PING-PONG!!

During the last several days, if there were an item that would describe me, I believe it would be one of those little out of control bouncy balls that kids love and adults hate. Often times, it seems that life throws us around from side to side but sometimes that may be what makes the course interesting and allows us to appreciate the straight and narrow. I’ve become accustomed to that very well over the course of the last year. But following the events of the last week, I’ve felt like I was not going along the straight and narrow or side to side but more up and down. This should give you some idea.
Sunday- Take care of breakfast, meds, changing and dressing so I can hurry up and get a little more work done before I go to work the next morning. Work as fast as I can to make up for all of the work I haven’t gotten done so far. –Guilt: Guilt for not being at church, Guilt for not getting all of the work done yet, Guilt for not being with my kids while are happy and playing. LOW
Get some work done. Eat lunch with the kids. Run a couple of errands. –Relief: Relief for getting some things accomplished. HIGH
Found out that my cousins baby is very very sick and has been rushed to TCH in serious condition. -Sorrow and Concern. LOW
Receive a call from my sitter for Monday that he is unable to work. –Stress- that I wont be able to go in to my office. HIGH
Getting everybody bathed, fed and in bed for the night. My stupid jacked up arm that is suppose to be fixed is aching horribly.- Pain-LOW
Wake up Monday morning and my husband is terribly sick again! -Stress and worried of what any kind of illness in our house could mean at this point. HIGH
Still can’t get any work done because my kids are crazy, I do not have nursing help and Jonathan is sick. – Frustrated- LOW
Lydon climbs out of his crib before and after nap!! –Anxiety with what this could possibly lead to. I cant handle that tube being pulled out again. HIGH
The afternoon is better but I still didn’t get as much work done as I wished. My arm is still really hurting. I’ve cleaned mess after mess from the boys. I’m exhausted and don’t know how I’m going to get up and go to work tomorrow. –Overwhelmed!- LOW
Finally get the day wrapped up and the boys in bed but not before realizing that Lydon has a 101 temperature. –Panic: Panic of what the fever is from if anything…who knows?!- HIGH
Get up at five to get ready but worried about Lydon, my arm is hurting. Decide to stay home a couple more hours and go in a little later- Stress and worry-LOW
Get a text that my mom’s household has a stomach bug! Sympathy and worry of what that could mean for her and thankful we haven’t been with them in several days so we should be safe from the puking bug! HIGH
Finally get to work but feel overwhelmed with responsibility and worry for my boy. Wish I were home with him to keep a closer watchful eye. LOW
A co-worker stops and asks me about how things are at home. HIGH,LOW,HIGH, LOW!!
She send me a sweet encouraging email. HIGH
I work hard and get several things done but leave later than I planned. Traffic is horrible! LOW
I stop and pick up dinner and get home and hear about the kids day. They are both happy. HIGH

I clean up all of the mess. Give Lydon meds and put up a crib tent to solve the climbing out monkey business. Relieved that he and his tube are safe and sound and contained in the bed. Sad that he has a tube and can’t graduate to a toddler bed. Glad that all of this done at 9:00. Bummed that I missed the show I wanted to watch. Happy that I get a few minutes on the couch with Jono and Hollie. Irritated that my arm is still hurting so much. HIGH, LOW, HIGH, LOW, HIGH, LOW!!!!
If you are still reading this, would somebody please catch me and place me gently on a smooth surface so that I can roll along! ;0)

Surgery and Hospital Update

Ok, so I'm going to try to make this one quick but get in all the important details. We are home! Thank you Jesus!! Lydon is napping at the moment which is a lot of what he's been doing since we got home. Aidan is playing with birthday toys (don't 'cha just love it when they get new toys and actually play with them?!). Hollie has gone running...my little health concious teenager! And Jono is watching the UT game with Dad. So, I have a quiet moment to update. I am suppose to be here in our home office working on real work that I have brought home from my job but I just cant focus. I've never really had trouble focusing. I've always been pretty self disciplined (except with food and excercise! ;0))but right now, I am having trouble getting it together. I do really good during all of the procedures and most of our entire in patient stay but when I get home and feel the exhaustion and I go over all of the events of the last several days, that is when my heart aches and nerves seem fried! So, as guilty as I feel about not working on "work work" right now, I'm gonna try to get this post posted and hope I feel better.
So, Wednesday morning, as planned we headed to the outpatient surgery dept. We got up at 4:30 (yuck!) and checked in at 6. Thank you Paw Paw for coming and help get Mr. Aidan to school so that Daddy could go with us. Let me back up just a little. On Tuesday, I called the anesthesia department. I was so worried and so tired of going through the same routine that we go through each time Lydon has anesthesia. I talked to one of the wonderful anesthesiologist there and explained all of Lydons history to her. She said she would pull his chart and look it over and for me not to worry. I felt some comfort in this but didnt really have a lot of expectations. Once we were pulled back into pre-op, the same sweet lady came in to talk to us. She asked us some more details about exactly what happens to Lydon. We told her how he comes in to PACU breathing ok for a little bit but then ends up in distress and becomes acidotic. She said that she saw that from the record she pulled from our last procedure in March but she felt that our biggest problem then was the fact that they gave him Propafol and didnt follow any Mito precautions. Finally we all agree on something! She assured us that wasn't going to happen this time and that she was going to do the safest thing possible. She asked us if we had ever had a non eventful experience and we said no. So she pulled all of his anesthesia records at that point and told us the more she read the more concerned she got.

So, she said we needed a safer more controlled plan than what has gone on in the past. She said she would take him back to the OR and see how he did and go from there but she prepared us to end up in ICU. So, consents were signed, everybody bunnied up and back to the OR we went.

After the procedure ( which ended up being almost an hour late because of all of the discussion of what we should do) she came out and talked to us again. She explained that she gassed Lydon down with one of the "mito safe" gases and got a couple of IV's started. She then switched him over to the IV meds and got a quick tube of blood to check his gases. He was already mildly acidotic at that point. So that sealed the deal and bought him an overnight stay in the PICU. She told us her opinion of what is happening and we all agree that Lydon does ok for a few minutes post op but after that, he just doesnt metabolically have the ATP reserves available to keep up with what he needs to recover from the anesthesia and breathe on his own. He is energy deficient, metabolically acidotic and has poor muscle tone with his narrowed airway as a result of all of that. So, as soon as Dr. R- GI doc was done, they went up to the PICU. By that time, he was even more acidotic so they turned up his IV fluids and remedicated him and kept him intubated for a couple more hours. He did pretty good until they allowed us to come in the room and when he heard our voices, he started waking up. They really werent ready for him to wake up and had planned to keep him intubated even longer and possibly wean him off to CPAP. CPAP is continuous positive airway pressure that basically blows air forcefully enough to keep your airway open. Apparently, that was not what Lydon had planned! In the midst of them trying to medicate again and keep the tube stabilized, he reached up and pulled it out! This sent the entire team rushing around frantic because as strong physically as he is and as strong willed as he is, he just wasnt ready respiratory wise and wasnt really where they wanted him metabolically. But, like we told them, Lydon plays a different ball game with his own set of rules! ;)

They were very quick and got things stabilized within about an hour. During that hour, both of the IV's they had started in surgery blew. They called the pedi transport team who is the best of best and frequently starts IV on teeny tiny infants and frequently are in stressful situations out in the field. It took seven sticks to get an IV in and even then, we couldn't pull blood from it. That was a stressful hour!! So, all in all it was a rough stay. We pushed lots of fluid through him and a full 24+ hours of steroids. They kept him calm and out of pain. When we got home he was SO very exhausted!! He has layed around and slept a lot! Yesterday, he did start eating some. Thank you Poppy for the wonderful chicken spaghetti dinner. It was awesome!! As much as we are drained from the whole experience, we feel relieved because finally, FINALLY
we feel like we have a team who is looking at Lydon and recognizing his issues and doing their best to keep him safe, protected and well taken care of. Hopefully, this whole event changed the course for us and we will not have to fight for him anesthesia wise again. God is so good!

The Good, The bad and The ugly...

Im going to start with the ugly becaue that is how i feel. Just ugly or really I guess mad but being mad is ugly and I dont like it at all. Maybe I'll feel better after I post this update. I am all kinds of mad right now. I am angry mad, sad mad, hurt mad, upset mad, the list could go on and on. Let me explain.... On Friday, I stayed home to allow my arm another day to recover from the surgery I had done last week for a compressed medial nerve. Thats a story for another day. My nurse came in about 7:30 that morning to get Lydon out of bed and she found his entire GJ tube completely pulled out and laying in the crib! This did not make me mad. So we started scrambling to make phone calls and try to make arrangements to get to the hospital to get a new tube placed before the weekend while Mommy was home and able to take care of it. That did not happen of course but this did not make me mad. We talked to the nurse and everyone else who needed to be informed and consulted and finally put him on the surgery schedule for Wed. In the midst of all this trying to come up with the quickest easiest plan to get Lydon taken care of is what upset me and led to me being mad. See, for the last year, every single time we have gone into the hospital for any type of procedure we have ended up admitted usually in the IMU unit because of respiratory distress or acidosis. So, the idea was brought up about replacing Lydons tube in Interventional Radiology instead of the OR with traditional anesthesia. This is where I got mad. I am mad because in a city as big as Houston and all of the WWW, I feel like I am doing all of this and making decisions like this alone. To clarify, I do not mean that in the truest sense of the word. I have my wonderful husband and my family and friends who often send us uplifting messages and words of encouragement and listen to countless conversations but it angers me that I feel alone with this diagnosis and everything that goes along with it. In the beginning, I felt like maybe having a close knit group of moms was the silver lining in having to deal with such complicated medical issues but now, I feel isolated from the mito community and I’m really not sure why? Maybe it was because I sought a second opinion? I dunno… I went to who I was referred to…we went through months of testing and we were then politely dismissed from that office. I sought a second opinion just like I was told to but somehow it seems like that is when things changed. Thats what so weird to me. I didn’t want for Lydon to have these problems. I’m not able to “wish” his stomach into working or not working. I’m not the one who makes him react to the anesthesia he receives. I am the one who holds his little body and feel the tremors during the night and sees the glassy look in his eye. I am the one who cleans up vomit everyday and sees when he is too exhausted to play. I am the one who gives the slew of meds several times a day. I didn’t look for somebody to label him anything in particular. I just wanted somebody to recognize his issues and connect the dots. That is what happened when we found/saw Dr. Frye. Now he has received an incredible opportunity at Arkansas Children’s Hospital. This makes me very sad for us and what we may have to go through all over again to establish ourselves with another neurologist here in Houston but I am sure he will be such a blessing to the people of Arkansas. So, that’s the ugly. I was mad because all I wanted to do Friday afternoon was call or text or email an experienced mom who lives with all of the daily issues that we do and get some advice about the Interventional Radiology route. I’ve never faced these issues as a mom before. So, here’s the bad. I’m sure you may have already figured this out but “the bad” is that Lydons tube is out and we will be having surgery on Wed. We have to be there at 6 am in the morning for the tube replacement. The good news is that Jono will be with me and our wonderful pediatrician is on service in the hospital if we do indeed end up admitted. The other good thing is that we have an incredible family, some incredible friends and a great group of doctors with one of the best hospitals in the country. And above all…we serve an awesome God who meets our every need. Say a prayer for us in the morning. I will update when it’s all over.