Thursday, April 30, 2009
Monday night Noah woke at his regular 2:00 AM time but this round he also woke his brother. Shane took Jonah out of the nursery and we immediately had a difficult time calming him. When we took him in to our bedroom we noticed how pale he was and how fast he was breathing which immediately scared me. We hooked him up to our Pulsox machine (a God send) and found he was saturating ok but his heart rate was on the high side. I knew immediately something was wrong. We waited the restless night out and by morning I knew Jonah was going to go first thing to the doctor.
Shane stayed home (both of us were so exhausted) and took Jonah while I looked after Noah at home. He came home to say the doctor said his lungs were clear but to air on the side of caution she decided to order both blood work and a chest x-ray. After Shane brought Jonah home I continued to have a horrible feeling in my stomach that something was wrong. He was so pale, and trying so hard to breath and most concerning his normally mild Strabismus(irregular eye movement) was out of control. He could not control his eyes at all. I have never seen this in Jonah but he had no ability to focus on anything and his eyes were moving everywhere because of this I ended up calling his neurosurgeon afraid that his VP shunt was malfunctioning. His Madera specialist wanted to see him immediately.
So, in a rush, I packed Jonah up plus a pair of pj's for the night just in case and headed out. Shane and I continued to be on the phone for the next two hours making sure insurance was in place and that the pediatrician's office was communicating the chest x-ray results to the neurosurgeon's office, etc.
At 3:00 PM, I received a phone call from Dr. Ho/Dr. Pardo telling me Jonah's blood work was fine but that his chest x-ray was showing bi-lateral pneumonia and that I needed to let our specialist know that the x-ray also showed CHF. For what felt like the first time I found myself not knowing what the doctor's office was referring to in relation to my son's condition. When I questioned exactly what CHF was the office secretary did not have specifics just the order from the doctor to please have me communicate to his specialist what had been found. I made sure that the radiologist reports were faxed and rushed to the hospital.
Jonah's neurosurgeon saw him 15 minutes before his office closed. After tapping his shunt and checking his valve he determined everything was functioning. I immediately related the information given to me from Bakersfield including the CHF info. Our neurosurgeon looked puzzled and said, "Congestive Heart Failure?" I looked at him with panic. He found the official Bakersfield radiology report and sure enough, the Bakersfield radiologist had diagnosed bi-lateral pneumonia and congestive heart failure. I found myself sitting in the room and suddenly thinking the absolute worst, I was going to lose my baby. After all the fights, surgeries and heartache we were going to lose him.
Jonah's specialist just sat there and said, "this can't be right, Jonah has no history and I'm sure his lungs and heart have always looked this way due to his prematurity."
Our next nightmare was because of our insurance and being out of area we were not allowed to be directly admitted, we had to go through the ER process. Jonah's neurosurgeon was wonderful. He made a call to one of the Pediatric floor doctor's and told him he was sending Jonah down and to get him through as quick as possible. All in all we sat in the ER waiting room for maybe 20 minutes before they got us back to the exam area. We waited there for two additional hours while they ran blood work and an additional chest x-ray. Almost immediately the pediatric doctor sat down with me and reassured me that the radiologist report was most likely an adult radiologist with not much experience reading x-rays belonging to premature children and he felt Jonah was just fine. Sure enough, within hours the pneumonia and CHF diagnosis' had been ruled out. They began several rounds of influenza tests and blood work to check for anything and everything (yes, including swine flu). Wednesday blood work was looking good but to reassure everyone the pediatric doctor ordered an echocardiogram of Jonah's heart. The techinician took what seemed like forever and then left by asking me if Jonah had a cardiologist in the past, ummm....no! That is the one specialist we DON'T have and don't want! This of course sent me back in panic mode and I spent another eight hours waiting for the results (much to the dislike of the nursing staff as every two hours I spent pestering them for results). Finally that afternoon the doctor called me to say that the echo had returned showing some water around Jonah's heart but this was attributed to whatever virus he was suffering and it was not considered an issue unless in the next few weeks Jonah's condition worsened. He reassured me things were fine and they wanted to make sure Jonah was eating well (which he was not doing at this time) and get him off IV fluids before sending him home. Last night Jonah finally started eating and keeping food down. This morning the doctor wanted to run one more round of blood work and also another panel of influenza tests just to assure everyone that swine flu was absolutely not a possibility. Finally by early afternoon Jonah started showing signs of his old self and by 3:00 PM we were FINALLY discharged. This was our shortest hospitalization yet and thank the good Lord the CHF was immediately found to not be an issue.
My first emotional thought (obviously not very rational) after all this hell was, who fired the Bakersfield radiologist and sent in the kindergarten teacher to read the radiology report? How in the WORLD did the radiology clinic in Bakersfield come up with SUCH a severe diagnosis, do we live in such an uneducated area that even our medical professionals are lacking in proper training? This was not even a minor discrepancy, this was a FULL BLOWN mistake. A monstrous, astronomical error. I was furious, frustrated and absolutely overwhelmed that the results could be so off base. I felt like I could have walked in to that room and read my son's x-ray with more knowledge then the supposed radiologist himself.
Let's just say that this morning found me on the phone with Truxtun Radiology demanding to speak with their supervisor. I explained the extreme diagnosis given compared to the actual findings in Madera and asked to speak with the Medical Director regarding the clinic's overall pediatric experience. After all, Bakersfield has a population of 500,000 people....we are not the only family with premature children. I can guarantee that. I want to know what is being required of these radiologists in way of yearly training, credentialing, etc. Aren't medical doctors required to credential and take various medical seminars year to year to stay fresh and current in their fields? I may not have medical experience but I have worked in health care and I know for a fact that docs are required to stay on top of new findings, technology and diagnosis' that affect their field of expertise. So what happens to radiologists and why is this major office that provides service to a large part of Bakersfield not seeking to require better education of their radiologists? There are absolutely no excuses. It comes down to the fact that my pediatrician was making a decision based off their report and if that had been the direction pursued who knows what kind of care Jonah would have received. One can only hope that additional testing would have found things different thus preventing any treatment of CHF and further causing damage to my son.
I am more then furious, I want answers. I am to the point of pursuing something legal. This is nothing short of poor experience which is NOT acceptable when it comes to the care of my boys or my family.
Needless to say the radiologist supervisor only acted as an ear piece. She took my information and said she would have the Chief Radiologist review the report and get with me. She also said the information would be sent to administration. That was this morning and to my shock there was no immediate phone calls back this afternoon so tomorrow I have my work cut out for me.
Why do I feel like I am constantly battling the system? Since when did I sign up to shadow every health care personnel and make sure they are actually doing their job correctly? I feel like if I don't show up to the radiologist, pediatrician, hospital, specialist, therapist, whatever, someone, somewhere is not taking the time to review the history of my sons and to carefully understand their current situation due to their extreme prematurity. How do families without the ability to advocate do this? Never did I think that I would be a child advocate to my own children, in fact sometimes I almost find myself laughing, not in a comical way but almost incredulously at the fact that at one point before children I was looking in to signing up to be a state appointed child advocate. How truly ironic that somehow after the fact I find myself being thrown in to the role. While stewing over the state of things this morning the Shakespeare quote came to mind "Be not afraid of greatness; some are born great, some achieve greatness, and others have greatness thrust upon them." Before I am misunderstood, I have to say I do not mean this in the sense that I consider myself in that circle of greatness...I more thought of the quote in the sense of that sometimes we find the greatest of challenges are "thrust" upon us and we can either strive for greatness in overcoming them or we can bend to the back breaking pain and forget to move forward. I have done both my friends, I have done both. I have made great strides at times and at times I find myself breaking under pressure and wallowing in the hardness of my situation. Obviously greatness is the goal and I was grateful for that reminder today when I found myself stalling in the frustration of the week.
Setting that aside, I guess with the state of health care being what it is things will probably only continue to get more difficult so best that I "gird my loins" while I can and prepare for the long road ahead.
For those of you fortunate enough to have never visited the hospital, count your blessings and thank God for your health. You never know what a precious gift good health is until you find yourself thrown in to a situation without it.
For now, we are home. Noah started this morning with fever and crankiness. We almost found ourselves rushing him down to Madera but after feeling things out decided to keep him home on constant Tyenol and play it safe.
We are second guessing our decision to take the boys out of isolation now that we have battled two hospitalizations in a month's time. With swine flu out and about we are trying to decide if having the boys out is a good idea. For this weekend they are staying home and possibly for the next couple of weeks to come they will not be going to church or nursery. We aren't ready for another round of hospitals and we are not ready for them to be around a ton of children yet. Hopefully this swine flue hysteria will be under control soon but it is terrifying knowing a case was found not even an hour from here in Tulare County.
Big hugs to all of you who sent thoughts, messages and prayers our direction. We flew Grandpa Langston down last night and as always, he is a blessing to our family. I am at ease knowing he is here.
Hopefully our next posting will be filled with day to day details like enjoying spring and watching the boys grow. I really enjoy posting this much more than anything else.
Until next time, God bless.
Tuesday, April 28, 2009
Sunday, April 26, 2009
Shane and I did South Beach before my invitro transfer and I lost 10 pounds in 2 weeks. Not bad. As I remember that was just with dieting. I had to also include a bit of fruit because my blood sugar did not tolerate the Phase 1 "no fruit" rule. After the two weeks they allow a slow return to fruit with the emphasis being on berries, etc. but I had to compromise a bit and allow for fruit.
So here we go folks. We are going to need a lot of prayers and support. This one is a hard one for both Shane and I to tackle but we know it is past due for us to get going again on taking charge of our health.
Hopefully we will also see a start up with some exercise sessions this week too. I have a dust collecting elliptical in our master bedroom that is awaiting me......I better do a few minutes before bed to get my mind set in the right direction.
Signing out for now.
Saturday, April 25, 2009
And.......believe it or not, the boys were PERFECT! Noah only fussed a bit and toward the end of the walk, both boys fell asleep (see the top photo, talk about hard work). The weather was wonderful too.
Our friends the Haneys and Bonds walked with us. In to the route, a sister from the ward, Renee Christensen showed up. I made team labels for everyone to wear. It was fun to walk for the cause. I am looking forward to next year.
Friday, April 24, 2009
In one week we have been able to raise $300 for the March of Dimes walk tomorrow. I can't believe the support we have received in such little time. To all of you, many thanks for your ongoing friendship and support.
Hopefully in the bustle of tomorrow morning I will remember to take my camera and get some photos of the walk. I also hope that Noah's tantrums that come with being in his stroller will be minimal, maybe the walking will keep him distracted (don't even ask how lunch at Chile's went today. We went for Tracy's birthday. Let's just say that after 10 minutes of screaming because he had to sit in a restaurant high chair he finally realized that Mom was not paying attention and gave up. I am sure everyone around us thought I was a terrible Mom).
Thanks again everyone!
Kern Regional has agreed to cover the cost of the boys Kids Essentials. That is going to save us over $350 in costs every month. Yes, it is really that expensive. We have been trying for almost a month now to get this covered. We never anticipated it would be so expensive until we were forced with the reality of things last month when we officially switched the boys off formula.
I look at this as a huge blessing from above. We can always use the help.
Wednesday, April 22, 2009
We went to the Lori Brock children's center today. It was kind of hard to find and I got lost in the process but we did make it for a bit. I met the Richardson Center teachers and aids plus the Principal of the infant program. Noah absolutely freaked out about being around other kids and strangers. He wouldn't let go of me to save his life and refused to play with anything. Jonah did ok, Abigail (the boys infant specialist) carried him around and played with him. She also gave him his bottle and he decided to start refluxing almost immediately after. I played and distracted him for a couple of minutes and we narrowly avoided a nasty throw up (he already threw up breakfast at therapy this morning). Then to top of the day, we put the boys back in their stroller and of course Noah FREAKED out (he hates being strapped down). So in a nut shell he made himself throw up. We almost made it puke free but I guess we just can't go anywhere without one of the boys throwing up, at least not yet. I was a bit frustrated but I guess it just is what it is. I had to run to Walmart after and Noah pitched a fit so let's say it was a very short trip.
I really hope Nursery at Church and our play groups will help Noah with his stranger anxiety. I am also desperate to figure out a way to discipline Noah. He has GOT to learn to stop throwing up and pitching fits every time he does not get his way. Plus it is maddening that I know he knows he is in control most of the time. We are desperate to keep food/calories down him so we have to avoid throwing up at all costs. This means that most of the time we have to let him do things his way, including bed time. The last two nights he was up so late, like 10:00. He refused to go down any sooner. I seriously told Shane last night that like it or not he is going down at 8:00 tonight. But I know as soon as that time arrives and he starts screaming left and right we will have to stop him so he won't throw up all over everything. This is the problem with his nightime tyrades too! We can't just let him "scream it out" because he will scream until he vomits all over everything. *Sigh* So if anyone has some suggestions, please let me know.
Jonah, bless his heart, has no control right now over his acid reflux. I wish, I wish that I could stop his vomiting spells. We went from months of hardly any spit ups to almost daily throwing up in the past couple of months. Of course his molars and everything else have started coming in so I am sure this makes things worse but darn it, I keep wanting to avoid the fundoplication with him and all I can do is hope for the best.
We have worked hard to avoid the fundoplication plus the G-tube. These boys have been able to do so much more developmentally without either of these and I am not giving up yet. So say a little prayer that Jonah's reflux will get back under control.
It has been hot in Bakersfield this week, the past few days have been in the 90's. I have missed getting out in the afternoon. Our mornings are generally so busy with therapy but we are just going to have to figure out how to get play groups in the morning through the summer so I don't go through another round of Cabin Fever like last summer.
We were able to find a great JcPenney coupon for Patio Furniture. Shane is still putting together chairs and tomorrow we are having a new family from our ward over for pizza. It should be fun. Saturday is our walk (thanks for everyone who has supported!) Afterward we are having a few friends over for a BBQ. So we are dashing around this week trying to get the furniture assembled and our back yard in order. I love having things to work toward. I wish I were in Utah because I would be motivated to run marathons with my cousin. She is so amazing. She has two special needs children (4 total) and she runs marathons all the time as her means of escape and relaxation. I admire her greatly. I need to get myself in to something like this instead of heading to the fridge whenever I am bored. I have some weight to lose so I have my own goals to set for the future.
Well, that is the latest at the Hanna home. We hope everything is going well with your families.
Tuesday, April 21, 2009
The owner is selling it for a mere $30 plus shipping. I can hardly believe it!!!
Right now I am negotiating everything but hopefully we will have that here soon!
Today our case manager for Kern Regional Center asked if I would be interested in being a board member. Wow. I anticipated it was coming as she has been hinting at this for a few months. She actually told me the other day she wished I was working for KRC. My boys have too many needs for me to up and stop being a home mom right now, although the idea of getting back to the office seems like a vacation most days . I did tell her I was interested in knowing more about the Board Member position. If I don't have time (which my time is spread so thing right now I might not) my good husband Shane would be an excellent candidate. He has so many excellent leadership qualities (I hope this won't seem too braggadocios) and with his management experience he would make the perfect board member. He has legal experience, crisis experience (both career and personal life--ha ha!), company management experience and is the most even keeled person I know. He always keeps his cool even in the most extreme situations, a gift that most do not have (including myself). So either way, one of us plans to write a letter of intent and try to get involved with bettering our local regional center. Our CM today said that the early start services are really being scrutinized by the federal and local governments because of the state of the economy right now and things are only going to get worse in the years to come. This is such a sad fact for special needs children.
I worry about the future of my boys but I know they have the right parents to fight for the very best care that is out there. We'll do anything it takes to make sure our boys are taken care of and given every chance at equal opportunity.
Sunday, April 19, 2009
First, we are DREAMING of a night of full sleep at this house. Ever since January and Noah's ear infections we made the BIG mistake of letting him sleep with us to prevent us getting up a million times a night to comfort him. Well, come February he would not HEAR of sleeping in his own crib. We have been battling this out for over a month now. Before Grandpa Langston left we laid down an ultimatum and said, NO MORE. Well, of course that results in a lot of tantrums throughout the night and we are NOT allowed to let our kids "cry it out" (I dare anyone whose child has severe reflux to let them cry it out and see how much they throw up....)
So the past couple of weeks have been rough. Last night Noah only woke up twice, not bad. Other nights have been as many as 4-5 times. Yikes!!!! I keep hoping we are getting over the worst of this.
NOW, for the GOOD thing!!!!! We had Noah OFF, yes I said OFF oxygen Friday night for a couple of hours and he did fine! I was so thrilled. We reduced his night oxygen to 1/2 Liter and he did fine with his sats. Saturday I tried him again off oxygen but this time he was hovering between the 89-91 range. Not good enough. But oh so close!!!! Our little man is going to be off this blasted oxygen during the day in the next couple of months. What a blessing!!!!
Saturday, April 18, 2009
Thanks to everyone who has already supported our March of Dimes walk. We are SO blessed to have you in our lives. We have already surpassed our meager goal. Thanks again for your love and support. This is really going to such a great cause, one that means a lot to us as a family.
Needless to say, we are up and running and preparing for the 25th. To see our Team's Web page see the link on the right column under "March of Dimes."
If you are able, we would love support for this very important event. We hope the future will be brighter and better for premature children.
Thursday, April 16, 2009
Monday, April 13, 2009
We'll miss you Pa-pa. We will be counting done the days until June when you will return.
Saturday, April 11, 2009
Friday, April 10, 2009
The boys got great presents, including eggs that glow! Jonah especially loved those, his rainbow slinky and a cute duck with textured feathers. Noah loved his card, I don't know why but he enjoyed playing with his card more then anything else! Silly boy!
Wednesday, April 8, 2009
Question: We're having discipline problems with our two-and-a-half-year-old daughter. When she doesn't get what she wants she throws herself on the floor. She is a sweet, happy little girl as long as we don't tell her "No." I don't know what to do with her. I believe she is ADD/ADHD but I won't put her on medicine this young. Please tell me what I should be enforcing and what I should ignore.
Answer: My guess is that you're experiencing the typical, often frequent tantrum-like behavior of a toddler. At this particular age and stage of development, your daughter is feeling more of a need to assert her own will and independence........
Boy, is that an understatement! This is full on out war!!! Prepare the troops. Moms at the ready...here comes thrashing, throwing of everything in reach and wailing at unthinkable high pitches with great ability for extreme volume.
Let the battle begin....
Monday, April 6, 2009
Can you resist this smile? When he is really excited he scrunches up his tiny nose and smiles as big as he possibly can. Simply adorable!!
Wednesday, April 1, 2009
NOTHING is working. The infant strap I bought at Walmart is worthless. Jonah has already managed to chip his new lenses that he has had for a whopping three weeks.
Boy, our optometrist is really going to hate us. I hope they consider chipping part of the anti-scratch warranty we have!