July 17, 2008

This is Grandma Val making a little entry to Scott and Anna's blog. I will just let you know a little bit about what has happened today that I know about. When results from Adi's blood labs came back today her Hematicrit was low -- 25. Dr. Rollins came in and said that he wanted her to have a blood transfusion. He also wants to have PICC line put in. Adi has had so many IV's lately that she hardly has any good veins left. The PICC line can't be put in until tomorrow so the IV team came in and put in another IV. This is her 5th IV site since she came in on Tuesday. Adi has also had trouble keeping her oxygen saturation levels up today so she has been on blow-by oxygen today. Hopefully, with some additional blood she will be able to maintain those levels. Adi is getting some TPN, a nutritional supplement, through her IV and is still on morphine and Tylenol for pain. She has rested comfortably this afternoon while I have been here, especially after the trauma of getting another IV. This little girl has had to endure a lot of needles so far in her life and it never gets easier.

July 16, 2008

Well we got a bed again-  Cammie, the tech we had 3 hospital stays back, remembered that we had one when she was our tech the last time.  She had the bed in our room by midnight. It's all about the little blessings.  

The night before surgery was rough because Adi was restless and I am, although trying hard not to be, a little paranoid at her having other complications or seizures.  Then there was the feeding schedule-  from 2:45am to 5:45am she was to be off formula and on clear liquids.  At 5:45am all feeding stopped.  At that time there was no reason to fall asleep because we needed to be out of the house by 6:30 to be at Primary Children's by 7:15 for surgery at 8:45am.  I have to admit I was nervous about surgery.  I thought the second time around would be easier but it almost seemed harder.  I'd asked Scott to give her a father's blessing before we left the house- it was more for me to be able to have peace of mind and know that he could bless the surgeon's hands through her.  During the blessing Scott said that everything would be ok which brought an immediate peace.  I don't know how people go through life without the gospel and priesthood blessings.  

Everything went as scheduled.  As we went down the hall with the anesthesiologist, Dr. Furst, to the spot where we give our last kisses to Adi before surgery I didn't cry and Adi went with Dr Furst smiling.  Another blessing.  

Scott and I were both so tired but we just couldn't sleep in the waiting room.  We got updates every hour and the surgery took a total of 4 1/2 hours.  When the bed got to the room we were all just exhausted.  Adi had been grunting and squirmy so the nurse got orders to up the morphine to .03 mg/hr at a concentrate of 1 mg.  I am happy to report we all slept as well as possible for being in a hospital. =)   

 Adi continues to have a slight fever which the surgeon said was to be expected.   She will be without food for 5 days and everything from here on is just letting her body heal.  

I don't think we can thank you all enough for your love and prayers during this time.  I see prayers work as we receive all the little blessing and tender mercies throughout this process.  Thank you all!!!  

 

July 15, 2008

The surgery took a bit longer than they expected (4 1/2 hrs) and we just got up to our room so I apologize for the delay. Everything went well and Dr. Rollins was really pleased with the way things went. He couldn't tell what had caused the nissen to herniate again because all of the stitches in the diaphragm were still intact. He was able to put the stomach in the proper place again and he put in a patch this time to strengthen the diaphragm and hopefully prevent any further problems. He redid the nissen anyway and feels like she will have plenty of room for food and liquid to empty into her stomach as soon as she can eat again, which will probably be in 2-3 days. Thank you again for all of your prayers which sustain us each day.

Grandma’s email to family July 10th

Hello All,
I am sitting in the Primary Children's Hospital in room 4320, again, and thought I would update you and ask for your prayers in behalf of Adi. On Sunday, Scott and Anna brought Adi over to our house and described some gagging and retchingepisodes that Adi had been having on Saturday and Sunday. Often times with these episodes Adi would stop breathing and get a glazed-over look in her eyes. When I saw one of these episodes I agreed that it was time to take her to the hospital. It made her start sweating so much and just wiped her out. It didn't seem right. We talked to the ER staff about identifying through an x-ray whether something was amiss with her feeding tube which might be causing this attempt to vomit. Because of Adi's previous surgery for her hiatal hernia and the nissen wrap she is unable to vomit. Well, we were taken back to x-ray very quickly which was wonderful because the waiting room was packed. Of course the results of the x-ray showed that the feeding tube was in the correct place and wasn't the cause of this new behavior. Luckily, while we were in the ER she had a little episode when the attending physician was examining her. He said he was concerned and felt that she should be admitted and have some tests run to determine if she was having seizures. So, Monday, Tuesday, and Wednesday were spent doing tests: EEG, echocardiogram, and a GI emptying test. Everything came back normal. When she was admitted they had Anna stop nursing her so she was only getting feedings through her NJ tube. She didn't have any more gagging, retching episodes so the feeling was that maybe the milk from nursing was sitting in her esophagus too long and causing her body to try to up-chuck it. Anna was finally able to meet with the surgeon, Dr. Rollins and talk about Adi's upcoming repair surgery. Of course we kept hoping that all of this would be cause to schedule the surgery sooner. Not so. In fact, because Adi had been in the hospital the week before and had been diagnosed with Adenoe Virus, Dr. Rollins wanted another 'snot test" done to see if the virus was still present. Normally they would not put a child under anesthesia until 4-6 weeks after having that virus. Discouraging news -- the surgery might even be postponed.
Since all the tests had been run and Adi was doing okay, no more retching, Anna and Adi were discharged yesterday around 4:30. Adi slept on the ride home and Anna drove straight to see Scott at work. Scott looked in on Adi sitting in her car seat and saw that she was still sleeping. He went inside to finish up something and Anna was sitting in the car waiting for Scott to come back. She happened to look back and saw her car seat shaking. She came around to see her and saw her lips turning bluish, face very pale, eyes were glazed, and body having some convulsions. She screamed for Scott. He came and got her out of her car seat. She wasn't breathing and so he pulled out the NJ tube so she could have as much room as possible in her airway. Anna called 911 and while they were on the way Adi started breathing a little more and gradually got back to full breaths. By the time the paramedics saw her, she was smiling and interacting with them as if nothing happened. Scott and Anna decided it was best for Adi to ride up in the ambulance just in case something happened. She of course was fine on the way up and they got them right into an ER room and within 15 minutes she had another episode while the resident was in the room and she was able to see what happened and immediately thought it was a seizure.
Adi had 4 seizures last night. They decided to give her some Ativan to control the seizures and let her sleep. I went to the ER room and got it on what was happening after 9:30. Adi was admitted and put in room #4320 (the same room she had left at 4:30 in the afternoon) around 2:00. I went to go sleep in my car - sleep is not an accurate word. Anna and Scott slept in Adi's room. Again sleep is not an accurate word. The pull out chair butted up to the rocking chair with their heads at opposite ends and their legs fighting to share space - I guess there could have been some sleep.
This morning I came back to the room around 7:00. Adi had a very significant seizure at 8:30. The resident neurologist was right outside the door and was able to see the seizure. A technician arrived at 10:30 to set up an EEG. We wanted Adi to have a seizure during the EEG since the EEG they did on Monday came back normal. Originally Adi was scheduled for a routine EEG which would only last about 30 minutes, but the technician needed to go make a presentation and said that she would leave it on until the presentation was over -- about 2 hours. Well, even before the technician had finished letting us know what to document if she had a seizure, one started. Scott was able to get it on video as well. The seizure might have been the worst one she has had. What an answer to prayer to have the information documented that this team of neurologists needs to make a good diagnosis.
It is now 12:30 and we haven't seen anymore seizure activity. I would just like all of you to keep Adi, Scott and Anna in your prayers. This has been very scary for Anna and Scott. I hope that they will feel comforted and be able to get the rest they need and be in good health as they deal with what lays ahead for Adi, which right now is uncertain. We still need to resolve the upcoming surgery date and what effect these seizures will have on that.
Love,Valerie

June 26, 2008

We went in for our usual Thurs. weigh in and explained to Dr. Kendall she had had a fever since 9pm the night before.  She had slept over at Grandma’s and in taking her temp it was a 102 reading at 2am.  The fever never got below 99 with Tylenol.  Adi had had an ear infection for 2 weeks and amoxicillin and omnicef didn’t work to get rid of them.    Dr. Kendall asked if we should have a blood draw taken to check that the bacterial infection hadn’t gone to her blood.  We went home and at 4:30pm Adi started having very thick saliva and had a fever of 103.4 rectally.  After talking to Val for a minute on the phone I realized I needed to get to Dr. Kendall’s office before it closed.  When we got into a room her fever was 103.6.  Dr. Kendall told me she didn’t feel comfortable to let me go up to Primary Children’s by myself and that I needed someone to drive me.  Of course, Val without being asked called me to let me know she was on her way.  What a lifesaver!!!!  We were in the emergency room at 6pm.  The ER Dr ordered a blood draw and told us he wanted to test for meningitis with a lumbar puncture(LP).  He also wanted to do a snot test to check for other viruses.  The blood work came back normal and they were waiting for a blood culture they were growing at Timp.  They got ready for the Lumbar puncture and that was an awful procedure.  They had to hold Adi and pretty much bend her in half so they could get the needle in between the vertebrae.  She was screaming the whole time.  On his first try, he inserted the needle and blood came out.  He told us he must have nicked a blood vessel.  He tried again and the same thing happened.  He had to go get another needle and left Adi bent in half screaming for another 10 min.  He tried a third time and missed again.  At this point he said he was going to get another doctor to try.  The new doctor came in about 5 min and took 5 min to reposition Adi.  She then inserted the needle and got more blood.  I was getting pretty upset because it had almost been an hour and Adi had been screaming the whole time.  The doctors said that 99% of the time it only takes one try, but of course we were the one percent that has an awful experience.  The next step was to have an anesthesiologist try under fluoroscopy.  They couldn’t do it that night though because they missed so many times and the site was so swollen.  The test was taken the next day and the test came back negative for meningitis.  The doctors started her on rocephin 600mg through her IV to treat her ear infection and as a preventative treatment.  The rocephin was taken for three days along with rotating Tylenol and Motrin to bring down her fever.  She had a continuous fever of 101 until the 28^th when the snot test was finally ordered and she tested positive for adeno virus- which is a respiratory virus.   There wasn’t much more they could do except control her pain and try to keep the fever down.  It subsided the next day and we were discharged that day.

June 23, 2008

 Adi pulled out her tube at the luncheon for Grandma’s funeral.   We went up to the hospital that evening to have it re-placed.  The radiologist started putting the tube down her esophagus and all of the sudden Adi couldn’t make any noise.  She was trying to scream out but she couldn’t make a noise.  I instantly knew something was wrong and started asking if she had aspirated or what was happening.  They finally pulled the tube back out and then she was able to breath again.  She tried again and the same thing happened.  She had put the tube down her windpipe twice.  The third time she finally got it down the right tube and got it placed in her intestines.  It was pretty scary and Adi just kept choking and coughing for the next two hours.  It was the worst NJ placement we’ve had yet.   

May 30, 2008

Adi is still not gaining weight (13 lbs 0 oz) so at our biweekly visit with Dr. Kendall suggested it was time to have another NG tube placed.  The 31^st we took her to the office at 3:30pm and Dr Laurie Anderson was supposed to place the tube.  The only tube they had in the office was a 5, which was not big enough.  The Dr’s LPN was asked to go find the right size.  While she was gone I decided to ask if home health had been ordered for all the supplies we needed.  The Dr asked her RN to call Infusion Innovation to check if they had orders.  The RN left and came back to ask if I had their number, I told her I didn’t and she just needed to look it up on dexonline.com.  I mentioned where Infusion Innovations was located so she could enter that information.  Not having anything to do I followed her to the computer.  She spelled Infusion wrong and didn’t put in a city location so she got frustrated she hadn’t found the number and told the Dr.  She finally found the number as the LPN came back with another tube.  The tube was an ok size but it had a sleeve at the end bigger than Adi’s nose.  I asked if they could just add to the home health order a nurse to place the tube at home.  The Dr agreed.

As I was walking out of the office at 5:30pm the LPN came running after me saying she didn’t have the phone number to our home health company.  I got frustrated and told her not to worry about calling- if she faxed the order over I would call and coordinate my daughters care.  I told the girl at the front desk I wanted my Dr to call me. 

When I got home the home health company called and told me they wouldn’t be able to send out a RN on a Friday night.  Right as I got off the phone our pediatrician called and we discussed the situation and decided we needed to take her to Primary Children’s Hospital to have the right size tube placed.  I mentioned to Dr Kendall I felt inspired we needed to pursue getting Adi’s heart checked out.  She said we could go in the next day, (Sat., May 31) to have an EKG and chest x-ray taken.  When we got to Primary Children’s they took us back and Scott voiced our concern that she has only 12 lbs 12 oz and tried to explain to the ER Dr that we needed to check this out.  Dr Nelson had the nurse place the tube.  When the nurse checked placement he only waited to see bubbles and not stomach bile.  Then he did a swoosh test and claimed everything was ok.  Adi cried for 2 hours after placement which she had never done before.  When we got home she started chocking which was not normal.  After a minute on the pump the pump would beep indicating something was wrong and nothing would go into the tube. 

The next day when we got the chest x-ray, the tube was coiled and kinked in her esophagus.

We immediately headed up to Primary Children’s with an order to get the tube replaced and Scott insisted on doing an upper GI barium swallow at the same time to check the nissen.  Sure enough the nissen was too tight and we had finally found an answer to why Adi hadn’t been gaining weight.  Scott and I are so grateful for inspiration given from a Father in Heaven who hears our prayers.

A few days later we got a diagnosis from the EKG showing an abnormality- biventricular hypertrophy. They wanted us to meet with a cardiologist to do some further testing.