Tuesday, March 31, 2009
Wow! That last hospital stay left we so tired! I needed time to gather strength and go back to my divalicious self... But that's done. With mommy and daddy and NurseMicheila, I am ready to take over the world!
Last week had my first appointment with the new pediatrician at Children's Specialized. Wow! I was blown away! Everyone is nice and courteous and smiles! And the facilities are so neat and clean yet so bright and cool! I liked that place. I felt like a queen! I was checked up by DrVelickovic, and she was very careful to get all details about me. She prescribed visiting the SMA Center at NY, and seems that they have plenty of experience dealing with DrBach's ways. The emphasis on TEAMWORK is a true blessing!
Today I had my first appointment at Children's Specialized too with their physician, DrArmento. His crew and himself were great as well. At all times they show great concern and true caring. I will get a hip x-ray in April so I can finally get a stander. He also prescribed a small change in my AFO's as they are getting a bit tight. I was very pleased with the service. Finally, doctors I look forward to see and deal with! Who knew?
The transportation team has also been cracking us all up. By now, they always remember me and all my specific needs, and they are happier and talkative by the minute. It is great that we are getting service with people that are actually caring. It makes everything easier, and takes some stress off mommy and daddy. If they are happy, I am happy. You know how it goes...
NurseMicheila didn't bail on us, and each day surprises me with new things. Now she's emphasizing those funny flash cards... What's with everyone? Baby Einstein, colors, shapes, now flash cards... What's next? A laptop? Geesh! People: I'm a baby! Ok, technically a young toddler, but a baby nevertheless. So, come on! More Wonderpets wont hurt. Ok?
I know, I know... Things have been easier on me since the hospital thinguie... But now this week begins my daily routine in full throttle! Gotta shape up, shape back, get my finger-muscles moving! Gotta become a clicker expert! Gotta play those toys like there's no tomorrow, and learn those shapes and colors, and surprise everyone with my first word! So much to do! So, yes... All therapies will start again from today. I'll finally get my hair washed, and will say hello to the tub, the bathing chair, and floating Ariel. It's been two months!
So, many hugs and kisses to Sti and Maria... I miss you guys! And to Auntie and Grannies. I keep hope that I will be home soon. We all want to be home soon... There is no place like home.
God: Thank you for granting me health. Thank you for allowing me to bring a smile in everyone around me. Let me be an instrument of Your might. Let me bring hope to all of those who need hope, let me testify Your goodness, Your beauty, Your blissful love. Thank you for constantly bringing miracles into my life, for making me part of Your BIG plan every second. My life is in Your hands, always. Thank you for granting me people around me who love me so much, people who know me, and so many that don't but that help me and show me love anyway. Please grant healing and peace to all who need it, grant courage and strength to so many parents dealing with SMA and with other rare or fatal illnesses... Show them the way. Cover us with Your warmth, protect us, be with us always. Amen.
Sunday, March 29, 2009
Check my new place in the internet. Mommy designed it in her Dreamweaver class... I think it rocks! It even showcases my special song (created by Songs of Love's Steffani Bennett, who wrote the lyrics and sang the song): DEIRDREMEDINA.COM
This is so exciting! Mommy finished her classes and created two sites for me, one in Flash and one in Dreamweaver. My official site is the Dreamweaver one, but it will have a link to the Flash one as it has a cool animation of my alter ego, a little butterfly, fighting a big mean dragon (the SMA monster). Mommy hopes to create a cartoon about me, but that is a coming soon...
I am so happy about my song! The Songs Of Love organization believes that the best medicine is music. They are a charitable organization that provides personalized songs to children and young adults facing difficult medical challenges. Each song highlights the distinctive personality of each person. The finished product is incredible! Each song is unique, never duplicated, and they don't charge for their services, relying on donations.
Steffanni Bennet created and sang my very own song! Wow! It's almost as if she knew me so well! You can hear my song in my webpage. You'll LOVE it! My song, and ringtone, are available for download (requires a minimal donation, you will help the Songs of Love organization, and will see that it's worth it!). Go to their website, click on the "Family & Friends Song and Ringtone Download link (left side, circle of pictures), type Medina Rivera and the number 18280 in the child's record number field, and select what you want.
Besides this organization, I also want to thank my very own photographer, Natalya, for taking beautiful pictures of me. She is part of another program named "The Little Heroes project". She did a great photo session, and although I was very moody because of being teething, she managed to take beautiful, stylish pictures of me. Find Natalya's work in Zilotis Valentine Photography Website (NJ). Natalya is very sweet, and she shows much caring and love in what she do. Check me out in her site's gallery! Am I a Diva, or what! :)
This is what the Littlest Hero Project is about:
These two organizations have lifted my spirits, making me smile and spreading the word for hope. From the bottom of my heart, thank you.
Thursday, March 19, 2009
These have been some busy stressful long days! We hope that now that Spring is finally here, the climate gets a bit warmer and baby stops feeling so sick. Deedee has many appointments ahead of her: She needs to see DrBach, then go to Children's Specialized for an appointment with the pediatrician and another one with the physician.
Everything else must be figured out: Welfare, housing, jobs... Everything was put on hold for a whole month and now it all greeted us at the same time. The long days are not over, that much we know. But as long as Deeva gets better and stabilizes and gets back to her routine, then things can move in a positive way. She is the center of it all and she knows it. It's a long process... But we keep hope that things will get better. It all is in God's hands.
Deeva has been stable, keeping her HR a bit high but her O2 at 94-96. Seems something is causing pain, and it all points out the teething of the upper teeth. That may be contributing to the high heart rate. Besides that, now venting needs to be done each time she gets a feed. Maybe it has to do with the extra fast feature in the hospital... she is used to 135/hr and they give her 200/hr... Maybe it is due to air going to the stomach instead of lungs while coughalating... Too many maybes. At least venting solves the "being bloaded" factor. Secretions are under control, the difference now is that the plugs are like "chicklets", meaning that they are thick and sticky and big. Her lungs are clean, so everything is upper respiratory... Secretions are getting stuck in the back of the throat becoming that big blog that causes the out of the blue drops. By now, the intense sessions of suction, postural drainage and coughing has been working and her dropping numbers are not going far in sudden jumps, but they are staying in the 80s at least. after treatment, Deeva returns to the 94-95.
So, Wednesday at midday we got the news that we were going home. YAY, again! Deeva got all dressed up and ready to go. The guys from Lifeline were surprised when they arrived. "What happened?" What always happens... well... Being stuck in a recurring re-run. Not funny. At least Deeva seemed to comply with the idea and was in good humor the whole day. Seems she is finally tired of the hotel... erm... hospital... and finally acknowledged that there is no place like home. Seems that her lungs were not ready to work on their own and that's why they gave trouble ( RSV and 2 pneumonias in a row can be very taxing). Seems she needed the attention and the break. Seems now she feels she can go home, and work it!
We arrived by mid afternoon, daddy helped carry baby to her crib, and we get to the realization that "Wow... She is outgrowing the crib!". Yes, seems each time we get out of the hospital the crib and clothing are smaller... Well, Deeva enjoyed some Lion King and WonderPets, she got her night treatment and feeds, and went to sleep. All in all she has remained stable. Gave some triuble after treatment, staying beeping at 92, but after a while went up to 96. So far, the night has passed without mayor crisis. Amen.
Sunday, March 15, 2009
Oh, how peaceful our Deeva looks while sleeping! Well, don't you get any ideas about that! I tell you, it's a charade. The minute she feels that you are about to leave her side, even if it is just to go fetch something to drink or eat, she will unleash her real not so peaceful self! Yes, Deeva is VERY demanding. If Mommy AND Daddy are not available at the same time, she makes sure to get the point across that she is not pleased. One beep, two beeps,... a whole orchestra... She demands her minions attention, and she demands it NOW!
Well, basically that is part of what happens. If Mommy and Daddy are taking care of her together, nothing of deep interest happens. But if one of them gets out of sight... Beware. Something wicked can and will come your way. most of the time we don't really think it is on purpose (hey, there is so much technology a baby girl can really command), but sometimes it all makes us go Hmmm...
After the Chicken Incident Day (yup, when we got readmitted to PICU and ended up having dinner looking at the lovely Newark city while enjoying BBQ almost squashed chicken), Saturday was a bit more quiet. Daddy got a visit from the Circle of Life (ironically Deedee was watching Lion King, no pun intended). They may be able to lend a hand, fingers crossed on that one. Besides that, nothing else besides Deedee sleeping a lot. She's getting her respiratory treatment every 4 hours, but her lungs are clear. Main problem seems to be the higher airways, and phlegm building up around the apices and up. Sticky gooey phlegm that is hard to get out and that makes her plunge to the 70s when you least expect it.
That is the basic big bad problem: the sudden drops that have no apparent reason. No beeping can go dismissed or unattended as any beeping can mean a desat that came out of the blue. Most of the time suctioning doesn't do the trick right away. We are making good use of the trendelenburg positioning of the hospital bed, along with percussion by the clock. That seems to work better than the cough-a-lator for these specific cases as secretions are up, in big need of getting loose.
Sunday morning X-ray was a bit delayed, but done... and the X-ray looks clear. Like that is some news... During the morning 3 desats, the afternoon had 1. And the night had 1. Where they come from, why... The world may never know. But as long as that keeps on happening, we are not getting off PICU... And that is the most frustrating thing of all.
You stay in a hospital for a week, and it is ok... By now, the monthly stays are really taxing, draining, frustrating... How to get life back in track? Deedee was making so much progress, but now this month stay lands us back in the gotta start up the exercises, physical therapy, speech therapy, cognitive therapy... Ugh! Not much you can achieve in a hospital, where poor baby cannot get the rest she needs and so is weaker than usual. At least she takes solace in her movies and series... Today she was making sounds and smirking while watching Little Mermaid... That always makes her happy.
We really hope that Deedee can come home soon, this next week. We hope that an answer comes along, so she can be safe, and back on track with her much needed daily routine.
Keep prayers coming. Mommy and Daddy need rest and energy to go on. We know what we have to do, and we do it... But we do need a moment to actually breathe. May God grant us peace, happiness and ongoing togetherness. May Deedee heal soon, so we can all be together, in our home. May miracles keep happening into our lives, and the lives of everyone who needs them.
Friday, March 13, 2009
So... Baby has been sleeping a lot. She spent the night sleeping. Oxygenation hovering in the 90s but not staying put. At 3am we got a BIG nasty plug out of her, so maybe THAT was the main problem. We felt her warm in the morning, so she may be getting down with another bug... Gosh, come on! Yesterday she was home just for 3 hours! Three hours! And I had cleaned up EVERYTHING. This is so frustrating... We don't know what else to do, or think.
In the meanwhile... Deedee has spent the day resting. Luckily she has only been getting albuterol, mucomyst and her usual coughing/chest pt. Yesterday we feared she might get intubated again for her lack of keeping her stats, but since she kept the changes in the 90's she was just put in watch. We'll see how things change over the weekend...
BTW, it's a bit late for this (it was in March 11th), but HAPPY BIRTHDAY GREAT AUNTIE!!!!!! We all love you!!!!
Prayers keep going. Belief and hope is strong.
Thursday, March 12, 2009
FINALLY!!! It is 4:00PM, and Deedee is sleeping in her own crib, Amen! She was discharged today, as everything seems ok. So far, her desats are fixed mainly with positioning and chest-pt, so that is something to watch. She is still recuperating, so she needs time. We foresee endless sleepless nights ahead of us... But at least it is not at the hospital. That is a big nuisance (distance from home) and gets expensive (food and transportation).
We are happy that we are home, at last! Keep praying for Deedee, so she heals completely. She is very frail, and right now that is exponential until she gets her strength back. That will take a while, we know it. Hopefully, this will be the last hospital visit for this season (fingers crossed).
Thanks to everyone that has been emailing, calling and leaving messages. Your support and prayers have been fueling us so we keep going like the Energizer bunny. And even if we are tired and very sleepy, we keep on having strength to go on. God keeps on being good to us, helping baby and giving us true hope.
So... baby is resting, we are home... And now back to the "normal" schedule... If there is such a thing. So far the biggest problem is her fast desats. The pulse-ox keeps beeping and its driving us insane... And it can't be ignored because of obvious reasons. Keep us in your prayers so baby stabilizes soon.
WEDNESDAY at 9:30 AM Baby got extubated after a nice bath. The tube came out clean, no secretions at all. So we all expected that this time baby got better for real. Her Xray showed her lungs were clean. Hopefully she wont be desating much during the day...
During the afternoon we got a visit from Early Intervention's Pat. Deedee was sleeping, of course, so she missed everything.
The night had no further complications. Baby keeps her sats at 97 when sleeping, and 95-96 when awake (that's what's weird right now). But so far positioning does the trick when numbers seem off.
Sunday, March 8, 2009
The bronchoscopy on Friday went well. The airway and lungs are quite swollen. Inside, the lungs had many secretions stuck everywhere, so the pulmonologist washed the lungs with saline injections and then cleaned up taking away stubborn big pieces that wouldn't let go. Steroid and nebulizer, then the wait to see how things turned out. Some secretions were yellowish, so she must have some infection. She was out for a while, and is intubated. Two hours after everything she started to react, and we stopped holding our breaths. She looked in pain and very uncomfortable. She got Tylenol, and suction, and soon she went back to sleep while listening to her favorite music. The night went on without much commotion. Deedee's getting Pulmozine, Pulmocort and Albuterol. At night she had a slight fever, so she was started on antibiotic too.
On Saturday she got up quite early in the morning (5am). She looked much better. Didn't show signs of being in pain and didn't fuss much while being bathed. Refreshed, she just went on watching Fantasia and Wonderpets, and fall asleep by midday. During the afternoon she woke up in time to see Daddy arriving. So Daddy went on to do the night shift, and reported no problems.
Sunday has been slow, baby has been stable and keeps on getting all her meds and nebulizers. So far, so good. She came back with steph, which the doctor found odd. The rest of the labs should be availbale tomorrow.
Baby is alert, very interested in her Wonderpets, stable and hovering between 95-97 of oxigenation and 130-150 heart rate. Slowly getting back to normal. Her secretions are clear, and she looks content. We hope this time they wait to extubate when she is completely off sticky secretions even if they are clear. So far, plenty of secretions keep flowing thanks to Friday's lavage. Xray showed a bit of improvement. We need more time for healing process to take more effect.
Thanks EVERYONE for so many good wishes sent our way, and for so much prayer. Friday was a very scary day, many things were at odds, and baby had been having things very rough. We strongly believe your prayers and good thoughts have made the difference. We know she feels it all. Her change in attitude was incredible. Our little girl is something out of the ordinary...
GOD: Keep watching over our little star, keep blessing her with your infinite Love. May she always feel the Love we all have for her so she knows she is never alone. May she heal so she come home soon. She is in your hands. Protect her, and work Your will through her... And through so many other kids that are also in your hands. Grant them all healing and happiness. Amen.
Friday, March 6, 2009
Deirdre has been in the hospital for 2.5 weeks. At first it was due to pneumonia, but after it went away she keeps on having problems and the doctors have not been able to find out why. Her left lung keeps on being collapsed, and her right lung incremented its secretions and may also collapse.
The doctors wanted to avoid a Bronchoscopy, but they will do so today at 3:00pm. A bronchoscopy is of low risk in normal people, but in an SMA kid may bring on bad consequences starting simply by the use of anesthesia. The doctors hhope to see what is going on from inside, and to directly eliminate secretions. If after some hours Deedee doesn't get off the effects of anesthesia, she will have to be intubated again.
We are asking of everyone that knows us to simply send out a prayer for Deedee's sake. We only ask of God healing for her lungs. Please, join us in our prayers.
Monday, March 2, 2009
Deedee has been with too many secretions on the lungs, which has been causing trouble in terms of desaturation and high heart rate. Her numbers drop suddenly, then hover in the 80s for too long. This has been the pattern almost during every treatment session. Maybe the mix of albuterol/mucomyst is not the best for her... She has been receiving nebulizer treatmens of albuterol and Mucomyst with no success. It has been noticed her heart rate gets very high during/after nebulizers so we think it is obvious that the albuterol is affecting heart rate... but the desats are the big puzzle. She will start taking Pulmocort to see if that goes better.
The doctor is talking about doing a bronchoscopy by Wednesday if things don't get better to take a look inside the lungs and see what is going on. Xrays have shown she is worst than in the weekend, but the source is so far unknown. She has collapse in her lower left lung, and the right side looked junky. Deedee has been taking her respiratory theraphy religiously every 4 hours, but things have not improved. This is bad. We need to find the source of the problem and fight it. She has been enduring everything so far, keeping her spirits up, so at least we know she is not giving up. The pulmonologist asked the PICU doctor to give Deedee time, to try avoiding doing the broncoscopy, and give her time to react to the Pulmocort. We'll see what happens.
Main problem with the bronchoscopy is that she must be sedated. After the procedure she must wake up between 2-12 hours later. If not, she will have to be intubated again. During this hospital stay the hospital staff has been great with us, but Deedee has been very variable/ non stable.
Please pray for Deedee. She needs all the positive vibes and wishes that you can give, so God sheds some light on the doctors minds. We put our complete trust and faith in Him. He is the one who truly knows what is wrong and how to fix it.
Some definitions, FYI:
Mucomyst: This medication, when inhaled by mouth, works in the lung to thin mucous, making breathing easier. It is used to treat thick mucous secretions in chronic emphysema, bronchitis, pneumonia, cystic fibrosis and other related conditions.
Bronchoscopy: A procedure during which an examiner uses a viewing tube to evaluate a patient's lung and airways including the voice box and vocal cord, trachea, and many branches of bronchi. Bronchoscopy is usually performed by a pulmonologist or a thoracic surgeon. Although a bronchoscope does not allow for direct viewing and inspection of the lung tissue itself, samples of the lung tissue can be biopsied through the bronchoscope for examination in the laboratory. Rigid bronchoscopy requires general anesthesia and the services of an anesthesiologist. During the bronchoscopy, the examiner can see the tissues of the airways either directly by looking through the instrument or by viewing on a TV monitor.Complications of bronchoscopy are relatively rare and most often minor. It is important to realize that all procedures may involve risk or complications from both known and unforeseen causes, because individual patients vary in their anatomy and response to medications. Therefore, there is no guarantee that a procedure can be free of complications. The following is a list of potential complications: Nose bleeding (epistaxis), Vocal cord injury, Irregular heart beats, Lack of oxygen to the body's tissues, Heart injury due to medications or lack of oxygen, Bleeding from the site of biopsy, Punctured lung (pneumothorax), Damage to teeth (from rigid bronchoscopy), Complications from pre-medications or general anesthesia.