It was now January 31st. Rylie would be five months old tomorrow and we were having to take her in to the hospital for her cardiac catheterization. I was petrified in having her go through this. Her heart problems had me really scared in the first place but I think I lost it when he said her heart was failing and she would need the surgery soon. And when he started telling me about the cath. procedure it made me even more nervous than I already was. He had to have a WITNESS in the room verifying that he had told me all the risks of having a cath. done. I just kept thinking why? Isn't this extreme? I had to sign the papers saying I understood everything the cardiologist said to me and that I gave him authorization to do it. They would stick a tiny tube into an artery in her leg and travel it all the way up into her heart!
We were not allowed to feed her after two a.m. At seven a.m. we were up in the children's unit of the hospital and had Rylie in her own little crib awaiting the morning procedure. A nurse came in and said that the cardiologist was getting ready and that they needed to start an I.V. in her. They had Rylie's blood drawn the previous day so I knew finding a vein was pretty simple on her, I mean the lady yesterday didn't have any problems! So, the nurse attempted to put an I.V. in Rylie's tiny little hands, which I found unusual in the first place. Why not the crook of her arm where the vein is bigger and easier to find? Well, while me, my husband, and another nurse are pinning the poor child down she attempted the I.V. and failed in her left hand. I was already to tears at this point because they weren't giving her anything to numb the skin before hand like they do on an adult and her mommy and daddy were pinning her down while we allowed these strangers to poke at her.
Now, the nurse was trying the other hand, then her left foot and now her right foot. All this time we are pinning her down and she is screaming and looking at us like we had betrayed her. I am crying as well watching my poor, helpless little girl get prodded everywhere by an incompetent nurse! Now the nurse says she is going to try her head!! I know she saw the look on my face because she said not to worry that it didn't hurt any worse, it just looks painful in the head. And can you believe this? The nurse couldn't get the vein there either! I just wanted to hold my poor baby who hadn't been allowed to eat. I was crying along with her. I couldn't believe this was happening. I was scared to death of losing her during the cath. from all the terrible things the cardiologist had to inform me of and now they couldn't even get an I.V. in her to quickly give her medicine in case something were to happen during the cath.
The nurse finally gave up and said that Rylie didn't have any veins for her to get (yea, right) and
she would go see what the doctor wanted her to do. She came back and said they would do the procedure without one. I was upset, to say the least. She said that if something were to happen to Rylie they could give her medicine through the cath in her leg. Which led me to the question of why did they have to mess with an I.V. in the first place? I know now that I should have asked for a new nurse after the 2nd failed attempt.
We had to hand Rylie over and I lost it. Completely lost it. I was afraid I would never see her again. We headed down to the waiting room where we were greeted by our families and two very special friends from our church. They prayed with us and reminded us that God was in control and we should trust in him. Which I wasn't doing and which is why I was having such a hard time dealing with this. I wasn't putting my trust in the Lord, I was taking all of the burden when I should have been putting it on Him. I tried to sleep my thoughts away until the cath. was over.
The doctor came in when it was over and said that Rylie had done just fine. He did say that her heart had started to accelerate into the 180's and he quickly pulled the cath. out of her heart and it returned to a normal beat and didn't do it again for the rest of the procedure. I just wanted to hold her and see for myself that she was alright. We were able to take her home at six that night. After all she had been through that day, I was the one who seemed worse for the wear! I was thrilled to have it over and just wanted to get through the next step, her surgery.
I was still petrified of the surgery but not near as much as I was with the cath. I was so nervous with that thing! After her cath. was over, I don't know the exact date, but I was taking a relaxing bath when all of a sudden this unbelievable calm came over me. I just felt an incredible peace within myself. And I instantly knew that the Holy Spirit was upon me and relieving me of my stress, worries and burdens over Rylie's surgery. They dissapeared from my thoughts in that moment. I knew, without a doubt, that Rylie would come through her surgery without any problems. I still well up with tears when I think back on all of this. The Lord cared enough for me to tell me that my daughter was going to be just fine. That He was in control and to just trust in him. Which is exactly what I did. I put my complete trust in the Lord and let him care for my worries. I was able to focus more clearly and see beyond her surgery.
On Feb. 19th of '96, we checked Rylie into St. Louis Children's Hospital. They had to do some preliminary tests for the surgery. They took an echocardiogram, chest x-ray, and EKG. They needed her very calm and still for her echo so they had to sedate her. When she woke up she was EXTREMELY hyper! Which the nurses said was very normal. After the echo we got our own room. They put a monitor on her chest and studied it for the next 24 hours. All of the nurses fell in love with Rylie. They said they didn't think she looked like she had a hole in her heart either. She just wasn't a typical heart baby i.e. turning blue, passing out, sweating...
We got to talk to all the Doctors that nite about the surgery. They would cut through her sternum to get to her heart. They would then have to put her on a heart/lung machine for them to cut through her atrium to repair the hole at the top of her ventricles. Then they would repair the hole by sewing a dacron patch over it. There were also some muscle bundles that grew in her ventricle and they would cut them out as well. Then stitch up the cut in the atrium and procede to close by tying six pieces of wire around her sternum and stitching up her chest. There would be a 1 in 50 chance she would need a pacemaker.
To see a picture of Rylie's incision shortly after surgery click here
The nurses came and got Rylie at 8:15 a.m. We took her down to the O.R. and I was able to rock with her for a few minutes before the anesthesiologist took her away. They said it would take approximately 4 hours. They kept us informed on how she was progressing, and everything went very well. No problems, just as I knew there wouldn't be.
Rylie was in PICU (pediatric intensive care unit)by 12:30.
It was very overwhelming to finally see her. We had been "semi" prepped the day before on what she would look like following surgery. They had even let us into the PICU so we would know what to expect, but when it is your own child lying there with a tube or wire coming out of almost every part of their tiny little body, reality really hits you on what they have just been through. I thought I would be fine seeing her that way but I burst into tears and started shaking. The nurse wanted me to sit down and relax a little but I said I would be just fine, that I was just in a little shock at finally seeing her. There was a tube from her chest draining blood from around her heart and lungs. She was on a ventilator and had I.V.s everywhere. She was still very sedated and remained so all through that night. She was in good condition. The guys who ran the heart and lung machine gave her a stuffed Koala bear and had put it in her crib. See a picture of Rylie in the PICU
Wed. the day after surgery... They slowly started to wean her off of the respirator and to let her wake up a little bit. She breathed a little oxygen until 3:00 and then she was on room air. She was doing very well with no problems. She got her chest tube and the I.V. from her neck out. That evening at the nurse shift change, Rylie started too wake up a little bit and became agitated. We are not allowed in there (PICU) during this time as the Doctors are looking over the patients as well. The new nurse gave Rylie a combination of morphine and a new sedative she hadn't recieved before called ADAVAN (sp?). It was supposed to be a mild sedative but Rylie had a reaction to it and went into a VERY deep state of sleep. We could tell from the doorway that it looked like there might be something wrong with Rylie. We called into the nursing station and they said that everything was just fine. When the time arrived for the shift change to be over we were still not allowed into the PICU because a problem had arisen with another patient. When we were finally allowed in (half an hour later than normal) Rylie was wheezing with every breath she took. She sounded as if she wasn't getting enough air. They had to put her back on oxygen. My mother was there with me and started getting very upset. We could tell something wasn't right but the attending physician said everything was o.k. It only took a few more breaths of Rylie breathing that way before my mother said that this was riduculous...she shouldn't sound that way and wasn't there something they could do? The attending decided to finally counteract the adavan with Narcan (sp?). She INSTANTLY came out of it. It was amazing...the nurse didn't even finish giving the whole syringe before she came out of it. After that Rylie was just fine.
Thurs., two days following surgery... Rylie started the day out just fine. She was breathing room air and her blood gases were good. Around 9:30, her hemoglobin and hematacrin were low so they gave her a blood transfusion. I thank God we had her daddy and family members donate blood for her. We don't know whose blood she recieved but at least we know it was a family member. Her oxygen saturation was low so they put her on oxygen- 1/2 liter an hour, not very much. After the blood was transfused she was able to leave the PICU!! They took the pacemaker wires out of her chest (she would not need them) and they took the atrial I.V. out of her wrist. When they put it in on the day of the surgery they had to slit her wrist to get the vein. It required one stitch.
Fri., three days after surgery... Rylie had to have her post-op tests done. Her echo showed a small V.S.D., but the doctors said it was nothing to worry about, it would close. Her chest x-ray showed some air or fluid behind her sternum (plueral effusion), but not very much. She looked really good and had minimal pain. We didn't know it at the time but she was getting her first tooth!! She still wasn't eating well (which she never did before anyway) so they wanted to put an NG tube in. The tube goes down the nose and into the tummy. The nurse must not have known what she was doing because she gave Rylie 3 oz. of formula in about a min. Which was WAY too fast. My mom and I just looked at each other while she did this. Poor Rylie instantly vomited it right back up. She continued to eat from a bottle pretty well through the night.She got both I.V.s out of her feet. Her heart rate was slowing down some which is what it was supposed to do and what the doctors said might take some time to do.
Sat., Four days after surgery... Rylie had another chest x-ray and her plueral effusion was a little milder. They said she could go home Mon. if she was still doing so good. They took the NG tube out because she kept gagging on it. She was able to recognize the nurses and would cry if they got any where near her. We had to talk to an occupational therapist on her eating and how to make her do it. They gave us special bottles that babies with cleft pallets use in order that we could squeeze formula down while she was drinking it to get a few extra ounces in her. I asked the doctors about the Digoxin because a side affect was no appetite. They decided to take her off, which worried me since she had been on it since she was born. They said that this would be the perfect place since she was in the hospital. She was still on Lasix.
Mon., six days after surgery... We get to go home!!! We have to watch a CPR video before we leave. I feel so blessed that we finally get to go home. Being there at the children's hospital made us all realize how lucky we were that Rylie had "just" a V.S.D. and that there wasn't anything more severe wrong with her heart. A baby a few doors down had "coded" a few nites earlier. They revived her, but she was nine months old and smaller than Rylie who was tiny herself. There was also a baby in the PICU whose chest they could not close following surgery because the heart was so swollen. Until you have a child with a major life threatening problem, you don't realize what all can and does go wrong with children. We are so blessed with Rylie and her hole... it could have been much worse and for many people it is. We have to have a follow up with Rylie's regular cardiologist, Dr. Wagman when we get back to Springfield.
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