Thursday, September 24, 2009

It is the end of another appointment filled week.

On Monday Tomas was checked by his pulmonologist and she said he is doing much better and to keep him on the new meds she tried. They are drying up his lungs ,and I can hear an improvement, so can Victoria which I'll get to in a few lines. Olivia has also started with the same pulmonologist for her asthma. After last months attack she really needs to be followed for awhile. The doctor gave her some new meds to use and a new action plan, so I am looking forward to a winter without pneumonia for her.

Tuesday, the girls and myself had our first "family" dentist appt. The girls went first and did great, then kept an eye on Tomas (in the stroller) while it was my turn. I sat in the chair, they reclined it - and I thought oh no I'm gonna fall asleep. The tech had to take a bunch of x-rays though so that kept me awake, right up until she said she was finished and going to go get the dentist. Sure enough, I awake to the dentist gently smiling over me!!!! This is how amazing God is though, as Tomas' story came out, the receptionist told me she has a 5 year old with severe and irrevocable seizures and he is at risk for sudden death. She then gave me the number of a home health ministry that will send someone out at night to watch the monitors so I can sleep.

Wednesday was the appt. with the new GI doctor. He has some new ideas to try and would basically like to train Tomas' stomach to allow food in it without retching, gagging, etc... He would do this by letting Tomas get hungry and only giving him small amounts of food at a time. The doctor told me he would most likely lose weight but that he has had a lot of success with this process. We really have nothing to lose so we'll give it a try. If it doesn't work, we'll move back to the way he eats now and he'll eventually gain the weight back. He also said that if it works than the future surgery to repair all the hernias would have a better chance of taking since there would be no stomach contractions to tear things open again.

Wednesday was also the day the girls have their Little Flowers meeting and choir practice. While driving from one to the other, Victoria calmly says, "Mom, I have some REALLY bad news." I'm thinking maybe she spilled some water, forgot something at the house, had an accident, or something along those lines. But no. It's "Mom, I have some REALLY bad news.......Tomas isn't breathing."

I wish I knew how to type the sound of brakes screeching along the pavement. Fortunately, there was a place for me to pull over, and I ran around to the backseat. He was fine, sound asleep and breathing so QUIET that she thought he had stopped. Remember I told you his new meds were working! I then had a discussion with Victoria about how she did exactly the right thing because she is the one sitting next to him, and he did sound different from how he normally does, but that next time she needs to spit it out a little faster. My friend said she was just trying to soften the blow, but there is some news that you just can't make sound better. At choir practice poor Victoria didn't know the words to the new songs and could not read fast enough to keep up on the sheet music so she sat in her chair and swung her legs, watched the ceiling, watched the floor, looked behind her, etc... After practice the choir director asked me if there was something "special" she needed to know about Victoria. Luckily, I found this funny.

Thursday was a trip to Dallas for Tomas' oncology visit. His labs looked great and I finally caught a break with the whole insurance issue. His doctor said that pediatric oncologists were such a specialty that usually they had no trouble continuing care with existing patients, and that she would discuss it with the finance dept and get back to me. She also cleared him to only need check ups every other month instead of every month. Awesome!

Today, was a visit to my doctor that I have been trying to see for the last 3 months. Then in the afternoon I took the girls to the park because it is beautiful here. We ended the afternoon with a quick run to the pediatrician for a rash that Tomas has had for about a month. She didn't think it was anything major - just some hard skin bumps that might or might not go away. There are not a lot of them and I was relieved it wasn't anything to worry about.

Tomorrow I am going to tackle the ROOM full of laundry, really, it is amazing we have any clothes left. The girls have a movie date at a friends house at night, Sunday is for the Lord and than next week I will try my best to get caught up on school. NO DOCTORS APPOINTMENTS!!!

Have a blessed weekend everyone,


Saturday, September 19, 2009

Tomas's GJ tube is working nicely. He had some stomach pain during the first 2 days, I think from just clearing out anything that was left from before the tube was placed. After that he was great and very happy.

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.

God bless,

Thursday, September 10, 2009

Hmm... Where to begin...

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

I am still waiting for an appt. from radiology to place the GJ tube. I called today and they said it was being ordered and hoped to be able to do the procedure later in the week. He also has a barium swallow study coming up to see if he is still aspirating. It is a bit ironic though because even if he was able to swallow properly we still couldn't feed him because now the reflux is back. The test is to see if we can continue his oral therapy and so the pulminologist knows what is going on with his saliva and airway and lungs

Wednesday, September 2, 2009

I wanted to update everyone with what is going on with Tomas. When he was 7 weeks old he had surgery to prevent severe reflux that was causing him to suffocate. We have known for a few months now that it was not holding 100% of the time because he was spitting up occasionally. That is not supposed to happen - food can only go down not up-after the surgery. However, it was VERY intermittent and the doctors wanted him to get bigger and stronger before attempting another surgery to repair the first procesure and and fix the 3 hernias he has.Unfortunatley, on Thursday morning he had one of his more dangerous suffocation episodes and then last night a much milder one. Now that the frequency of these episodes is increasing we have to do something about it. The girls and I spent all day at ER having Tomas evaluated and tested. Tomorrow I meet with his GI doctor. At this point we have 2 options, either the surgery (which by all accounts is a HUGE deal) or finding an alternate means of feeding him. His doctor has said in the past that our last option before surgery is to move his feeding tube from his stomach directly to his upper intestinal tract. I am fairly certain that is what will happen tomorrow.Hopefully, tomorrow's procedure will buy us some time. Thank you all for praying for us. It means so very much, especially when things get tough.