whew

He came through surgery great today and they feel very sure the tumor is benign. C still has quite a road ahead, but for right now we are elated and so very thankful. I know I said I wouldn't be back here, but I didn't want to leave you hanging. Thank you so much for all of your recent comments, and thanks to Mel for adding us to the LFCA. xox

the worst

C has a brain tumor. He is having surgery this Wednesday to have it removed. I've decided not to keep posting about it here- I have started a Caring Brid.ge website for him, and it is going to be private. 

Not sure when I will find myself back here at the blog.

catch up

Just got home from three days in New York for work. C stayed home with his daddy and had some intense male bonding time. I dutifully pumped every three hours we were gone, until I needed to in LaGuardia and realized there are no plugs in the bathroom stalls, so I had to go an explosive 8 hours before I could get home and do it at the kitchen table. Ouch. I never thought I'd be a brea.st feeding activist type, but it really does piss me off that in an entire airport they haven't designated a spot for families or nursing mothers. However, I had a great experience with TS.A being kind about hand checking my pump parts and expre.ssed milk so I didn't have to send them through the xray machine.

Anyway, C's MR.I is tomorrow morning. We have to be there at 9:30am, and the test starts at 10:30. One of the radiology nurses called to explain everything and I feel really comfortable with what she was explaining. C's pediatrician has had the imaging expanded through his neck as well as his head, so the test may take over an hour. The waiting area we will be in is exactly where they will bring him to for recovery after the test. I'm glad we will be able to see him the very first second he is done rather than be in the waiting room wondering if they are just not on top of getting us back there. My guess is they really need the help of the parents because C is too little to be unattended on a gurney.

I will post later on tomorrow about how it went. Fingers crossed.

salad days

These days lately are some of the best of my life. C is a joy to wake up to every morning, and I am so lucky I am able to stay home and be his mama nearly full time. We have a warm and comfortable home. The three of us laugh aloud all day, and when I am with K and C I feel magnificent. It is amazing how varied life can be. I am happier, but also more scared than maybe I have ever been. Even infertility has been reframed in my mind compared to this, and it doesn't hold the same weight...

C is scheduled to check in at the epile.psy monitoring lab on Nov.2. He will be hooked up that morning, and will not be able to leave that room until he has an episode, or for three days- whichever comes first. My folks will be coming down for the MR.I Friday and staying through for a long weekend to help keep the house going- letting our dog out, etc. 

I am feeling a little better now than I was... I think having firm dates has helped. In the meantime, I talked to a good friend's fiance who is a pediatric anesth.esiologist, and he walked me through what the entire MR.I experience will be like. It was all pretty reassuring except for the fact that it will take between 40 minutes and an hour. That will be the longest hour of my life I'm sure. 

C's pediatrician talked to the neurologist yesterday, and he wants both an MR.I and long term EE.G to be done. They will both be done at our local teaching hospital, and the MR.I has been scheduled for Friday Oct.ober 30. The EE.G will be done in the hospital's epilepsy lab- apparently the maximum amount of time you can spend there is three days. So if they catch one, great, if not- do we go back again? Not sure yet.

I have a many more questions for the doctors there, like if we can be mobile throughout the hospital or stuck in a room, or if C will be hooked up to a computer or if the recorder will be on a belt so he can be untethered... I am so depressed thinking about being stuck in a room waiting for him to have an episode, and worse leaving the hospital after three hellish days, if they record nothing. His last two EE.Gs have been videotaped, so I'm concerned that we won't be able to leave the lab. Really, I'm concerned about everything.

In the meantime, I am going to look into getting an RN to come babysit C so K and I can get out for sushi dinner and a movie. I know it will be expensive, and I don't know how I'm going to do it just yet, but we need a break. It is not good for any of us to be so somber of the time, and I don't think it is good for a marriage to be so focused on baby all of the time, either. It is obvious how and why we've gotten ourselves to this spot, but I'm going to try and relieve it a bit.

Tonight is C's first night on a sleep ap.nea monitor. We came home with one after his stay in the hospital in August and it only lasted an hour in this house. It had 4 'disconnect alarms' in one hour, because C would move around and the leads would slide away from their intended spot. I couldn't bear to keep using it (even as scared as we are) because it just didn't seem like going without sleep would do anyone any good. Well, now that we know his problem is more serious than we had been told, we have one again. This time it has sticky leads and fingers crossed, it seems to be working well. 

Off to bed.

not great news

C doesn't have ref.lux. 

So... these last few months, where my kid has been turning blue and this a-hole GI doc has been shoving medicine in him... he never had ref.lux!?! I am pissed, and incredulous. I'll fill you in on the last few days.

C's test is called a PH pr.obe. It is a tube that goes up the nose and down the throat that measures acid. There is a sensor on the tip/bottom, which gets positioned at the bottom of the esophagus just above the stomach. The other sensor is higher up the tube- it does the same thing, but measures to see if the acid is coming further up near the mouth. The tube is about 18 inches long and connects to the recorder, which is about the size of a walkman. I had to push buttons on it every time he ate, got laid down or picked up, or spit up. Just after the tube gets positioned an xray is done to make sure the tip is in the right spot. 

We got to the hospital about 7:30 am on Wednesday and right when we were parking the car, C had an episode. We pulled him out of the car, got him out of it ok, then went inside. We went through admitting, then they took us to the endos.copy department to have the "probe placed". We saw C's doctor, who continued his mild to moderate berating of me for asking to have this test done. I asked him some details about how it worked and whether or not it would conclusively show if C has ref.lux, and he said "We KNOW he has refl.ux, and really this test won't be helpful unless he has an episode", which is precisely opposite of what the pediatrician said. Anyway, C *really* did not enjoy having the tube inserted (you can imagine the screams) but it was over in about 10 minutes, and we were allowed to feed him once we got up to his room on the pediatrics floor. He ate well, and thoroughly enjoyed playing with ALL of his toys in the crib. Luckily the doctor did not order an IV to be put in, or any other monitoring, so he only had the one tube to get tangled up in... not two or three.

The cardiologist arrived in the afternoon and did an EK.G and ultrasound of his heart. They were both normal, and nothing eventful happened the rest of the day. I got a shitty night's sleep in the pleather recliner, C woke up a bunch through the night (I'm sure sleeping with a tube in your nose is not very comfortable) and when we woke up he had a great appetite. The GI doc's nurse came at 9 am to remove the tube and we were discharged just after 9. Notice something missing? That's right- he didn't have an episode with the damn probe in! Had one 3 minutes before we walked into the hospital, but none that could be recorded. Frustrating.

Anyway, cut to Friday afternoon. I was at work and got a call from the GI doctor with C's results. Well, to diagnose someone with even mild re.flux, the probe needs to pick up acid in the esophagus for more than 5% of the test: C's result was 3.2%. That is totally within normal limits of what any child's stomach is like. The lower sensor was the only one that picked anything up- the top one picked up nothing. So needless to say, ref.lux is NOT what is causing these spells. The only slightly interesting finding is that the little refl.ux he had was while he was lying down, so the a-hole GI fuckface suggested we take him off of the Prilo.sec and Ery.thromycin, but keep him on a nighttime dose of Za.ntac. Then he said he'd "be happy to see him in the office again in a month". For what, I don't know! I think he was at such a loss for words, and had no other suggestions for me, that he threw that out there. I was in such shock during the call I didn't get angry with him, and I should have. It is understandable for a doctor to be wrong, but this man has given me such a hard time for months for being concerned that this treatment wasn't working... Surprise surprise that he didn't apologize to me either.

So, I called our pediatrician with the results. She says the next step is to get a 30 day event monitor from the cardi.ologist that we can just slap on C's chest when he's having an episode. It will record whatever his heart is doing when they happen, so it will be at least some actual data from the events. But beyond that, C is going to need an MR.I and or/a long term EE.G done at the local teaching hospital. The MR.I is a big risk because they will need to put C under with general anesthes.ia and that is not advised for an infant with an unknown breathing problem. If we have to do the EE.G, we would have to move into the hospital for an undetermined amount of time, and his head would have to he hooked up to a ton of electrodes and wires until they recorded an episode. This could be days or a couple of weeks, given his recent track record. She feels strongly that these episodes are neurologic (she has thought this for the whole time), and her hypothesis is that he has a Chi.ara Mal.formation, which is a brain stem problem that can sometimes cause ap.nea in otherwise healthy people. The only way to treat it is surgically. Brain surgery. OMFG. Our pediatrician will be discussing all of this with the neurol.ogist on Monday, so we should know more soon.

In the meantime, K and I took the CP.R class today and it was fucking terrifying. I feel well prepared to do it in case of an emergency, but hovering over a lifeless rubber baby doll did nothing to calm my already outrageous fears. I am a total wreck right now, and as much as I knew deep down that this wasn't being caused by ref.lux, I still feel like the rug has been ripped out from under me. I am shocked that my sweet perfect baby may have something very wrong with him, and that we are going to have to make some tough decisions about his care that are going to include a lot of risk. 

So I guess that's it for now. I'll post again when I understand more. Any answers to the questions "Holy fuck, what are we going to do? How am I going to keep it together?" would be appreciated. Thanks for listening, as always.

'til Wednesday

Got the results from the hol.ter monitor today- perfectly normal. The cardiologist was super impressed that C kept it on for the full 24 hours- I guess he doesn't have many 6 month olds not rip the electrodes off. 

Next up is the probe on Wednesday, and now the cardiologist has ordered an ultrasound of C's heart. It is a long shot, but there is a heart abnormality that can cause blue spells that they want to rule out. Somehow the oxygenated and non-oxygenated blood get mixed in the heart... it is really unlikely but they're covering their bases. Nice that they can schedule it for when he will already be there overnight- no extra hassle, or copays to fork over.

C has been averaging about one spell per day, and he is a bit under the weather right now with his first cold, courtesy of my mother. She came to visit with "allergies" and now C and K both have it. The pediatr.ician says that ref.lux often gets worse when there is congestion too, so I am aggravated with her. K's family came over last night and none of them washed their hands before they held him, either. Am I being a little wacky, or do other baby mamas worry about this come flu season? I think it is perfectly reasonable to remind people to wash up when they come in the house, but I've gotten some eye rolling lately. Harumph.

This Saturday K and I are taking a 3 1/2 hour hands on CPR class at the hospital. It is expensive ($110 for the two of us) but the peace of mind is worth every bit. K's mom will be watching him while we're there- she's his first "sitter". I can't believe he's nearly 7 months old and we haven't gone out alone together yet, but we have been too scared! I know nothing will happen while we're gone (fingers crossed)...

I'm figuring out how to post to the blog remotely using my iph.one, so I will update Wednesday night from the pleather recliner on the peds floor.