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Friday, February 27, 2009

Big Move Updates

We traveled to Rhode Island shortly after Hannah's surgery. Not great timing, but we had to do what we had to do. My mom watched Hannah and did a great job of caring for my sickly little girl, but it was so hard to be away from her for so long. I had never been away from her for this long before. While in Rhode Island we looked at well over 40 houses and ended up finding one we liked, putting an offer on it, and having the offer accepted before we got on the plane to fly back home to Indiana! It was a crazy, but productive 5 days.

The past two days have been insanely busy as we finish up the final tasks related to selling our current home and moving. The movers come to pack up the house on Wednesday and load the truck on Thursday and then on Friday, one week from today, we begin our journey East. We'll have to go to a temporary apartment for about two months before we can close on our new house, so most of our stuff will be in storage since the apartment is furnished. I'm concerned about how Hannah will handle not one, but essentially two moves in two months. Right now she's pumped for the adventure and can tell anyone who asks her about how first we'll live in an apartment that will have a pool and a shower and then we'll move to our new house, but the reality I'm sure will be harder for her to adjust to. Please pray for us that we all make it through the ordeal unscathed and relatively in tact!


It's been a week and a half since Hannah's surgery and she's still in the recovery phase. The surgery itself went great. It lasted a bit longer than expected, but she came through fine. She had a rough time coming out of anesthesia and got a bit violent, but apparently that's not too unusual for kids since they are so disoriented. It was planned ahead of time that Hannah would be admitted overnight at the hospital for monitoring so we were quickly taken up to her room. Her room was awesome. It was private, had two flat screen TVs and came complete with room service for both Hannah and Kyle and I. Hannah slept for a few hours and then woke up seriously thirsty and hungry. Over the next several hours she drank tons and downed 2 bowls of jello, a Popsicle, a bowl of macaroni and cheese, and a pancake. She was doing so well that the doctor decided that she did not need to stay overnight after all. They released us and we got home about 7pm. We had only had to be at the hospital for 13 hours instead of 36! YAY!

Hannah began running a slight fever the next day, but the doctor stated that as long as it stayed below 101.5 then she was fine, but if it got higher than that then we should take her to either urgent care or the ER. Around 5pm I took her temperature again after giving the Tylenol plenty of time to take affect. Her fever was now 103.6 and she had a nasty cough. Off we went to the urgent care. There she had a chest x-ray, urine culture, and strep test. We left the office with a diagnosis of post operative pneumonia and a prescription for an antibiotic. Hannah slept fitfully that night and finally awoke at 5am on Friday with a raging fever that Tylenol once again was not bringing down. We took her temperature and it was 104.7. Off we went to the ER. We got another chest x-ray, blood tests, IV fluids, a confirmed diagnosis of pneumonia, IV antibiotics and another oral antibiotic. 7 hours later we were finally discharged.

It's been a wild ride since last Wednesday, but it could be much worse. Pneumonia is nothing new at our house, although having it right after surgery is pretty scary. Now we just wait for Hannah's little body to kick this infection and finish healing up from the surgery. She has another appointment with the ENT for this Wednesday to check out all the post op stuff and then her primary doctor wrote a prescription for a follow-up chest x-ray to be done at the end of March after we've moved to confirm that the pneumonia is gone. Thursday while Kyle supervises the movers Hannah and I will head to Riley for her psychologist appointment. Pray that she is feeling well enough that she cooperates with the testing.

Wednesday, February 11, 2009


So. . . . This post is destined to be filled with LOTS of news. First off, Hannah had her ENT appointment today and it was decided that her tonsils and adenoids have to go or her apnea will most likely get worse as she (and the tonsils and adenoids) continues to grow. She'll also have tubes put in her ears to keep the fluid draining from her Eustachian tubes so that the hearing loss she's currently experiencing won't be permanent. I have to call tomorrow to schedule the appointment with the surgeon, but it will likely happen soon-most likely within a week or so. Because she's so young, the surgery won't be done outpatient like it usually is. They'll do it at the hospital and she'll be admitted for at least 24 hours after to be sure she's ok, drinking well, and staying hydrated. Do I sound calm, matter of fact, even happy to hopefully be getting my little girl some relief? I hope so. I'm trying very hard to be. BUT I'm not. I'm not in the least. I'm freaking out. The thought of my little girl having surgery, any surgery no matter how "minor" scares the begeezes out of me. Please send some prayers our way that we stay calm, Hannah stays calm, and that everything goes smoothly both during and after the surgery. I'll be sure to keep you all posted on when it's scheduled for and how she does.
Now, just in case that isn't stressful enough, here's the rest of our big news. We're moving. Not just moving like across town or even across the state, we're moving across the country-from Indiana to Rhode Island! I've been sitting on this news for about a month now, but have been unable to make it public because of Kyle's current (soon to be former once Friday rolls around) job situation. Being in limbo for so long has been stressful and now with the surgery it just got more stressful because they want Kyle to start on March 2nd, but we still have to put our house on the market, take a house hunting trip to Rhode Island, secure temporary housing, pack and move, Kyle needs to defend his Master's thesis, and allow Hannah at least 10 days to recover from her surgery! That is A LOT to do in 2 weeks. So, since we just found out about the surgery Kyle is going to attempt to negotiate a later start date citing extenuating and unforeseeable circumstances. Please pray that the new company will be reasonable and allow us the time that we need so that I do not have to stay behind alone to help Hannah recover and that Hannah will be recovered well enough to perform normally at her psychologist evaluation on March 5th.

While we feel that this move will generally be a positive thing for Hannah as far as the resources that will be available to her there, I am definitely concerned about how the actual moving and adjustment will play out. She's already on edge from our schedules being disrupted, our house being in disarray, and her sensory playroom dismantled. Two months in temporary housing might not be fun for any of us if we don't find access to things to keep her sensory diet in tact while the weather remains cold. I'm not sure a corporate housing company would be keen on us hanging a swing from the ceiling of their furnished apartment or bolting a hammock into the walls! Right now I'm praying we find somewhere with an indoor pool. It may be wishful thinking, but that would certainly make things much easier. Leaving the support network we've built up here will be hard on us all. Besides family, there are only two couples we have ever trusted to watch Hannah and who know how to handle a meltdown, we adore her therapist and don't relish the thought of having to find a replacement as great as she is, finding kids (and their parents) who will immediately "get" Hannah and her quirks and love her just the same just won't happen-it'll take time and for that I'm sad for Hannah. She doesn't make friends easily so for her to lose (at least for regular play dates) the only two she really has is heartbreaking to me. Though intellectually she knows that we are moving and is totally pumped about it, I'm positive she doesn't get just how far away Rhode Island is and that Evelyn or Addie won't be just stopping by to play anymore. :(

PS. Speaking of friends, Hannah recently hosted a "slumber party" for her best friend for 4 days and I got some great pictures. If these aren't the picture of happiness then I don't know what is. We've had a long road to get to this point, but we made it with two little ones so I know she can do it again. It'll just take time. Now, it's not all roses, shortly after both of these photos the happy moment was spoiled by Evelyn pushing the personal space issue just a tad too far and Hannah hauling off and hitting her, but those happy moments DID happen. That's a testament to the hard work both of these little ones have put in and all that they have weathered to make their friendship work.

PPS. Doesn't everyone have an old mattress in their living room for their kids to jump on? Don't even pretend you weren't thinking it! If you've ever spent a considerable amount of time with a sensory seeking kid with SPD then you'd understand.

Wednesday, February 04, 2009

Sleep Study

Hannah's sleep study was an absolute nightmare (no pun intended)! I will never in my life put myself through such trauma if I can help it. That being said, we did glean some useful information from it that I'll get to in just a second. First though, here's a rundown of our night just in case you were dying to know.
We arrived at the hospital a little before 8pm (already an hour past Hannah's bedtime, but that's when they start the studies). We were the only crazy people who braved the impending snowstorm to make it to their sleep study so we were alone in the sleep lab. The tech was a bit overly cheerful for my taste and definitely was not much for inducing a calm state for sleep. Her voice was loud and just a tad too fake cheerful and she constantly waved her hands around all over the place and bounced Hannah around. Hannah did AMAZING with the procedure for getting all the electrodes on her. She sat quietly and still while the tech glued, taped, and then bandaged dozens of electrodes all over her body. She'd actually been looking forward to going to the "sleep doctor" since I'd been talking it up so much in an attempt to head off any disasters so she was ready for the adventure UNTIL they put the oxygen tubes and carbon dioxide readers into her nostrils. The moment she felt those prongs being inserted into her nose big fat crocodile tears started rolling down her cheeks and she started saying "No, No, No!" in a very pitiful voice and trying to rip them out. We had to hold her arms down while the tech taped them to her face. It broke my heart :(

By 9pm everything was on her and it was time to go to sleep. At this point we are 2 hours past her bedtime and she's running on adrenaline. She continues to keep trying to pull out the oxygen and the tech seems pretty irritated about this. We go through her bedtime routine as best we can and then as soon as it's time for lights out Hannah says she has to go potty. If the tech wasn't irritated before, she certainly was then because she had to unhook all of the wires attached to the electrodes from the machine and the tubes for the oxygen and carbon dioxide so that we could walk to the bathroom. Then she had to hook them all back up after Hannah was done. Finally I get Hannah settled into the bed and I go lay down on the fold out chair in the room. For the briefest of seconds I think that she is actually going to fall asleep, but alas that was not the case. Hannah jabbers on and on to me until at least 10pm because I am in the room. If I fail to respond in some way, shape, or form she gets hysterical thinking I"m not in the room anymore and tries to jump out of the bed which is impossible with all of those wires. SO, I have to respond in order to keep her in the bed and attached to all of those electrodes. Eventually she fell asleep for almost an hour. I watched her blood oxygen level and heart rate monitor for awhile until I saw her pulse start to drop.

Convinced she was asleep, I allowed myself to begin falling asleep only to be awakened by hysterical screams of, "Mommy! Mommy! Mommy!" She was sitting bolt upright and attempting to rip the oxygen tubes out and the bandages off of her head. I flew off of the chair, tripped in the covers, and nearly did a face plant onto the tile floor as I stumbled over to her bed in the dark (I have terrible night vision!). I called for the tech (if she'd been paying attention like she was supposed to I would have thought she would have already been on her way since Hannah was the only kid in the lab she had to monitor) to come help me, but Hannah managed to get the oxygen and CO2 tubes out and some of the bandages off. The tech came in and reinserted everything and bandaged her back up. She was quite loud and didn't try at all to have a soothing voice or manner so that Hannah might not have woken fully up. She left and we started all over again. Hannah fell asleep about a half hour later and just as I allowed myself to drift off myself the screams started again. Because Hannah had to stay in the bed and keep all her wires and tubes firmly attached, I couldn't let her cry it out. I had to respond each and every time she started to get hysterical. This happened once every hour for the entire night. Hannah cycled through a 1/2 hour of sleep and then a 1/2 hour of calming down over and over again until at around 5am the tech came in and said that we should just call it quits. I spent pretty much the entire night kneeling on the tile with my arm shoved through the bed rails to keep Hannah from ripping off the electrodes or to calm her back to sleep when she settled down. I got quite adept at reinserting the tubes into her nose and extremely skilled at protecting the bandages and electrodes from her flailing arms. At one point the tech had to come in and unhook everything because she flailed around so much that she wrapped all the wires around herself and I could not unwind her and she was panicking because she could not move!

At 5am the tech came in and took off all of the electrodes and wires and monitors and sent us home. She said that Hannah had never stopped breathing and that she talked in her sleep with her eyes open and snored really loudly. I'm pretty sure she was not qualified to tell us any of that, but it is what it is. We were told it would be a week to 10 days before we had the results of the study. We had a horrible drive back home in a crazy snow storm with 3 cranky people in the car, but we all survived somehow.
Yesterday the developmental pediatrician called and gave me the results of the study. It turns out that Hannah did indeed stop breathing throughout the night several times. The study recorded what is considered mild obstructive sleep apnea as well as abnormally low levels of REM sleep. The doctor said that this may be a sign of Hannah's body defending against more severe episodes of apnea by preventing her from getting into the deeper stages of sleep where apnea usually occurs. She also concurred that Hannah does indeed talk in her sleep with her eyes open. This is totally freaky to me. Now I'll never know when she's actually awake. All the times she did it in the lab I apparently thought she was awake. The doctor referred us to a pediatric ENT (ear nose and throat doc) who will most likely remove Hannah's tonsils and adenoids as well as put tubes in her ears (more on that in a just a second). This will be done at Riley instead of locally because Hannah is so young and so that she will have a pediatric specialist for her anesthesiologist because of the apnea. Along with the fact that Hannah's adenoids and tonsils are most likely causing her apnea, they are also preventing the fluid from draining through the Eustachian tubes in her ears. She got an ear infection in early November and they have never drained since. At Hannah's hearing test (earlier the same day as her sleep study) she failed in her left ear and they of course detected fluid in both ears. They also recommended she see an ENT to drain her ears so it can be determined if the hearing difficulties are a result of the fluid or a sign of the late onset hearing loss that can sometimes occur in kids who had neonatal herpes.

Though the thought of surgery for Hannah is very scary to me, it's comforting at least to have some idea of what the problem is and to know that it's fixable. To think that she could soon be getting a good night's rest for the first time in her short life is a happy thought. It's also nice to have some validation that there was indeed something wrong instead of having to listen to countless people assuring me that I was just an over reactive first time mom and being told that no one's kid sleeps as well as they would like and that Hannah's "troubles" are completely typical.
PS. Thanks to all who sent well wishes our way before the study and who shared your stories about sleep. I really appreciated them!
PPS. Doesn't she look all cute in her bandages and wires? Even lounging in a hospital bed she's adorable! Although the head bandage to keep the electrodes in her hair does make her resemble a burn victim just a bit!