Friday, November 2, 2012
Halloween was so much fun this year. I guess I was feeling a little crafty after our kids painted some pumpkins. My creative juices kicked in and I decided to make Samuel a costume. Not just any costume... A Dream-Come-True Costume! I have made a costume for each of my kids at one time or another and most of them required little skill but the fact that I made them myself heightened the anticipation of seeing them in their outfit. This was Bella in her ladybug at 7 months old.
So, I set out to make Sam a "Blu" costume. Blu is the Blue Macaw character in the movie Rio, which is a movie about exotic birds on an adventure in Rio, Brazil. The main character is a bird who happens to not be able to fly and within the great adventures of the larger plot, he acquires the inner strength and confidence to spread his wings and fly. The symbolism was not lost on me when I watched him falling in love with this movie. He asks to hear the soudtrack over and over and over... must be the latin in his blood! He loves to dance to it and it is like he becomes Blu everytime it comes on the screen. SO.. long story short I had a mission and little time to make it happen. I found a blog where another mom made the same costume and tried to figure out how I could do it with materials I had on hand. I worked on a cool head piece on Saturday night. I never knew paper mache could be so easy! It was made over the form of a plastic fireman's hat and some paper plates and foil. That needed to dry over night and I figured I would do the wings the next day after church. Well.. the hat had not dried and all of a sudden all my children were convinced that they should be other bird characters from the film as well. I was blowdrying the head and painting it, cutting a million little felt feathers and trying to please the diva in a 5 year old who wanted her Jewel character's beauty to shine through without covering her whole head.. ahhh!
A plan took shape.. there were even sketches by Bella! 4 hours and a ton of felt later, with burned-to-the-crisp finger tips from the hot glue gun along with lots of healthy laughter with my girls..we managed to turn out a flock of exotic birds in time to attend the Fall Fest at our church. I did cheat and borrow a parrot costume for Max from a friend. (Thank you, Tiffany!)
Bella won a cake on the cake walk and as an added suprise it turned out to be one made by our neighbor. Sam saw his sister play the donut game and had to try it himself. He actually got some nibbles off without hands! We then visited with cousins and checked out their cute costumes.
Later on the actual Halloween Night, we hit the road with neighbors and came home with loads of loot and some very tired little birds.
To hear the music Sammy loves from his favorite movie...
What better time to experience change and appreciate abundance than in the month of October? The autumn season with the cooler weather, rich landscape hues, falling leaves and crisp breezes - all signs of harvest. Every year I look forward to the prospect of pulling on my favorite pair of boots paired with my coziest scarf, filling my mug with a hot pumpkin latte, and listening to giggles from little girls in my back seat bound for the local pumpkin patch. These cozy images are made even better by knowing we are on our way out of hurricane season and will experience the holidays just around the corner.
In looking back over the last month, we managed to get through a series of events that could have been impossibly difficult - some of them anticipated and others of the more unexpected variety. Our schedule just seemed incredibly packed this month but overall, I am overwelmingly thankful that everything is going well.
Here were some highlights of October for us..
The month began with a return to Gainesville for an appointment with Samuel's surgeon and a sleep study for the pulmonologist. While on the trek south, I enjoyed the quiet of my own thoughts, considering the prospect of signing on to do the final and permanent placement of Samuel's gastric stimulator during this trip. The process has already been a leap of faith thus far as each time we headed to the OR we were trying something so new to us and with little clear evidence or guarantee that it would solve his gastric issues. But we stayed the course through mishaps and illness, soon to find him vitally changed and doing so much better overall. He is now managing bolus feedings of 150 mls through his G port at one time, which had not been tolerated since he was 8 months old. He is digesting by stomach and not just directly into his intestines now as his gastric emptying is much improved with the pacer. We also see improvements in areas not related to gastric functioning. He began talking more, starting to run, singing and trying to count. His eating by mouth is still slow but I guess even that area is more than before. We saw him resting better and brightening up at the prospect of participating in family activities, which is huge for his siblings and his own quality of life.
Overall.. the temporary pacer on his GI has been going very well. He has rarely been in pain which is by far the best side effect. My take on this whole stimulator success story is that we are seeing success frankly because he is functioning better at baseline with less energy outlay. I think because he is not wasting energy on pain and a dysfunctional stomach, he is better able to take strides in other areas. He is trying to eat more by mouth now but this area is still a challenge and improvements have been slow. My greatest praise is to see him off the feeding pump for most of his daylight hours. He gets boluses during the day and then goes on his pump at night.
The drive down went ok but then he was tanked out and was asleep before his Dr. entered the room. At the appointment, they found his stimulator to be still working, which was suprising as they expected it to have dislodged by this point. We had noticed in the few days before the appt, he was having gut slowing days and questionable periods reminiscent of past issues, so his surgeon adjusted the settings up and asked us to go home and try that for a week and then come back for new probes (which meant yet again another endoscopy, this would be #4, to place new probes for temporary placement). He explained why we are still trialing it and should wait on doing the permanent placement. He said insurance is another hoop they have to jump through now and by fully testing the worthiness of this measure, we should have no issue there.
We followed this appt with dinner that night at our friend Nate's home with his sweet family. I notice alot lately that Sam is quite overwhelmed to be around lots of new kids and I think he probably needs more exposure to this for social development. I often forget how much time he spends in our home alone with his family and nurses. Meeting this family really was God working in our lives. It really helps to have such kind and supportive friends who share and understand this journey personally.
It was hard leaving their house and heading over to the sleep study since I knew Sam would hate that so much. They put a million electrodes all over his head and body with every other mask and sensor possible. I worried he would never fall asleep for how badly he was hating having all the wires and probes all over his body. But he did and then after an ABG (arterial blood gas) in the morning, we were off and on our way back home.
At home, we got back into the swing of things and Sam seemed better at the new settings. He attended some family activities and had more energy than usual. We have kept up his weekly therapy but made some recent changes to get OT back into our home environment. This helps him by allowing less illness exposure and a less taxing schedule. We had also noticed his 1 hour sessions out of the home were sliding down to half hour sessions, so this new schedule should help him get the most from his therapy. He still goes out of the home to see his PT, who has seen him since he was 3 months old. She is working with him on learning to jump and balance and lift his legs when he walks along with so many other new goals. Sam is particularly loving her little trampoline. I am also working on filling out some developmental charts to figure out where we stand in our progress over the last 2 and a half years.
It is quite amazing to see how far we have come! Sam has fought for every step along the way. Now watching Max leap through each of these milestones, I can appreciate how important they all are. It is hard sometimes to see it happen so easily for Max after watching Sam works so hard at it. I am expecting Max to walk on his own within the month and he is busy crawling and cruising all over the house.
One new change this month was that we had our transition IEP meeting to begin the process of transitioning Sam into the public school system. His Early Steps Program will end. It will mean many new formal evaluations in the months ahead and I am hoping his best interests are always at the heart of these discussions. He will likely attend a local school for therapy and receive hospital/homebound education until he is a little older and stronger. When they talk about what would be offered for him in the PreK D classroom setting, all I can think of is illness, setbacks and exhaustion. It is a 5 hour day and our boy is rarely ever awake half that time in a block during the day. Cognitively, Samuel is doing well. He understands things very appropriately and his communication is following with great strides. It is probably the most obvious delay. His gross motor and fine motor are coming along as well and the gap is far less noticable to me. There are things his typical peers are doing like riding tricycles and running without falling, but we will get there eventually. Recently Samuel was fitted for a medical stroller this month as well which will be outfitted to hold his equipment. I wish we could use a normal stroller forever, but as he grows, it won't be as adaptable and hold equipment effectively. This will allow him better options for when he just can't stay up on his feet.
Soccer practice and gymnastics have kept Sofia buzzing around. She has made goals at most of her games and really seems to be into it this year. Bella has been taking some time off sports as she struggles with some excercise-induced respiratory issues, most especially during allergy season. We are looking forward to a church cheer program that will start soon. She is into reading and singing in the choir. She also loves going to bible study. I have been attending choir practice again while she is in bible study. Jason even took over with the whole gang so I could attend a girls poker night. Book club is next week and I hoping to make that one as well, but I know I am really blessed to have such a supportive husband and sometimes it is just too much to ask of him after his hectic schedule. Our busy schedules are somehow holding together. We do the dance of Jason spotting me with the boys while I take the girls to their functions, but it would just be so much easier if Sam could handle keeping up with their pace and the exposures that come in those environments.
I have recently began venturing into potty training for Samuel. This is always a fun time for mothering! I think this may take awhile. He understands when he has to go but has a bit harder time getting onto an actual potty and does not always communicate himself clearly to ask to go, so this may prove difficult for him. It is also an opportunity to work on yet another new skill, that of helping him dress and remove his own clothing. Potty training boys is clearly unchartered territory for me and I have not mastered how to best explain the concept of aiming at the cheerios yet. :) I guess I will be seeking more advice from my friends with sons!
About a week after we came home Sam and I drove back down for the probe replacement. It was on a Sunday and I was thinking we would be back home late Monday or early Tuesday. I always hate leaving when the girls have so much going on but luckily our family pulls together to make it less of a disruption to their daily routine.
That first night in the hospital, the nurses got an IV placed suprisingly quickly for how difficult this always is with him. They had placed him in this plastic bean bag of sorts that molds around the child and then when a switch is flipped it is sucked dry of all its' air and hardens so he can't move a muscle. This is all done over in the "situation" room. Moms of complex kiddos know this room well and when they send you there you can figure the nurses are not feeling so lucky that day! Anyways, this resulted in Samuel sweating buckets of fluid and acting like we sucked the very life out of him, so we may opt out of the bean bag next time! :) I have to always remember that heat intolerance is very dramatic for him, so the plastic sealed around his body may not have been our best choice.
The position of his IV was not good that night as it was in the side of his foot and was kinked in such a way that all night the occlusion alarms kept beeping off at every move of his ankle. He somehow still slept hard for most of the night but then woke up mad and yanked his g-tube out. I had drifted into sleep in my chair and woke to a ton of people huddled all around the crib trying to place it back in. This is no biggie with a simple G tube, but with stimulator wires, it can be more of an issue. I figure this is when the probes were probably dislodged, because the next morning when they took him into the OR, they found that they were no longer in proper placement. Here is a pic of how Sam deals with pre-op nerves.. haahaa! Nothing like a little angry birds game time on mom's I-pad! Meanwhile there were adult men on the other side of the curtain crying over getting an IV for their procedures not realizing my 2 year old sitting there has had more procedures, surgeries and IVs than he could imagine. I am proud of my brave boy.
Leading up to the procedure, I met with the anesthesiologist as usual to do the paperwork and discuss the plan. The IV general anesthesia and intubation are really my concerns on each and every procedure even when it is even a simple, non invasive one. He has had many many anesthesia procedures and it never gets easier to let them roll him off to the OR. In this case, they were doing yet another endoscopy to thread in these little probe wires through his stoma and screw them into the stomach lining. Should be no biggie as we have done this like 3 times by now.. right? Never speak too soon. Well, I had explained about how Sam should not receive any gas (as I always do) since he has had adverse reactions in his history. This has so far been well-respected.. until there was little choice on this occasion. I guess when they got in the OR, the IV from the night before was still not working great and in order to find better access, they had to give him a little gas. They still were unable to secure a better IV before he was out of the OR and in recovery. It took longer than usual which had me a nervous wreck sitting in my hard little plastic chair in his room.
When he first came out, he seemed to be doing okay. We saw his surgeon right away and then again a few hours later in his room right before we started his meds and feeds. He was doing fine so he said to plan on heading home the next morning. It was about this time that the bottom seemed to fall out for Sammy. He started working harder to breathe, dropping sats pretty significantly. He was not tolerating even the slowest amounts of meds or food. He was acting delirious and in an angry haze, he was even trying to hurt himself. His IV had finally gone completely bad and we were dealing with nurses shift change and a new roommate admission. I was watching him decompensate and was shocked when the peds surg resident was less than aggressive in finding any solutions. We were trying blow-by of oxygen near his face but he was yanking his head in other directions. He was sounding junkier and junkier and retracting and nasal flaring.. obvious signs of distress for him. But again noone was doing anything. Then he lost his not-so-great IV for good. This can be life-threatening when you have no other way to keep him hydrated.
I asked the resident what the plan was and could not believe he actually said it was up to me whether they called a picc team in to try for another IV because he was so difficult for access. I said that I felt we had little choice since nothing was being tolerated in his tummy and he was already crashing. He acted like all balls were in my court and seemed hesitant to make any affirmative decisions. I guess he hated the prospect of a central line after such a simple procedure and of course that was not our hope either.. but we needed access so someone at least needed to try again for the IV. It was so weird. The nurses thought he was acting bizarre. Well then of course the stat team could not get one and then the PICC team struggled too. They finally became so concerned by how bad his sats and breathing were going that they challenged the resident to please notify our surgeon on how things had changed for the worse and to get on the ball for getting labs and respiratory to order oxygen by cannulla. He was at this point having tachy periods and was dropping sats into the 60s and 70s, usually coming back up but consistently not getting up to the 90s. It was interesting to hear the nurse telling the resident, "You handle this or I will" because I had so much more trust at this point in this charge nurse than I did in this young resident. He responded to questions on why he was not concerned by saying,"he does this at home." I was very quick to jump in at that point and tell them that "no, he doesn't just hang out in the 70s on sats at home!" I guess in a learning hospital, these situations are learning opportunities.
I was glad when our surgeon swooped in and started getting things under better control. Within minutes Sam was transferred to a higher unit with better monitering. He was put on higher flow of 2 liters of O2 and was finally responding. He had a chest x ray which showed some infiltrate from the gas but we knew that most of the junky breath sounds were from him not fully inflating the lower bronchi. He gets areas of atelectasis during metabolic and physiological stress. He began percussion therapy or what we call the "banging therapy" since they come round and just bang on him for awhile. Sam usually hates it at first but soon realizes it helps him. He then gets to keep the handmade banging tool himself. We knew he was doing better when he started getting up and banging all over his crib with this toy. He can be such a wild man!
Labs were pulled in this process and they consulted the pulmonologist. Two came by with differing views. Our pulmonologist said the sleep study results were pretty bad and that she thinks he chronicly traps CO2 and that we need to infuse him with some additional oxygen support at home and see how he does. She thinks this is all related to his aerobic vs anerobic respiration and how it is basically a cycle where as his cells don't process energy well, he then has weak bulbur and respiratory effort, he doesn't fully open the lower bronchi and then traps CO2. Sometimes we see low low sats but sometimes sats look okay but he still looks completely off in this weird way. It makes it hard to know when he needs help. The idea is to infuse him with the all-precious ingredient - oxygen, so that he has more energy to be more effective with his respiratory system and other systems overall. Of course our fear is that he would lose his personal drive to breathe without the mechanical support. And that is what we still don't know. For now we are using oxygen intermittantly as needed.
They tried to get an ABG (arterial blood gas) on four occasions but this is harder as it is deep in the artery. Each stat and flight team would fail and another would come in to give it a go until we finally all agreed that he had miserable circulatory system and we should just let it go since we might never secure the test. It would have been helpful info but not at the detriment to his need for rest. I think later that night we did finally get a decent VBG which looked pretty good but I did not agree with the nurse that a VBG was basically as helpful as an ABG for checking his blood gas. Anyway, he was already looking better to me and I felt things were on the mend. After discussion the situation with his surgeon, we all agreed this was really likely prompted by his reaction to the anesthesia. There is a medical journal study on how sevo flourane gas is an inhibitor of complex 1, which is one part of Samuel's respiratory chain that is already deficient in function.
In the days that followed we slowely saw improvement in the IMC and he was weaned down to about half a liter of oxygen, which is how we took him home. Before going home, he had a day where he wanted to get out of his crib a bit. So we walked down to the playroom to see the acquarium and play for a few minutes. It was only 5 rooms down the hall but I could see he was still struggling and tired. He did okay and even tried to paint a pumpkin with the child-life volunteers who brought breast cancer awareness pink pumpkins to the floor to be painted. Samuel went to lift the brush against gravity, but clearly just felt too weak. Moments later, he fell out of his chair flat on his face. It is hard to watch him feeling this weak. This is typical for him though following a rough patch, so I just knew we needed to take it slower.
We were blessed by so many friends praying for him that week and definitely felt loved and lifted, of which we can never fully express our thanks. Our stay ended with a happy visit from Sam's buddy Nate and his mom Amber right before our discharge. We all went out to lunch at Olive Garden on the way to the interstate and she was able to help me process some of the new changes with trying to utilize the oxygen more full time at home. It helps to talk with someone who has been there and knows the frustrations but yet is also seeking answers and solutions.
Since getting back home, it has been an adjustment having the long tubes all over the house.. but it is worth it when I see him having longer "up" periods overall. Some of our nurses have been more supportive of this change and others would rather not hassle with the fuss of getting the cannulla placed in his nose. It is still something we have to pressure him to do initially but bribes of lollipops for wearing his "noses" help and once it is on, he actually seems relieved and happier. This all has made me moody at times.. not at them, because I know we all hate to make Sam do things he doesn't love, but because I need to process this and still be sure to work at getting him better respiratory support.. even if it is not convenient and seems like a step backwards.
The day after we returned home though, I had a personal wakeup call that I needed to watch my own limits. Sam, Max and the nurse had joined me out to run to get his meds and of course all the no-sleeping and stress caught up with me. We were heading into Panera for some lunch and I started having a crazy pain in my diaphragm. Still not sure if it was low blood sugar or just not enough rest or what, but I had intense pain across my diaphragm, had a had time breathing and felt weak and tingly all over. I nearly fell over my own feet. I wasn't nautious but I felt like I was falling apart. Strangers were approaching me to offer help but I couldn't figure out what was hitting me so hard. I was starke white. I ended up back at my father in law's house on the couch letting him check my vitals because I honestly feared I was having some kind of heart attack... maybe I was just plumb worn out. SO strange. After a few days of weakness, I was back up and moving and about that time Jason felt like he was run over by a truck, so maybe it was a virus or bug of some kind. I am just glad that is behind us and we are all doing fine. It is in moments like those, that I feel the weight of being healthy and alive for the kids.
That first weekend back home, we had Maddox Alexander baptized in the contemporary service at our church. He was lifted up and surrounded by our loving church family. I snapped a few cute pictures of my little guy in what Sofie called his "girly dress". He really is a beautiful child of God and a blessing to our family. My heart overflows just watching him laugh. He is growing soo fast and is filled with such joy. He is 9 months and already all over the place. I love to hear him squeal and play with his siblings. He will be a great companion for Samuel. They are only 5 lbs apart as he now is nearly 23 lbs of chunky sweetness. It feels like twins to hold them but the weight is distributed differently and Sam is no longer babyish in facial appearance.
As for the rest of October, it has been a mix of running kids all over town to various birthdays and school functions. There was a Fifties Day at the school, of which my kids were dressed in outfits my mom lovingly made for them. Thank you, Nana! I loved attending Sofia's class activities and watching her with all her buddys.
I also had the privledge of attending Sofia's pumpkin patch field trip and one for Bella to the local orthodontist. Poor Bella says it is just not fair that Sofie has already had two long field trips while her grade did an hour at the dentist!
I will have to follow this post with some pictures from the fun we had this year making our own costumes for Halloween. Sam and I have another trip coming soon to Gainesville and hopefully we will know then when he will be getting the stimulator permanently placed. I just don't know what they will do until that can happen. It may mean returning to the GJ tube while we wait. I just keep praying we are making the right decisions.
This week, I am lifting prayers for the victims of Hurricane Sandy and all those working to help them. I am praying for a friend having surgery tomorrow and another recovering from one. I am praising several new babys and pregnancies and homecomings of loved ones and friends.
Ecclesiastes 3:1 (KJV)
To every thing there is a season, and a time to every purpose under the heaven.