I am behind in updating the blog, but Zach is doing very well on his infusions. He has not been sick at all, and has not been taking his asthma meds (advair and symbacort, plus he has not needed albuterol either). I am so glad that he is doing so awesome with them! I will update on today's infusion after this other story.
Sunday morning, Zachary woke up saying his stomach hurt, his head hurt, he was dizzy, and just didn't feel well. Being the caring Mom I am, I told him to suck it up. He went to church, watched football, went back to church for youth group, and didn't really seem to get any worse. Monday morning, he came walking into our room at 6am completely bent over at the waist saying that his stomach was killing him. I told him to lay on the couch. He laid there all day, and he slept a lot of the time. Even when he was playing a game or watching a movie, he was curled up in a ball. As long as he was sitting or laying, the pain wasn't too severe, except in twinges. As soon as he would stand up, the pain was excruciating!
Finally, by about 230, I thought I should call to the doctor. I knew they would tell me that they couldn't really do anything for him, but thought I'd call first anyway. The nurse told me that he was probably fine and probably didn't have appendicitis. She said he wasn't running a fever or vomiting, and most of the kids with appendicitis are curled up on the couch in the fetal position. I told her that often kids don't have all of the classic signs, he had been nauseous, and HAD been curled up on the couch in the fetal position. She said that I could take him to the ER if I felt like I needed to. I asked Zach what he wanted to do, and he said he wanted to wait until Tuesday to see how he felt.
Around 5, Zach said he thought we should go to the ER. I thought that was a good idea as well. We have a children's hospital here, but the past few times we have gone there, I haven't been happy.
Except for the one time Sarah was hospitalized in Colrado, our kids have always been hospitalized at Children's. I have not been happy with them our last few visits, and have been told by an ER doc (not at Children's) that he NEVER takes his daughter there because she gets taken more seriously at a regular hospital.
SO, when Zach was having so much trouble on Monday, I took him to the hospital where I delivered 3 of my kids. Literally within 5 minutes of walking in the door, we were not only in a room, but we had also seen a doctor. I was impressed. That doctor said that he would bet his medical degree on appendicitis, and that their surgeon wouldn't operate on Zach, so they transferred him by ambulance to Children's Mercy downtown (about 30 minutes away).
This is Zach at Menorah with his IV in
The paramedics came to transfer him
Finally by about midnight at Children's Mercy, he crashed
Once we got moved to the room, there was a light that kept changing color
The doctors at Children's also agree that they think it is appendicitis. He had surgery on Tuesday morning, around 1045. The surgeon said his appendix was inflamed, and had fecal matter blocking it, but it was not perforated. They were able to repair it laparoscopically. He had had swollen lymph nodes down there, near the appendix.
Zach post-surgery
Finally going home!
His incisions. Just 3 small ones including the belly button
Where Jason and Zach slept for a few nights since Zach couldn't climb his loft bed ladder, and so a parent was right there in case he needed anything.
His belly button
Our Children's Mercy Experience: We get there by ambulance about 745pm. We did not get up to our room until 215am. In that time, we saw our nurse TWICE. She never came in to see if he was hurting and needed more pain medicine or anything.
We get up to the floor, and the nurse says "so he already had his antibiotics." I told her that the nurse never gave them to him. She said that the nurse charted that she gave him antibiotics. I told her that he had not had anything put in his IV since we had left the other hospital! I don't know what ended up happening, but the charge nurse got involved. When she looked closer, she realized that the nurse hadn't even ordered them, so there was no way she could have given them to him. Ridiculous.
Then, they could not tell us anything about what time the surgery would be. Jason had gone home to get the kids to school in the morning (Joshua had been home with the girls since about 530, and Jason got home about 115am) and was planning to come back. The ARNP came in to talk and told us that right then, surgery would probably be around 3pm. And by the way, that probably also meant he would be spending another night. UGH. Right after that, my friend who is an OR nurse there texted and said "You didn't hear this from me, but they are changing surgeons for you to hopefully get you in closer to noon." I tell Jason. RIGHT after that, the nurse comes in to tell me that surgery is on their way to get him. Jason is livid because he was worried he wouldnt get to see Zach. He drove 100mph to get there in time.
The nurses told me we would be brought back to the same room, so we could leave our stuff. Obviously I took my purse, phone, ipad, etc. But we left clothes and shoes there. After surgery, they did not take him back there, and this is a huge hospital. It took us 15 minutes to get back to the other room to get our stuff and back to the new place they had taken him.
We get into the PACU where we met with the anesthesiologist and surgeon before surgery. I had asked the surgical resident before how long Zach would be out of soccer. He informed me that if they could do it laparoscopically, there would be no restrictions. I asked the surgeon, and he informed me he could go back to practice as soon as he was up to it, but would be no contact for a few weeks. In the discharge orders, it was written that there were no restrictions on anything at all.
The anesthesiologist said "so he is perfectly healthy aside from this, right?" I said "he has asthma, celiac disease, and common variable immunodeficiency." He says "The only surgery he has had is ear tubes?" I said "He has never had ear tubes." He says "Are you sure?" I said "Yes I'm sure! I have 4 kids and only ONE has had ear tubes, and it wasn't Zachary!" Then he tells me that the CVID and celiac are marked as resolved. At this point I about lose it. Zach was bawling because he was scared and I had it with the incompetency! I said "First of all, celiac disease is a life-long autoimmune disease. That Means it is NEVER going to be resolved. Period. Secondly, the CVID is a relatively new diagnosis and we just started treatment last month. By the way, every single nurse and doctor we have talked to has been given this history including the treatment and medication he is on for it." My gosh.
So THEN, we had been told by our floor nurses, my friend who is the OR nurse, and our surgical nurses that we would be waiting in the Ronald McDonald waiting room. They would have food (which I was super excited about since I hadn't eaten in 24 hours) and a place to relax. The surgical nurses walk us over there and tell us that is where the surgeon will come to speak to us. The lady sitting at the desk tells us that since it is same day surgery, we will have to go somewhere else. I told her that we were inpatient, and I even had the bracelet on. She informed me that appendectomies were not inpatient and that was only for inpatients. I told her we had a room number and had spent the night there. He was an admitted patient. And that it might not be same day surgery anyway depending on what they found when they got in there. I was mad and crying because Zach was so scared he was losing it before we left him. I waited until I got out of his sight and started bawling. So she starts making phone calls and finally someone tells her we can stay.
And finally, our surgery observation nurse was wonderful. She was giving Zach his pain meds every 4 hours as ordered. Then as she is giving us our discharge orders she said, "oh, well these orders are written for every 6 hours whereas mine were written for every 4." I wouldnt have thought much about it except for everything else going on. It was oxycodone so he can have it every 4, but just another discrepancy.
I have a phone call into the patient advocate office and am expecting a call back tomorrow.
Zach did come home on Tuesday evening, and was in a lot of pain until today. This afternoon their seemed to be a shift, and he is in a lot less pain. He had gone 8 hours without pain meds, and I just gave him some before bed. I am hoping this means he has turned a corner!
Poor Zach was due for allergy shots this week, so he got one yesterday. Then today we were doing his infusion. Since he had abdominal surgery, there was no way he was going to allow me to put those needles in his stomach. I had talked to the nurse manager who told me that I could use the outside of his legs or the backs of his arms. He chose the backs of his arms. The infusion went well and took about an hour. His arms aren't too sore of swollen now.
His sisters had their infusion day today too.
We are so thankful for all of the prayers, offers of food, help with the other kids, etc. We are truly blessed.
