Hospital Stay at Our Home away from Home and Vacation where the Buffalo Roam

Hospital Stay for Tests and Procedures

August 28-29, 2012

We are so anxious to move forward with Jayson’s G-tube surgery.  This will free up his face from the awful tape and free his small restricted airway from a tube.  It may help him with his oral feeding therapy.  We know that it’s a surgery that’s inevitable.  His feeding issues are not going away.  We want this surgery done before all of the scary winter illnesses are in the hospital, so we want it done soon.  However, Jayson is a complicated case.  If only I had a dollar for every time I heard that comment.  In order to move forward, we have to determine whether he needs a G-tube with a nissen, just a G-tube or a GJ tube.  That decision depends on his reflux.  The PH probe study showed basically no reflux, which was surprising but great.  The GI team wasn’t so convinced.  They ordered an Impedence Probe study to see if his reflux is just not registering as acidic.  The PH probe only detects the PH of the reflux.  Over the last couple of weeks, we learned that Jayson’s lungs were showing minor signs of atelectasis and lung disease.  This was also concerning.  We needed to determine his likelihood for aspiration, which causes damage to his lungs.  We have had swallow studies, but it was time for more information.  Since he was going to have the Impedence study, the team of doctors decided to order a Bronchoscopy from our pulmonologist to check out his lungs, and a endoscopy from the GI team to take a biopsy of his esophagus and decide if it’s damaged from the reflux.  Also, they ordered at a later time to have a FEES study done to scope Jayson and watch him swallow foods and liquids of different consistencies.  I was so anxious about all of these tests and the many ways it would torture Jayson, but I knew they would give us the answers we need to move forward.  So I put on my big-girl mommy panties and set the date of the procedure.

We had to arrive at the hospital at 6:00 AM.  That required us to leave at 5:00 AM and be up at 4:00 AM.  It was not a fun way to begin the day.  We arrived at same-day surgery and signed in at the digital kiosk (I know, weird) and grabbed a vibrating disk (even weirder, we’re not at a restaurant!) and sat out in the hall to avoid the germs from the many children running around the office.  When they called our names, I walked up to the desk to sign the paperwork.  No way.  I was handed a paper to sign that said “EGD” with our pulmonologist.  I informed the receptionist that Jayson was scheduled for a bronchosopy, endoscopy, and impedence probe placement.  I only saw one procedure.  She said that maybe the rest were assumed, and that EGD stood for the endoscopy.  I then pointed out that the pulmonologist was doing the bronchoscopy and not the endoscopy.  Our GI doctor’s partner in practice was doing the endoscopy.  She said that she didn’t see any documents with my pulmonologist’s name on them, and she didn’t believe she was even available this day.  She asked me to sign the papers and I could ask my questions to the doctor later.  Really??  I don’t think so.  I’m not signing ANYTHING that doesn’t have the right procedures written down and the right doctors are not even on the paperwork.  She seemed upset and snipped at me when I refused to sign and said that she would just hand the paperwork to the nurse to ask the doctor about later.  Great.  This was not a good start to our day.

We waited a little while longer and finally got called to go back with the nurse.  She got a weight, temperature, blood pressure and length on Jayson and we dressed him in his little hospital robe.  We waited for the doctor to come in.  We hadn’t met this doctor before.  Our doctor was not available so she asked her partner in practice to do the endoscopy.  He came in and we asked him about the paperwork.  He corrected it and verified that we were having the bronchosopy, endoscopy and impedence probe placed and YES our pulmonologist would be present.  He answered our questions, asked about his allergy to Tegaderm tape and prepared to take us to the operating waiting room.  I handed him our personal taping supplies since it’s difficult for anyone to get any tape different than Tegaderm.  Then our pulmonolgist came in.  I was trying to keep an open mind, although she was absolutely not my favorite doctor (see my posts on May 16^th and May 17^th).  I greeted her openly and hoped things would go well.  They didn’t.  She said, “Wow!  He looks even healthier now than he did when I saw him last.  He looks really good.  In fact, I don’t know why they asked me to do a bronchosopy on him.  But since he’s already going under anesthesia and since the team of doctors asked me to do it, I will.  But I don’t think he needs it.  He looks healthy.”  Great.  She already has an attitude about my child.  I really can’t stand this woman.

We took Jayson to the operating waiting room and kissed him goodbye as they took him back in his stroller.  It broke my heart to watch them wheel away, but I was relieved that this time he wasn’t receiving surgery.  

 We went to the parent waiting room and checked in, and then Mike had to leave for work.  I tried to stay distracted playing on my I-pad, but I was sick.  After about 45 minutes, the pulmonologist came into the waiting room looking for me.  She looked at me differently than before.  She sat next to me, sighed, and asked if we could go someplace private to talk.  Uh oh.  This was not going to be good.  I’ve been praying for this woman to take my son seriously and she never has, until now.  This meant bad news.  We went into a private room and she once again sat right next to me.  She showed me pictures of Jayson’s airway.  Oh my hell.  He was breathing through a pin-hole when in deep sleep.  In our pulmonologist’s words, “I do not know how your son is even alive right now.”  No mother ever wants to hear those words.  She turned the pictures over and drew pictures and diagrams to demonstrate how bad things were, and the awkward shape of his epiglottis.  She explained that his life was in jeopardy every time he goes into REM sleep.  And she felt that oxygen wasn’t really enough.  She explained that the airway is in the area of ENT, and she would call him and inform him of her findings.  In the meantime, she suggested we turn his oxygen up to ¾ liters at all times and even higher at night, as needed.  She suggested going back on the high-flow or trying C-pap.  Great.  We’re going backwards.  It seems things are worse after surgery.  She saw some mild redness near the right side of his lungs, which shows evidence of some aspiration.  Children tend to aspirate on the right side whereas it is more direct.  Overall though, things near his lungs looked pretty good.  She didn’t see major evidence of reflux aspiration, and that was what she was looking for.

I left that room with a special bond with that pulmonologist.  Our relationship greatly changed that day, as she finally took my son seriously. He is not as healthy as he appears.  I walked out of that office light headed.  I knew I had to call Mike and let him know, but I really didn’t even want to process the news she told me, and I was scared about what this would mean for Jayson.   I sat in silence for a few more minutes when the GI doctor came in to show me his pictures.  He did not see any obvious evidence of reflux damage to the esophagus.  He said Jayson was doing well in recovery and had his NJ tube pulled out and had the impedence probe placed.  After another few minutes of waiting I was able to go back to the operating recovery room to see Jayson.  He looked much better than when I saw him after his airway surgery.  I was relieved to see that he looked so good.  He seemed happy and relieved to see me and I cuddled and loved on him through the bars of the crib as he recovered.   

After another 30 minutes or so he was ready to go to the RTU- Rapid Treatment Unit.  I got help from the nurses getting Jayson’s crib, stroller and our things to the room while I hobbled there on my crutches.  Our RTU room was smaller this time than the last, and we didn’t have our own bathroom which was disappointing since I would have to hobble on my crutches down the hall any time I needed to use the bathroom.  This RTU experience was also terrible for Jayson, compared to the last.  Jayson didn’t seem to mind the PH probe at all.  But he was miserable after his procedures and the placement of this probe.  He wanted to be held the entire day, and he just whined and fussed any time he wasn’t sleeping.  He even started running a fever for a little while.  I was not able to watch t.v. or relax the entire time we were there.  Jayson needed lots of attention, love and cuddles.

As if having a child in the hospital in pain and recovering wasn’t enough, I had another terrible life event happen that evening.  I got a phone call regarding my job.  I requested to take FMLA leave which is protected federally and created so that people don’t lose their jobs due to medical emergencies and health problems.  I wanted to be able to take days off to take my son to doctor’s appointments since my employer was not allowing me to work part time.  Well, this was not in the financial best interest of my employer and I was told my position and contract would retroactively not be renewed.  I was without a job.  I spent the night even sicker to my stomach and in complete shock.  I didn’t ask for any of this.  I didn’t ask for my child to have a genetic syndrome!  I didn’t ask to spend 40 days of his life in the hospital!  I didn’t ask to spend a couple of days a week going to one of our 10 doctors trying to keep him alive.  This is not how I pictured my life!  This is not exactly what I wanted!  If I had done anything to deserve being let go, that would have been fine, but I was not going to have a job simply because my son has health problems.  It was wrong, but it didn’t change the fact it was happening.

My sister came to the hospital as soon as she got off work.  I was so glad she was there, because I was about to fall apart.  She caught the conversation I was having and it was so nice she was there to comfort me.  She brought me some dinner so I didn’t have to leave Jayson.  The doctor came by to check on Jayson.  Of all questions to ask, he asked how Jayson was doing with the tape.  I said it was too close to his head and pulling on his hair, but it seemed to be fine.  The doctor came and took a look, and then told me that I could take it off and retape the probe machine lower on his back to free up his hair.  My sister helped me torture Jayson and put him through the horror of pulling his hair and getting a very sticky tape off of his neck.  The tape looked different than I remembered, but I wondered if it was just because it was on his neck instead of on his face.  I started consoling Jayson, which wasn’t working, and I was wondering why he was still so upset after I was finished pulling the tape off.  I looked again at the back of his neck.  It was BEET red.  Blood red.  Red, red.  Right in the shape of the piece of tape.  A nurse walked in to see why Jayson was screaming and why his sats were all crazy.  I handed her the crumpled piece of tape and said, “Is this Tegaderm or Mepore?”  She quickly answered, “Oh, this is definitely Tegaderm.”  WTF???  Jayson is allergic to Tegaderm.  I signed a paper when he was admitted saying he was allergic to Tegaderm.  His file has a bright red piece of tape labeled ‘Tegaderm allergy’.  I told the doctor he was allergic to Tegaderm and I GAVE HIM OUR OWN TAPE, THE MEPORE!!!  What more did I have to do???  Now my child’s neck is raw read and he’s screaming in pain.  It started raising and swelling and I think my face was turning as red as his neck.  I was pissed.  And all sorts of bad feelings about the hospital and doctors who have screwed up big time came flooding back.  I had had it!!!  I called in the nurse’s manager to let her know.  No wonder the doctor came in to check on his tape, of all things.  He knew what he had done, and he wanted to see how Jayson was doing.  Well, surprisingly he was fine until I took it off.  Based on our last experience with Tegaderm, I’m confident that had I not taken it off so soon he would have been blistered by morning.  People are idiots and I’m tired of them torturing my child!!!

I let out some tears of frustration and shock and just cuddled my baby a little longer.  When he was settled, I laid him down while I made some phone calls trying to gain support and protection for my job.  Fortunately, I called someone who was supportive and encouraging, and told I would be backed up.  I tried to let it go.  I had faith.  God had a plan for me, and it was out of my hands.  I just had to focus on my little man right now.  I didn’t get much sleep.  Instead I documented my phone conversation as closely as I could remember, listened to Jayson breathe in and out, and finally crashed and got a couple of hours of sleep.

I was awakened quite early by the doctor again.  Although I wanted to verbally assault this man, I was still half asleep so he got off easy.  I asked him if he knew what our action would be regarding Jayson’s airway, and he said that wasn’t his area so he wasn’t sure.  He told us we’d get results on the GI reflux tests and biopsy in a couple of days.  We were told we were going home soon so I had to pack up our things and get ready to go to radiology to have his NJ tube replaced.  We were going home with a life-threatening airway and no plan.  Awesome.  Although I am not really surprised.  Jayson seemed to be better today.  He wasn’t as whiney or fussy, and he seemed to sleep pretty well overnight.  A nurse came and pulled out the impedence probe and Jayson and I enjoyed some playful moments with no tubes down his nose.  He seemed very happy about it!  If only it could have lasted!!!  

I got some help getting Jayson to radiology to replace his tube.  I was so appreciative that this team listened to me.  I told me Jayson does better if we don’t wrap him or tie him down.  I can just hold his little fingers and he’ll do fine.  They believed me, which I appreciated.  They even said Mommy knows best.  Jayson did really well, even though the tube placement took a little longer than I would have liked.  We got him packed up and a technician helped me out to my car.  I loaded up the little man, threw my crutches in the car and headed home.  I was so happy to get my little man home where his mommy can love, cuddle and take care of him.  What a long, awful 24 hours.

TEEFIES!

August 29, 2012

Oh happy happy day!!!  Happiest of the happy days!!  Jayson has been particularly fussy the last two days, so I decided to take a peek inside his little mouth.  Guess what I saw?  TEEEEFIES!!!! Two little teeth!!!  We were just told by a dentist that he didn’t believe that Jayson had his top front four and bottom front four teeth.  Wrong!  He has his front two bottom teeth cutting through!  Although I’m sad about his discomfort and pain, I’m so excited.  I’m taking this as a great sign of what is to come.  Jayson is going to prove everyone wrong!

Two Important Doctor Appointments and an EEG

August 30, 2012

As usual, I was very nervous for our two very important doctor appointments today.  Jayson is seeing the neurologist, and then our new special care pediatrician.  They both make some pretty important decisions regarding Jayson’s health.  I mentally prepared myself to be told by the neurologist that Jayson doesn’t need his medication now that we know he isn’t having seizures.  Although I was confident it was helping, I prepared myself to have faith that it would all be okay.  Even though I walked into the neurologist’s office with a chip on my shoulder since he couldn’t ever be bothered to answer my phone calls, those feelings quickly left as we conversed during the appointment.  I love our doctor.  He may suck and returning phone calls, but I love him.  He’s sweet and concerned about Jayson.  He has a child with disabilities, so he listens and understands.  He explains things in a language I understand, pulls up Jayson’s records and pictures to share with me, and draws me diagrams.  He never makes me feel rushed or like my questions are not important.  He showed a lot of concern for Jayson.  He felt that if the medicine seemed to be working, he should stay on it.  In fact, since the medicine was working and we had evidence that his episodes would go away any time we increased the dosage, he wanted to do another EEG to check for seizures even though we’d already had one in his office and another for 72 hours.  He didn’t seem too concerned about the hypoplasia of the C1 ring, although he said it would not hurt to contact the neurosurgeon.  He said he wanted to see us in three months or less.  I felt like this appointment went really well.

Our next appointment went just as well.  We love our new special care pediatrician.  She was also very concerned and listened to everything I had to say.  Being a woman and a mother, she seemed even more compassionate than our other doctors.  She was very thorough and analyzed everything.  After hearing that Jayson’s oral feeds are not going well and that his aspiration is getting worse, his eye is getting worse, and his breathing is getting worse, she is more concerned about the hypoplasia of the C1 ring.  She feels it could contribute to these issues and she wants us to see the neurosurgeon asap.  She was concerned about Jayson’s airway and the fact we haven’t heard from a doctor or our ENT about our plan or action.  She gave our ENT a call and talked with him.  He explained given the situation with Jayson’s epiglottis, High-flow oxygen or CPAP would actually make his airway worse.  It would fold down the epiglottis and almost seal it shut.  He said we’re in a sticky situation.  He said that it’s a distant possibility, but if things don’t get better we might be looking at a tracheotomy.  I had heard that before.  And since seeing those pictures of his airway, I’ve done some research and tried to mentally prepare myself for that possibility.  Although it would be awful and horrible, it would nearly guarantee Jayson’s safety in breathing.  It was something to consider and keep in the back of my mind.  The special care doc set us up with referrals, prescriptions and information that we needed and said she also wanted a follow up in about 3 months.   

Afterward, we went down the hall to get an EEG.  I was confident that this EEG wouldn't show anything new, but I was appreciative that our doctor wanted to be sure.  My nanny, Jayson and I spent the next couple of hours in the neurology lab while Jayson got his sensors put on, his brain activity observed, and his sensors taken off.  He did really well with it.  The technician was surprised.  Deep in my heart I was hoping this was his last EEG.  After spending the entire day at the Riverton Hospital, we left for home at nearly 4:00PM.  Overall, it was a pretty productive day.

Yellowstone!!!

August 31- September 3, 2012

Mike and I have been under incredible pressure over the past couple of months.  We have been sinking more and more each week.  We felt we really needed to recharge and wondered how we might do it.  Whereas Labor day weekend was coming up and Jayson’s surgery was being postponed, we wondered about the possibility of a vacation.  As we considered our options, we really desired to get away.  We wanted to be in a place we could relax, possibly in the forest surrounded by trees.  Park City didn’t seem far enough away.  We wanted to almost feel like we were escaping to magical land… We knew we had to go to Yellowstone.  Yellowstone is one of our favorite destinations, and we love it’s within driving distance.  We knew that it was going to be risky and difficult to take Jayson.  We needed to stay in a hotel or a cabin where we could have electricity for Jayson’s medical equipment.  We knew we had to be within a reasonable distance to a hospital and medical care.  And we knew Jayson would have to be stable enough to go.

I made reservations at the Flagg Ranch in a Deluxe Cabin a week before our trip.  I knew that in itself was a risk because we would lose our reservation money if we couldn’t go.  We didn’t totally count on going until about a couple of days before.  Jayson was healthy.  I called all of the surrounding hospitals and clinics and told them about Jayson and found out where we could receive different services.  We were ready to go!

I got a migraine the night before we were supposed to leave, so we couldn’t pack that night.  We packed up on Friday morning which took many, many hours with a baby and his medical equipment.  We barely got everything loaded up into the new Subi and headed out around 12:30PM.  On our way to my mom’s to drop off Maya, I got a phone call from from my system of support.  They were able to negotiate with my employer a part time contract, which is what I wanted all along.  This was wonderful news!!!!  However, I couldn’t help but feel sick about the drama that would need to die down before we’d all be comfortable working together again.  I had no choice but to once again rely on my faith that God would take care of it, and everything would be okay.  What was most important was that we had my income, I could still do the job I love and I could take care of Jayson.  Definitely a win!!!

We dropped Maya off at my mom’s and cleaned up Jayson after a massive blowout and headed on our way.  We ate dinner in Jackson Hole at a nice burger place.  They get their beef and meat fresh every day and make their buns from scratch.  They were rather expensive, but totally worth it.  Jayson tried a taste of a pickle for the first time and LOVED it.  He's definitely his momma's girl.  We saw a couple of forest rangers while we were there and got Jayson’s picture taken with them.  They were awesome.    

 We got to our cabin close to 10:00 at night, after our many stops to take care of Jayson.  Our cabin was even more beautiful than we imagined!  It was a large size and there was plenty of room for all of us and all of our stuff!  We went to bed late and planned to sleep in a little in the morning.  This trip was all about relaxing, taking our time, and doing whatever we wanted to.  

 Saturday morning we slept in until 9:30AM.  We got up, got Jayson his medications, ate some breakfast and started getting our things together that we’d need for the day.  We decided to go to Old Faithful first for the day.  I was so excited!!  I envisioned us watching Old Faithful go off, walking around the gift shop, sitting in the rocking chair in the lodge, and just enjoying life.  Once we got there, I realized how long the walk was going to be for me on my crutches!  We walked to a bench and took a seat wondering when the geyser would go off next.  Finally, we heard it would be almost another hour and it started to rain, so we started walking towards the lodge.  Wow.  What a long walk!!  I was exhausted and in a lot of pain by the time we got inside.  We found some empty rocking chairs and sat and relaxed with our little man.  I did some shopping in the gift shop and got us an album for our Yellowstone pictures and a cute toy for Jayson- a stuffed tree trunk with five stuffed animals that can go in the tree trunk.  

 The back of our Subaru is full of medical supplies instead of camping supplies!  Our camping styles are different these days. haha

 Jayson would get so excited being outside.  He would smile, stare at the trees, shriek and holler.  Even in the car he would watch the trees pass by the windows and laugh and talk to them.

 At Old Faithful

 Watching Old Faithful go off.

 In the Old Faithful Lodge.

After visiting Old Faithful, we decided to drive up to Mammoth and hoped to see some wildlife along the way.  We took a neat drive in Mammoth that we haven’t taken before, and we saw a bunch of elk, as we always do in Mammoth.  Just as we arrived at our favorite restaurant, it began to rain in a downpour.  We spent some time eating delicious food and ice cream, waiting for the rain to calm down.  As we got in the car, we noticed the elk had moved and were really close!  

 The next day we woke up earlier and got on our way.  We went up the other side of the look along the lake.  We went to West Thumb Geyser Basin and got Jayson out.  Mike used the Moby Wrap to hold Jayson, put on the feeding backpack and put the portable oxygen tank on his shoulder.  We walked a little on the boardwalk until I got too tired on my crutches.  It was beautiful and Jayson really enjoyed it!  We had lunch along the lake at a picnic site and took a drive near the Lake Lodge.  We drove all day so we’d end up at Lamar Valley by evening to look for wildlife.  On our drive we saw many bison and elk.  We ate dinner at the lodge in Roosevelt.  I tried a Bison Taco Salad and it was delicious!  We drove out to Lamar Valley which was really neat.  We saw hundreds of Bison, some elk, and even antelope.  We didn’t see any wolves or bear like we were hoping.  We tried to turn around and start heading back before it got dark.  On our way back over the bridge a bison was walking right in front of our car the whole length of the bridge.  It was funny!  After it got dark, we came across a sign that said “Wildlife on the Road” and we saw brake lights ahead.  We slowed down as we saw a herd of bison on the road ahead.  But suddenly a herd of elk ran right in front of our car!  We were stuck for a while as a ranger tried to herd the bison off of the road.  The bison were right by our car and we could hear them snorting.  Finally we got back on the road again and shortly after had to brake for a coyote on the road.  We got back late and got into bed.

Jayson loves the trees!

Jayson's first time seeing the Buffalo!  Look hard!  They're right behind him next to the building!

 We're at the lodge having dinner.

 I ate buffalo meat for the first time.  It was really good!

 Buff jam across the bridge.

 The next morning we packed up and enjoyed the morning at our cabin.  We sat in our cabin’s rocking chairs and enjoyed some relaxation time.  We went into our own Flagg Ranch lodge and checked out the gift shop and took some pictures.  We then drove to Jackson where we ate lunch at Mile High Pizza and checked out a couple of shops.  We relaxed in the park for a while and let Jayse play on the grass before we got back in the car to head home.

 Mountain High Pizza in Jackson

 He was so happy while we ate!  He just loved being outside!

 Jayson spent most of this trip looking up at the trees and the sky.

 Love this little man!

 We had a wonderful time on our vacation and made many memories.  We have been so worried that all of our memories of Jayson’s first year of birth were going to be medically related.  We wanted family pictures doing fun things.  This vacation not only allowed us to relax, but we enjoyed our time together as a family and made some wonderful family memories.