"Once our eyes are opened, we cannot pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." Proverbs 24:12



“There are no strangers here; Only friends you haven’t yet met.”- William Butler Yeats





Friday, March 20, 2009

WHHHAAATTTT?????



Do you remember this guy?

This is Bad Luck Shleprock from the Pebbles and Bamm Bamm Show. Remember how he used to walk around with a little black cloud hanging over his head? Well, I'm definitely not one to believe in "luck". but holy bejeezus....this is nutso.

So, here I am, cautiously optimistic about beginning to pack the bag full of toys and goodies Kai has accumulated during his $100,000 + vacation hospital stay because that's pretty much all we have. My clothes all went back with Scott so I've been wearing the same clothes for 3 days now and showered last 2 days ago. Yes, I must be a pleasure to smell....not! I digress.

Back to packing. As I was joyfully skipping around my little closet (I don't think I mentioned to ya'll that we were moved out of the penthouse suite 2 nights ago) of a room, the general doctor on the floor, one of the ones that needs to sign a discharge order, comes in. He asked about Kai and how he was feeling. Listened to his heart. We discussed the small de-sats last night and then he broke the news. "I'm sorry. We're having problems getting the insurance company to agree to paying for the sat monitor at home for more than 24 hours. We feel a bit uneasy sending him home without one. I spoke to the insurance company myself and they are reviewing it, but I don't know if we'll get an answer today" WHHHAAAAATTT?????? I didn't really yell it at him, but my mind was screaming it.

I then gathered my thoughts and said, "So does this mean that if we don't get an answer today, we are here until Monday at least? Because, as we both know, nothing gets done anymore on weekends." His response was vague. "We'll see. We'll see. Hang in there!"

UGH!!! Can you note the frustration in my voice?

His cleft surgeon had told us not to put all our eggs into a monitor. He said that yes, monitors are good, but they can also be a false sense of security or vise-versa He was right. As Kai was sitting here playing this morning (after the doctor had come by) the monitor alarm went off and it showed he was de-sat'ing down to the low 70's. That would be enough for immediate intervention. Two nurses ran in the room. Kai was on his knees on the bed, pushing Hot Wheels around while saying, "vrrooomm....vrrroooommm!" They said, "I guess he's not in respiratory distress, huh?" Ummm...."NO!!" I asked them to take the monitor off of him since it was blatantly obvious that this one was not working. They agreed.

Now we sit and wait to find out what our weekend plans are.

Lord Jesus,

Please intervene. You know exactly what Kai's levels are. You know exactly if something is wrong and we know with all of our hearts that you are the Great Physician. Father God, we ask for your intervention in this process. We surrender it all to you and place the entire situation in your hands, but most importantly Father, I trust with all my being that you, the creator of this precious child you have blessed us with, love him unconditionally and want the best for him. We raise him up to you and surrender his condition to you, Father. We ask for complete healing so that there is no question whatsover about whether he is still struggling with this issue.

We know Lord that whatever the outcome is, you will be glorified.

We thank you Lord for being in our lives and ask these things in your Holy and precious Name.

Amen.



Thursday, March 19, 2009

Let The "Son" Shine!

To say I'm exhausted doesn't even come close to how I'm feeling.

Last night was a good night! Yayyy, God! That doesn't entirely mean that Kai didn't de-sat, he did. But, nothing like the previous night. Poor kiddo fell asleep after the IV fiasco. About an hour into his sleep, his levels went down and the alarm made me jump out of my skin. 83...82....81, then a quick jump back up to 93. About 3 minutes later, same scenario with the exception of the numbers just a tad bit lower. 81...80....79 and again, back up to the 90s. That was it. That was his total de-sat for the night. I must've fallen asleep because when the nurse came in at 5 a.m. for his drops, I looked at the clock and said, "Oh my God! I must've fallen asleep and didn't keep an eye on his de-sats." She said to me, "There was nothing to keep an eye on. He's remained in the 90's all night!" Did I already say, "YAAAYYYY, GOD!!!"?

I kissed his sweaty little head, rolled him over a bit and curled up with him to sleep another 2 hours. When I opened my eyes at 7 a.m., I felt as if a Mack Truck had run my head over. It was throbbing. I sat up and felt a wave of nausea overcome me. I knew immediately that I had a serious migraine. My first thought? "Damn! No pills!" I usually carry them with me, but had sent them home in bag with Scott. A few minutes later, I was told by the nurse that transport was coming up to take Kai for another chest x-ray. I got up and as I was walking to the bathroom, the nausea overtook me. I ran inside and threw up. After washing up, I came out and told Kai I was going to the pantry down the hall. I poured myself a weak cup of coffee, only to throw it all up again as I walked back into the room. This trend continued 4 more times in the time we waited for transport.

There's a pharmacy downstairs that I knew I had to get to, because if I didn't take something soon, I'd be completely out of commission. But, I also knew that Kai is scared witless when it comes to tests, x-rays, blood drawn, etc. I couldn't let him go down to x-ray alone. I knew he'd freak. So, I bit the bullet, carried a little basin with me, just in case, and went down to x-ray.

As soon as we arrived back to the room, I asked the nurse to please keep an eye out for him and I went downstairs to buy some Ibuprofen. I popped 4 of those babies and laid down next to Kai. We watched Nemo (again!) with several intermissions of Kai nudging me when he heard me sleeping, followed by, "MAMA! Watch the movie!"

Otherwise the day was non-eventful. The ENT and pulmonologist both came in and everyone is in agreement that if we have another "good" night, we can be discharged tomorrow, taking a Sat monitor home with us as a keepsake. OK, not really a keepsake, but it certainly will be a reminder of our 12 days in the hospital every night when I plug him into it.

Two incidences worth mentioning.

First: Scott picked up the kids last night from my Mom's house to take them to dinner and then took them back and said prayers with them and tucked them in. It warmed my heart to see them so happy and playing. This little clip was taken by Scott on his cell phone. The beginning of the clip is when AJ fell on the driveway and was asking for a kissy on his boo-boo.


video

And then, my sweet sister did something that made my boy, Kai, smile from ear to ear. I was going to try to video his response as he watched the clips, but the Internet here is so painfully slow that I'd have to be here for 3 days for it to download. I can tell you that he smiled and laughed and answered each question asked of him. It also made Mama smile BIG. Thank you, Ily for thinking of such a sweet thing to do for my boy (and his Mama).






(Excuse the side-way view - my sister wanted to get Kai's Shu-Shu dancing for him.)


Please remember as you head to bed tonight to say a short prayer specifically asking our Lord to allow Kai's Sats to remain in the high 90's.


Thank you all again for your emails, comments, phone calls and support. You really. really. rock!!!

Wednesday, March 18, 2009

The Best and The Worst

I apologize for writing this update so late, but I've been trying to think about the words I need to type in order to get this done. The ENT came in and we discussed the fact that Kai had de-saturated as low as 72 the previous night. Here's our options: First of all, Kai needs to have TWO good nights of steady high saturation levels (90's) in order to be discharged to go home without further problems. This is worrisome to the ENT. We decided to do the following:

Plan A - The Best Scenario) If he sleeps for two nights, no problems with dips in saturation, he will be discharged on Friday to go home with a monitor that will track his levels. If we notice his levels are lower than what should be, he can be either put on a CPAP machine (which we tried in the ICU in Ft. Myers and he HATED!) for approximately two months to see if is levels have normalized or we can take him to Orlando to see his cleft surgeon and discuss the alternatives there.

Plan B - The Worst Scenario) If he does horrible for the next two nights (Jesus...please don't let this be the option!), we will then go from this hospital directly (probably another airlift since they don't want him traveling by car/ambulance in respiratory distress) to Arnold Palmer Hospital in Orlando directly, without going home. There he will be seen by his surgeon and a new team of ENTs.

Plan C - God's Miracle) That he have two great nights and go home without every having any apnea issues again!

Neither option A nor B sounded to me like it was a "Everything is great. You're discharged. Have a nice life" kind of answer. So, I'll have to keep believing that my God is bigger than any predictions any human man can make. I'm praying for Plan C.

I think I've covered every emotion possible today, from watching him sitting on the bed playing with playdough and my heart breaking to anger at why this is even happening. I have felt guilt because this may have all started with his catching bronchitis. Should I have been more vigilant in making sure he didn't catch anything? AJ was sick prior to him. Should I have separated them? There are so many should've, would've, could've that I'd go nuts thinking about them.

It's now midnight and Kai had fallen asleep finally out of pure exhaustion around 10:15. I kept vigil over the monitor and prayed with each time the numbers changed. They all remained in the 90's (PRAISE GOD!!!!) but then they came to wake him to give him meds through his IV and that was it. Again, all hell broke loose.

He had been complaining that his IV (his 3rd one here) was hurting. Sure enough, it was leaking. They called the IV team and it took them three tries to get it in. Poor baby screamed and looked at me with those big, beautiful eyes waiting for me to stop them. It kills me. It really rips my heart open to see him waiting for me to protect him, and I can't. I tried reasoning with him and then his little Chinese temper (the one that I know will get him very far in life) flared up and he yelled, "I no talk to you!" I continued to stroke his back as we both cried. My poor baby.

Oh, Kai-Kai. Although I tell you, I wish you really knew that I would trade places with you in a nano-second if I could little man. Every needle that goes into your tender skin, I feel in the deepest parts of my heart. I love you so very much and would do anything to take this away from you. You are such a brave little guy. Your Mama will be laying right by your side again tonight, praying in your ear that God's mercy rain upon you and this nightmare finally end. May you have sweet dreams, sweetie. Sweet dreams without having to gasp for air. I LOVE YOU FOREVER AND EVER AND EVER!

Yet ANOTHER Turn Of Events

I'm exhausted. I know I keep saying that, but even with sleep my mind is just continuously running.

Yesterday afternoon, we packed up after much encouragement from ICU doctors and nurses. Kai had a great night post surgery the first night and it was a gimmie that the adenoids were the obstruction, not to mention we had clearly seen it in the endoscopy.

When the ENT surgeon did rounds, he heard that Kai had de-saturated a couple of times into the 80's. At that point, he said he wanted to go ahead and transfer him out of PICU and put him in a regular room for one more night of watching his sat (oxygen) levels. We were bummed and devastated. Scott, Kai and myself had already envisioned ourselves at home with the rest of the gang and it couldn't arrive soon enough.

But, on the flip side, I understood why they wanted to watch him. So, under protest and grumbling, we arrived in our new room around 7:30 p.m. Scott had to return to work the next day, so he left back to the west coast around 5 pm.

Arrangements were made last night that as soon as the doctor came in this morning and gave the discharge orders, my Mom would leave the little ones with my sister and head to Miami to pick us up. Just one more night. I could deal with that.

The new room is bright and cheery. They let me lay next to my baby boy and that in itself (because it wasn't permitted in ICU) made us both feel better. Kai fell asleep around 11:00 p.m. They had not yet hooked him up to the Sat monitor. Around 11:30, the nurse came him, hooked him up and said, "Goodnight".

I watched the news, which included horrible news of 2 babies dying here MCH in the NICU from a bacterial infection that is spreading, and shut off the TV set around midnight. I, of course, began watching the numbers on the Sat monitor. They would range from 95-100 and back to 95. This continued for maybe another 20 minutes.

I prayed over my little guy and asked God to please continue to have him improve. A few minutes later, the numbers began dipping into the low 90's. Not ideal, but still OK enough for me to keep repeating to myself, "It's OK. He's OK." over and over.

I drifted off to sleep with those thoughts, only to be startled awake by the monitor's screeching alarm. He was down to 84. Then back up to the 90's. I prayed again that it was a fluke. A one-time thing. I was wrong. He spent the night fluctuating from the 90's to the low 80's and even dipping all the way down to 72 around 3 a.m. I noticed he held his breath a few times and counted the seconds before I saw him breathing again. The longest period was about 5-6 seconds. He is not gasping for air like he was prior to surgery, but it was by far not an easy night at all.

Now I remain confused. We were told swelling would set in 24-72 hours after surgery. Could that be the reason for his Sats going down? Is there still an obstruction there? And the worst of my thoughts have to be could Dr. Ego have been somewhat correct? Does his flap have to be taken down? So many questions floating in my head this morning. Are we going home? Probably not. Back to the ICU? Maybe. Will Kai have to go back into surgery? Oh, Lord Jesus, please let the answer to that be an emphatic, "NO!" In the end, I have answers to nothing. Today is day 8 that Kai has been in the hospital. I'm calling Kai's cleft surgeon in Orlando this morning and picking his brain.

I find myself, once again, scared, weary and weak. This time a bit worse because Scott is not by my side. I know God is by my side. By Kai's side. I also know there is a reason for all of this.

We now wait for the doctor to make his rounds. As I type this, he still sleeps. Alarms have gone off twice. 83. 82. I know I don't have to ask for prayers, because it is because of your prayers that we are being sustained. Thank you.

A very sad Mama.....

Tuesday, March 17, 2009

I REALLY MISS.....


  • AJ's giggle followed by, "That's funny, Mama!" in his sweet little voice.

  • Anna Grace's loud and super-high-pitched squeaky voice yelling, "....but Kai-Kai!"

  • Curling up with my sweet husband in my own bed!

  • Amanda rummaging through the fridge saying, "There's nothing to eat here.", when we just came back from grocery shopping.

  • Going out to the mailbox to get my mail, although I know there's really nothing there but bills.
  • The kids sitting down to watch a movie and hearing them in unison yell out, "Mama, we need a snacky, please."....over and over.

  • A nice, long hot shower in my bathroom, followed by a blow dryer and flat iron.

  • Anna Grace's attachment issues. (Is that crazy? But, I do! I miss EVERYTHING about her!)

  • My crazy schedule of driving kids around, softball games, t-ball games and just my plain 'ole insane-but-wouldn't-change-it-for-anything life.

Monday, March 16, 2009

I Am So Proud!

Mama Bear finally put her foot paw down and said, "It's time to sleep!" He is literally exhausted, and so are we. I just had him say goodnight to all his toys and his beloved portable DVD player, borrowed from one of the nurses. We said prayers and I tucked him in. I'm now settling myself in for the night, right in front of the monitor, to watch those levels.

I really am so very proud of this little guy. He has been through so much. I know (and how I wish) that if it were me laying there after spending over a week being tested in just about every form possible, having blood drawn daily, IV's changed 3 times, giant x-ray machines, CPAP machines being pushed into my face, strapped down on a gurney and raced into a helicopter, covered in sensors and stickers for sleep studies, echo cardiograms, EKG's, vitals checked once an hour and tons of wires wrapped around me, I'd be really. sick. of. it. all! Kai has taken it all in such stride.

Many of you have reminded me over and over that God has big plans for this little boy. I believe that. With all my heart I can see it. He will overcome his speech impediment. He will overcome every obstacle in his path. He will do something big with his life. His perseverance and resiliency is astounding. He's a survivor. He survived an orphanage that was incredibly scarce of basic human needs. A place where the sick just got sicker and where a nanny that he learned to love tried to give him whatever little she had to offer. This little boy that lacked complete stimulation for the first 22 months of life, now has a soaring spirit filled with unyielding determination. I am so honored and blessed that God chose me, of all women, to be his earthly mother.

We received absolutely no notice when they walked in, two hours earlier than scheduled, to tell us that they were taking Kai to the O.R. The fear in his eyes as he was rolled, once again, down the white, sterile-looking hallways that led to the pre-op area was heartbreaking. We waited in the pre-op and went through the routine of meeting with the doctors, as he sat there pretending we weren't in the room. Daddy gave him his Blackberry and let him take pictures which made him smile a bit. A few minutes later, he was giggling away on his Versed cocktail and minutes after that he was whisked away while waving goodbye to us.

When it was over, we learned that he had lots and lots of fluid in his ears, which we knew from his earlier tests when they told us he had a moderate hearing loss. Tubes were placed releasing all that fluid and his hearing was quickly restored. The doctor removed as much of the adenoids as possible, but there was a bit under the now infamous flap that he couldn't get to.

Right now, the most important prayer requests are that the removal of the adenoids, once and for all, was the cure to the sleep apnea issue. Also, his oxygen levels (saturation) need to remain ideally above 95, but the doctors will accept 93. Thus far, while I've been typing this, he dipped down to 89 for a quick second, but I've been diligently watching and for the most part, it's remained in the high 90's. I've been praying hard all night. In the end, I know God is in control and I know He loves my baby boy, more than I ever could. I know He's watching over Kai and His angels surround him. I pray that He continue to protect him and that this be the end of this saga in our lives. As my dear friend, Terryn said, "My prayer is that our family gets hit with a huge wave of complete boredom!"

As always, I can't sign off until I thank you all and ask God to bestow His abundant blessings upon you for being such loyal friends and for loving and praying for our sweet little man.

Hugs,


NO NOTICE! KAI'S BEING TAKEN TO SURGERY RIGHT NOW......PLEASE PRAY!!!!!!!

Updated: 4:25 p.m.: Please check Twitter for now for updates. Internet is horrible. Scott and I are praying at his bedside constantly and watching that those Saturation levels....they need to remain above 95 for him not to be intubated.

God's presence is here, as is His Blessed Mother's. I know it's all the prayers going up for him. THANK YOU!!!!!






Monday Morning Update

Boy, I'm missing home and my kids...a lot!!

I got to the apt. last night at about 11:00. For those that don't know me well, I'm a huge chicken! I had Scott on the phone as I walked in, just in case there was someone hiding in closets, or behind shower curtains or under the bed (yeah....too much "24"). After pushing the couch to block the front door (By the way, we really are in a great and very safe part of town. I'm just a chicken.), I gave him the all clear and we said our good nights. I eventually fell asleep. I woke up this morning bright and early, showered and am now at my boy's bedside. He's still sleeping.

The report from nurses and Daddy was that he had a good night. His oxygen levels dropped into the 70's only once where he had to be stirred to breathe, otherwise they remain low, but not dangerous. His chest continues to retract into his spine as he struggles for air.

Scott was preparing to go back to the apartment now for a shower and to grab maybe 2-3 hours of sleep since he was up all night, not because of Kai, but because of another little two-year-old sweetie that screamed all night long for water and wanting to go home. Poor Scott greeted me with bloodshot eyes and nappy hair. (OK. People without hair - notice I didn't say bald) can't have nappy hair but I wanted you to envision the full effect). My sweet husband is incredible and I know there is no way that I could ever do this alone. Thank you, Jesus for blessing me with such an amazing man!

As Scott was leaving, he leaned down in the chair, that now has permanently formed imprints of my large bottom, and kissed me goodbye. As he was kissing me (and no, nothing that should not be done in public) I felt his hand stroking my arm. In my still not-quite-recouped mode, I thought, "Awww...how sweet he's being. I miss my hubby." But then he stood up and was standing in front of me and the "hand" was still stroking my arm. Then I thought, "What the hec?" I turn around and voila! Standing before me is Dr. Ego. I didn't know what to say and obviously neither did Scott because the three of us just stood there for a very long second. My immediate thought was he wants to partake in the surgery. Just before my imagination took off, he interrupted my thoughts by saying, "So, I hear you only want his adenoids removed." Scott said, "Yes, that's what we decided." I then followed it with, "We are taking the conservative approach." He listened and said, "Well, I hope that works. If not, we can always go back and take down the flap." as he was looking at Kai. UGH!!! Neither Scott nor I responded. Then he arrogantly spun on his heels towards the door and said, "I'll keep tabs on what's going on. Have a good day." And off he went into the sunset. (Not really the sunset, but you get the picture.)

Kai is tentatively scheduled for his surgery at 2:00 p.m. today. Of course, it might change according to the timing and complications, or lack of, in the surgeries prior to his. I will try to Twitter updates throughout the day since it seems to be the easiest thing to do to keep people abreast without having to worry about the Internet dropping like a hot potato in the midst of my thoughts.

Love you guys and thank you for your prayers. Your words of encouragement are very uplifting and when I find myself feeling low, I go back and read all the emails and comments as a reminder that we are not alone in this. I know our baby boy is completely bathed in prayer and I absolutely feel the presence of our Savior holding Kai in his arms as we wait for an end to Kai's breathing struggles. He really did never leave me. God is good....ALL THE TIME!

Before I go, I wanted to say a quick Happy Birthday to my precious nephew, Anthony. Sorry kiddo, we couldn't be with you today, but know that your Uncle Scott and your Titi Ohilda love you so much as we are SO very proud of you. BIG KISSES AND LOTS OF HUGS!!!


Sunday, March 15, 2009

Almost There

IMG_70771

Kai misses his family so much! This morning he drew this picture for me. It's Mama, Daddy and all his siblings.


We're still here. I'm going cover Kai's update but there's no way I could do so without first (again) saying a huge thank you to so many of you. You truly have no idea what it means to me when I open your emails and read that your churches and families are lifting up Kai in prayer. Yesterday I received a phone call from a reader that a mass asking for prayers for Kai had been given at a convent in Santiago, Cuba. Families are praying in Norway, Mexico, Canada, across the U.S., the U.K. and I'm sure there are other places that my feeble mind cannot think of at this moment as I wipe tears away. THANK YOU! THANK YOU! THANK YOU! (If I have not responded yet to your emails, I definitely will. The internet connection in ICU is comparable to China's. I guess that says it all.)

In the midst of all of this, there have been so many times this week that I have thought about his birthmom. I would love for her to someday know what an amazing little boy she blessed us with. I know that her heart would fill with joy if she knew how happy he makes everyone he meets, but more importantly how happy he is. That's why watching his struggle makes it all the more difficult.

Kai had a great day yesterday, except when he slept. He's tired. Physically. Emotionally. He's scared and truly doesn't see himself as "sick", making it so hard for him to understand why it is he's here. There's no way you can explain surgery to a 4 year old, especially one who's been through it already 5 times since he's been home. But, man oh, man! This boy is a trooper. He's got a hot, little temper and by no means does he willfully agree to be poked and prodded. Yet, after the moment ceases, he's immediately back to his playful, joyful, loving self.

Last night he had a Sleep Study or Polysomnogram done. The "man in the white coat" came in and Kai immediately became leary and rigid. As the man rolled his equipment-filled-cart into the double doors of the ICU, Kai instinctively knew it was for him. We quickly tried telling him that there would be no ouchies and that they were only putting little stickers on him, like the many that he already has on. No dice. The fear in his eyes set in as he s-c-r-e-a-m-e-d bloody murder, heard throughout the halls of the ICU. I handed him his little pillow, one that he never parts with, and he threw it across the room. I tried getting close to him, he pushed me away. Scott received the same reception to his approach. So, we did what had to be done and held him down for approximately 45 minutes until he was completely covered with gold plated surface electrodes that were glued to his skin and scalp. Then two sensor belts that recorded his breathing were tightly strapped around his abdomen and chest. Finally, the killer was the Nasal Airflow Sensor. This is a long strip that gets taped down to his face, above his upper lip, from cheek to cheek. This sensor records breath temperature, airflow, apnea and hypopnea events.

IMG_70692



By tomorrow we should know everything about his sleeping patterns, including how many times he stops breathing, for how long and how often. I know that we watched him and the monitor most of the night and I had to hold my own breath as I was watching his breathing cease for up to 40 seconds at some points. Very scary! He was not allowed to be on HeliOx (oxygen/helium mix that he has been on) nor of course, was any sedation permitted. When his oxygen level went down to dangerous levels and remained like that for more than 10 seconds, a quick "blow-by" of pure oxygen was given to him. These episodes continued the entire night. He didn't sleep well at all, and obviously neither did Mama.

This morning, Scott arrived at the hospital bright an early with breakfast. Kai got his first shower (after much begging the doctors) in almost a week and he looked and felt great. At about noon, I sleepily stumbled my way out the door of the ICU and to the apartment, where I took a quick shower and fell into bed. I awoke 2 hours later feeling so much better!!!!

Since the surgery is tomorrow and Scott has to head back to Fort Myers, it means that I will be manning the fort alone as of tomorrow night. We unanimously decided that I will go get a full night's sleep tonight while Scott stays bedside. That way, I will have the energy to keep going for at least another 3 days. We're reaching the end of this journey, God willing, and I can't wait to get there!

Tomorrow morning, Kai will be taken for an audiology test and then will have his adenoidectomy. We still don't know the time. Most children go home the next day or some even the same day after this surgery, but due to Kai's severe sleep apnea, he needs to remain in observation with monitors in ICU for at least 2 nights. My goal to getting home is Wednesday. If this happens, we just have to figure out how I'll get back since Scott is taking the car back home tomorrow night. But in the scheme of things....that is SO small.

Much love and many thank you's for your prayers.....

Ohilda, Scott, Kai and the entire Bombardier clan!

PS. Some of you have written asking about Scott's version of the helicopter. He did post it. I'm not sure why some of you haven't seen it. You can find it by clicking HERE.

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