that monitors oxygen and the CO2 monitor for 20 minutes of his sleep study. It was very significant with lots of low oxygen (desats) and high carbon dioxide levels. She said it needed follow up, so we got sent home with a script for overnight oximetry. The little machine attached to his finger/toe, and recorded the information for the sleep doc to look at.

It was an unpleasant/scary 3 days. Of course it was a HOLIDAY in Utah. I hate Pioneer Day. But that is another post. Normal levels of oxygen that are good for you are anywhere from 100% to 92%. Anything under 92% is bad. Bad for your body, bad for your heart, bad for your brain. This range was his good level! ACK! The top number is the oxygen, bottom number his heart rate.

This low is scary, brain damaging low scary:

Mostly he hung out in the mid 80's. Bad numbers. Never knew I could hate numbers below 92 . But I do. So, finally on Tues, the sleep doc got the report back, and said, um, yeah, would be nice if he could do cpap, but we need to at least start him on oxygen. And along with the low oxygen levels, he is also having nightly episodes of bradycardia.His heart rate is dropping down into the low 40's. So she referred us to a cardiologist too. If you wish to insert a deep, overwhelmed sigh here, it would be appropriate. The visit with the cardiologist ended up being non eventful, thank you very much! Little Man does not have Pulmonary Hypertension, and the ekg and echo of his heart showed his heart had not sustained any damage from his low oxygen at night.

Friday, January 14, 2011

On Hiatus

A quick update and my reason. My laptop died. I am incredibly sad and I feel like I lost my lifeline with the world. Rest in peace Bitty Bytes, you were a good friend!
I still have the use of the desktop, but it is very limiting in terms of my life, because I can't use my snuggle time with my boy as cyber time. So poof, there went my two hours of internet time I used to get. I am saving for a new one, and really, truly, I will be back to blogging, eventually.
Other news.
This Christmas rocked in a HUGE way. Pygmy Child, Brown Boy and Tigger joined us for Christmas. My sweet little grandson took one look at me, held out his arms to meet, and I held him, smiling and crying at the same time. I miss them more than I can say.
We have been having issues the last couple of years with my sons. Let me see how to explain it... well, Oldest Son wasn't speaking to Tank. Tank wasn't mad at Oldest Son, but they weren't speaking. JJ wasn't speaking to Oldest Son. Oldest Son was fine with JJ, but they weren't speaking either. ARGH! One of the upsides of my kids is they have always gotten along so well! It was a source of pride and joy to me that my children loved each other so much. Or did. Or something like that. But you know about pride and all that.
So, as I knew that all SIX of my kids and their various significant others and my six beautiful grand babies would be here too, I have been planning a family picture. My own personal Christmas miracle was my children all making up with each other and I got my picture! I don't have it back yet, but I will post it when I do. It was a beautiful Christmas, filled with so much love and laughter. Probably my favorite memories of it, is laying in my bed snuggling my boy, listening to the laughter filtering up the stairs as my children enjoyed each other's company. I do feel intensely blessed. Peace and Love, Christmas 2010! I got exactly what I prayed for, for Christmas, I hope you did too!
We LOVE living here, Little Man's school and after school program continue to be a huge blessing in our lives as they help us with his problems. I am working and loving it! Just part time, but it has been fun to get so much positive feedback.
Feel free to drop me an email, I am probably more reachable that way currently, I do check my email usually in the morning and evening. (
I hope all of you are opening this new year with a sense of hope, and promise, knowing there are so many opportunities out there for you, to be all of who YOU are. MWAH to all of you.

Thursday, November 04, 2010

Guilt and Other Feelings

I admit it! I am a BAD blogger! I haven't blogged, haven't been reading anyone else's blogs. I promised myself I wouldn't blog again until I touched base with my bloggy friends. I lied. But I do have good intentions if those count for anything.
The year from Aug 2009- Aug 2010 was beyond difficult. People trying to die, (my mom, twice,the boy, once myself once) people dying, (Our beloved Bright Star) Little Man losing his mind resulting in what I am now calling the Summer of My Discontent and our decision to move in hopes of getting the services our son needs.
The school thing was very difficult at first. They put our Little Man in a special classroom at a REGULAR Jr. High. Disastrous doesn't begin to describe the violence and incredible escalation of behavior. I had advocated for him to go to a school for the more handicapped, but the district said it was "too restrictive" and they couldn't legally move him until he failed his current placement. As a mother it was so hard to watch my boy lose his mind and know the adults in his life who were supposed to protect him, were instead failing miserably.
After fights about his emotional and medical needs and him getting sent home every day at 11, the district agreed he needed a different placement.
Sort of rough at first, but then...
Just as I found it difficult to express how incredibly hard things were for our boy and our little family, I find it challenging to describe how things are now.
School: I went to Little Man's IEP this morning. I was told he is charming, he is adorable, he is so smart, he is so helpful, he is kind, he sticks up for and helps the other students. He is funny, he is so functional, he is clever,he is one of the smartest kids in school, he is amazing, we LOVE him, he is a favorite, he makes us laugh.
I laughed with delight through the whole meeting and kept thinking, "are they talking about my son?" yes they were. My heart was singing! I walked out of the meeting on clouds with a big smile on my face.
His after school/behavioral program: Since it is behavioral therapy, and they are working on challenging and changing his dysfunctional behaviors, they have seen more problem behaviors. BUT, in spite of that, they LOVE him. He is NOT their hardest kid. He is doing well there, and best of all, he is happy to go. He is gone a LOT, but it gives Bald Man and I some time together in the evening which we hold precious. AND, neither the school nor his after school program will give up and call us to come get him just because he is being difficult.
Our neighborhood: Nothing prepared me for the joy I would feel when the doorbell rang and there was a child at the door, "can Little Man play?" No one has ever done that before. This amazingly normal question brought me to tears. Our neighbors are AWESOME! One of the moms on our street has a job working with people with disabilities and she has some great skills in weaving Little Man into mesh of the kids on our street. Not only is she good at it, she doesn't hesitate to coach the other children in including our boy in their play.
July had brought me to a place of feeling we were out of options for helping our son, and I felt as though I was staring at the end of a long hallway, and now I was at a dead end. After knocking on every door available, we had no answers and no help. I sobbed and prayed. With our decision to move, I found I was NOT at the end of a long hallway, stepping off into an abyss, instead, I was at a corner. Turning the corner and looking down the hallway, I found open doors! More than one! I found hope, I found knots to add to the end of my rope, I found a guardrail circling the abyss.
Little Man is doing awesome! His great behavior is carrying out to our home and we have seen a huge difference in him. He is happier, less oppositional and less difficult in general.
Like a little plant struggling to grow in a hostile environment, our son was battling to survive. Bringing the plant into a hothouse, giving it warmth, proper nourishment and shelter, the little plant grows and flourishes.
Our son is not just surviving anymore, he is thriving and blooming!
I will say that I am just a bit sad I was not able to provide my son with the support and structure that he so desperately needed. I think my boy was being pushed to his absolute limits in his ability to cope, every single day. Now he is no longer being pushed so hard every day, he has the room to grow.
Moving here was the best thing we ever could have done for Little Man and our family in general. My heart is filled with tremendous gratitude today, and every day.
Oh, by the way, the boy is so stable I was able to find a part time job in a local portrait studio. I LOVE my job, love what I am learning and I am keenly aware this wouldn't have been possible if we hadn't moved and changed things.
Thank you for hanging in there and for nagging politely requesting more information. Now that we are settling in, I am hoping to find my blogging mojo again. I miss it! Mwah to all of you!

Thursday, September 02, 2010


The Tangled Family's newest addition!!!

He was born yesterday, to JJ, BB and Buttercup. (nope you aren't wrong if you are thinking Buttercup is a bit young to be a big sister, she turns 15 months in a few days!) He weighed 7lbs 13oz, 19 inches long. Mom is doing well, although very tired she says. I haven't gotten even a smidge enough time of snuggling yet. My cup overflowth with darling grandchildren, what can I say? I am blessed.

I need your help figuring out a blog name for him!

Tuesday, August 24, 2010

Popping In

Only have a moment, no internet yet at the house, we are at the library. Our new library has HUNDREDS of kids dvd's to borrow. Being a smart and desperate mama, I brought his DVD player along with my laptop to the library. We are both plugged in and very happy.
Settling in, should have internet soon. Boy starts school soon and I can't wait for that. For my blog peeps in the area, lets go do lunch or breakfast to celebrate school starting!!! Whoot!
Little Man, has surprised me with how well he is tolerating the move. He is over all doing VERY well, and I am very, very, grateful. We are taking the move as a opportunity to change some things in his routine that have been needing to change. Like NOT having 200 toys in the bathtub in the morning. (I wish I was kidding, I am not). Now we say, 10, you can only have 10 and because it is a new bathtub, he took the rule change really well. Whew.
I am grateful, happy, and enjoying the new adventure of being some place I haven't been before. Mwah!

Wednesday, August 18, 2010

Too Busy to Breathe!

We are all fine. Nothing major to report thank goodness! We are moving on Sat so I am packing like an insane person. Praying Little Man won't lose his sweet little mind over all the changes. No grandson yet, although BB continues to threaten to have the kid just about every day. He isn't due until Sept 6, so I am hoping he waits, because I am too busy already! I need some help thinking of a blog name for him, any suggestions?