Tomorrow

So, tomorrow my little sweet pea gets to go back home! Yay!

Cardio Conference

So, the cardio team, without knowing it, answered my #1 concern about the procedure that they had mentioned doing. They decided that opening her pulmonary valve is not the best plan of action right now because it could flood her lungs due to her small mitral valve and small left ventricle and it is possible that it could make the VSDs worse and there's no telling what would happen with the ASD. So, the new plan of action is to send her home to grow and for cardio to see her back in 3 weeks so that they can reassess then. What they want to eventually do is another diagnostic cath lab procedure that could possibly lead to corrections or point to going ahead with open heart surgery.

:|

Rebekah has seemed kind of puny today. She has randomly screamed intermittently throughout the day, but it would stop just as suddenly as it had started. She also spent half the day grunting. The peds resident came and looked at her and said she couldn't see any clinical reason for her to not feel good even though she obviously didn't. She has taken a few little cap naps with the longest only being 30 minutes, so maybe she will sleep well tonight. 

Hangin out

Until tomorrow afternoon, when we will find out what will happen next week, we are just hanging out in the hospital. 

Heart

Rebekah is going to have to have another heart procedure in order to correct the pulmonary stenosis. They are hopeful that it can be resolved in a cath lab but will determine for sure this Friday.

Just one more thing to pray for

Today's echo revealed that Rebekah's pulmonary stenosis has become worse. Hopefully, the team will decide what that means for her tomorrow.

Looking Good

Rebekah is down to 1/4L of O2! Yay! And she looks absolutely fabulous in an outfit from her Mema.

Same old same old

Rebekah once again had an elevated temp upon my arrival but it came down once she was allowed to lay in just a diaper and then she began to sleep well. She still requires extra oxygen, but only a very little amount.

New high!

Rebekah is 3.72 kg or 8 lb 3.5 oz

New room

Yay for a new room on the floor!

Tests

It has officially been 48 hours since the lumbar puncture and nothing has grown! Yay! Why did her fontanel bulge suddenly? Who knows? Well, God knows and Rebekah probably has a fairly good idea, but no one else does and it doesn't really matter now that it has gone back to normal. 

It came back down with laying in the bed nearly nakee.

Today, Rebekah is supposed to move out to the floor (the final step before departure to home). So, of course, she was running a slight fever when I got here. However, the nurse thinks it is possible that the elevated temperature could be a combination of being held too closely by prior visiting family and being really worked up from working on a present. We'll recheck it in a little while.

:)

Rebekah's fontanel looks a little better today.

They said her initial pressure was elevated and they took out 4 ccs which made the swelling in her fontanel go down. The fluid was clear, which is good. The gram stains come back quickly but the cultures take up to 48 hours.

Lumbar Puncture

The procedure will start within the next 30 minutes to an hour when they have the nursing staff available.

Same

When I got here today, Rebekah was under a heat lamp because she had gotten too cool and her core temperature had dropped. She is also utterly exhausted.
The neurosurgeon resident just came in and is going to talk to the head of the neurosurgeon department because they want to do a lumbar puncture.

Official

The preliminary diagnosis is now the official diagnosis: hydrocephalus ex vacuo "water on the brain from nothingness."

A new mystery

So Rebekah's head ct didn't show any reason for her sudden fontanel fullness so the preliminary diagnosis is hydrocephalus ex vacuo. That means she has excess cerebral fluid for no apparent reason. The neuro radiologist is going to look at it and they are going to do neuro checks every 4 hours throughout the night.

Fontanel

This afternoon, Rebekah's fontanel seemed full to me. When the doctor came to look at her, I asked about it and now she is waiting to get a CT scan of her brain to make sure there isn't increased pressure in her skull.

O2 requirements

Rebekah is on 2L of O2! Yay! Let's hope and pray she continues the downward requirement trend.

Stable

Rebekah is still doing the same. I guess that means she's stable. Yesterday's transition from C-PAP to high flow went well and she's done well on the high flow for almost 24 hours now. She is down to 4 L.

:s

Because her lungs continue to be flooded with excess fluid, the doctors cut back her food rate and added concentrated calories. However, she has lost some weight and is now 7lb 13oz. She seems to be content and really enjoyed her bath today.

High Flow

Rebekah's respiratory therapist is planning to move her from C-PAP to high flow today.

Smiley

Rebekah is full of smiles today. She hasn't cried all day either and she's down to 5L of O2. Pretty awesome.

Baby Dedication

Rebekah was dedicated to The Lord today. It was a small ceremony held in the hospital at her bedside. She was presented with her own Bible and I and those in attendance promised to help her grow up loving Jesus. Pastor Jeff prayed that we might all be as courageous as Rebekah is.

New room, new high

We finally moved to the new room (which is conveniently located right next to the bathroom) and Rebekah is now right at 8lbs which is a record high for her! Yay!

Move

She is finally moving to high acuity at 0130!

Same

Rebekah continues to do the same as yesterday, health wise. She hasn't ran a fever again and seems fairly content as long as she has her pacifier. She was a little fussy throughout the night, but actually slept for an hour and a half in one stretch at one point in the night which was pretty awesome. We are still waiting on a room to open up in the IMC so that she can move out of the ICU room. She is already back on the IMC rounds as far as doctors go. Tomorrow evening, my pastor is coming to do a baby dedication for her in her room. That should be amazing.

:)

Her fever is FINALLY starting To come down after more than 24 hours.

Fever

Rebekah continues to run a constant fever. She is irritable and fussy, probably because they can't feed her because they have an apparent shortage of feeding pumps. She is only consoled by her pacifier which she has trouble keeping in her mouth and when you prop it up, she windmills her arm until the object holding it in moves. I feel so bad for my hurting baby.

Recover

Rebekah ran a fever throughout most of the night. However, she has stabilized a great deal and they have moved her back to high acuity status even though she can't move out of the PICU because there isn't a room available in the next step down. She is still on C-PAP and they said there isn't an infection anywhere that they could find, so it is probably her brain function that caused these spells.

Visited

My grandma, Rebekah's great-grandmother came to visit today.

:(

Rebekah is back on C-PAP

Floor

Yay! As soon as a room is available, Rebekah gets to move out to the floor which is usually the last step before home!

With the exception of beig a little fussy, probably because she can't easily be turned due to another head iv, Rebekah has been doing great! She's all the way down to 2 liters of oxygen and a low flow cannula! She is such a trooper. I am so blessed to call her my daughter.

Up

Rebekah continues to improve. She has only had one fever in the past 48 hours, which is awesome! It came down right away too, so that is good. 

fever

Rebekah had another fever today, but she is trending down, thankfully. Her oxygen requirements are also down :)

Well

Rebekah is still doing well. She is maintaining her temperature except for one fever (that responded to Tylenol) and improving on her oxygen requirements.

Family Meeting

Rebekah continues to improve. We had a family meeting today to discuss what measures we wanted to be taken should a crisis situation occur. That was super fun. On the plus side, several hospital personnel confirmed that nothing I did could have changed the outcome of Rebekah's health.

Much Improved

Last night, Rebekah had a major improvement. She was taken off the C-PAP and then moved to intermediate (as previously noted). She has continued to be weened off her high-flow oxygen status, though she is still on high-flow. Her stats look great and her blood work looks much better. What they think happened is that she got the campylobacter and then, due to the loose stools, had interococcus (spelling?) introduced to her urinary tract. When they started her on broad-spectrum antibiotics yesterday, they were hoping that it would knock out whatever was the worst. At this point, she is on two kinds of antibiotics through the iv. The one for the camylobacter is being changed to an "oral" medicine today (being administered through her j tube). They are awaiting the sensitivity tests for the interococcus to see if there is an oral medication for her to take that will knock it out. If not, then she will have to stay on the iv antibiotic. They (the doctors because the nurses already knew) finally came to the conclusion that Rebekah really needs a more permanent iv access so that she doesn't have to constantly be poked for a peripheral iv. However, she cannot get that until she gets healthy because it is a surgery. Rebekah is also back to her feisty self and is letting everyone know when she does not like something, which is totally awesome!

She has moved back to intermediate.

Stable

Rebekah has stabilized. This is not saying that she is better, just that she stopped getting worse.

ICU

Rebekah has been moved to the ICU at Brenners. They have started her antibiotics and placed her on the C-PAP machine. Her temperature finally came down all the way.

Downhill

Rebekah has started on a kind of downhill run today. She is non-responsive post-105.7 fever which she had at 9am. Her fever is down, but she didn't even flinch when she was repeatedly stuck for blood draws and iv access. This is not good.

Cramps

Poor Rebekah has suffered from what is apparently severe abdominal cramps throughout yesterday and tonight. It is just part of the intestinal infection but it is difficult to see her in so much pain. Tylenol and gas drops can only do so much. Laying prone is the only thing that seems to help at all.

ED update

Her liver function is normal, but her glucose level is high. They still aren't sure if she will be admitted or not.

Findings

It is campylobacter. They found it in her bm. In addition, her cry has been completely absent. She left for Brenners around 9:30 because the doctors in Boone are uncomfortable treating her.

Fever

I woke up this morning at 5:30 to find Rebekah had developed a fever of 107.8. I had just checked her at 3:30 and she was fine with a temp of 100.1. She is in the hospital in Boone. Because of bowel movement changes as well, they suspect some kind of intestinal infection that they didn't check for before when in Winston. The nurses here in Boone are being pretty awesome about it and are trying to keep her from having to go back to Winston.

Home. Again but hopefully longer.

So, the doctors and nurses and coordinators arranged for me to be able to give Rebekah more than a half liter of oxygen at home, if necessary so that we can potentially stay out of the hospital except for clinic days. This is awesome because that is usually all the give her, as far as intervention goes, when she is in the hospital. They agree that, through observation, it seems like her hypothalamus does not always function properly which is what usually causes sudden fevers and an increased need for oxygen. They gave me very clear lines to say when she needs to be seen by a physician as well in case it is not the cause at any given time. I will also now have 24 hour access to a nurse to come to the house to evaluate her so that she doesn't have to be seen every time something happens. I think we have all finally arrived at the place where everyone agrees that home is where Rebekah does best.

Pulmonology

Rebekah had a few fevers today but is doing well overall. She seemed pretty happy with having clothes on for the first time in a while. We should hear from pulmonology tomorrow about her lungs.

Intestinal infection

Rebekah is back at the hospital already. It will take a few days to confirm, but they are fairly certain that she has a type of intestinal infection caused by taking too many antibiotics.

:)

Rebekah has done well today. She's starting pt and nutritionist checks next week.