Oximeter story: Part 2

Ok,  the driver came this morning. It was a different driver than yesterday but one who had been out here many times and is very aware of Tomas' life. He looked at his finger and said, "It's not going to work." They sent a new unit but with another fingertip sensor. This one is softer and would make a great teathing toy I'm sure, but still too huge. He said that was all they had and the office had called the doctor and she said we just needed to find a way. I am doubtful of that because his doctor is an amazing woman, but that is another story. Anyway, I go and get my medical tape, which is the duct tape of this house and can perform mini miracles on it's own. I do my best taping job and it lasts on his finger about 2 seconds. It is just too big. His finger isn't even long enough to hit the sensor tip.

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.

So, if I hadn't had a really great day with the girls I would be so ticked right now. Tomas' pulmonoligist order a 24 hr recordable pulse ox LAST THURSDAY to try and figure out what's causing his really deep desats. I called on his home health company Tuesday asking where it was, they said it would come on Wed. I told them that I had to leave the house at 2 that day and wouldn't be back until after 6. I get a cell phone call at 5:30 with the delivery guy outside my door. I told him I wasn't going to be there for another hour. They have to deliver it today instead. Ok, fine. The poor driver shows up and asks where the person is that it is for.  I say it's for the baby. He says - It's never going to fit. They sent a fingertip oximeter!!!! For a nine month old!To keep on for 24 hours! So now they are going to deliver the correct one tomorrow. Arrgh. The whole thing is we are trying to get this all done before the surgery next week. I don't know what is wrong with him, but his breathing is SLIGHTLY more labored than normal and he will only stay awake for 1-2 hours at a time. If it keeps up I'll have to take him in, but he acts completely normal (playful and happy) when he is awake, so I hate to have him poked and proded for nothing. Decisions, decisions...

2/3 of my heart giggling away in my bedroom, the other 1/3 was in the bathtub. Baby giggles have got to be the BEST sound known to humankind.

Tomas does have to have the surgery for his hernia. The doctor said it is not reducing (pushing back in), and that it is an acute issue but not an emergency. He wanted to do it this week, but I asked if he thought it could wait until next since Mike is out of town until Friday. And Halloween is on Sat. and I would be so sad if we couldn't do anything with the girls. He said it could, as long as it doesn't show any danger signs. I am well aware of what those are since he's had the hernia for so long. If anything should come up Mike will, of course, fly home. But since he's already planned it he may as well finish up this week and then be able to take a few days off next week.

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.

Quick update:
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.

I really need to get a new lullaby CD for Tomas. I play it on repeat while he is napping and until the rest of the house is asleep at night so he can have some "white noise". It is not that it gets on my nerves or anything it is that the song "You are my Sunshine" is actually quite sad. Sometimes it can be very difficult to keep the fear of the future at bay and that song does definitely not help. Most times I don't even notice the scars, but there are times when I am playing with him and kissing his belly and the past just comes rushing in, and other times during the most ordinary tasks the word leukemia just explodes in my brain and it is all I can do to keep it together. He is desatting quite a bit when he is asleep and had two large desats while he was awake today so I'll see what pulmonology says tomorrow. Can you have apnea while you're awake?

I saw his new ENT today and got mixed news. His laryngomalacia is resolving and only considered mild, but during the scope the Dr. found significant swelling of the larynx, indicative of severe reflux. As you all well know Tomas is not supposed to be refluxing anymore. First, because of the nissen and second, when the nissen didn't hold we switched to the g-j. So, it looks like he may be refluxing his secretions. If this turns out to be the case and is severe enough it could mean a trach.

I am also closely monitoring his umbilical hernia because it looks like it is closing. That is great as long as it closes with all of his bowel on the inside of the abdominal wall. There is a small part that I can't push back in so I'll call the surgeon in the morning to see what he thinks.

He had his 9 month check up last week and the Dr. stressed me out by asking if he could pull up to a standing position yet. Umm, no. Then he asked if he was standing at all. Umm, nooo. Well how about sitting up? Ummm, nooo - 2 major surgeries, 1 minor, 3 procedures requiring general anesthesia, 2 intubations, 2 near coding bagging episodes. No he can't sit up yet. But Tomas' PT put me back at ease on Tues. and said he is making great progress (which I had also thought and was quite happy with until the Dr. visit!!!). Talk about a disconnect between patient and doctor.

Despite all the unresolved issues he really does look great these days. He finally got some teeth! the first one came on the 16th and the second 4 days later. That means my fingers take a beating during his oral exercises. They are so sharp when they first come in! I took the kids to a pumpkin patch the other day and he loved it. They all had a great time and he really enjoyed being outside. I'll ease up a little when he gets his RSV shot and try not to worry about germs so much.

It is funny how I notice so much more with him than I did with the girls. Do any of you remember when your baby was first able to reach up and pull a hat of of his head? I was actually cheering him on yesterday. I will regret that now that winter is coming, but it was so cool to watch him connect the thought process with his muscle control. It is the moments like that that make everything else ok. God is so good beyond anything I can comprehend. Really, think about it, that small tiny moments of pure joy in the middle of folding socks (no laundry fairy as of yet!)can erase so much pain. Not only that, but you go back for more, and are willing to take the bad to get to the good. Simply amazing. Simply God.

Mike and I got some wonderful news the other day. All of Tomas' holes in his heart have closed. He is not even considered a cardiac patient anymore and only has to go back in 1 year for a follow up. I am so happy I can't describe it. His cardiac issues were never his biggest problem but they always exacerbated the other ones because many doctors were afraid to use certain drugs, or classified him as high risk . Now he can be considered normal for treatments. Plus that is 1 doctor off the list of the ones he was seeing regularly.

He has had some great social growth in the last few weeks and has now figured out that if someone else is holding him and he can see me than surely I can't be the one holding him, and he cries. I like to call it the "not the momma" syndrome. The big deal about that is it is average for his age - meaning he is on target for at least one of his mental milestones. He has also figured out that if he can't see you, you are still there. He lifts his head out of his car seat to look over at Victoria, puts his head back and waits a few seconds, and then does it all again. Very cute. He has started vocalizing a lot more and now will call out for attention, especially if the girls are nearby. I can't imagine why, but he seems to love the chaos they bring with them.

I also followed up with the new GI doctor and we went over the plan again to get Tomas on oral feeds. First step was to reduce his calorie intake back to the normal concentration on his formula. I did that last month, and his weight remained the same for that month (no surprise). He is 9 months old and weighs 15lbs. Next up is to retry him on regular infant formula (milk protein based) instead of the Nutramegin. I'll be trying that next week to see if he can process the proteins without fussiness. All the while his calorie intake should be small enough to make him burn through a lot of his body fat so he can get hungry. When he is ready I'll take him off his continuous feed for several hours, allowing him to get really hungry, then give him a small amount of formula by tube into his stomach. The idea is that he should be so hungry his stomach will process the food quickly and not try to retch or gag or reflux it up.

If we can retrain his stomach then the battle is won. It then becomes a matter of teaching him how to eat. He is very interested in food but does not know how to move it through his mouth properly. It is just like when you first spoon feed a younger baby. It will take patience for sure. Also, if his stomach stops trying to send stuff back up and allows food to move through without the retching his future surgery should go much better.

Speaking of the surgery, Mike and I found out Tomas has another hernia, this one in his intestinal tract below his left lung. That makes 4 hernias for my little guy. It can be repaired with the others, but that surgery is turning out to be huge and I am placing bets now that the docs will tell me they aren't going to be able to do it all at once. I meet with the new surgeon (insurance issue) next month.

When I had him at his new Endocrinologist last week, the doctor said something that really got me thinking. He said the ironic thing about these kids is they typically have major heart issues but are also the kids with the biggest hearts, and that they are sent here for us. I think that is a lot of pressure for one little guy. If he should grow up to be moody and tempermental like the rest of us he is somehow not fulfilling his purpose?

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,

Dorothy

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,
Dorothy

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?"

"Yes."

"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,

Dorothy

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

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.