This is a summary of what happened right before and after the trach/g-tube operation...
6/1 Day 42 and Day 13 in the Hospital
6/1/09 4 pm - Rebekah's surgery is tomorrow (tentatively 11:30 am) instead of today.
To make a long story short, we have been struggling over the idea of having a g-tube put in at the same time. Most trach babies end up with g-tubes. :-( After discussing it with probably 4 different doctors, we've decided to do it and hope she'll only need it on rare occassions.
Please be praying for a successful surgery and recovery. Thanks!
The surgery was delayed because to do the g-tube, we needed an upper GI study which showed... everything was 'normal'. What did you expect? :-)
Rebekah getting a bath to beautify for her upcoming surgery.
I recorded Rebekah several times trying to capture her crying and making a cute little noises. I was warned that the hardest part about traching your baby is that you no longer can hear them cry. I never did get the little whimpering noises, but here is a nice cry. I'm looking forward to the day I can hear her again!
6/2 Day 43 and Day 14 in the Hospital
6/2/09 8 am - Rebekah had a rough night of true apnea episodes where she did a lot of periodic breathing. We think it is because of her upper GI test yesterday and the stuff they use to see the GI track has caused her severe diarrhea and bad reflux. But she is doing better now and waiting for her surgery. I am really praying this solves her apnea episodes. This is also the last morning I am going to hear her sweet cries for a long time. :-( On a positive note, she is up to 5lb 9oz!
6/2 8:40 am - We've been bumped to 1 or 1:30pm. Guess the doc wants to make sure he gets a lunch break. :-D
6/2 11 am - As I sit here comforting Rebekah in her hunger waiting for her surgery, it just makes me appreciate how blessed we are here in the US. There are countries where millions of people are starving and mothers have to listen to their babies cry in hunger day after day until their poor little bodies give out. Thank you, Jesus, for blessing our life and for providing us with everything we need. I also have a t-18 mommy friend in the UK who has a little 3 year old boy that needs heart surgery. Do you know in the UK (yes a modern country with all of the medical capabilities we have) they will NOT do surgery on a t-18 child? They just rather let them die. That is another reason I am proud and blessed to live in the USA. I find it totally absurd that a child has shown that he is fighting to live and they won’t consider ‘fixing’ something that can be fixed. One of the doctors here also told me how in Europe and Japan, you will not find a lot of special needs kids – for the same reason. Their lives are not valued or sacred.
6/2 5:05 pm - According to the surgeon, Rebekah's surgery went "very well". She is breathing on her own. However, she is having episodes of bradycardia (slow heart rate). One was pretty deep and long. Her doctor said for a baby <2 style="font-weight: bold;">6/2 5:52 pm - Although the surgery went well, Rebekah's CO2 level is really high - she is not releasing CO2 efficiently when she exhales. They are trying to determine why but we only have a short time to resolve this before we have to consider ventilation. Needless to say, this is rather depressing and going down a path we didn't want to go on. So we need those prayer warriors to keep on praying. The next 48 hours are critical.
6/2 6:55 pm - Well, I've got bad news that is actually good news if they can figure out how to fix it. It turns out that the air is NOT passing through the trach! So Rebekah's drive to breathe is so strong that she is working to breath around the trach tubing. This most likely is the reason for the really high CO2 level, because she cannot breathe efficiently. They are working to figure out the problem and solution.
6/2 7:00 pm - The bad news is her Trach is blocked. The good news is her Trach is blocked and she is still breathing on her own and keeping her stats up. God just showed Psalms 20:7 to me in real time!!!! She is in His hands!!! Literally... It is NOT her day to go today and she WILL be sustained until they can figure out what went wrong. Isn't God so evident in this child's life? I hope everyone following this story realizes that they are seeing His miracles one after another and, if you have not submitted yourself to Jesus, you need to do it now. There is no better place to be than in the arms of my Lord and Savior!
6/2 8:16 pm - Rebekah is heading back to the OR for a second surgery to fix the trach.
6/2 9:46 pm - Rebekah came back to her room at about 9:20. The Trach had moved out of place, so the surgeon put it in the correct position and secured it with sutures. He said that would hold it. She is breathing on her own and stable. PTL!! Thank you for your many prayers. Good night to all.
Wheeling Rebekah to the first surgery. I cried as I left her there.
Recovering from surgery #1.
6/3 Day 44 and Day 15 in the Hospital
6/3 9:35 am - Rebekah is having some incidents of low oxygen levels and heart rate, but is self-correcting for the most part. We are just going to have to wait out the next 2 days and trust that this will improve as she completely recovers from 2 surgeries. I had to go home last night to relieve the babysitter. Michael truly felt he was witnessing a miracle as Rebekah breathed through two obstructions until her 2nd surgery.
Feeling a little more alert after two rounds of anesthesia are finally starting to wear off.
6/4 Day 45 and Day 16 in the Hospital
6/4 9:47 am - Not much to update other than Rebekah is stable and we are waiting for her '48 hour' period to end. When she goes into a deep sleep, she is still having some issues, but if they continue past tonight, we can consider putting her back on caffeine to see if it helps. Overall though, the trach is definitely making it easier for her to breathe. Care is a little overwhelming, but I know it will become easier over time. We've been using the g-tube to feed her. At some point today we will try a bottle.
Summary of the Day:
We tried giving Rebekah her first bottle today. We only did 1 ounce. She seemed to swallow well, but did have a lot more fluid to suck out of her trach after eating. It was undetermined if it was milk or just watery mucous. So we’ll stick with the g-tube today and go for a swallow test tomorrow to see if she is aspirating.
I had a meltdown today, in the hospital. Luckily my friend Renae Bradley (Her son Dawson is 3 and has T-18) was here to lend me a shoulder to cry on and great advice on how to deal with the hospital. Rebekah was having a lot of bradycardia events, and I felt like no one was watching over her or checking on her when her monitor would go off. Consequently, I am on pins and needles here at the hospital; feeling like I cannot even leave the room for a few minutes for fear that no one will be there for my poor baby. Also, trach and g-tube care is not simply common sense. She’s only had these things for a few days and I have received little training on them, yet I feel kind of abandoned and left to deal with her alone. So after talking to one of the managers, I feel a little better and she assured me that I should have enough confidence that if I even wanted to leave the unit and sleep at home at night, Rebekah would be taken care of. I don’t think I would ever want to do that, but I do hope my trust is restored enough that I COULD do that if I really wanted to.
Added note: The nurses at the Greenville Children's Hospital are wonderful and I am sure they would not willfully do anything to harm my child. But days and days of stress and no sleep make one very negative and I was at one of those points. I am posting this as it documents the feelings I was going through, but know that I do have full confidence in the PICU staff.
So back to her bradycardia… we started her back up on caffeine mid-afternoon. We’ll have to see if that helps, but the doctor isn’t too hopeful. He doesn’t think the caffeine will work on her. He said we could put her on a respirator, but that is going down a path we decided quite some time ago that we did not want to go down. I feel like we’re back to square one, and I have to be honest, I feel just a little abandoned by God right now. No, my faith won’t stop and I won’t become bitter and angry, because I always knew that Rebekah was being entrusted to us for a short time. But with all the miracles that have occurred along the way, it just seems like a cruel joke to be back at the point we started at. We would not have had a tracheostomy in the first place if the test results hadn’t come back as they did – that the majority of the problem was obstructive.
So when Michael got to the hospital, he sent me home and told me to enjoy the boys. I looked tired, I was emotional, and I wasn’t handing all this as well as I could. I think stress and continued lack of sleep is just eating at me. I simply cannot sleep when I’m in the hospital. I wake up all night long, just can’t help it. But I tried to enjoy the evening. We all talked to Grandma Kraieski on phone. During Isaiah’s conversation, Grandma wanted to know if he was enjoying his school break for the summer. He kind of wavered on the answer announcing that he had to go back in the fall ‘to get more experience’. LOL. I wonder what kind of ‘experience’ you learn as a 4 year old? Then the boys and I curled up on my bed and watched Night at the Museum. I’m looking forward to a day we can all go somewhere again as a family and do something as simple as go see a movie together. They’d love to see the sequel!
My friend Renae came to visit Rebekah. Her and Angela, my two trisomy 18 moms here in Greenville, were our most frequent visitors during our month stay at the hospital!
This is Dawson (Renae's son), who is 3 1/2 with trisomy 18. They have a website called www.trisomy18hope.org. We are going to revamp it to include Rebekah and hopefully other living t-18 kids.