Luck
I've heard it more than once. "You are SOOOO lucky he is so small, you get to stay in that baby phase so much longer. They just get too big too fast, you're lucky he's not growing." While the gushy mommy in me whole-heartedly agrees, the intelligent side of me is saying, Everyday its so glaringly obvious that something is not right. That I'm still waiting to get answers while the whole world grows around him. I've watched the adorable girl at the babysitter, 6 months his junior, start smaller and then surpass him. Now, I'm watching my own daughter, 17 months his junior, catch right up. They can share the same clothes now.
My 6 month old daughter, who is 2 lbs and 2 inches smaller than Toby, 23 months
Lucky that my son stays uniquely adorable, yes, unlucky that along with it brings a shadow of doubt. Doubt that he will forever be "abnormal".
Immunologists are like Vampires
I feel like I may have given the healthcare providers we have worked with a bad rap. I read back my prior blogs and get the sense that I am against them. I'd like to clarify, I'm not. I know that even the most educated, experienced, well versed clinician is human. I acknowledge that there have been instances where I haven't left the room with warm fuzzies, but don't have unrealistic expectations about this whole process. I know that in order to find 1 thing, they have to rule 10 things out. I know that their guesses can be incorrect. I don't hold them accountable for trying and being wrong. I know they are on our team - and we have one of the BEST hospitals around. Something we are beyond blessed to say.
You may also notice that I haven't said our clinicians names. I do that to keep their identities private. I'm not sure they want me name dropping, good or bad, to the whole world. If I were them, I'd prefer it this way - and that's why I'm keeping them confidential.
Our last appointment was with Hematology/Oncology. I remember getting the pre appointment paperwork in the mail, trembling as I read through the documents I had to fill out. Was Toby really sick enough to need to be seen in this clinic? I knew, from our last chat with GI, that Toby's blood work had come back with different abnormalities this time, showing signs of a deficient immune system. This can be caused by a variety of reasons, stress and fatigue being one of them. If you remember, Toby had a horrible scare that morning...To say that he was under stress and fatigued is an understatement. I had hope that perhaps the abnormalities were just a product of the madness of that morning, and it turns out that our Immunologist agreed.
Dr. B, our Immunologist, is a gentle man in his 50s with a calming tone and wise eyes. When he first met Toby, he just sat there and looked at him, silently, for what felt like 5 minutes. Toby, in my lap, just returned the stare, probably confused as heck as to what was going on. So many doctors just come in, start talking, and start poking. He didn't. He just observed, and smiled. It was as if he was trying to telepathize a message to him - I'm here for you buddy, I'm here to help. The whole process was calming for me as well. I gather what he was really doing was checking out the physical characteristics of Toby's adorable body, seeing if anything looked peculiar. As with most genetic conditions, many of them present with certain physical traits as well. We spent 2 hours talking. About everything starting from Day 1 to present day. I'll do my best to summarize what our thoughts boiled down to.
Ever since Toby's labs began with irregularities, its been assumed that he's had an auto immune disorder. All signs have been pointing to one of the many diseases that make up this group of illnesses. We are trying to figure out if Toby's diminished immune system is a primary factor in his health, causing other issues, OR if its a secondary response to something else going on. At first glace, Dr B thinking it is secondary, perhaps to the malnutrition and stress he has undergone. Because Toby hasn't had a huge string of infections in his life, just the every now and then ear infection, he felt that this issues we were seeing with the bloodwork stemmed from something recent and singular - not something that had been with him his whole life. This is reassuring.
We talked about the inflammation in this stomach and intestines, and the resulting effects it has on his diet and vomiting issues. Toby probably doesn't eat a lot because it's painful for him to do so. He probably vomits frequently because his stomach is upset due to this irritation. This all makes sense. But WHY is he inflamed? Dr. B thinks Toby could have genetic predisposition to diseases that cause irritation to the bowels. Because he is so little, he isn't exerting all of the symptoms yet, and those illnesses haven't fallen on the radar yet. The way he sees it, there is definitely something systemically wrong with Toby, we just have to figure out if its auto immune or genetic, or both. We talked about a feeding tube, something that has been brought up before. He thought Toby would do well with one, and was suggesting we explore that avenue to see if Toby would start growing by bypassing mouth feeding and switching to a more manual process initiated by me filling Toby's stomach directly with a syringe. While this is not off the table yet, it is waiting on results of bloodwork he ordered.
Speaking of bloodwork... Let me start by showing you how the day progressed.....
Image 1 is us waiting for the Doctor to arrive, eating our cracker for lunch. Imaging 2 is our break time after 45 minutes of unsuccessful blood draws. Image 3 is our tired faces, after we were done and ready to head home.
After Dr. B formulated a game plan he told us we needed to have more blood drawn, something that's all too familiar. We were going to be doing extensive testing for allergies, immune and genetic disorders. Trying to find anything that was abnormal, while in the process, ruling out conditions he felt were not very likely, but needing to be checked. Ok I thought, nothing we haven't done before, right? WRONG. Because we were in hem/onc we had the luxury of the staff coming to us, instead of us going to the test referral center. Luxury, if you can call it that. We had already been put in an isolation room, as if that weren't foreboding enough, but now we had a special set of folks coming to collect our specimens. I was getting worried when about 40 mins had passed and no one had come in yet. Our case management nurse popped her head in, and gently informed us that the amount of blood needing to be drawn from Toby exceeded the amount they were allowed to take from his small frame. *Gulp*
"They are trying to reorder the labs so that some of them can be shared for different tests, this way we can consolidate the amount of blood we have to draw".
I faintly nodded my head, thinking about how difficult this next hour of my life would be. Shortly after, 2 nurses came in with a tub of supplies, masked up, and started to lay out all of the materials necessary. I was taking pictures and texting my husband, shock face emoticons streaming after every snapshot.
15 tubes. 15 tubes of blood we had to draw. 15 tubes of blood drained from Toby's tiny little body...would there be any left in there?? I was assured that this was the max amount they could withdraw without Toby needing a blood transfusion. That it was still safe for them to deplete his system of this much vital fluid. I shuttered, remembering how Toby's veins blew after 2 tubes last Friday. And how they had to stick him 3 times to get 4 tubes of blood. 15. Ok, Here we go.
We took our usual stance, Toby panicking again, Mom trying not to panic. We were unsuccessful. Again. Twice, once in the arm, and once in the foot, both times hitting the vein, but not producing any blood. In 45 minutes, we had 1/8th of 1 tube full. The nurse asked if she should keep trying the IV she inserted, or if she wanted me to stick him again.
He's going to be miserable either way, so whatever way is quicker, lets do it that way.
Before he had to be stuck again, the other nurse suggested we call in reinforcements. The Vascaular Access Team at children's, whose jobs are to place IV's and stick difficult children and babies. YES. Lets get them in here. And while were at it, can one of them just follow us around everywhere we go???
It took another 30 minutes for them to arrive. This gave time for Toby's sweaty shirt, hair and neck to dry off. Products of me restraining him with all of my might for the first two tries.
The VAC nurses walked into the room. "HOLY MOLY", one of them shouted. "That's a lot of blood for such a little baby." Ok, good, so it wasn't just me!?! And on that note, you do this for a living and your shocked by the amount being taken?!. Oh brother.
"Well, Immunologists are like Vampires" snickered the Hem/Onc nurse, trying to make light of the situation. The three of us just looked at each other with wide eyes, trying to laugh along, but not being able to produce a sound. Toby, sitting on my lap, exhausted, terrified, and confused. This time he was retrained with a blanket, wrapped up like mummy, one of his miniature arms free. The lights were turned off, and a device was placed under his hand that glowed, showing the veins we were searching for. In a few minutes, he was stuck, and slowly but surely, tube by tube was siphoned from his teeny wrist. It took about 30 minutes. Between each tube, stopping to let him rest, as each time she had to jiggle the needle slightly to get it to flow again, causing Toby to shoot off the table in pain.
It was much harder with him laying down. This way he could look me in the eyes. Before I just knew what he was thinking, my face buried in his hair. Now I could see his face. I had to look away. It was too hard. I thought that having my child put to sleep with a gas mask was terrifying, I'll take that any day over watching him get 15 tubes of blood sucked out, all the while I'm pinning him down, wrapped like a mummy, begging me with his eyes and screams to make them stop. Any. Day.
You may also notice that I haven't said our clinicians names. I do that to keep their identities private. I'm not sure they want me name dropping, good or bad, to the whole world. If I were them, I'd prefer it this way - and that's why I'm keeping them confidential.
Our last appointment was with Hematology/Oncology. I remember getting the pre appointment paperwork in the mail, trembling as I read through the documents I had to fill out. Was Toby really sick enough to need to be seen in this clinic? I knew, from our last chat with GI, that Toby's blood work had come back with different abnormalities this time, showing signs of a deficient immune system. This can be caused by a variety of reasons, stress and fatigue being one of them. If you remember, Toby had a horrible scare that morning...To say that he was under stress and fatigued is an understatement. I had hope that perhaps the abnormalities were just a product of the madness of that morning, and it turns out that our Immunologist agreed.
Dr. B, our Immunologist, is a gentle man in his 50s with a calming tone and wise eyes. When he first met Toby, he just sat there and looked at him, silently, for what felt like 5 minutes. Toby, in my lap, just returned the stare, probably confused as heck as to what was going on. So many doctors just come in, start talking, and start poking. He didn't. He just observed, and smiled. It was as if he was trying to telepathize a message to him - I'm here for you buddy, I'm here to help. The whole process was calming for me as well. I gather what he was really doing was checking out the physical characteristics of Toby's adorable body, seeing if anything looked peculiar. As with most genetic conditions, many of them present with certain physical traits as well. We spent 2 hours talking. About everything starting from Day 1 to present day. I'll do my best to summarize what our thoughts boiled down to.
Ever since Toby's labs began with irregularities, its been assumed that he's had an auto immune disorder. All signs have been pointing to one of the many diseases that make up this group of illnesses. We are trying to figure out if Toby's diminished immune system is a primary factor in his health, causing other issues, OR if its a secondary response to something else going on. At first glace, Dr B thinking it is secondary, perhaps to the malnutrition and stress he has undergone. Because Toby hasn't had a huge string of infections in his life, just the every now and then ear infection, he felt that this issues we were seeing with the bloodwork stemmed from something recent and singular - not something that had been with him his whole life. This is reassuring.
We talked about the inflammation in this stomach and intestines, and the resulting effects it has on his diet and vomiting issues. Toby probably doesn't eat a lot because it's painful for him to do so. He probably vomits frequently because his stomach is upset due to this irritation. This all makes sense. But WHY is he inflamed? Dr. B thinks Toby could have genetic predisposition to diseases that cause irritation to the bowels. Because he is so little, he isn't exerting all of the symptoms yet, and those illnesses haven't fallen on the radar yet. The way he sees it, there is definitely something systemically wrong with Toby, we just have to figure out if its auto immune or genetic, or both. We talked about a feeding tube, something that has been brought up before. He thought Toby would do well with one, and was suggesting we explore that avenue to see if Toby would start growing by bypassing mouth feeding and switching to a more manual process initiated by me filling Toby's stomach directly with a syringe. While this is not off the table yet, it is waiting on results of bloodwork he ordered.
Speaking of bloodwork... Let me start by showing you how the day progressed.....
After Dr. B formulated a game plan he told us we needed to have more blood drawn, something that's all too familiar. We were going to be doing extensive testing for allergies, immune and genetic disorders. Trying to find anything that was abnormal, while in the process, ruling out conditions he felt were not very likely, but needing to be checked. Ok I thought, nothing we haven't done before, right? WRONG. Because we were in hem/onc we had the luxury of the staff coming to us, instead of us going to the test referral center. Luxury, if you can call it that. We had already been put in an isolation room, as if that weren't foreboding enough, but now we had a special set of folks coming to collect our specimens. I was getting worried when about 40 mins had passed and no one had come in yet. Our case management nurse popped her head in, and gently informed us that the amount of blood needing to be drawn from Toby exceeded the amount they were allowed to take from his small frame. *Gulp*
"They are trying to reorder the labs so that some of them can be shared for different tests, this way we can consolidate the amount of blood we have to draw".
I faintly nodded my head, thinking about how difficult this next hour of my life would be. Shortly after, 2 nurses came in with a tub of supplies, masked up, and started to lay out all of the materials necessary. I was taking pictures and texting my husband, shock face emoticons streaming after every snapshot.
15 tubes. 15 tubes of blood we had to draw. 15 tubes of blood drained from Toby's tiny little body...would there be any left in there?? I was assured that this was the max amount they could withdraw without Toby needing a blood transfusion. That it was still safe for them to deplete his system of this much vital fluid. I shuttered, remembering how Toby's veins blew after 2 tubes last Friday. And how they had to stick him 3 times to get 4 tubes of blood. 15. Ok, Here we go.
We took our usual stance, Toby panicking again, Mom trying not to panic. We were unsuccessful. Again. Twice, once in the arm, and once in the foot, both times hitting the vein, but not producing any blood. In 45 minutes, we had 1/8th of 1 tube full. The nurse asked if she should keep trying the IV she inserted, or if she wanted me to stick him again.
He's going to be miserable either way, so whatever way is quicker, lets do it that way.
Before he had to be stuck again, the other nurse suggested we call in reinforcements. The Vascaular Access Team at children's, whose jobs are to place IV's and stick difficult children and babies. YES. Lets get them in here. And while were at it, can one of them just follow us around everywhere we go???
Waiting for reinforcements
It took another 30 minutes for them to arrive. This gave time for Toby's sweaty shirt, hair and neck to dry off. Products of me restraining him with all of my might for the first two tries.
The VAC nurses walked into the room. "HOLY MOLY", one of them shouted. "That's a lot of blood for such a little baby." Ok, good, so it wasn't just me!?! And on that note, you do this for a living and your shocked by the amount being taken?!. Oh brother.
"Well, Immunologists are like Vampires" snickered the Hem/Onc nurse, trying to make light of the situation. The three of us just looked at each other with wide eyes, trying to laugh along, but not being able to produce a sound. Toby, sitting on my lap, exhausted, terrified, and confused. This time he was retrained with a blanket, wrapped up like mummy, one of his miniature arms free. The lights were turned off, and a device was placed under his hand that glowed, showing the veins we were searching for. In a few minutes, he was stuck, and slowly but surely, tube by tube was siphoned from his teeny wrist. It took about 30 minutes. Between each tube, stopping to let him rest, as each time she had to jiggle the needle slightly to get it to flow again, causing Toby to shoot off the table in pain.
It was much harder with him laying down. This way he could look me in the eyes. Before I just knew what he was thinking, my face buried in his hair. Now I could see his face. I had to look away. It was too hard. I thought that having my child put to sleep with a gas mask was terrifying, I'll take that any day over watching him get 15 tubes of blood sucked out, all the while I'm pinning him down, wrapped like a mummy, begging me with his eyes and screams to make them stop. Any. Day.
You did it, brave little boy
Home
Toby fell asleep, immediately snoring in his carseat. I drove through the drivethough, as I hadn't had a bite to eat or anything to drink all day, and by now it was almost 4pm. I drove home in silence, eating my fries and drinking my diet coke - Mentally exhausted from what we just experienced, and wondering how I am possibly going to wait 6 more weeks to get these results. It takes a while for the genetic testing to come back, he said. It will take him a long time to analyze everything and come to a conclusion. So now, we just wait.
Toby woke up when we pulled in the drive, and wanted to climb the stairs to our main floor (something he's just learned to do) in the worst way. His little bandaged arms and foot, working mightly to get to the top. He's so proud of himself when he gets there. Its heavenly. His Dad had a suprise for him when we got to the top, a Monsters stuffed animal, Mike, as big as he was, with wounds taped like his own.
I set his things down, kissed my husband and went to our bedroom to lay down. I couldn't stay awake. I just needed to sleep. I fell asleep immediately and was woken up a few hours later with little baby toes in my face. What a precious gift God has given me. I felt guilty that night. Guilty that I had to put my daughter down for bed and hadn't really seen her, or interacted with her all day. She didn't care though. She just smiled and laughed, stuck her slobbery hands in my mouth, pulled my hair. I was still lovable in her eyes. I pray it always stays that way. Please God, let her always see past my imperfections. Please let her always know how much I love her, even when I don't have the time or energy to show it.
Please let Toby always know how much I love him, even when he sees me do things that may confuse him. Even when I'm letting him be manhandled, poked and prodded - please let him understand its because I couldn't bear to live in this world without him safe and healthy.
Thank you for listening,
Lindsey
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