I decided to make an appt with a pediatrician to see if they might have any insight on what it might be, but of course being the only pediatrician office in Farmington, the more experienced doctors were all booked and the one we saw was new by 3 weeks!! Really nice, but was almost just as lost as we were about it, but he wasn't concerned very much. Thought it was a cyst, but not concerned! Christian went to the appt with me and I am really glad he did. Having medical background, and I none he knew more of what to ask for then I would have. We wanted some imaging done on his head, like and MRI or a CT scan, but for both you have to be sedated and they did NOT want to sedate a baby!! So they kept trying to tell us to wait a year or so when he is older to do imaging on it. What?! When we suspect that it's growing? we kept pushing, until finally the doctor decided to send us to a dermatologist for another opinion and see if they would refer for him to have an MRI. So I wait about 4 days, get in to the only Dermatologist in Farmington (apparently) and she agreed that he needed some more testing done. So she calls the diagnostic center to schedule an MRI, but they want his Pedo doctor to call and refer him..what? I thoguht that was the reason we were here!! Okay..whatever, let's just get this done is what I am thinking. She said they would call me with the appt. date. When I get home, not 10 mins later the phone rings and it is the pedo doctor saying that they don't want to do the MRI, but just a general x-ray of his head(which is not going to show jack-squat) and an ultrasound. Okay, I guess we have no choice, but to try this first, hopefully it works and and ultrsound will be all they need to determine the next course of action.
A day or so later they call to tell me that they do not see any connection to the brain, that it would be a simple procedure to remove and to see a general surgeon. okay, so I have an appt scheduled about 8-9 days away. But then I start thinking, he is going to have to have this removed regardless and I do not want him to be seen at this hospital, so why am I seeing a doctor here? (too many bad things have happened at the medical center here..hence why Andrew was born at the one in Durango, Co) So it makes sense to have him seen there. I call the general surgeon in durango to schedule and appt. but just as I am finalizing the appt the receptionist asks what ins. I have. I tell her and then proceeds to tell me that they do not accept that ins.! what? Most of the doctors do, why not them? So I call my ins comp. To ask them what I should do. I have to get them to send a pre-auth. form for it to be covered "in-network". So when I call this doctor back to explain what they need to do, she tells me that they normally don't do things like that and he would have to be seen first and become an established patient before considering it! That would be a waste of time!! So back to square one!
Meanwhile, I am calling christian at work to get his opinion on things and he said to try the UNM Children's Hospital in Albuquerque again(yes, again..which is what we wanted in the first place, but appts were months out) we were concerned that sedation for a baby here was just not best for Andrew. So I call the general pediatric surgery there and for the 100th time explain my situation. They put me through to the surgery nurse so I can tell her what I need. She then tells me that because of the place where the cyst is, they would most likely send me to neurosurgery. Wow! this really is serious! I seem to be going up and down with emotions! He's fine..he's not fine, etc. I then have to send a referral from my pedo doctor and faxes of the images..why? that's not going to really show up, and then they would determine whether or not he needs to be seen by a neurosurgeon. In fact he did and the first appt. they had was a week away, the day after we get back from utah!
So after buying new furniture and a new car(I will have to post that later)!! we get back at 2 am. I get to bed at 3 am, get up at 8:30 am to get ready to leave by 10:40 am leave Delia with a sitter and drive 3 hrs to Albuquerque!! I am just exhausted at this point! We talk with the neurosurgeon and he is wonderful!! He says the image from the ultrasound it very good and is all he needed to determine what to do! great! So we schedule the surgery for the next coming Monday, so we can drive up sunday night, stay in a hotel, and be at the hospital at 6:30 AM. But they need to do blood work first and I did not want to make another trip down there just for bloodwork. So I stay in a hotel, just me and andrew so we can go to the hospital in the morning to get this done. that's when his sleeping schedule gets off and he woke up at 2:30 am to eat..I am, soooo tired! I arrive there later in the morning than I thought because I really needed to take a shower and the girl told me the day before I could just show up anytime and they would get me in. I held off from feeding him because I wanted to nurse him right after they drew his blood. I wait 45 mins. before fianlly feeding him, doing this in the waiting room( I am not a pro at nursing in public, so this was a challenge) and then literally 5 mins later she comes to get us! Well, sorry I tell her, you'll have to wait until I am done feeding him! so another 15 mins. later she walks me up to the children's hospital to have an evaluation for anesthasia and then back to the main hospital to wait and have hisblood drawn...you mean I waited for you to have the time to grab the paper work and show me to where I needed to go? Heck, if it was going to take that long, I would have done it all myself!
So I get in to have his blood drawn and he is so strong and wiggly, the nurses have a hard time drawing it out of his tiny veins. About 20 mins worth of screaming and blood oozing from his arm later, I am done! I hate seeing him in pain and distress! What a stressful day this has turned out to be!
The morning of the surgery everything went smoothly. It took them a little longer to get started, but the surgery itself was fairly quick. The doctor even brought out the mass that was in his head! This really impressed Christian that he would take the time to show us exactly what was in his head and that the surgery went very well. They allowed all three of us back there, we had delia with us, and when they brought me back to feed him he was really sad and just coming out of anesthestia. His voice was hoarse because of the tube they put down his throat and it took him 10 mins to figure out that I was trying to feed him, but he finally took. The incision on his head made me so sad! It was 2x bigger than I thought it was going to be! It looked horrible, but it was apparently normal for head surgery. They needed a larger incision to make sure they got it all. There apparently was a hole in his skull and this, most likely, cyst developed between his brain and went up through the hole. It was actually sitting on his brain, but was not attached! thank heaven! Had we waited a year or two, it not only would have gotten the size of a golf ball or bigger, but it could have protruded into his brain causing a whole new set of problems which you can just imagine! When we took him from the hospital he was all smiles and cooing! What a brave boy! I love him so much and I am so grateful to Heavenly Father for entrusting me was such a sweet spirit and for keeping him healthy! Thank you so much to you all for your many, many prayers!! I know heavenly Father was listening and everything went fine! I will keep you all posted on how he is healing. The doctor says that the hole in his skull will grow back and that the scar will heal and disappear a little with time! I have some pictures below of what his head looked with the cyst in it and what it looks like after surgery. I still don't know for sure what it is, but I will update you an everything as soon as I know!
You probably can't see it very well. It's right where his anterior fontannel is.
He is so happy considering the large cut on his head, which they
used "super bond" on so the incision stays clean and closed.
Love this boy!
Wow, this picture doesn't make it look so bad, it looks worse
in person..I'll take this as a good thing for you all! ;)












