Update 11/7/14 Noah was discharged from the hospital tonight (Thurs) because his fever remains low grade and he had completed the protocol of IV antibiotics. They dont know whats wrong with him. Tests are still pending. Were just thankful hes home! Thats the update (except the last-ish paragraph) The rest of this will mostly be a light-hearted therapeutic rant, that I think is best told while Im so tightly-wound. This is mostly for ME. For my sanity. First, a little background info: As Ive mentioned, Noahs stomach doesnt empty properly, so empty space in there is like prime real estate. We have to make sure were smart with it. These days, sadly, were not really putting food in there. His feeds, which offer complete nutrition and hydration, get priority over food. Then theres his meds. So over the last several months, I developed a schedule for Noahs stomach that was perfect for him, and me. His a.m. meds are administered via g-tube between 1-3 a.m., his slow feed begins soon after, and his p.m. meds are given between 1-3 p.m. By dinnertime, theres hope that he can eat a few bites. Like, literally 3 bites. Later, he swallows 5 Dasatinib pills. The only flaw is that space has become more limited in his tummy, which was causing his 2 Zolofts, which he was allowed to take at any time, to be neglected often. Knowing how dangerous that is, on Tuesday I asked if it was available in liquid form so I could slip it in with the a.m. meds, but only if it was a low volume. I was told its 5 mL and the prescription was changed. The reason I do the bulk of his meds in the middle of the night is because if hes asleep, hes far less likely to throw up. And frankly, I enjoy not having to hear him gripe about me giving him something he claims he doesnt need. So yesterday when Noah suddenly spiked a high fever at 3 p.m., hed already had his a.m. and p.m. tube meds. We called a nurse practitioner in oncology, and she of course, said to bring him in. He began to cry. I was horribly sick with my own health problems, so Steve and Noah left without me. Ive never felt more lonely in my life. Soon they said hed be admitted. During this time, I messaged all of his medicine schedule info to Steve. He told everyone, repeatedly, that Noah only needed his Dasatinib and Zoloft, until 1 a.m. Soon they were settled in a nice room on 3 South, and then the madness began. First of all, they refused to give him his chemo (dasatinib) believing that hed received it earlier in the day. Steve and Noah insisted that didnt happen but even so, they wouldnt give it. Hes 13. He would know if he swallowed 5 pills that afternoon. Then Steve told them Noahs feeding formula was changed a while back and asked if they had his kind on hand. Its called Compleat. He even spelled it for them. Its made by Nestle and claims to be more of a real food product, which is really all lies because its sweetened with GMO corn syrup, but whatevs.. those Nestle jerks. The nurse checked and said the hospital does not have Compleat. Steve was going to come home and get a case of ours, but Noah was terrified for him to leave. Thankfully, they decided not to switch his feed because it definitely would have made him very sick. If I adjust his feeds by only a few teaspoons an hour, he gets projectile diarrhea. If you think projectile diarrhea is not a real thing, then you werent around when Noah was an infant. I could take you to a church where the nursery carpet is still stained from a diaper change, (unless theyve replaced it) and where flying poop narrowly missed cute, bubbly toddlers, dressed in their Sunday best. We were so thankful that day that we didnt have to explain that one to parents. I know. I MUST focus on this story. The next day, the nutritionist came in and Steve told her he didnt get his feed because we switched to Compleat, and the hospital doesnt have it. She said, Yes we do. She then checked and confirmed that they did indeed have it. So Noah went hungry for no good reason. I cant even.. Upon arrival, the nurse also said they couldnt keep Noah on the medicine schedule we had him on. He was immediately switched to an 8 a.m. and 8 p.m. schedule. They even seemed to reverse the a.m. and p.m. meds. She said he looked tired and didnt want to wake him during the night. Its just a few squirts in the night! Never mind we do this to help him. So he was given some meds too early, and some too late. Im sitting here tonight wondering if Im smart enough to EVER safely get it back to how I had it. All of this because of a hospital stay that was just over 24 hours. Blood work is done at 4 a.m. Later in the day, Steve asked the next nurse what Noahs hemoglobin was. She said, 8.6. Steve told her he was surprised. She asked him why and he explained that it was 8.6 the day before, but we knew it was in the process of dropping. At 3 p.m. a house doc came in and said that Noah would need a blood transfusion before he went home. Steve asked Why? She said, Because his hemoglobin is 7.2 (or something like that). At this point he gave up on wondering why there was a mix-up, yet again. They wear you down until you have no words. Then she said it would take an hour to get the blood, and theyd run it over 3 hours. Steve said, NO, it will take 3 hours to GET the blood because they have to wash it, and then it runs for TWO hours. She then began to argue this with him. He finally shut her down when he said, HE GETS WASHED BLOOD EVERY SINGLE WEEK AND IT RUNS FOR 2 HOURS. This oversight, or whatever it was, greatly delayed discharge. Then they wanted to swab his throat. Keep in mind, Noah had been off his Zoloft for days. And he was back in the dumb hospital, where hes spent much of this year. Hed been crying all day because his brain chemicals were all wonky from a serotonin crash. When they wanted to swab his throat, he went insane. Steve was about to lose his marbles at this point and had me on speaker phone. I asked the nurse if shed bring him 2 mg of Ativan (Noah, not Steve). This is a dose we normally reserve for very traumatic experiences, and though a throat swab was hardly 2 mg-worthy, it seemed necessary. She agreed, and I had a calm talk with Noah about Zoloft, brain chemicals, and how through no fault of his own, his mind was telling him things were far worse than they really are. I told him to tell himself that its okay, that its just his jacked up brain talking. I told him hed get Zoloft when he got home and hed feel like himself again. I noticed he got very quiet and Steve said my chat worked like a charm, which means Noah is maturing because he normally cant be reasoned with once he mounts a runaway horse headed to Crazyville. The doctor allowed Noah to swab his own throat. Steve isnt even sure that swab passed his teeth and the doctor wasnt even looking. So were pretty sure the strep test is going to come back negative. He still threw up, so maybe he really did it. Theres a nurse in Spartanburg, SC that could tell you about the day she had to wear a paper gown for the rest of the day, after swabbing Noahs throat. We found out that this small 5 mL dose of Zoloft has to be diluted in 4 ounces of water.. The bottle from the pharmacy doesnt even say it! So if it werent for the nurses at CHOP, we would have done this wrong forever. Of course Noah refused it at CHOP when he saw the syringes of water. I called the compounding pharmacy in Newark, who ships all of Noahs meds, which cost a ton of money now because apparently creating liquids is expensive and insurance sees this as some excuse to not pay. They agreed with the water thing. They really should put that on the bottle! I dont understand why its necessary. Noah was super relieved to be home tonight, and so was Elizabeths psychologically unstable cat, Luna. She climbed all over him immediately, which is unusual for a cat, as they typically ignore you for the first few hours and pride themselves in proving to you that they never cared, or didnt notice youre home. She sat on his chest and refused to leave. She may not be obnoxiously aloof like most, but she will scratch you if you try to make her move. We dont blame the cat. We blame Elizabeth. She knows why. Noah began to protest when he learned that Id give him his new liquid Zoloft and 4 ounces of water during the night. Ive been trying to figure out which meds he needs to have tonight. Meanwhile, hes been sleeping with one eye open. I went up early on to give him nausea medication and he popped right up and asked what I was doing. I showered and then returned with his other meds. Though I saw him stirring, I proceeded. I used a method I knew he wouldnt expect, to administer the medicine. By the time his eyes were open, we were on the backside of the last 60 mLs of water. It would be empty before he could effectively throw a fit or escalate into a panic attack. Mommy won this round. Unless I go up in a bit and find out he threw up, in which case I will catch his wrath in the morning. Thankfully, the medical supply people recently sent us a big box of 60 mL syringes. They send the most random stuff, and I keep it because I never know what we will need in the future. Theyre called Monoject and apparently the mono means Use this only once, or youre going to die, sucker. Both the box and the syringes are covered in Use once and destroy. DESTROY? Do I need to run over it with my car? Why cant I just throw it in the trash?? And why? All of his other syringes are used until the print washes off. Excuse me while I go hook up his feed.. Well, there were no signs of vomit up there, but his clothes were in a pile on the bathroom floor.. He had a different type of accident. Vague symptoms of GVHD are lingering, but nothings really revealing itself enough to be identified. Theyre still saying he could have a virus. Whatever it is, its been slowly brewing for days. Its eerie. Please pray that his engraftment has reached 100%. His kidneys are only functioning at 50% because of the chemo. The anti-viral had to be reduced for the same reason. They told us the new dose would not be enough to help him if chicken pox wanted to activate. His digestive and kidney problems are only going to get worse until the chemo can be stopped. The pediatric kidney specialist said hed never seen a kid on Dasatinib, post transplant, but hed researched it, and knew it has been done before. Noahs case is definitely not straightforward. I asked wouldnt we be better off blowing his kidneys out than letting leukemia return. He seemed to agree, yes. He said for now, Noahs kidneys are still in a pretty safe place, but theyre being monitored carefully. .Update: Were hoping to get the new engraftment numbers today. But when they tell us.. do we believe them? lol Also, the kidney doctor called and said as of yesterday (Thurs), Noahs kidneys were functioning normally. That was because he didnt get his chemo. Its good that his complete function was restored that quickly. Theyd told us they werent certain hed completely recover after the chemo. Youll also be happy to know that mankind is safe from the used Monoject syringe. Unless a desperate thief goes through our trash, at the risk of being eaten by our dog.
Posted on: Fri, 07 Nov 2014 21:24:25 +0000
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