Hey y'all!!! Remember me? Probably not. I haven't really been present here in a very long time. I won't apologize because I'm not really sorry. I mean, I do miss this space, but I've had more important things going on. My husband has been gone a lot (much more than he's been home) so I've been busy being mom AND dad, while having zero help from family. When Nick was home, we were soaking up every bit of family time we could. Then we traveled home to St. Louis and when we got back, we had just a few days left together before Nick deployed.
In the midst of all of this, we've been busy taking care of Jaxon and trying to figure out what's going on. We finally have answers. Kind of. And since Nick is gone and I have some more free time, I figured I should update you all.
If you follow me on social media, it probably seems like Jaxon is always sick. Yeah, I feel that way too. In all actuality, he hasn't been sick as much as it seems. But lately, goodness, he can't catch a break.
I should start out by saying that (other than being born preemie and having typical preemie issues at birth and the two weeks following) he has been healthy most of his (very short) life. We feel very fortunate that until the age of 9/10 months old, Jaxon never even had so much as a cold; he was a healthy boy. I always thanked God that he
appeared to have received Nick's strong immune system.
But from 9/10 months old until now (almost 13 months old), Jaxon has now had three infections, two colds, two viruses (one of those being right now), anemia, and a hernia.
Anemia and hernia?! Say wha?!
Yeah.........
Let's back up.
Around 11.5 months old (end of April), we took Jaxon to the emergency room for an extremely high fever that had persisted for quite a few days. While there, we noticed an enlarged area on his body. We pointed it out to the doctor and he sent us for an ultrasound. Without giving too many details, we discovered Jaxon had a hernia and would need surgery. The next day, we were in a pediatric surgeon's office. He examined him and said it wasn't emergent and we did not need to cancel our trip to St. Louis for Jaxon's birthday party and baptism. He said unless it becomes enlarged and stays enlarged (at this time, it would decrease and increase in size) or if it became painful, we would be okay to wait. But if either of those issues would arise, he might need emergency surgery.
One month later (May 6th), it's Jaxon's birthday and we're in his pediatrician's office for his one year well baby visit. He was currently not himself; crabby, fatigued and only being awake for an hour before wanting to nap, and loss of appetite. I attributed this to the ear infection he was fighting and his new tooth coming in. During this visit, they pricked his finger to check his iron level (standard protocol for 12 month visit). His iron level came back low so they drew blood and sent it off to the lab to get a more accurate count.
Saturday (the next day) we received a call from his pediatrician telling us that his iron and hemoglobin are very low and she wants us to go to the emergency room and get labs drawn again; she wanted to make sure they weren't dropping even lower.
This is where I freak out. If you know me, have been following my previous blog, or know anything about my own cancer story, you'll know that my story started this same way. I discovered my cancer because I was extremely fatigued, went to the doctor, had low hemoglobin, was diagnosed as anemic, and just one week later, discovered my tumor. I cannot even begin to express the emotions and thoughts I had. Scared does not describe it. But that's a post for another day.
Thankfully, after a traumatic IV insertion, his labs showed that his iron and hemoglobin were remaining the same. We were so thankful we would not be admitted for a transfusion and could go home.
The next Monday, we had a follow-up with our pediatrician. She told us she was going to refer Jaxon's case to a hematologist-oncologist and if he thought it was best to see him, we would receive a call from him.
Hearing the word "oncologist" made me almost throw up. I knew we were more so looking into the hematology side of things, but I just couldn't shake that we were seeing an oncologist.
The next day, I received a phone call from the hematologist-oncologist's nurse asking us to schedule an appointment for two days later. She made it seem urgent and I was so incredibly scared.
A few days later, we entered the Hematology Oncology unit. After checking in, I began to walk forward to the waiting room to sit down and fill out the new patient paperwork when she asked us to go on the other side of the wall, through the door and sit in that waiting room instead. As we rounded the wall, the door said "Immunosuppressed Waiting Room". Nick and I both gave each other "a look" and I thought, "is there something they aren't telling us??" I was a ball of nerves.
Thankfully, after meeting with the doctor, he is fairly confident this is a textbook case of iron deficiency anemia that is often seen in children ranging from 9-18 months. Jaxon already consumes a lot of iron in his diet, but we have to add a liquid iron supplement.
We left his office with an appointment to come back in one month to recheck Jaxon's iron and hemoglobin right before his hernia surgery.
Now we fast forward to present time.
With Jaxon being pretty anemic, his immune system is very weakened. It should have come as no surprise when he caught a bug of some sort. This past Wednesday, Jaxon was a little fussy, was coughing, and he wasn't too interested in eating. Around noon, I noticed he felt a little warm so I took his temperature and it was 100.7. I decided to call his doctor because in addition to this, he was fighting his first ever diaper rash and it was BAD. (I was told the iron could change the composition of his stool and could be causing the rash). I tried various essential oils recommended to me, coconut oil, and various diaper rash creams. Nothing was working. So I called the doctor.
We went in and he had a fever of 103.4. She said the diaper rash looked more fungal and prescribed us an anti-fungal (and it worked immediately!). After checking his ears and throat, both appearing clear, she thought maybe it was due to his vaccines. She said they're known to cause a high fever for about 24 hours up to about 12 days after the shots (we had to delay his vaccines from his one year appointment due to being on meds for an ear infection so he had received them just one week ago). But she said if he still had the fever the next day, to call and come back in because it might be something else.
Next day (Thursday) he still had the fever so back we went around 11am. His fever was 102.6 but ears and throat still looked clear. She swabbed his throat anyway (because strep is going around and she's seen a few kids with it whose throats look normal) and swabbed his nose to test for the flu. Both came back negative.
I had also mentioned to her that his hernia, which used to increase and then decrease, was staying enlarged. She took a look and we noticed it was now darker in color. She advised me to call Jaxon's surgeon and get his advice. She was fearing there might be an infection.
I called and they said it sounds like incarceration (his intestines might have slipped in and are cutting off blood supply) or contusion. I was told to go to the emergency room and get imaging done.
Thankfully, when we arrived at the ER, there was NO ONE in the waiting room. We were taken back within 5 minutes of arriving and the doctor was in our room with 5 minutes of being brought back. He took a look at the hernia and felt it, but didn't seem to think there was incarceration or contusion but would order an ultrasound to be certain. Since we ruled out flu and strep, he wanted to check Jaxon for a UTI since his fever was still so high.
That. Was. Awful! I hope little man never has to get that done again!!!! One nurse held his legs down while I held his arms down and comforted him. The other nurse inserted the catheter to get the urine sample. She just kept feeding the tube in but at a certain point, it wouldn't go in anymore and she couldn't get a sample. After five minutes of trying (which is a LONG time for baby in pain and fighting you) they removed the catheter, switched, and the other nurse tried. More forcing and frustration and she finally got a sample. My poor boy had to have it done
twice. He was SO upset.
After that, we went for the ultrasound. Thankfully he laid perfectly still for those 40 minutes (but screamed the entire time).
When we arrived back to our room, we were told the urine was negative and there was no UTI.
Just a few minutes later the doctor came back in and said the hernia did not appear to be incarcerated or having contusion. He said it seems like just a nasty virus and sent us home, advising me to call the surgeon the next day and ask if he still wants to wait three weeks for surgery since it's enlarged and staying enlarged. I was also told that the next one or two urinations would irritate Jaxon a little from the catheter.
A little?! Let's try a lot! That night, Jaxon woke up every 2 hours SCREAMING bloody murder and each time, he had a wet diaper so I can only assume it was from urinating. We started our day around 7am and he just cried all day; from the fever and virus, from painful urination, from being tired but not being able to sleep from pain, and from his hernia. It's now causing him pain when I manipulate it whereas before, you could touch, move it, and gently squeeze it and he didn't mind at all. I called his surgeon and was told that although it seems to bother him now, the imaging showed no need for an emergency surgery and thus insurance would not approve it if we tried to do anything today or over the weekend. We now have an appointment early next week to meet with him and maybe reevaluate the date of his surgery.
So that's where we are. I feel like he always has something wrong, but in reality, it's just his anemia making him more susceptible to things. In all honestly, two colds and two viruses in his first 13 months of life isn't bad. But this hernia and anemia are a bit much. The past two-ish months when all of this has gone down has seemed like forever, which is making me feel like he's always sick or has something wrong. Bleh!
I honestly think today has been the most difficult day of motherhood I have ever had. Jaxon has never been as unhappy or in as much pain and discomfort as he has been today. We never exceeded 10 minutes today without him crying; except for naps. But those only lasted 30 minutes before he woke up screaming. I am emotionally, mentally, and physically drained. The worst feeling in the world is helplessness. I wish I could take his pain. I wish I could do something to bring him comfort. My boy is not a snuggler so giving him extra love doesn't even work :( I just want to hold him close, rock him, and cry with him, but he won't let me hold him for more than 5 minutes (unless I'm nursing him).
So when people ask how my first few days of deployment are going, I just try to fight back my tears.
Murphy, you bastard, you can take your damn Law and eff off!!!!!
Okay, now that that's out of the way, I'd truly appreciate some prayers, good vibes, a healing dance, magic dust, or whatever the hell else you've got to help my poor boy out. And me. This mama is being strong for her boy but at night, once he's asleep and I can rest my head, the tears begin flowing. I miss my husband; my rock and my partner.
I hope you all have a great weekend. Looks like Jaxon and I will have to nix our plans to hang with friends so we can contain the virus to our house and not spread the germs. Sometimes sharing is NOT caring.
Here's to hoping tomorrow is a better day! Have a great weekend, y'all!
