Friday, November 28, 2014
Wednesday, November 26, 2014
Tehilla is determined to keep us on our toes...
Last night and right now, Tehilla got hurt, started screaming hysterically, and then lost consciousness for two seconds. Her body went limp, her eyes unfocused and slightly dilated. Then she snapped back in, was dazed and then started crying again.
This is called Breath Holding Spells or Pallid Breath Holding. It is her response to pain and scares the <Enter your choice expletive here> out of you. Like I think Ron and I just went into some sort of cardiac arrest.
I spoke to our family doctor who assured me that we diagnosed right and that it isn't dangerous. He wanted us to talk to our cardiologist just to be sure there was nothing heart related, we were missing.
I called our cardiologist directly and he, as well, assured me that it poses no danger to Tehilla. This will be her response to pain, and she will lose consciousness but she will always regain consciousness about two seconds later.
Life should be fun when she turns three...with G-d's help.
Tuesday, November 25, 2014
We have about 9 days to go before Tehilla has her long awaited Glenn surgery. Every good doctor will explain a diagnosis and then offer a treatment plan. We have that. We have had that since I was pregnant with Tehilla. And yes, the plan has had many alterations along the way, but the basic structure of the plan has stayed the same- 3 stages of surgeries: 1. Norwood 2. Glenn 3. Fontan.
And as has already been explained on this blog, Tehilla is not a standard, or straight forward HLHS case. We are going into this surgery with added risk, due to Tehilla's raised pressures inside her heart and extremely small pulmonary arteries.
Every day, the knot in our stomach tightens a little bit more and we find ourselves hugging Tehilla a little bit longer and harder. We remind ourselves that this is our only option and that we must push forward.
This is the treatment plan that Ron and I have outlined for Tehilla's surgery. As our extended blog family, you should be aware of your role in this. ;-)
1. Incredible Doctors
We have a phenomenal surgeon, Dr. Erez and absolutely perfect cardiologist, Dr. Golander. We have complete confidence in them. Our instinct has told us repeatedly to trust them and we believe that Tehilla's remarkable well-being, is due to their critical decisions. We are going into surgery without the slightest doubt in our doctors' abilities.
2. Prayer and Actions
This blog was initially intended for family and friends to keep up-to-date on Tehilla's progress. Since the day the blog was published, it has gotten a bigger and stronger following. People have written to us from all over, telling us how Tehilla's story has inspired them. In turn, thousands upon thousands of people have been praying for Tehilla. This blog has helped Tehilla live up to her name, "Praise." Hearing about a miraculous little baby with half a heart has caused quite a commotion in the heavens. Tehilla's success is in no small part, because of you. Because of you- reading, saying Tehillim (Psalms) and keeping her in your prayers. This blog has had over 190,000 views. That is amazingly ridiculous.
People- sorry- You have heard our pleas for action. You have taken things upon yourselves in Tehilla's merit. The "No Talking for Tehilla" initiative (students have pledged to not talk during daily prayers in Tehilla's merit) that was started by Rabbi Baruch Gopin of Yeshiva University High School has increased to many classes and now, other communities in the US.
Rabbi Eliyahu Haber started a "No Phones for Tehilla" initiative (students pledged not to use their phones, while learning Torah in Tehilla's merit).
There is an initiative to increase awareness and learning about Lashon Hara (derogatory speech) in Tehilla's merit and an initiative to do acts of kindness in Tehilla's merit.
Of course, I also asked that people bake challah in Tehilla's merit the day before Tehilla's surgery (Wednesday, December 3rd) and 101 people signed up online. https://www.facebook.com/events/376364139194273/ As well, I have heard about various communities organizing big challah bakes on that day.
Our family's story may inspire you, but you are inspiring us, as well. You are giving us strength.
Please keep up everything that you are doing. I will post a reminder about baking challah for Wednesday, December 3rd. Remember to email the pictures to firstname.lastname@example.org with your name and city, and I will post them up on the blog.
3. Support and Love
We are surrounding ourselves and Tehilla with support and love. Our friends and family have all stood up and opened their arms wide to help us, while Tehilla is hospitalized. We have gotten many messages and emails from you and we love each and every one of them. They build us up and strengthen us.
You have shown us so much kindness and love. Every drop of it helps. Now, I have something extra for you to do.
WEAR RED FOR TEHILLA
This may seem insignificant to you, but it would mean the world to us. Show your support, and spread awareness while Tehilla is in surgery.
During her surgery, we will not be answering our phones or messages, but we will be seeing all of your photos. Her surgery will be 6-8 hours long. Getting these pictures during those frightful hours will fill us with warmth and love. I will post all the pictures that we receive to the blog.
We are getting our home and family organized. Trying to plan everything exactly and creating several backup plans. By the time we get to the surgery day, our home will be running efficiently and Mechal and Tzviel will be well cared for, and surrounded by family and friends.
5. Essential Oils
So, this is something new, for me. I'll be honest- I'm not a believer. Many, like a crazy amount, of heart mamas swear by using essential oils post-op to aid in recovery and healing. If you know me personally, you know that I am all about scientific backing, and this is extremely strange for me.
That being said, onions turned out to have some healing properties for coughs and have helped us in several difficult situations.
I am also willing to entertain the idea, that different scents and smells do help us to relax and are soothing. I can not see any reason not to try this.
We have had a custom essential oil massage cream made up by someone who does this professionally. She has named it "The Healing Heart Blend." It is made up of ylang ylang, geranium, lavender, cypress and chamomile. The idea is to rub it on her feet and for it to soothe and relax her, while she is recovering.
*Shrug* Why not?
6. Positive Attitude
Tehilla is going to rock her Glenn surgery. We won't entertain any other thought. We are pumped and positive and excited to witness a miracle. Do you believe in miracles?
My baby's every breath is a miracle. Her every giggle, her every severely psychotic cat "Meow" is a miracle. She shines bright and beautiful, as does her soul. She has brought light and faith into this world. We believe that G-d will continue to use her as a tool, so that people may find Him and praise Him.
Believe with us.
Monday, November 24, 2014
Sunday, November 23, 2014
She also had her blood test today, to check the levels of digoxin in her blood and make sure that it is not at a toxic level. As soon as she saw the white coat, she started screaming hysterically. The poor guy was so stunned, but I explained that she has a fear of white coats. He nodded his head knowingly, and said, "Oh, she must have had a blood test before." I didn't even bother responding, I just pulled Tehilla's shirt down low, so he could see her scar. His eyes popped and he said, "Oh, wow. Okay, I'll move quickly."
I was sent a wonderful picture from my brother, who was stunned to see this on the Yeshiva University campus, today.
Thursday, November 20, 2014
We discussed Tehilla's weight loss and her "ravenous" appetite. Our doctor found it pretty alarming that she was losing weight, and that was before I explained about her constant grazing habits. He agreed that she should start taking Pediasure and wants her to see a dietitian at our hospital, to help us make a calorie-rich diet for Tehilla. He checked her thoroughly to make sure that the weight loss was not due to something else.
Our nurse called later to tell us that she spoke to our cardiologist, who was also alarmed about the weight loss and wanted her thoroughly examined (check!) and to start taking Pediasure (check!).
Tehilla has a love-hate relationship with the Pediasure. She takes a big sip of it and mutters, "Um um mmmm um." Then she throws the sippy cup across the floor and shakes her head no. She waits a minute and then goes and gets it and does the whole thing over again.
Wednesday, November 19, 2014
Last year, when Tehilla had her RSV shots, she became extremely sleepy for a few days. It was not a "known to the doctors" side effect, but when I consulted with my heart mamas, I found many heart mamas that experienced the same thing. We will see how Tehilla reacts this time around.
Since Tehilla has started crawling a lot and now walking along the furniture, we have noticed a big change. Tehilla became increasingly hungry and would eat huge portions for a baby her age. She usually tells us that she is hungry or thirsty by smacking her lips together. Lately, she smacks her lips together, all day long. When she eats, sometimes she eats more than Mechal and Tzviel combined. She loves eating carbohydrates: pasta and bread. She has started grazing like a cow, all day long between meals, and never seems to be filling up.
Many heart kids, because of their compromised circulation in their heart, spend more energy when active. This burns calories faster and it makes it hard for them to gain weight.
At Tehilla's appointment today, she was weighed. She weighs 7.700 kg (16.94 pounds). She went down 1/2 a kg in 1 week. Last week, she was 8.300 kg (18.26 pounds).
I will be talking to our doctor about this, but in the mean time, I called our cardiac nurse, Yifat, and asked her what she thought. She was less alarmed, but agreed that Tehilla should start taking Pediasure to give her the extra calories that she clearly needs.
Here is our silly little skinny cow.
Sunday, November 16, 2014
Our hearts are overjoyed with the responses that we have been getting. People are taking on so many different things to change the world for the better, in Tehilla's merit that her surgery go well. It breaths strength into our every action while preparing for Tehilla's upcoming surgery.
Tehilla's surgery is 18 days away. While we prepare our home and family, there is one initiative that really strikes a note with me. People all over the world are baking challah bread with Tehilla in mind. This is a very meaningful mitzvah to me, and it is something that I would love to broadcast.
Baking challah has always been a very spiritual task for me. It is a time, when I meditate on the centuries of men and women that have performed this simple task of baking bread. It is a mitzvah that has been performed in all cultures, in all countries and it is the most basic of food type. When I am mixing my ingredients, I think of women, like me, pouring their souls into kneading their bread. Their lips whisper their most precious hopes and dreams for themselves and for their families. I think of my foremothers, I think of women enslaved in Egypt, I think of women in the Holocaust, I think of the women in my family, I think of women in my community. It is like a dough that binds us together through a task rich with our heritage.
Bread is the simplest form of food. Yet, the act of hafrashat challah (separating a piece of challah dough), is what imbues our challah with holiness. Our act of hafrashat challah is a reminder to us that G-d transcends nature. And that is why it is so important to me right now.
We know that Tehilla is a miracle. She is a little girl with a half a heart. And we know that we are going into a open heart surgery with added risks. We understand that the cards are not entirely in our favor. So, what we need right now, is for G-d to transcend over nature.
Please join me on Wednesday, December 3, the day before Tehilla's surgery, and bake challah. If you have never done it before, do it for Tehilla. And if you had no intention on doing it smack in the middle of the week, do it for Tehilla.
Send pictures of your wonderful challahs to email@example.com and I will post them up on the blog. Make sure to write your first name and your city and country.
Here is the link to the Facebook event:
I am adding below my recipe for challah, as well as, instructions on how to do hafrashat challah.
Here is the recipe for challah that I use: (It is from Kosher by Design)
1/2 c warm water
1 Tbsp dry yeast
1 Tbsp sugar
7 large eggs
2 cups sugar
1 1/2 cups oil
7 tsp salt
4 c boiling water
2 kg of flour
1 egg, lightly beaten
sesame seeds or poppy seeds
Place the warm water, yeast and 1 Tbsp sugar into a large bowl. Set aside in a warm place.
Crack 7 eggs into a very large pot or bowl and mix. In a separate large bowl, combine the 2 cups sugar, oil, slat, and boiling water. Mix with a wooden spoon.
When yeast is proofed, add to the egg mixture.
Add the sugar/oil mixture into the pot. Stir. Add the flour into the pot in 3 additions, mixing well with wooden spoon.
Sprinkle 1/2 cup flour on your kneading surface. Knead the dough for 10-15 minutes, adding flour as needed.
Put the dough back into the large pot or bowl and cover with a damp kitchen dishtowel. Let rise for 2-3 hours. Turn the dough out onto a floured surface. This is where you do the mitzvah of hafrashat challah.
Preheat oven to 350. Separate the dough into 7 equal sized pieces and braid or prepare them, as you wish.
Let them rise, covered for 30 minutes. Brush with 1 beaten egg. Sprinkle with topping. Bake for 30 minutes.
Makes 6-7 challahs
Doing Hafrashat Challah
1. Place dough in front of you.
2. Some have the custom of giving charity, or washing hands.
3. Recite the bracha (blessing).
Blessed are You, L-rd our G-d, King of the Universe, who has sanctified us with His commandments, and commanded us to separate challah from the dough.
5. Burn the separated dough or wrap it in two layers and discard it.
Friday, November 14, 2014
Tzviel's swab test came back positive for strep throat. . Twenty minutes later, Mechal walked in the door from school and said, "My head hurts...and my stomach. My throat is sore too."
I called the on-call doctor and Mechal is, of course, starting medicine, but Tehilla is as well. She is still getting over her bronchiolitis virus and has surgery in 3 weeks. She is being given a low dose for 2 days to ensure she does not get strep. It's preventative but important.
A Shabbat of rest and health to you all.
Thursday, November 13, 2014
It seems that our surgeon and his office are trying to schedule Tehilla's surgery for as early as they can.
Her surgery has now been pushed up to Thursday, December 4th. We go to do pre-op tests and checks the day before, on Wednesday.
Dr. Erez's secretary did mention if they find any earlier date, they want to still move us up.
The minute- the actual minute- that we stepped outside the hospital, I got a call from Tzviel's teacher, telling me how he was crying and had a headache and his throat was hurting him. Sigh.
So, we raced over to his school to pick him up and found that he had a fever. A doctor appointment was made for him and we spent most of the evening doing everything to keep him away from Tehilla.
Tehilla was so happy to be home and have space to crawl around. She loved crawling into each room and being in familiar surroundings. Tehilla kept having coughing fits, but maintained her saturations nicely.
As we headed to bed, Tzviel's fever spiked to 39.5 C (103.1 F) and he started complaining of weird pains. We quickly called the doctor on call, who reassured us that it was either a virus or strept and to keep doing what we were doing, but to call back if Tzviel couldn't calm down or break the fever. Well, thank G-d, he did and we went to sleep.
Only to be woken up by Tehilla having a few coughing fits. We gave her an inhalation at 4:30am, I think. Honestly, aftery 72 hours at the hospital and another 12 at home, going between two sick kids, I'm barely standing. We checked her saturations and they were still good.
Tzviel also woke up at one point, but I think Ron got up with him. I can't remember much.
First thing this morning, we did something that I feel really horrible about. Ron took Tzviel to my parent's house and is staying with him there. We have to keep him away from Tehilla. She is still not over her virus, and to catch something now, could be severely dangerous. It doesn't make me feel any better, as a mother, kicking my sick kid, who just wants to be snuggled by his Ima, out of the house. I know it's for everyone's benefit and it's not like he won't spend the day watching movies and getting filled with junk food. But it doesn't feel great.
And now, I'm going to go take a nap.
Happy, unwell Tehilla picture for you.
Wednesday, November 12, 2014
We are headed home! Dr. Golander gave the all clear with just a warning to keep a close eye on Tehilla.
We were given the date for her surgery. Sunday, December 7th. We come to the hospital the Thursday before for pre-op tests.
For now, home for some nice family time.
Tehilla did really well, last night. She had to go back on the teeniest tiniest bit of oxygen. Honestly, I think it was the humidifier water hooked up to the oxygen that she needed more.
She is once again off oxygen and holding her own.
Her breathing is much more regulated, possibly even back to normal.
Our little heart warrior princess did it again. She showed us how strong she is and how much fight she's got in her. In many ways it calms me for the upcoming surgery. I know that she is going to kick some Glenn tushy and rock it.
Now, to get ourselves out of here...
Tehilla has completely weaned herself off oxygen. What this means is that her saturation has been stabilizing, so every time her saturation went above 80 (her heart can't handle high oxygen saturations right now), we would turn the oxygen down a bit.
This has been completely her own initiative and she is now off oxygen. Let's hope she stays like this.
Good job, Baby! I guess she'd like to go home just as much as I do. Her breathing even seems better. Less labored and less crazy fast.
Tuesday, November 11, 2014
Tehilla is still dependant on oxygen but she is improving over all. She has many moments where she seems completely back to herself. She is still breathing too fast and too heavily.
I was finally given an oxygen tank so I could wheel Tehilla around. It really soothed her. Of course, I promised her that we would go see the fish in the aquarium, only to find that the fish had all died and the tank was empty. Parenting Fail.
Ron brought Mechal and Tzviel to visit and I was given permission to take Tehilla outside. The fresh air did wonders for her. After she ate dinner, I sponge bathed her, read to her, gave her medicine and an inhalation treatment. She fell right to sleep and is sleeping very peacefully.
I hope that tomorrow brings us discharge papers.
There is a chance, a good chance, that we will be sent home.
She has made a very big improvement and the doctors agree that she could receive all the same care at home and the chance of dangerous complications have passed.
They have to get our cardiologist's blessing.
Fingers crossed...please, please G-d!
The test came back negative for RSV! Everyone is thrilled. Since she was supposed to get her first RSV shot tomorrow and it's likely that we will still be here, they've submitted papers to have the RSV shot delivered here. That way she is covered.
What Tehilla has seems to be bronchiolitis, it's a virus. She is improving.
We are getting an oxygen tank soon, so I can take Tehilla around and she won't be stuck to her bed area.
Last night over all, was pretty good. Tehilla barely coughed and she slept well. There was a bit of a balancing game with oxygen and her saturations fluctuating. She is on a little oxygen.
She woke up with her eye infected. She is breathing better and she has definitely turned the corner and recovering well.
I hope that she stays this way and, who knows, maybe convinces the doctors to send us home.
This sickness should not derail her planned surgery for the beginning of December. However, she can not be sick two weeks before the surgery. So, once we get home, we are isolating ourselves completely and not taking Tehilla anywhere. We just can't allow any delays for her Glenn.
Tehilla is sleeping pretty restfully. She is being gently weaned down from the oxygen and doing well. In fact, the reason I'm up is because the pulse ox went off because her saturation was too high for her and we had to adjust her oxygen lower.
With G-d's help, this rest will give her body a chance to heal and there will be a good improvement.
Back to sleep...
Monday, November 10, 2014
Today has been a day of ups and stable and low and stable...and up and...and lather, rinse, repeat.
There have been calm moments but for the most part Tehilla has cried all day. Her saturations have been low and she has needed oxygen.
The ward has a number of critical cases and the nurses can't keep up. We were being very ignored and I was chasing the nurse without any results. I just went all Mama Bear and raised my voice at our nurse. "I'm sorry but my daughter is not stable and I need help. I can't keep coming to find you. She can't breathe. I need help."
She came right away and sincerely apologized and explained. I apologized for getting upset and she said I did the right thing and Tehilla is entitled to the care. I feel a bit bad.
We spoke earlier with our cardiologist who confirmed that we were staying until there is big improvement.
We are lucky to be surrounded by friends, family and sweet wonderful blog readers who have helped in so many various ways and sent encouraging messages.
Today has been very hard, but I am thankful to G-d that we are seeing some improvement and thankful to G-d that He brought all of you into our life.
Ha ha. So, do you want to hear the joke about how we thought Tehilla was crashing and we kept giving her more oxygen and she wasn't responding? It's hysterical, let me tell you. My favorite part was when her saturation supposedly went down to 42 and everyone held their breath as the oxygen that wasn't really hooked up to her, didn't help.
Yeah, I didn't find it funny either when her sats hit the proverbial fan.
So, the silver lining in the terrifying experience that we had, is that her saturation didn't really drop that low, although they were still low. And she wasn't given tons and tons of unnecessary oxygen.
Ha. Ha. Ha.
She hasn't really shown any real improvement and they are suspicious that she has RSV. They took a swab and we'll know soon.
They are definitely keeping us in for another night. Our cardiologist should be coming soon.
Last night was very difficult. Tehilla was up and pushing off her oxygen mask the entire night. Her saturation generally stayed above 68.
This morning her saturation was completely normal and she is off of oxygen. Now it is dipping a bit.
She is smiling away and engaging all of the nurses and doctors.
Thank G-d, she seems to have improved somewhat. We are very blessed to have so many people who jumped at the opportunity to help. Especially our dear friend, who at the blink of an eye has several times dropped everything to sleepover and watch Mechal and Tzviel. We love you, Josh.
Coffee and good friends are fueling me today.
We just finally got transferred to the ward 15 minutes ago. There's a shortage of porters today. Something like that. If Tehilla wasn't oxygen dependant than we could have walked ourselves.
Tehilla is sleeping and is on a high level of oxygen.
We have completely lucked out. We had our favorite ER nurse and we just got our absolute favorite nurse (next to Yifat, our cardiac nurse). She works in the sick kids ward, post-op and PICU, so we've had her a lot.
Sunday, November 9, 2014
Tehilla's blood tests and chest x-ray came back clean. They don't know why she is wheezing or why she gas a rash so they are assuming it is a virus. She has been getting Ventolin treatments.
She is dependent on the oxygen, so we are being admitted and our cardiologist will check her out tomorrow.
I'm sorry that it took me so long to update. We've had our hands full.
We got to the ER and Tehilla's saturations were between 48-62. She was started on oxygen right away.
She is terrified of everyone that approaches her. She had her blood taken, an IV put in and was looked at by the ER pediatrician. She was wheezing so they gave her a Ventolin inhalation.
She just had a chest x-ray. I accosted the x-ray technician that removed her oxygen.
Tehilla now fell asleep. We are assuming that she will be admitted.
We had a difficult Shabbat. Tehilla woke up with croup again Friday night and we got no sleep. All Shabbat day, she was miserable with a runny nose.
Last night, she started coughing and today it's a very bad cough. I took her saturation and it was 62-65. I just spoke to our cardiac nurse and they want Tehilla to come to the ER.
I am right now giving Tehilla an inhalation treatment and I will check her sats again. If they are still in the 60s then we will go to the ER and expect to be admitted to the hospital for a few days so that she can get oxygen.
She also has weird spots on her face.
Will update as soon as I can.
Thursday, November 6, 2014
In other funny Tehilla-ness...She has now morphed her bear "roar" and her cat "meow" into the sound of a scary and probably sick cat. Or maybe a cat that had it's tail stepped on. When we ask her what a cat says, she scrunches up her face and says, "MeOOOOOOOWWWW!" It makes us all laugh, as we try to tell her that kitty cats are nice and shouldn't sound like that. I have been trying to catch it on video.
She has also started panting for a dog sound and started saying "this", "book", and "wandis", which we have translated as "want this."
Why would prayer change a situation that has already been decided on? What good can praying do, for instance in Tehilla's case, if Rosh Hashana, Yom Kippur and Shmini Atzeret have already passed? It would seem that judgment has been sealed, and while we don't know the outcome, G-d does. So, why do we pray?
My brother-in-law, Meir, shared something special with me recently. I would like to share it with you.
Prayer is an act of giving. When we pray for someone to be healed, we use a person's full name and the full name of their mother. We are taught to pray with kavana, which means to pray with intention. A person summons up their emotion and their concentration and sends forth a prayer to G-d. "Please heal her." This is an act of giving. We are using our power of prayer, our emotions, and our strength to help someone. We are giving of ourselves.
This, in turn, makes a change in the person that you are praying for. A part of you is now linked to them. It changes who they are and with it opens the ability for their mazal (fate) to change.
We have been asked by many people, "How can we help? What can we do?" And we respond by saying, "She really needs tefillot (prayers)." Most people respond with, "Yeah, yeah. Okay, sure. But what can we do?"
This is what you can do.
Kavana (intention) brings all the meaning and difference to our prayer and our Torah learning. If we truly understood that we are conversing with G-d and making an actual change in someone's life, it would be that much easier to appreciate. By praying for Tehilla with meaningful intentions, you are opening up the opportunity for her to receive a full refuah (recovery).
It seems that "Tehilla's Heart" has become a movement.
Thank you to the students of Rabbi Baruch Gopin, who have taken upon themselves to bring kavana (intention) into their prayers, with the "No Talking for Tehilla" Project.
Thank you to the students of Rabbi Eliyahu Haber who have taken upon themselves to bring kavana (intention) into their Torah learning by not using their phones while learning, with the "No Phones for Tehilla" Project.
We are lucky to have you as part of our extended blog family. Thank you.
Wednesday, November 5, 2014
I managed to snap a few pictures of her being playful and spitting at me.
We have told Mechal and Tzviel about the surgery. Mechal was ecstatic. Her response was, "Yay! And then she will be doing much much better!"
We are starting to get ourselves organized and make a plan for the surgery, even though we do not have a date yet.
A few things that I forgot to mention in my previous post, is that the new medication, Digoxin that Tehilla is being put on, has to be monitored carefully. She will need a blood test in two weeks.
I received two messages from fellow heart mamas after they read my previous post. Both of their HLHS kids were started on Digoxin for the exact same reasons and it was successful! So, fingers crossed that it works for us, as well.
As well, Tehilla must start an iron supplement. For those that have been reading along, you may remember that the day we started Tehilla on an iron supplement, she had an allergic reaction and half of her face swelled up.
Cyanotic babies (blue babies) must have higher levels of iron, as their hearts depend on it greatly. Everyone on the team is aware of Tehilla's previous reaction, so they have started her on a different brand and a different kind of iron salt. Hopefully, she will not have a reaction.
We have received so many warm wishes and messages from family and friends. Many people are taking initiative in taking something on for Tehilla. This journey could have been very isolating, but with all the love we have received, we feel so much more strengthened. Thank you!
Tuesday, November 4, 2014
The final number analysis from Tehilla's catheter showed that the pressures in her heart are borderline. What this means is that she is not an "ideal" candidate for the Glenn surgery, which she needs.
Dr. Golander has decided to start Tehilla on a strong heart medication called Digoxin. In Dr. Golander's words, "We are going into uncharted waters." This is a medication that has several different uses in heart patients. It is often prescribed to help the left ventricle pump better. He is hoping that it will help Tehilla's right ventricle pump better and effect her heart pressures. (Tehilla has no left ventricle). As Dr. Golander said, "You will not find clinical trials or research write-ups about what we are trying. It hasn't happened."
As Dr. Golander put it, there won't be a backlash. It won't cause higher pressures- so it is worth a try. Dr. Golander has used this medication previously on other single ventricle CHD patients to force the right ventricle to pump better and it has shown results. So, we basically can't lose by trying this.
And we are doing the Glenn.
Tehilla will have the Glenn surgery with a patch on her pulmonary arteries in early December- in one month's time. The medication is a simple trial. If it works, fantastic. If not, not. We will not wait long, because Tehilla simply won't be able to wait long.
So, we are progressing to the Glenn. The Glenn is a completely different circulation of the heart. It changes everything. And very often, the pressures change with it.
Should it not work. Should they do the Glenn, they will see, almost immediately, that it is backfiring. That the pressure are high and there is an overflow. They will be watching during surgery. Once the Glenn is completed, Tehilla will be taken off of bypass and they will watch what happens in the operating room with her chest still fully open. If it fails, they may see it then. If not, it will usually show itself within the first 24 hours.
If Tehilla's Glenn is unsuccessful, then they will bring her back into surgery and undo the Glenn. They will put her back on the Norwood circulation with her BT shunt that she already has, but they will keep the patch on her pulmonary arteries there. And we will be forced to wait longer.
If it succeeds- if her Glenn is successful, then all of the problems that we have been facing should have no effect on her future success. It is like starting fresh.
Dr. Golander was very clear in explaining, "She is a difficult case, but not a hopeless case. And this is the best plan for her." In their words, they are cautious but feel good about going forward with this plan.
Ron and I picked Dr. Golander's brain for a long time and feel very confident in our medical team. We feel that this is the right plan for her.
There are very big risks and if we weren't scared before, we are terrified now. We have fully digested the magnitude of Tehilla's situation and have no choice but to carry on.
So, here is where we are begging for help, from the depths of our souls. Please help us.
Please pray with us. Please have your shul make a mishaberach (a special prayer said for specific occasions) in Tehilla's name. Please light an extra candle for Tehilla. Please grab a friend and tell them about Tehilla and ask that they do the same. Please put an extra shekel or dollar towards charity in Tehilla's merit. Please send your kid to school with Tehilla's name to pray for. Please bake challah for Tehilla. Please learn in Tehilla's merit. Please do everything and anything, because that is what we need right now.
Miracles happen all around us, on a daily basis. They have a way of becoming part of our daily routine, and we adjust to the magic and Heavenly sparks that course through them. While this miracle will work through medicine and science, it is no less a miracle. We really need G-d's hand to succeed. Please help that happen.
Tehilla bat (daughter of) Shoshana
We are still waiting, but I really have to write about how wonderful everyone has been. The nurses have been exceptional- friendly, understanding, and comforting. They have repeatedly recognized my role as Tehilla's mother and her main caregiver.
We have had wonderful doctors and student doctors. Everyone is eager to learn from Tehilla and our experiences. We were assigned a student doctor who is thrilled to have been assigned Tehilla. His fellow student doctors, it seems, are a bit jealous and asked if they too can check her, when she wakes up from her nap.
I do a lot of advocacy and have learnt to speak my mind and make myself heard. I often write about difficult situations. It is just as important for me to compliment and congratulate excellence.
The staff at Hadassah Ein Kerem have been wonderful and have made an otherwise difficult situation comfortable and stress free.
Tehilla slept all day yesterday and all night. She woke up several times during the night but kept it down. This morning, she ate and threw up, but then she ate again and kept it down.
We are waiting to be called for an echo and to hear the final findings of the catheter and their decision.
Monday, November 3, 2014
Tehilla is still sleeping on and off and groggy when awake. She took one sip of water and then later threw up. I insisted the nurses put her back on fluids.
Now that the initial disheartening news has had time to settle, we are feeling a bit calmer.
We're waiting to hear from our doctors the decision that they have come to. It's clear that this situation is more complicated than anyone thought. We won't hear anything until tomorrow.
A dear family friend wrote to Ron and me and said something helpful. He said, "Whatever decision you and the doctors make, know that it is the right decision."
We have, in fact, heard these words of wisdom before. When I was pregnant with Tehilla and we were gathering information to make an informed decision about whether to terminate the pregnancy or not. We were consulting with my kids' previous pediatrician who we had a close connection to. She was advising us and said, "No matter what you decide, know that it is the right decision."
At the time, they were the most helpful words to a very confusing problem. I think that they are comforting now too.
Whatever the decision is, it's the best for Tehilla and we will hold strong in knowing that.
I was chatting with a fellow heart mother, here in the hospital. Her son is 15 and has a different single ventricle CHD. He had the Glenn and Fontan and is doing great. I even asked him if he plays sports and he responded, "No, but that's just because I don't want to. I'm just not interested in sports. But I like English! Keep talking to me in English."
While talking to him and his mother, I was reminded how outstanding our medical team is. His mother even admitted to overhearing me tell our cardiac nurse the results of the catheter and said, "Our doctors are the best. Your problem just means they will have to get creative. But they will find a good answer."
She is right and I needed to hear that.
Our prayers and deepest desires when we started this journey was, "G-d, please let her live. Let her survive so that when people hear about the little girl with half a heart, they will praise You."
That will always be our prayer and that was why she was named Tehilla which means praise.
Tehilla is an extremely not straight forward case. That is basically the findings of today's catheter.
Her pulmonary arteries overall grew a little bit. The branched area inside her lungs are good. They are ready for the Glenn.
Her pressures are borderline high. This is the problem. It is essential that they are lower for the Glenn to be successful. They will crunch the numbers soon to know exactly where we stand.
So here is the dilemma: Because her pressures are still so high, there is a huge question mark. There are many different options that they are considering.
1)To treat with more medications and wait. See if this brings down her pressures and then do another catheter.
There are risks involved in this, long term, that she can outgrow her BT shunt as well as another risk I have to ask again about.
2) Do the Glenn. Many times pressures change anyways from the Glenn because the entire circulation has changed.
This is a big risk. If her pressures don't change, then they will have to do surgery and take down the Glenn and revert back to what she has now.
3) Do another shunt surgery, putting in a bigger shunt and waiting again.
This is also risky because the Norwood circulation is not a long term circulation that she can live on.
These are the options the doctors are considering. The numbers of the pressures will give them a better idea of what to do.
I woke Tehilla at 4:30 am to eat and she is now fasting and unhappy. They put in her IV and will be starting her on fluids very soon.
Her saturation is low: between 68-71. Her eye lids are swollen because of it. A Tehilla-ism that we have picked up on.
Tehilla is scheduled for her catheter at 11:00 am. Please pray that it go smoothly without any complication and that the result come back as nothing other than great.
Tehilla bat Shoshana
Sunday, November 2, 2014
A cardiologist came to check Tehilla. She had heard my speech and told me how much it meant to her to hear our story from the other side. She asked that I do it again and that it really was a learning experience for her. Tehilla played with her and even blew her kisses during the check-up.
Later, a pediatrician checked Tehilla and did a blood test. They decided to put in the IV tomorrow morning.
Tehilla has to fast from 5:00 am and start getting fluids at 7:00 am. She is second in line for her catheter.
Now we are on our way home.
We got quite the welcome when we walked into the ward. Either there were nurses that we have already had or they recognized me from my speech.
Tehilla had her vitals taken, an EKG, and we are now waiting for a chest x-ray. After there will be blood tests and they will put in an IV.
We will have a check-up from a pediatrician and a visit from a cardiologist to go through the consent forms.
Tehilla is behaving but also panicking any time a nurse approaches.
I've already received worried messages asking for an update.
We are here at the hospital, waiting for insurance papers to come through and then we will head up to the ward to begin preliminary tests and checks.
Tehilla is cranky, having missed her morning nap and waking up at 5:30. But she is waving at complete strangers and demanding endless supplies of crackers.