Monday, December 28, 2009
Mike and the girls drove home from Church in a sort-of blizzard. Howling wind, driving snow, but not much accumulation. It was crazy weather. The girls and I got geared up and went outside for their first snowball fight. We had a fantastic time.
Christmas was wonderful as always, and we have spent the last few days with family that has to go back to FL way too soon.
Wishing you all a Blessed, Merry Christmas!
Wednesday, December 23, 2009
I met with the surgeon yesterday and he wants to go ahead and do everything all at the same time.
He did say it was ok to wait until after our vacation as long as Tomas did not become symptomatic on the J-feeds. So in late Feb/ early March Tomas will have:
Gall Bladder removed
Morgagni (liver) hernia repair
Para-esophogeal hernia repair
Bowel adhesions repair
I'm glad we have so much time to prepair. It will take me that long to get to my happy place. As I was leaving the surgeon's office he casually said "I can tell you this, I'll be stressed out the day before his surgery." It is a good thing I really like him and I know he was trying to let me know he cares, but wow, that has to be among the top 3 things never to say to a baby's mama before an operation.
Friday, December 18, 2009
Thursday, December 17, 2009
Tuesday, December 15, 2009
The results of Tomas' 24 home monitoring study came back, and on room air he desatted 248 times in 17 hours, that's an average of 14 drops an hour. The low O2 levels were in the 70's and he had bradys down into the 20s to go with them. His pulmonologist thinks it could be from aspirating his saliva, or severe reflux and wants to talk with the GI and ENT to see what to do next. She also wants to run it by cardio to make sure they are ok with it. She has moved him to O2 support 24/7 until they figure it all out.
I started some bolus' into his g-tube and they have gone relatively well. He has a tolerance of about 3 ounces every 3 hours. 4 ounces cause him pain. After too many consecutive g-feeds though he becomes very fussy and uncomfortable. When I give him a break for few days he's back to his normal self. After discussing it with GI he says to just do what he can tolerate and hope it progresses with time. The thing that stinks is I don't know what he can tolerate until I find out what he can't tolerate and by then I have a miserable baby on my hands. GI ordered a renal ultrasound (follow up from a possible issue from months ago) and a PH probe.
I took him to see the surgeon to make sure the new hernias were nothing to worry about. They aren't unless they get trapped. However, the surgeon now want to move up the nissen repair and internal hernia repair due to all the desats. He ordered a swallow test but I am still not sure what he is looking for, or what that has to do with the surgery. I'll have to get that cleared up. I am in no hurry to do that surgery and it will take a major health benefit for me to agree to it.
During the O2 home study, I noticed that our regular machine was desatting even more often and deeper than the study one so I called home health to have them come and calibrate ours. Instead they said I needed a better machine that wasn't so sensitive to movement. So they brought out this honker 7 lb machine and took away my nice compact handheld. Truthfully, I could've refused but I do have to say the new machine alarms so much less than the old one and it has a delay feature so I don't have to worry about 5 second desats. The downside to it is that it needs to be plugged in and it is really heavy. I ordered an adaptor for the car, but still don't know what to use for when we are out and about. If anyone has a handheld (not fingertip) they like that is affordable please let me know.
Today, he had the swallow study that the surgeon ordered. It was pretty much the same as last time. Fine with honey consistency, pooling (although less this time around) with the nectar consitency, and aspirated on the regular consitency for formula. The upper GI showed the formula just filling the herniated part of his stomach and then sitting in his esophogus. Gotta love the J-tube, it is so my friend.
I had a great day with the kids yesterday and today we returned to school for a little bit, just a refresher since we haven't done anything since the week before Thanksgiving. We have family coming into town on Fri. I may not get Christmas cards done this year, although I am still striving for early next week even if they will be late. I have not wrapped one present yet. When the end of the day comes I am so tired I just can't. I am thinking I may have to take Tomas and go hide in my closet with the wrapping paper during the day or it is just not going to get done. Ugghh, and seriously, where does all that laundry come from????
Love to you all,
Thursday, December 3, 2009
Poor Victoria woke up on the Monday before Thanksgiving with her whole face all puffy - off to the doctor she goes. Everyone else is pretty healthy until Wed. night when Tomas gets so stuffy he can't breathe (and you all know that means he REALLY can't breathe). So what to do, what to do - I just gave him some Motrin for the crankies and kept him on oxygen through the evening until he "sort of" fell asleep. He slept 1 1/2 hours all night. That means so did I.
Thursday morning I called the ped's office because he was running a low fever. Of course it was a nursing call center, but at least I had another opinion on how bad he needed to be before I had to give up Thanksgiving dinner and spend it in the hospital. She said as long as his fever didn't spike it was really just about his O2 sats. I kept him on oxygen for the better part of the day, and he did ok. I cooked dinner and made the Turkey, and thankfully he did not get to the point where he only wanted mommy until around 4 pm, when all the cooking was done. My mother, husband, and good friend all did a great job of getting dinner to the table and we actually had a very nice dinner. I'm so glad the home health driver left extra tubing with the oxygen compressor so I can pretty much make it through the whole bottom floor without having to switch to the portable (such a pain).
Friday morning off to the doctor's Tomas goes and Olivia gets added on last minute because all of a sudden her throat hurts. Nasty cold, but not RSV (thank God - still wrangling with the insurance company on the Synagis shot). Mike gets sick and the whole world is about to end until I lose it and pretty much tell him to suck it up, I slept 1 1/2 hours and cooked Thanksgiving dinner thank you very much! The weekend passes uneventfully. Victoria finishes her antibiotics on Saturday, Sunday we do not go to church because I can't imagine passing this gunk on to anyone else.
Monday morning Victoria wakes up with half of her face swollen and her lymph nodes are huge. Off to the doctor she goes again. Same crud, new antibiotics. Tomas had an oncology checkup that afternoon so off to Dallas we go. I find out our dear friends who spent Thanksgiving in our germ chamber are sick (so sorry!).
Tuesday, Mike takes my mom to the airport to fly home. There goes my laundry fairy, and my coffee fairy, and my helper fairy...
Wednesday, Tomas is still a mess and very congested and still running a low fever (really low - 99's) and bouncing his O2 levels all day, so I call the pulmonolgist. Sure enough it is starting to settle in his lungs, more antibiotics, more CPT (chest patting), more suctioning, more breathing treatments, etc... While there the Dr. went over his results from the 24 oxygen monitoring. He is desatting like crazy while awake (14 times an hour) and his heart rate drops with the desat (sometimes down into the 20's). She thinks it is from aspirating his saliva, so he gets a new med to dry up his salivary glands and then we'll see if it helps. Pray it does because the alternatives are pretty invasive. The other cause could be reflux, so Tomas also need the PH probe that the ENT wanted a month ago. The fix for that is the big nissen redo, hernia repair surgery.
Speaking of hernia surgery, the one earilier in the month to fix the trapped bowel went great, but now he has two new ones right around the surgery sight. It is such a lose-lose battle. The only reason he had this past surgery was because his bowel was trapped, and we will leave the new ones alone unless they get trapped too. It really, really is imperative that he gets a lot older before he has the big repair to fix everything otherwise his abdominal wall will not be strong enough to hold the repair.
The bright spot in all of this was his oncology visit. The new group pretty much dismissed him and only wants to check on him every six months. I have such mixed feelings about this. I am very, very glad and grateful that his levels have been stable for about six months. I am just so scared of being out here on my own. I know his pediatrician will do a CBC any time I ask, but just letting that safety net go is so hard. In the end though, it is good news.
I can be so hard to stop asking the why questions. I pray and ask everyone to pray that he doesn't need the big surgery for several more years, but then what happens if he does? Is it because we didn't pray hard enough? Of course not, it is because in the end this is all about God's plan and God's time. My job is to rejoice for this life that was handed to us, and to even rejoice for the struggles that came with it. The struggles have re-shaped us, and re-focused us, and re-formed us to the point where we are closer to living a faith filled life then we have ever been before, and that is truly something to rejoice about.
Sunday, November 22, 2009
The motorcycle show from a few weeks ago was a huge success and we now have a 50cc honda in the garage to prove it. The girls are learning fast and I ordered their helmets and jerseys yesterday. It is really neat to watch how their different personalities play out on the dirtbike. Olivia thinks through everything and steadily progresses. She is now allowed to ride in second gear, and working on going faster and learning how to stand on the bike. Victoria rushes headlong into stuff, jumped on the bike and took off. But she is still scared to move out of first gear and is scared the noise from higher gears will be too loud (she is petrified of loud noises). They both love it though, and beg Mike to take them out every day. Eventually, we'll get Olivia a bike her size (she's learning on Victoria's little one right now) and of course Mike needs a dirtbike too, because none of the 3 bikes he has already can go off road! I'm glad they have something they can do together and that they all love. One day Tomas will fall into that crowd no doubt, but for now he is my snuggle bear.
He has an enterococcus infection (fecal based) from when the Drs. had to replace his j-tube and not use a sterile new one. It would have been nice to get a new one but that meant extra days in the hospital. It would have been nicer had they just not taken it out in the first place, but that was not to be. So a course of anitbiotics and some topical and all should be well.
Friday, November 13, 2009
Yesterday I took everyone to the lab to have Tomas' retested since it's been a week since the low ones came in. It wasn't crowded but there was one lady sniffling into a tissue. I swear I've become like the germ gestapo. I parked us in the farthest corner from her I could. Poor thing must have felt like she had leprosy. Then I had to sign in and realized I used the pen that everyone else used to sign in with. Of course, I travel with hand sanitizer in my diaper bag, the car, the stroller, etc.. So I hope I was covered.
After the lab, Tomas had 2 appt's, and we had about 2 hours to kill in between them (they are about 40 minutes away from home, but only 5 minutes from each other) and I had to get everyone lunch. I thought since it was a weekday afternoon the food court at the mall would be ok. I had Tomas in the stroller with the cover on it and the girls each got to have their favorite foods. Usually, when we do drive through someone is always crying because she doesn't like the chioce the other girl made. Anyway, it was very empty and all was great until I turned around from paying for Victoria's cheeseburger and there were suddenly like 20 people in line there with us. I don't know where they came from. We just found an isolated table and ate. Then we all have to scrub up again before we can touch Mr. don'tgetyourgermsonme. I'm anxiously awaiting the results of the lab to see if we can resume normally scheduled activities!
Tomas saw ENT and GI yesterday. ENT wants a baseline pH probe before any attempts at gastric feeds, GI wants to wait for the probe until after the first attempt. It will be interesting to see how that plays out. I am so nervouse about trying to do a bolus into his stomach. I do not WANT him to have to stay on continuous J feeds but he is SAFE on continuous J feeds. GI thinks he's ready for a bolus, and doesn't think he'll try to vomit it up. Tomas has lost weight, as planned (weird, huh? - read back around mid-September if you need a refresher) and the GI doctors theory is that now that his body doesn't have an overabundance of calories, his stomach will work just fine. I am scared to death. The pulmonoligist called to check on him last night and said not to try anything over the weekend, just in case. As if!
The girls are going to a movie night at another friends house and then Mike is taking them to a motorcycle show of Sunday after church, so I guess it will be a quiet weekend for me.
Saturday, November 7, 2009
Friday, November 6, 2009
However (anyone out there surprised there is a however?), when the dotor came out to talk with us he said the only problem was that the assisting nurse took out his GJ tube thinking it was a G tube. Apparently this doctor likes to remove the G-tube buttons while he operates and then puts them back when he is done. Well, during prep the nurse deflated the ballon that keeps the button in place and began pulling it out, only to realize that it is not the short G tube, but the long GJ that needs to be precisely placed in the radiology dept.
So, while we were in recovery with Tomas, radiology calls to say they have an opening at 3pm and he can go to get the tube placed, but that means going back under general anesthesia only 4 hours after he woke up from the first one, and they don't work with a pediatric anesthesiologist, just an adult one. I was about to throw a fit when Tomas' recovery room nurse (different from the Operating Room nurse) does it for me. She practically screams into the phone that he ABSOLUTLY has to have a pediatric anesthesiologist and she is not sending him anywhere until they get one. So the scramble began.
Meanwhile, a tech from the radiology dept. comes to Recovery to collect Tomas' tube to make sure they have the same one to put in. He said they don't usually do this kind he'll probably have to order it. Well, the last hospital took over a week to get one. It wasn't as urgent then but remember we have no other way to feed him. So now the talk turns to how many days we'll have to stay, because he'll need to be on IV fluids and if it takes too long they'll switch to TPN feeds until the tube arrives. Scramble number 2 begins, this time to try and get the new tube ASAP.
Around 2pm Tomas got sent up to his room and we were still waiting to hear what was going on with finding a Dr. and a tube. At 3pm some transport people came to take him to radiology. I freaked. It turned out, that his anesthesiologist from that morning was still at the hospital and available to do the procedure, and that the GI doc had said it was ok just to re-place Tomas' tube and not wait for a new one. It would have been nice for someone to tell us. What if I had gone to get a cup of coffee or something to come back and find him gone!
Anyway, Tomas came out of anesthesia fine for the second time in 5 hours and had an uneventful night. I made sure they kept on top of his pain meds so there would be no tearing open like last time.. This morning cardiology rounded on him, but doesn't think his bradycardia's are anything to worry about (more on that another time - this post is already going to be long). Oncology came next. His RBC count is still normal, but his platelets have dropped considerably in the last 2 months (although still just above the normal range). Also he has moderate/close to severe nuetropenia (low infection fighting WBC). There is an injection if it gets severe enough, but it can trigger the luekemia cells so the Dr. says he only does it if is absolutely necessary.
He has a follow up with surgery next week and oncolgy in 3 weeks.
Now for the oximeter saga continuation. The home health company called me on Wednesday saying the machine that they picked up on Monday was only able to record 2 hours worth of data because Tomas moved too much. Really, you think a nine month old might move a lot? So they are going to order a special machine that will record even with movements and bring it out next week. So much for getting the data recorded before the surgery.
I am most grateful for all your prayers, and kindnesses. When I stop to think of the prayers that were said for him yesterday I am so overwhelmed. Thank you, thank you, thank you.
Monday, November 2, 2009
I had Olivia in for her pulmonogy follow up this morning. She is allergic to dust and mold and cats. Cats are a moderate allergy but we don't have any (and my husband says now we have the perfect excuse to never own one - not a cat person). Dust and mold are mild allergies - and it is a good thing, not too much mold around here but dust bunnies galore. Can you imagine the pressure if it was a significant allergy? I can just picture myself debating whether to dust or just give her more meds!
Last night Tomas' monitor went off and it was his heartrate not oxygen. Last week the same thing happened and his heartrate showed 34bpm. I thought it was fake because it was so low, and he really doesn't have any heart issues. But with last night's occurence I mentioned it to the Dr. this morning and she said it could be due to the reflux. If I hear one more time that is what is wrong with my son is because of reflux, I may scream. Really loud.
His surgery is on Thursday and I'm ready. There is a small room off of the main church my family goes to and there is a statue of the Pieta. I went in and knelt to say the rosary. My mind was all over the place, absolutly blank. It was definitely a time that I was most grateful for repetative prayer, I was able to make it through even though I could hardly focus. Afterwards, Mass began. The Gospel was Mt 5:1-12:
When Jesus saw the crowds, he went up the mountain,
and after he had sat down, his disciples came to him.
He began to teach them, saying:
“Blessed are the poor in spirit,
for theirs is the Kingdom of heaven.
Blessed are they who mourn,
for they will be comforted.
Blessed are the meek,
for they will inherit the land.
Blessed are they who hunger and thirst for righteousness,
for they will be satisfied.
Blessed are the merciful,
for they will be shown mercy.
Blessed are the clean of heart,
for they will see God.
Blessed are the peacemakers,
for they will be called children of God.
Blessed are they who are persecuted for the sake of righteousness,
for theirs is the Kingdom of heaven.
Blessed are you when they insult you and persecute you
and utter every kind of evil against you falsely because of me.
Rejoice and be glad,
for your reward will be great in heaven.”
The homily was all about how God doesn't call the equiped but equips the called. And how during life's trials we must unite our suffering to the cross and remember to "Be still, and know that I am God". That Psalm has been my meditation point from the day we got the results of the quad screen. To have it handed to me on a silver platter just minutes after praying before Our Lady was a beautiful reminder of how close God is holding my family right now. I do rejoice and I am glad, and I pray only this; to remember from whom all good things come, and to whom all good things return, and to give thanks for whatever time He allows me to serve that purpose.
Sunday, November 1, 2009
Tomas woke up at his usual 6am and I unhooked all his stuff, changed his diaper, and scuffled out to the kitchen for my coffee and realized it was really only 5am!!!! Ugghh.
Friday, October 30, 2009
As the driver was getting ready to pack up everything and go I notice the input jack on the sensor is the same as his oximeter now. I just unplugged his toe sensor from his current unit and plug it into the recordable unit. It works!!! Hooray, moms rock, yadda, yadda. Diver leaves, about an hour later the batteries in the unit die. No charging plug. Luckily I had AAs so I just reloaded, but I am seriously considering putting the dead batteries back in it before they come for the unit on Mon.
It also only flashes an alarm, no sound. So I am sitting cribside for his naps, and not sure how to work tonight. Maybe get another sensor and wrap his other foot and plug that into the old dinosaur unit.
Thursday, October 29, 2009
Tuesday, October 27, 2009
Monday, October 26, 2009
After talking with the surgeon he suggested splitting up the repairs that need to be done. The others will be fixed later. Originally, we were going to repair everything (morgagni, hiatal, umbilical, any adhesions from previous surgeries, nissen re-do) all at the same time. But with the new finding from the ENT (reflux still going on) it is pointless to fix anything in his stomach because it could open up again if he starts retching.
If we want to try feeding him through his gastric port than we need to do it before the big surgery so if he does stomach crunch it won't tear anything open. Then, either it will work and he can tolerate gastric feeds and his stomach doesn't contract and the surgery will have a greater chance of sticking, or the feeds don't work and we go back to j-tube feeds and the surgery will still have a better chance of sticking because we aren't putting anything in his stomach. The key being we need to try before the surgery.
As for the upcoming surgery, I don't have a date yet, just next week. The Dr.'s office will call later with the date. It is supposed to be an outpatient surgery. They'll be keeping him for a 23 hour obs. and if all goes well he can go home. It will be at Medical City. The Dr. said the only unknown is how well he'll be able to get the bowel back in due to the previous surgeries.
I am praying like crazy for the courage to move forward. The last surgery was so traumatic. For those of you new to the blog, Tomas bled out and nearly died twice. The surgical team didn't want to go back in to fix him because it was too risky to lose that much more blood. So instead they kept repacking him all night long and eventually he did stop bleeding. Then he just laid there completely still for several hours until he finally gave out and began dropping his sats. His heart rate took a nosedive. Thank God the respiratory therapist was in the room at the time. She pulled the CODE cord and everyone came running. He was bagged and pulled through, only to have the same thing happen again about 1 hour later. He needed a blood transfusion by then. He was 6 weeks old.
I know with my mind that he is a much healthier baby than he was 7 months ago. My heart still aches and my body still trembles when I relive it though. He did have ear tubes placed in July, but they didn't have to cut into him to do that and I was only stressed because of the anesthesia issue. I need to let the past go and focus on this time. Easier said than done, but I have great friends, an amazing family, and an awesome God to help me.
Friday, October 23, 2009
I just saw his pulmonologist this morning. She is going to order a recordable pulse-ox to monitor and track his desats. She mentioned seizures as a possible explanation. Really at this point it is a very large unknown because his lungs sound so good. It could be his airway shutting for protection from the reflux. One encouraging thing she mentioned was that if it was from the reflux she would recommend surgery to fix the hernia's before putting in a trach. I guess that is better but either way for the reflux he's looking at another surgery. Just the thought makes my stomach hurt. I was really hoping to have some more time (and healing) from the last surgery (for me mind you!).
She is also going to conference with the ENT and GI to see how everyone wants to proceed. I guess right now everything will depend on what the pulse-ox records.
Tomas sees the new surgeon on Mon. morning to evaluate that stinking umbilical hernia. Darn thing has already been fixed once, opened back up, and is now trying to close and trap his bowel with it. If he recommends surgery then we will definitely look long and hard at what else can be done while he's under to make the most of it, since, as the doctor reminded me this morning, he is a high risk anesthesia patient. No kidding!
I have to take him for his flu booster this afternoon and I'll have the pediatrician take a look at the hernia just to make sure it can go through the weekend without trouble.
Mike is taking Olivia to a ghost walk in the historic downtown tomorrow night. Have fun! I hate being scared. He's been trying to get me to one of those things forever. So glad to pass that torch on to her. It can be their special thing. Yuck.
Wednesday, October 21, 2009
Monday, October 12, 2009
Thursday, September 24, 2009
Saturday, September 19, 2009
Then came Wednesday.
He had a barium swallow study. The speech pathologist mixes different consistencies of formula and I give it to him in a bottle. He aspirated right away on the regular formula, pooled the liquid at the back of his throat (which greatly increases probability of aspiration) for the formula the consistency of nectar. However, he did wonderful with the stuff that was as thick as honey. He had about 30 swallows and never aspirated. He also had some cereal and did fine with that. This is great news and he has been cleared by speech to start with oral feeds no thinner than honey consistency. You'd think I'd have been dancing for joy in the radiology dep't. BUT when they turned off the cameras and I was left with him he began coughing and sputtering due to his reflux, and he was fussy baby for the next 12 hours because he had food in his stomach and was uncomfortable. Also, because he had aspirated early on in the study he had a very hard time stabilizing his O2 so he ended up on oxygen support for the rest of the day until he was able to clear out his lungs.
His pulmonologist and the speech therapist who comes to the house are going to have a conference call on Tuesday to plan out a course for him, but I also want to run everything by GI before we start anything because here is the big question: Is his discomfort from having food in his stomach worth the trouble in order to teach him how to eat, or is it a signal of a larger problem that should preclude him from eating altogether? I haven't got a satisfactory answer from the GI doctor. He definitely leans toward the DO NOT FEED approach and that's why he put in the GJ. I know it has something to do with the hernias and the reflux but I am not seeing the big picture. Oh, and throw into the mix the news that he has Bile Reflux as well (gall bladder normally dumps bile into the intestines right where the stomach joins, but his is refluxing back up into the stomach - joy) and I am totally lost as to what to do next. I pray that his new GI (appt. on Wed.) can map out a road for me, or at the very least clear up all the confusion I have now.
Yesterday I took Tomas in for his sweat test to rule out Cystic Fibrosis. While I was in admissions filling out paper work, I hear him working on his diaper. Wonderful, I know it is going to be a few minutes before I get to him. Finally, I get upstairs to the lab and take him into the bathroom, lift up his blanket and it is EVERYWHERE!!! All over his WHITE shoes, his clothes, his stroller, just everywhere. It is one of those moments when you just don't know where to begin. About halfway through I ran out of wipes and had to switch to paper towels. Just a disaster. Change of clothes got left in the back of the car, not the diaper bag. so trailer baby (diaper and t-shirt) went to the lab. Then when I went to lift him up for his test I caught his tube on the stroller. He was crying, I felt miserable. That took about 20 minutes before he felt better. I still feel like (blank). The test was some electrodes strapped to his leg that give the sensation of your leg being asleep. He had to keep it on for 5 minutes. He was so good, playing and laughing with the nurse. After that, she wrapped his leg with gauze and plastic to collect sweat and we had a 1/2 hour to kill. Later, the nurse collected the gauze and weighed it, and there wasn't enough sweat. I asked her if we just repeat it and she said no, that the doctor has to re-order. So the whole morning was for nothing. So frustrating.
As for the rest of us, Olivia and Victoria have started Little Flowers (kind of like a Catholic girl scouts - sort of, but enough to give you an idea), and have joined the children's choir at church. The sun has come out finally after 8 days of overcast/rain.
The upcoming week has a pulmonology appt., speech therapy, oncology, and an appt. with the new GI. Somehow we fit school in here and there and life rolls along. I could really use a laundry fairy though.
Thursday, September 10, 2009
After last week's day at the ER and meeting with Drs. we were in holding until the tube could be placed. Tomas was on reduced feeds and doing fairly well while waiting.
This past Tuesday, Tomas woke up from his late afternoon nap not looking "quite right". I put him on the oxygen monitor and he was desatting a lot so I ended up putting him on O2 support for the rest of the day and then at night as per usual. By the Next morning he looked a lot better.
Wednesdays are my family's outing day for homeschool and since we spent last Wednesday at the ER I was particularly anxious to have a nice day this week out with Olivia and Victoria. Since Tomas had perked up we went as planned to a local nature museum and butterfly house. It was such a lovely day and I really enjoyed doing something nice with the girls (Tomas slept through most of it) (God thing!).
As I was packing up the stroller my phone rang and it was the pulmonologist wanting to know how Tomas was doing. Strange, but I told her about the previous day's events and that he was looking pretty normal at the moment. She then told me that his culture from his suctioning from 2 weeks ago had grown a psuedemona bacteria. This bacteria is usually picked up in the hospital or is associated with Cystic Fibrosis. It can be treated with antibiotics but it is difficult to get rid of and can affect any part of the body. Because of that and the difficulty breathing Tomas had experienced she felt it was urgent that he get a chest x-ray ASAP. So we finished up our Wed. at the local imaging center. It went pretty quick and we were home around 3 hours after the doctor called.
When I left the imaging center the tech gave me Tomas' films and report. The report said all was well. signs of chronic airway disease but nothing acute. I looked at the films and his left lung was still significantly smaller than the right. Now I know this is due to the atelectisis but am wondering why nothing is said about it on the report. So my inner self starts arguing with my outer self. "Drop off the films at the Drs. office".
"No, I'm tired, and everyone wants to go home."
"Go do it, it's only about 10 mins. from here."
"Yes, but then I'll be driving with traffic to get home, it will take twice as long."
"Just do it!"
"All right, fine."
These are actual conversations I have with my brain. However, knowing who rules over that inner voice makes it almost impossible for my outer self to ever win. So I dropped off the films and spent an extra 20 minutes in traffic.
At 7:30 last night my phone rings and it is the pulmonologist again.
"Mrs. Hernandez, did you drop the films by the front office?"
"Oh, thank you so much, I was faxed the report but now that I am looking at the films something doesn't match up."
me: to inner self "Oh, stop gloating."
What it boiled down to is that the Dr. thinks Tomas has Pneumonia but wants to compare Wed.'s x-ray to one taken last month at a different hospital. She asked me to drive out to the other hospital today and drop the films by her office so she can compare the 2.
So this morning as we're preparing to load up my phone rings again. This time it is the GI office telling me that the G-J tube has arrived and could I please come tomorrow to have it placed. It is the same place I have to go to today to get the x-ray, about a 45 minute drive. I beg to be put on the schedule and she finds that the 2 o'clock cancelled (God thing!). Now I have to pick up the films, have a GI appt. and then get the tube placed in the radiology dept. at the hospital. So I call a dear new friend to see if she can watch the girls. She can (God thing!), and we're off.
Poor Tomas got his stoma (hole into stomach) dilated to fit the bigger port with no topical or anything. It was a very straightforward procedure, but still not pleasant. Then when we waited in radiology the tech used lidocaine to numb him for the new tube placement but he still wasn't happy. The whole procedure went very well though and now his stomach is out of the picture. It should help his breathing (no more reflux), and his tummy troubles.
I dropped off the x-rays at the Drs. office this evening, and she wants to see him in the morning.
So far so good with the new tube.
Oh, and I almost forgot, last week as we're leaving the GI's office the secretary tells me that Children's physician group of UT (univ. of TX) is dropping my insurance at the end of the month. It is a good thing only 8 out of 10 o Tomas' specialists are with that group!!!!!!!!
I probably needed oxygen support when she told me, but I have since recovered and am slowly finding new docs, 2 down 6 to go. This too is a God thing but I don't want to admit it. I just keep fighting with that inner voice. I guess as long as I don't do it out loud I'll be all right.
Love to all of you,
Tuesday, September 8, 2009
Wednesday, September 2, 2009
Wednesday, August 26, 2009
He had a dying spell this morning. I HATE that term and I HATE the episodes. He stops breathing because he is refluxing/choking. He goes all limp in my arms and I just have to wait and pray. It only lasted about 15 seconds but that is a VERY VERY long time when you are waiting for your child to breathe. Also, it is just not supposed to happen at all anymore since his second surgery. That means his nissen is not working 100% of the time, and probably means he's looking at a 3rd surgery on the sooner rather than later side.
He just saw his pulmonologist on Mon., and we got mixed news. He doesn't need a CPAP while he's sleeping, but does need to be on the oxygen for at least a year and I have to be good about traveling with it so he can have it for naps. The doctor also wants Tomas to get Synagis (RSV vaccine) throughout the winter, the whole family to get flu shots (we always do) and for Mike to get the H1N1 vaccine. I'd really like to see the H1N1 be out awhile before sending anyone in the family in to get it - just makes me nervous being rushed like that and so new.
We are all just bumming around today. The girls are in cartoon heaven upstairs (which looks like a mini tornado ripped through!). Tomas is using those ultra-flexible legs to kick everything in sight. He actually aims them just like his hands. It is pretty funny. He likes to aim for my esophogus when I'm leaning over him to suction him out. He'll actually re-attempt if he misses that "soft spot" on mommy's neck. Stinker.