We spent the next two days in the PICU getting better on Thursday they moved us to a different room with another child, Branic" who had and upper and lower hole fixed in his heart. Both kiddos just loved the Einstein videos I had brought and the nurses just kept playing them all day. I guess it kept them both pretty calm when the parents weren't around, Especially Braninc who could holler for his Mama.
Then on Friday we were able to give her formula and remove all the remaining lines and start her oral medications. By that evening were were back up on Sutherland 4 room 7, with heather and then Tanya. It felt so good to get back up there and be that much closer to coming home.
A plus for us was that our good friends Penny and Eric came up to see us and take us out to eat however late it was. It actually felt "normal" which was nice after an extremely stressful week.
Wednesday, December 27, 2006
December 13th
MY mom and Dad came over with Mark about 7:00 am, so I went to shower and feel like a human after spending the night in the PICU waiting room. After Mark, Grandma and Papa were able to see her they came and got me and we went to breakfast. Ella was doing fine at the time so we took the time for a nice breakfast at Dagwood's.
When we got back by 10:15 we became concerned. Her breathing seems to be extraordinarily labored and she was constantly whimpering with every breath. We talk to the respiratory therapist and the nurses and the residents and anyone who came in about it and it was all considered to be "normal" after being on a respirator and that her lungs were clear, but we didn't buy it. It was so hard to see her in pain and not be able to find the problem! So much so that you had to leave or have a nervous break down right then and there.
One of us stayed with her and continued to "hound" in a nice way, about her breathing and whimpering. Around 12:30ish Jessica the nurse for the day, suggested that I hold her to see if that would help comfort her some, which it did for awhile. The O2 monitor came off while doing so and so they had to get it back on which seem to be impossible. They could not get it to read. Jessica finally went and got the respiratory therapist who also couldn't get it took work. After spending about 5 minutes or more kneeling at my feet trying to get it on I had them help me put her back down so they could get it on. Since they did not know what her leaves were they went ahead and used the O2 mask while they got the monitor on. After it was back on her breathing became even more labored and she could not hold her O2 without the make on so the resident and the on attending Doc, Doc Allen started paying a little more attention. Finally they ordered another chest x-ray and discovered that her lungs were indeed filling up with fluid. Her body and her lungs were having problems dealing with all the extra fluid. So it was back on the ventilator.
They hooked her up to a Bi-pap to create positive airway pressure, and force her lungs to expand to capacity with every breath and help the body force the fluid out. It worked but they had to mildly sedate her again and strap that mask down tight enough that it left little reddish blisters where it rubbed her face. So Wednesday was spent out and hooked up to machines.
When we got back by 10:15 we became concerned. Her breathing seems to be extraordinarily labored and she was constantly whimpering with every breath. We talk to the respiratory therapist and the nurses and the residents and anyone who came in about it and it was all considered to be "normal" after being on a respirator and that her lungs were clear, but we didn't buy it. It was so hard to see her in pain and not be able to find the problem! So much so that you had to leave or have a nervous break down right then and there.
One of us stayed with her and continued to "hound" in a nice way, about her breathing and whimpering. Around 12:30ish Jessica the nurse for the day, suggested that I hold her to see if that would help comfort her some, which it did for awhile. The O2 monitor came off while doing so and so they had to get it back on which seem to be impossible. They could not get it to read. Jessica finally went and got the respiratory therapist who also couldn't get it took work. After spending about 5 minutes or more kneeling at my feet trying to get it on I had them help me put her back down so they could get it on. Since they did not know what her leaves were they went ahead and used the O2 mask while they got the monitor on. After it was back on her breathing became even more labored and she could not hold her O2 without the make on so the resident and the on attending Doc, Doc Allen started paying a little more attention. Finally they ordered another chest x-ray and discovered that her lungs were indeed filling up with fluid. Her body and her lungs were having problems dealing with all the extra fluid. So it was back on the ventilator.
They hooked her up to a Bi-pap to create positive airway pressure, and force her lungs to expand to capacity with every breath and help the body force the fluid out. It worked but they had to mildly sedate her again and strap that mask down tight enough that it left little reddish blisters where it rubbed her face. So Wednesday was spent out and hooked up to machines.
Thursday, December 14, 2006
Dec11th & 12th
Today is surgery day! We are putting in the shunt that will allow for blood to flow to the lungs even if she has a severe Tet spell. They picked Ella up at 7:30ish for surgery. They had a hard time getting the arterial line in for internal blood pressure but that was the only complication if you can call it that.
We were out of surgery and in a room and set up to go by 1:00. Since they needed to keep her sedated throughout the day. She did try to wake up early so she got an extra does of medication to put her back to sleep. Lenee was watching her that day and wanted us to take care of ourselves so we would be ready for the harder parts later in the week. So we took the time to rest and recoup for the week. Only going back for the before and after shift change routine and check in with the nurses.
On Tuesday we started the wake up process. As she floated in and out so did we. She finally started to wake up in the evening but seemed to only have eyes for grandma and papa.
I spent the night with Becky so I could be there when they int abated her. They shut off the ventilator around 11:30 and then at 1:00 took the tubes out. From there she seemed to rest comfortably so I went and called her daddy and then to sleep.
We were out of surgery and in a room and set up to go by 1:00. Since they needed to keep her sedated throughout the day. She did try to wake up early so she got an extra does of medication to put her back to sleep. Lenee was watching her that day and wanted us to take care of ourselves so we would be ready for the harder parts later in the week. So we took the time to rest and recoup for the week. Only going back for the before and after shift change routine and check in with the nurses.
On Tuesday we started the wake up process. As she floated in and out so did we. She finally started to wake up in the evening but seemed to only have eyes for grandma and papa.
I spent the night with Becky so I could be there when they int abated her. They shut off the ventilator around 11:30 and then at 1:00 took the tubes out. From there she seemed to rest comfortably so I went and called her daddy and then to sleep.
Dec 9th & 10th
These days were fairly quiet. We were up on the 4th flor of Sutherland tower in a regular room. We played and had a good time but did have problems keeping our O2 saturatation where it should be, basically haveing some cyanotic spells that required Oxygen and IV fluids. But we managed to pass the days fairly uneventfully, although the spell on Sunday night at 3:15 threw me off since by the time I had Elizabeth down again it was time for me to get up and ready for the day.
All the grandparents were able to make it down that night.
All the grandparents were able to make it down that night.
Thurday Dec 7th & Friday Dec 8th
I am going to post this by day for the most part. On Dec. 7th we came to Children's Mercy Hospital in KC for a Heart Catherization procedure. We knew that this would be happening and weren't overly concerned. We talked to all the Doctors and did Elizabeth vitals and anything else they needed to be done. She was happy and content. I had not worries when they took her in for the actual procedure.
During the procedure we called to see if we had been able to get into the Ronald McDonald house here. We had to call three times but we did get in.
When she was taken to recovery things were still going well. While she was there we got to look at the pictures of her heart. That was when we found out the the left descending coronary artery wrapped around the right side of the pulmonary tree instead of staying on the left. So it crosses over right where they would need to do surgery, and the traditional fix will not work. Thus come in the need for a donor valve and multiple surgeries as she out grows the valve, and it has to be replaced. This is called a homograph and All I could think of what it is in reading. Then chuckled later realizing the word IS a homograph.
About 30 to 45 minutes later they came and got us and took us to see her on the floor where she would be for the evening. She was doing well and they had given her some apple juice and we tried to give her more grape juice as to hopefully protect her bottom from the damage apple juice does. While doing so, it became apparent that she was having trouble breathing and was getting raspier by the minute and was struggling. Her O2 stats kept dropping until they had more doctors than you can shake a stick at in there. When the nurses started calling for the doctors I remember a friends (Jennifer) advice and left the room. Since it was obvious that I was upset the other nurses called the Chaplin and came over to talk to me. Mark soon appeared and as the chaos was going on around us the other nurses and the Chaplin let us know what was going on. The hardest part was hearing them call a code on her and facing the possibility that we could lose her right there.
We talked to the cardiologists, both Dr. Kane and Dr. Hubble and the let us know that she was having a severe Tet spell and had lost consciousness. Since it had happened once they couldn't send her home as planned because having one spell increases the chances of another and an intermediary fix would need to be done, but they would know more after conference on Friday when her case was presented to the team and they could discuss treatment options for her.
We where then moved to the Pediatric ICU or PICU, where we spent the night. The chaplain, Janie, contacted a priest for us and let the Ronald McDonald House know that we had an emergency and would be there as soon as it was possible for us to. We did get checked in and the priest arrived. We started to let family know that things had changed and we would be here awhile. Then we started laying plans for taking care of the things at home and getting necessities like a boarder for the cats and clothes. I stayed at the hospital that night while Mark slept in the room.
On Friday they moved her up to the floor where we spent the weekend. Mark headed home to take care of things there. Susan came up to visit and help me run some errands. After a terribly long 48 hours and about 6 hours sleep in that time. I crashed at 1:00am till Saturday morning and was back in the room by 9:00am. Only because security didn't pick me up.
While in the ICU we had wonderful nurses. Lenee, Lauren, Nicole, and another that I can't currently place a name to were a God send. May God bless them and their colleagues as they are truly talented and caring people.
During the procedure we called to see if we had been able to get into the Ronald McDonald house here. We had to call three times but we did get in.
When she was taken to recovery things were still going well. While she was there we got to look at the pictures of her heart. That was when we found out the the left descending coronary artery wrapped around the right side of the pulmonary tree instead of staying on the left. So it crosses over right where they would need to do surgery, and the traditional fix will not work. Thus come in the need for a donor valve and multiple surgeries as she out grows the valve, and it has to be replaced. This is called a homograph and All I could think of what it is in reading. Then chuckled later realizing the word IS a homograph.
About 30 to 45 minutes later they came and got us and took us to see her on the floor where she would be for the evening. She was doing well and they had given her some apple juice and we tried to give her more grape juice as to hopefully protect her bottom from the damage apple juice does. While doing so, it became apparent that she was having trouble breathing and was getting raspier by the minute and was struggling. Her O2 stats kept dropping until they had more doctors than you can shake a stick at in there. When the nurses started calling for the doctors I remember a friends (Jennifer) advice and left the room. Since it was obvious that I was upset the other nurses called the Chaplin and came over to talk to me. Mark soon appeared and as the chaos was going on around us the other nurses and the Chaplin let us know what was going on. The hardest part was hearing them call a code on her and facing the possibility that we could lose her right there.
We talked to the cardiologists, both Dr. Kane and Dr. Hubble and the let us know that she was having a severe Tet spell and had lost consciousness. Since it had happened once they couldn't send her home as planned because having one spell increases the chances of another and an intermediary fix would need to be done, but they would know more after conference on Friday when her case was presented to the team and they could discuss treatment options for her.
We where then moved to the Pediatric ICU or PICU, where we spent the night. The chaplain, Janie, contacted a priest for us and let the Ronald McDonald House know that we had an emergency and would be there as soon as it was possible for us to. We did get checked in and the priest arrived. We started to let family know that things had changed and we would be here awhile. Then we started laying plans for taking care of the things at home and getting necessities like a boarder for the cats and clothes. I stayed at the hospital that night while Mark slept in the room.
On Friday they moved her up to the floor where we spent the weekend. Mark headed home to take care of things there. Susan came up to visit and help me run some errands. After a terribly long 48 hours and about 6 hours sleep in that time. I crashed at 1:00am till Saturday morning and was back in the room by 9:00am. Only because security didn't pick me up.
While in the ICU we had wonderful nurses. Lenee, Lauren, Nicole, and another that I can't currently place a name to were a God send. May God bless them and their colleagues as they are truly talented and caring people.
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