It’s hard to believe that one week ago today Jessica was out of surgery and just recovering and thankfully,tomorrow we are going home! We might need a boat to get home. It’s suppose to get up to 60 degrees and after a couple feet of snow this past week, there will be LOTS of water! I am not sure if they make U-Hauls to go behind a boat to get all our stuff home though! Jessica was delighted with a very nice gift package from our church family ~ lots of little toys and games, stuffed animals, candy, etc. Every since getting out of ICU she has gotten several gifts a day. Thank you to so many of you!
We have an incredible church family ~ many who have helped in various ways from meals, to visiting with our children at home, bring diapers over so our daughter did not have to keep up with cloth diapers, phone calls checking up on them etc.
One family blessed Jessica with a brand new single bed/mattress set so she does not have to go up into her bunk bed. We were planning on doing this soon anyway, but just fast-forwarded it. Another family got her new pillows. We are so thankful for friends and family helping take care of so many details for us while we were away.
Her coumadin level was slightly low today, but they are going to count it as long as she is where she is suppose to be tomorrow morning, and we are counting on that!
Our last night here we are in a new room. A new child was moved into our room and was throwing up (we think from surgery) and we just did not want to listen to that. Thankfully, they wanted the room for a baby, because that room was close to the nurse’s desk. Now we are down the hall with a large corner room with two sides full of windows. We get quite a view. There’s a tall tree filled with lights right outside of it. So far there is no roommate, so it should be an extra quiet night!
I am not sure when we will be able to update tomorrow, but no news is good news. We are so looking forward to reuniting our family. We have so much to be thankful for ~ such a precious gift of life. Thank you from the bottoms of all our hearts for your prayers and encouragements and holding us all up. We are indeed blessed.
It was not a quiet night of sleep. Jessica’s room is right across from the nurses’ party break room, so they were having their staff parties during the night. Our room’s door kept getting left open and there was talking outside of it. There was a separate nurse for the baby in the room, so there were many interruptions throughout the night. I got up about 6 times to shut our door – the last time, I shut it a little louder, and it seemed to stay shut better! Tonight should be better.
Jessica’s INR (blood thinning level test) is still too low. It was 1.9 today and it needs to be a minimum of 2.5 two days in a row before they will release her. Please be praying for this. She says her pain level is at a 3. This is the lowest she has said!
We definitely have to be Jessica’s advocate here. It got to be close to 11 a.m. and the INR test was not done. I asked why, to find out that it had not been ordered! So, tonight I asked the nurse if it was ordered for tomorrow morning and again, it wasn’t! It! One night she did not get her Coumadin (blood thinner) until I asked and found out it was forgotten! This is the main reason we are here now!
We received a “real” Christmas lunch today. A local church brought over a honey spiral ham, real mashed potatoes, green bean casserole, yams, rolls, etc. for the entire floor. It was so nice and there were quite a few people there, including the coach from Cornerstone & his wife. Their three month old baby boy is doing well.
It was interesting with one of the cardiologists that came in to check on Jessica today. I’ve tried to make it a point to thank all the workers, docs and nurses who come in to do their jobs, thanking them for working on Christmas Day. I thanked this particular doctor and he said he did not celebrate Christmas because he is Jewish. Then he told me it was the talk amongst the doctors of the miracle of Jessica. I had the opportunity to give God the credit and how thankful we are for the gift of her life, and the gift of Jesus!
Norm came back tonight and they let Jessica leave the floor for an hour so we took her down to the cafeteria to pick out what she wanted to eat. She had to wear a mask down there. By her walking, you’d never know that 6 days ago she had OH surgery! One week ago at this time, she was beginning to go into heart failure. What an awesome journey of God’s faithfulness!
This will be a shorter update, being it’s Christmas Eve and I know so many are spending time with family. The rest of my family back home is at a Christmas Eve service. Jayson is singing “While You Were Sleeping” by Casting Crowns along with playing his guiar. I am missing my kids terribly tonight, our Christmas birthday cake for Jesus and just being together.
It was a good, busy day. Jessica did not have an MRI, but had a full bone/body scan. She still had to lay still for two 20 minute periods and did very very well. I am so thankful! She also had a series of x-rays. Her lungs look clear except just a tiny portion of the bottom of one, but a great change.
We were actually hoping and praying to go home on Christmas day. It was going to be a surprise for the kids, but Jessica’s blood thinning levels are not good yet – too thick. It needs to be thin enough so it does not stick in her mitral valve. We need to have two good blood tests in a row. So, the earliest would be Friday, but if we have one good day, and the next is not good, we start over. So, it’s a little discouraging at this time.
Jessica is doing fantastic. It’s really unbelievable how much strength she has. She walks right along like nothing happened. She and Heather played WII – doing sports games for two hours and JESSICA won against her 17 year old sister! She’s been eating and drinking better today – even asking for food.
Someone from orthopedic surgery is suppose to give me a report tomorrow on all her scans and x-rays.
Though it’s sad being away from our family all I have to do is look at Jessica, and be overwhelmed with such a wonderful “Christmas Miracle”. May you all have a blessed Christmas.
Jessica had another good day of moving forward. Last night was frustrating with a roommate down and depressed about life, wanted to die, and moaned and cried a good portion of the night. Jessica did not need to hear any of this. I talked to a couple of nurses, and finally one nurse heard her and the woman was moved to a private room. We now have a newborn baby in the room and so far have not heard a peep from him (probably will at 3 a.m. if he’s a typical baby).
Late morning Jessica got thefinal two chest tubes out and pacemaker wires. She still has a medicine port in her one shoulder area, but other than that she is not hooked up to anything. In the afternoon she went downstairs for a echo and EKG. I thought I’d hear the results by now, but haven’t.
One of the main things that will hold her up in leaving is her blood thinning levels. It’s very important to have it at a certain level – not too thin to cause bleeding risks and not too thick to cause it to stick to her mitral valve. Today it was still too low. The potential bedsore is slightly worse – just breaking through so please, please pray for her – comfort that she can lay to one side and the strength to walk more. We just do not want this to get serious.
Another big move is I spoke to the orthopedic surgeon today who came in late tonight. She was able to look at the x-rays & her neck/spine is worse than we knew. Besides a hemi-vertebrae in C-7, she has what is called Klippel-Feil Syndromeand for her it means vertebreas 2,3, and 4 grew and are fused together. Along with this syndrome it’s very typical to have heart defects. The doc is also ordering a viewing of her kidneys as it can be typical for a missing kidney or an odd-shaped one. It may not be anything that could cause problems, but we should be aware of it. I am so praying this is not another problem. This would be discouraging at this point. We are hoping that they can get her in for an MRI and additional x-rays on her neck/spine tomorrow. Please pray this can be done, as it would be so much better to have a diagnosis before everything is in the Christmas mode through the whole weekend – and we would not get anywhere.
Several have asked what my daughter Heather is doing here. She has been such a big help and does so good just with being with Jessica and doing things. Being Jessica is not hooked up anything, she can take her for walks. There is a game room and they played WII and have done some crafts. She has helped fix her hair and they go on the computer together. The hospital provides computers for the kids right in their beds.
A neat thing happen today that again showed God’s divine planning. When Jessica had to be taken emergently for the surgery, another child had to be bumped. It was just a matter of minutes before surgery was to be starting on this child. Today while Jessica was in the game area, a man walked in with a Cornerstone University hoodie on. I mentioned to him that my husband and I met there and we have friends who work/teach there. He graduated in the mid-80’s and is now the golf coach there. His last name is Eric Campbell. I asked him why he was there and he said he has a three month old baby that had surgery on Monday. He was suppose to have the surgery on Friday, but had to be bumped because of an emergency. I told him that child was my daughter, and here she was sitting up ALIVE and I told him I had thought & prayed several times for the family that had to be bumped because I am sure it was so hard when you’re all prepared for it. He was very excited to meet us and Jessica said and was thrilled to see who took his child’s place., and hopes to have his wife who was with the baby come meet me. Eric’s baby had surgery on Monday and he told me he’s doing well. Isn’t God amazing?
So for my Cornerstone & WCSG friends, please be praying for the Campbell family and their baby’s recovery.
Well, Jessica is settling down for the night as Heather is doing all our laundry and we hope to get to sleep soon. I am thankful I was able to get a nap this afternoon (and started to dose off on the bed by Jessica as she was getting her echo done today!).
Thank you for your continued prayers for Jessica and our family.
Jessica had a downer morning. I could tell as soon as I walked in her room, she was not doing well. She was in a lot of pain. And I found out she had a couple of bad dreams and asked her nurse to call me, and the nurse told her we were sleeping and did not call us. Needless to say, I was not thrilled, and it won’t happen again. Please pray for peaceful sleeps for her. I think the medications are giving her crazy and scary dreams.
It took awhile for her to perk up and getting more meds in her to give her comfort. She sat up in a chair for over an hour and then took a long walk – went about 6x as far as she did last night and walked along at a good pace.
There is concern still of the bedsore developing AND pneumonia. Both of her lower lungs show slight collapse – mainly because she is not breathing in deeply enough. So we are working on getting her to blow in a “thingy” that makes the balls go up 10x every hour. It’s already helped her oxygen levels and she is OFF OXYGEN! This will be continued work for her.
She is getting one chest tube out this afternoon which they will sedate her for. Two more to go after that and generally they do the last two at the same time. And she should be moving out of ICU later this afternoon as well. This means I can sleep in the room with her.
It’s been a very good day, despite mom having to put her boxing gloves on to allow her daughter to win a battle! Jessica accomplished a lot today, and it’s been a busy, long and demanding day. I should be an RN by the time we are done here. 🙂
I was up to Jessica’s room by 7 am (those that know me that is very early) and she was sitting up, hair all pretty and braided and a sparkle in her eyes. You know how we moms so look forward to the first smile from our newborn babies. It’s not any different with getting the first smile from Jessica today. It melted my heart.
Four lines were taken out today. She had a line directly to her heart that measured pressures that came out along with medication lines in each wrist and her “pee tube” as we called it. She has been up to go potty four times now. By 11 am she had eaten about 20 mandarin oranges. It also brightened her morning to get a call from our pastor and she was able to talk to him. We cannot get personal calls in ICU, but pastors have special privileges! 🙂
They had her sit in a rocking chair late morning. This was very hard for her. There are still three large chest tubes and these seem very heavy on her chest and caused a great deal of pain. She could only sit up about a half hour the first time and it discouraged her to want to do it again. The morning was good, but the afternoon she was more down especially with the pain.
She had an x-ray in the morning which showed her stomach is filled up with air and if she did not move around this will not come out, and it makes her feel like she is full and she won’t eat. So they put a tube down – like a feeding tube – to suction it out – but left it there and it was very uncomfortable in her dry nose and the back of her throat. She did not want to eat. They got air out and it cause her to burp, so mom had to push to have them take it out. At first the nurse would not go along with it because of “protocol” but protocol does not mean much to a mom all the time. I asked for the doctor and she could see how this was discouraging Jessica. We were able to make a deal with Jessica that if it came out, she would sit in a chair for an hour.
She did better than that! She sat in the chair for over 90 minutes! She also ate another cup of mandarin oranges. She went on her Facebook and was able to chat with a couple of friends. Those of you who are on her Facebook, please leave her notes. It’s really encouraging, but please do not mention Christmas. She is very disappointed about not being able to go home (has cried about this several times) and wants to go to her grandparents to see her cousins. We are telling her we can celebrate Jesus’ birthday anytime – so it will be later.
We got her all bathed, hair brushed & braided & her PJ bottoms on. She looks like a new girl! After this, she went for a walk, walking about 30 feet one way and back. She did real good. It wiped her out, and she’s now been sleeping several hours very soundly. She has not slept good at all during the day and was awake quite a bit last night.
Besides getting the air out, and strengthening her body, there is a major concern of a bed sore on her bottom and has just the start of one. It’s not broken through – but it’s deep dark red like a sunburn. Because of her neck/back/spine problems, she cannot lay on her sides. The doctor told her if she did not get up and get in different positions, and the bedsore got bad, she could end up spending months here. I think that scared her (and us).
So, continue praying, especially for the pain level, which seems better today (she is off morphine & started a new pain med that seems to be working better and longer) that the bedsore does not develop and for the emotional and physical strength to keep getting up, sitting up, walking and eating.
My husband had originally planned on going home today but we were socked with another major snowstorm so he stayed (which was good for him to catch up on some sleep). He plans on going home Monday and needs to have the rental car back by 3 pm so please pray for his safety and alertness. Also pray for our kids at home. Our baby really is missing me and up more during the night. It’s been quite demanding on our oldest daughter. We have it arranged for several of her different friends to take turns spending time with her to help her. There have been meals brought over as well. She does not want adult help as it means more pressure for her to get things more cleaned up, so her friends her age will be of great encouragement.
Well, this is a long update, but it should fill you all in. Several have e-mailed about visiting and at this time we cannot have visitors in ICU. Once we are out of the room it is a possibility BUT, visitors have to be 100% healthy – absolutely no colds, flus, etc. in the family. But we can update more on that later as well.
Just a quick update. Jessica is sleeping peacefully now. It was a rough afternoon/evening. She is more aware of the pain. We remain greatly concerned about her back/spine problems and are praying that there is not more damage being done there. We are hopeful that the orthopedic surgery office will see her in ICU on Monday (so we are told). She is not moving one arm much as it hurts her shoulder & neck so much. She is slow with eating – but considered normal with it.
She did have to go back on the pacemaker tonight. We shall see what the outcome of this is.
She is requiring a lot of attention and love. 🙂 We can give that, but it’s tiring too! She needs help holding a pillow on her chest when she has to cough. She wants to be wiped with a washcloth often. She asks a lot of questions which we have to have our ear right near her mouth to hear. She is seeing double because of the morphine. She is asking often what day and time it is.
Just please continue to pray for her pain and protection on her back/spine and for her heart to recover.
THANK YOU THANK YOU THANK YOU for the many e-mails, notes, and most of all prayers. You are holding us all up!
It’s been a good day. Jessica was extubated around 5 am and has done fine with breathing. She is talking and as the day has gone on it’s been a little louder – though she has always had a soft voice. She still has the nasal oxygen but very minimum. Her sats have been at 90-95%. She has been drinking grape juice and water and had a yogurt today.
Coughing is the worst, but she has to do it. It’s quite painful. She has her favorite Winnie-the-Pooh pillow she holds on to when she has to cough. She is on morphine, so she is seeing somethings double. She is asking a lot of questions, like “what if I have to pee” and we told her there’s a tube, and then wants to know where it goes – and we showed her the bag. We teased her about taking a picture of her with it. I got a scowl with that one! She has told us she remembers being taken for surgery, them putting the hospital gown on her, and then she woke up and thought she had just been dreaming. She wondered why she did not see her surgeon. I told her he will come by here to see her. She wanted to thank him (this all on her own). He came by and I introduced her and she whispered a loud “thank you” to him. He touched the top of her head and told her what a miracle she is. It was pretty precious.
One of Jessica’s nurses from 11 years ago that mainly took care of her in the evenings was on last night and came to see her. She remembered us – gave me a hug, cried and rejoiced with us. She is going to be her nurse tonight. Her daytime nurse also took care of her some too as a baby. We’ve no complaints at all of the care both physically and emotionally.
As of now, it is less likely she will need a pacemaker. There was a possibility that sometime next week they’d go put that back in, but the external pacemaker has been off all day.
Tomorrow they hope to take a line out that goes directly to her heart. They were going to today, but with the bleeding potential with having been on coumadin, they are extra cautious.
The floor here is referring to her as the “Christmas Miracle“.
It’s been a whirlwind 24 hours, but the worst, is over and what an awesome God we praise and thank, for orchestrating such perfect timing ONLY HE could do.
Jessica is out of surgery and resting in ICU. We spoke with her surgeon. It’s pretty awesome shaking the man’s hand that held my daughter’s heart. The surgery went very well. She has a replaced mitral valve and a new conduit which is now a cow’s valve rather than the previous pig’s valve. There are more sizes with cows, and sew and fit better. I am sure Jessica (& Mr. Blough) will have some good jokes with this.
A couple of concerns – being she has been on coumadin for so long, they could not promptly get the blood thinner out of her body. She had been bleeding a little more than normal, needed three units of blood during surgery and is getting more now. It seems to be slowing down and does not appear to be great concern now. Also she is on an external pace maker and she may need surgery in a week or so to put one in permanently. This is a minor surgery, comparatively. This was a possibility 11 years ago, and she did not need it, but we have known through the years she has an irregular heartbeat which she notices and sometimes bothers her.
We were able to spend time in ICU. She is pretty well sedated, which is fine with us. Less for her to remember. We did come back to our room around 10 pm and the nurse called us back because she woke up and wanted us. She peeked at us- opened her eyes wide several times and then one time squinted her eyes hard like in pain. I asked her if she hurt, and she shook her head yes. I asked her if it was her back, no. Her head, no. Her chest, and shook her head yes, so the nurse gave her more drugs.
She is still on the ventilator, but she is breathing above it. She is only on 30% oxygen – very minimum. They will be doing a test with it, to see if they turn it off, and see if she breaths on her own. As she takes a breath, it puffs harder into her (so she does not have to “work” at sucking thru a large straw). If she does not breath, it will do so for her. If she does well with this for an hour or so, she may then be extubated.
There is so much that we marvel at. The surgeon does teaching, speaches and surgeries in Europe and is often gone. He just “happened” to be here today. He also was 6 minutes from taking another child into surgery, and took Jessica who was more critical. Had he not been aware of Jessica in time, it would have been 6-8 hours before getting to her, and . . . .it would not have been good.
We are staying in the hospital hotel – a 5 minute walk to her ICU. They will call us with any changes – good or bad.
Many have asked what we need. Right now we just need to spend time with Jessica. Only two are allowed in ICU at a time, and we will be a little selfish and take that time for ourselves, so for now, no visitors. Our oldest son may come to bring us clothes and other things we need and he may want someone to come with him, as he has not driven to AA before. We are not sure what to do about our rental car as we remembered it’s only in Norm & my name – not insured for anyone else and we agreed to this. So, we are trying to call Enterprise to see what allowances can be made.
Those that live nearby are welcome to check on our children, make sure the house is still standing. Just a little accountability sure helps! 🙂
Please continue praying for Jessica’s recovery, and peaceful sleep for her. So, now we head off to bed, thankful for the extended loan of our precious daughter. We don’t take life for granted. What a good God we praise and serve.
Ihave not written as much on my blog lately on personal things, but come to my readers asking for you to pray for my daughter as she is having emergency open heart surgery as I write this.
This past summer we discovered she has hemi-vertebrae, where 50% of one vertebrea is missing. She has been in a great deal of pain. We had an appointment for this morning with an orthopedic surgeon to decide the next move. We arrived at the hotel last night. We took Jessica into the hospital to show here where she was 11 years ago at this time when she had two open heart surgeries and found out one of her main nurses will be on tonight but were disappointed we’d not see her.
We went back to our hotel room and got ready for bed. Jessica began having a hard time breathing and her heart was beating very rapidly and hard – which we could see across the room. We thought it might be panic attacks or a reaction to Tylenol PM which she just began taking. We walked her around, and then she said something to me, the song keeps coming in my mind that someday there will be no more pain, tears or sorrow. God prompted our hearts – we knew something was definitely wrong – and I had an idea it was her heart.
We got her right away into ER and they were beyond wonderful. It was first discovered she has double pneumonia – and later learned it was because of the mitral valve she had replaced 11 years ago was failing, causing leaking into her lungs. Her oxygen levels were at 85% without getting oxygen. Her heart rates were very rapid, many times up to 120.
We are so thankful God allowed us to be here now, at the right time. It blows our minds of just His perfect timing and protection. Our fist appt. was scheduled for Jan. 7th, but because of her back pain was moved up. “In everything give thanks” and I am thankful for her back pain that got us here sooner. We questioned so many times why this was not discovered years ago with her back. Thank God it was not discovered.
She was taken into surgery about 2:30 – heart wrenching. She asked me several times “what if I don’t make it”. I told her I believe that God has her so surrounded in His hands to allow this to play out like this that I don’t believe He’d allow her to go. But she asked again – and again. Finally I said, “Jessica if you go, you give Matthew & Angela a big hug for me – and before you know it, you will turn around and there we will be.” We told her repeatedly how many are praying for her and the surgeons and the host of angels that are in that surgery room.
We have had wonderful docs, nurses and cardiolgists here. Several had tears with us. One cardiologist has been very sweet and was one of her cards 11 years ago. The other thing is last night before settling in our room, we took Jessica for a walk to see the Peds Cardiology dept. where she spent 10 weeks end of 1997 – early 1998. We found out one of her main nurses will be on tonight. So we are hopeful she will care for her again.
Our hearts are breaking. Yes, we fear. I try not to imagine the what ifs – but it’s there too. Please pray. Pray for our kids at home. Heather is with us. Norm is struggling (and I worry about his heart). He is quite anxious right now, pacing about. We also had not planned this and had rented a car – so we have got to get this back. We only brought one change of clothes and forgot our phone chargers. These are minor, comparatively.