At the same time as Toby began to learn to talk, he was also weaning from his ventilator. It started as just 20-30 minutes at a time, and slowly moved to an hour, then two. I can remember the first few times we held him without the ventilator tubing hooked up - it felt like he was free for the very first time.
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| These are photos of my dad (top right) holding Toby for the first time off the ventilator. The other are of Toby playing airplane through the house. He loved to play that game. |
He finally has graduated to only needing the ventilator, when really sick or sleeping. This has been a great blessing because it gives him more freedom, but there are times I really wish we could be rid of the ventilator and the trach completely. We've had nursing care in our home since March of 2007 - that's 5 1/2 years of 8-9 hour day shifts and 8 hour night shifts. Sometimes, we really want our home back to ourselves. In the fall of 2011, he had a sleep study to see if he could make it through a night without vent. support. They tried for awhile, but his oxygen dropped into the 50% range, and he had times where he didn't breathe for 30 seconds.
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| As you can tell from these photos, he HATES sleep studies. It is not fun having all of those probes glued to your head. |
His pulmonologist and the sleep study doctor continually remind me that he needs the good sleep at night to grow and get the energy he needs during the day. Even at the age of almost 7, and with his frequency of recent surgeries, he still needs a nap several afternoons a week. He's just so tired - it requires so much energy for him to be active and do "normal" kid things. He's actually due to have another sleep study in November because he hasn't had one in awhile. We'll see what happens.
In all this push for some normalcy for Toby, and I realize sometimes I push too hard, we have times we are reminded how medically fragile he is. In the fall of 2011, Toby was complaining of stomach pain while he was sitting on the potty for his bowel program. He also retched a few times, but can't vomit because he has a nissen fundoplication. Some doctors say technically he can vomit, but he never has since he had the surgery for it. When we went to put him to bed his heart rate was over 170 beats per minute, and his legs were jerking up. When Toby complains of pain, you know he's in pain because 1) he has a really high pain tolerance and 2) he has reduced feeling from his waist down because of paralysis from his Spina Bifida. That night we had the nurse watch him closely and held back his fluids. The next morning, he looked awful. He was pale, eyes were sunken, and his arms were really cold. He began to have an episode that we call the Harlequin sign. This wasn't the first time, but basically it's where you turn red on half your body and your autonomic system is going crazy.
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| It's a little difficult to tell in these photos, but if you look closely you can see one arm of Toby's is bright red and the other half is normal color. This is the Harlequin sign - and happens when Toby's body is in distress. |
As the morning progressed Toby's right arm began to look more purple - in fact I remember thinking it looked dead. A few minutes later a nurse came in and I mentioned to her that I was really very worried about him - she walked out and in a matter of minutes they had moved him out of triage into Critical Care. Then, things got really sticky - they couldn't get temperature readings from the under-the-arm thermometers and his blood pressure readings were 80's/40's. They FINALLY got an IV in, took cultures, labs, and gave him fluids. Then they did the typical Limited MRI to check if his shunt was functioning and an x-ray series of his shunt tubing to see if it was disconnected anywhere down the line from his brain into his abdominal cavity. They realized looking at the x-rays of his stomach that there was a lot of air and stagnating liquid in his intestines, so they put in a consult to Pediatric Surgery, and ordered a belly CT scan with contrast.
Around 6:45 p.m. that evening, Toby ended up in surgery for a bowel obstruction. I remember the surgeon saying that she thought he may have scar tissue in his belly from prior stomach surgeries that could be adhering to his small intestines and twisting it off. If surgery lasted longer than 2 hours, we would know that he lost intestines and they would have to re-section them; less than that, then they were able to save everything. I sat in the surgery waiting room with Erika (Bruce was home with the kids) - waiting and waiting and waiting. While you are waiting a screen tells you by a code where your child is in surgery. After a few hours, I hadn't heard anything and began to get really nervous. I called up to the pulmonary floor where they already had a room waiting for us and they told me the PACU (Post Anesthesia Care Unit) nurses were looking for me, but couldn't find me. Usually, the surgeon will also come out afterwards and let you know how surgery went. A little while later his code disappeared from the screen. I ended up calling back up to the floor again begging someone to call down to the PACU and find out where he had gone. Finally, I learned they had taken him straight to the Pediatric Intensive Care Unit, and was doing okay. Finally, the surgeon came in briefly to talk to me, and I headed upstairs. It was a very long night, and unfortunately our nursing care that night was one of the worst we had experienced at NCH. As soon as I walked into the room, one nurse looked at me and said, "You need to go back downstairs and get a permanent parent badge." (I still had a temporary sticker on from being in the emergency department all day). Now, this was something I already knew about - in fact - I had just walked past security to get up to the floor. They had stopped me, but I asked if I could go up to see Toby because I was so frantic not knowing how he was. They were fine with me returning later that evening. Needless to say I was pretty furious and upset. On top of all of that, Toby was asking for a drink literally every 5 seconds because he was so dehydrated. The nurses were ignoring me and him - trying to figure out his pain pump. When I finally had a moment to go back downstairs to patient admitting to get my permanent parent badge, I called Bruce and sobbed.
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| Toby was miserable - poor baby... |
He had an NG (nasal - gastric) feeding tube to help drain air from his belly and fluids, and they had replaced his normal small Mic-Key button for a larger tube - again to get all the air out of his intestines. In a nut shell, all of his bodily fluids had gone straight to his intestines, and he was bloated and dehydrated. It was heart breaking to hear him asking for something to drink - literally every five seconds. We were able to dip those pink spongy teeth cleaners in water and moisten his mouth. He couldn't have anything to eat or drink until they made sure his intestines were awake from surgery. Finally after a few days in the ICU - Toby began to feel better and he was released two days before Thanksgiving.
A few weeks ago, I had someone ask me what has been the greatest life lessons we've learned through our experiences with Toby. The biggest lesson has been dependence and trust in God. Second to that, though, is thankfulness. I have learned that in any circumstance we are in - there's ALWAYS to be thankful for, and honestly even in the darkest of moments it has changed my perspective. In this situation, I was so thankful for a nurse that knew to listen for bowel sounds, a great group of EMS guys that know Toby, and the fact that his surgery was done just in time - any later and he would have lost intestines. I often go back to this verse:
I Thessalonians 5:18 "In everything give thanks, for this is God's will for you in Christ Jesus."
It doesn't say to give thanks for what you are going through, but "IN" it - and it's God's will for us to give thanks. I will say it's an exercise of discipline to do this in any type of situation, but I guarantee every time, I've found a huge list of things to be thankful for, especially the comfort, grace, and mercy of my FATHER walking with us in this journey.
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