Emergency room and MORE

Well, here we are again living our lives in the hospital. We had to take Teryn to the ER Saturday night and she had to be admitted. (Not because there is anything wrong with HER.) Let me go back a few days to give you the full story.

Last week I noticed that a couple of times when she spit up that there was a pink tinge to it. Usually her spit up is clear because NOTHING goes into her stomach except for the saliva she swallows. So to see pink was obviously puzzling. The next morning when I went to take her out of her bed she spit up and there was a lot of pink. This is when I got really suspicious. I immediately knew it was her anti-seizure meds because that is the only thing she gets that is pink. The million dollar question is how did it get to her stomach to be refluxed in the first place????? I took her out of the bed and put her on her changing table to begin changing her diaper, clothes, and gtube dressing. Then I received an even bugger surprise....the gauze all around her dressing was pink as well. So, the meds were definitely in her stomach somehow and were being forced out the opening in her stomach that holds her gtube. This was on Wednesday and at that point she had not had a bowel movement in 3 days so based on both of these concerns we got an appointment to go in and see her pediatrician.

Her pediatrician was also puzzled about where the pink could be coming from but wasn't too concerned about it at that point because we still assumed her g/j tube was in place because she wasn't refluxing any of her food. We began a referral for the gastroenterologist and he suggested giving her prune-apple juice for the constipation. (wow, there are fun topics on this blog aren't there). He also discovered that she had ANOTHER ear infection in her right ear and the beginnings of an infection in her left ear. So we got a prescription for a stronger antibiotic and headed home. The next morning the prune juice had done its job (I will leave it at that) but her gtube dressing was pink again and she began refluxing pink again. I called her doctor and asked if we could possibly get an xray to check for placement and also a blood level to make sure her seizure meds were still okay. We got the results of both of those things on Friday and they were fine. So we were left still being puzzled.

Saturday I gave her seizure meds to her very slowly hoping that would help with it not coming back out. It seemed to be helping. We went up and did some work in my classroom and we were going to go grocery shopping but Teryn was a bit fussy and was spitting up more than usual so we decided to head home. Later that night I was giving her the antibiotic and I couldn't get it to flush through the tube. I did all the tricks we learned in our gtube class to get it cleared and was successful in getting the full volume to go through. Then I went to get her bath ready and James was holding her. He called me back into the room and said her clothes were all wet on the back. I checked her stoma site (where the gtube goes in her stomach - this area used to leak when she was receiving food in her tummy) it was dry. I checked to make sure I hadn't forgotten to close the port, checked to make sure it wasn't her diaper. It looked like water and the antibiotic I had just given her. At this point I knew there had to be a break in her tube somewhere. So I got some sterile water and flushed it through and sure enough it started squirting straight out.

Here is a picture of her tube so you can somewhat see what I am talking about. The white is the gtube part that goes straight into her stomach. The yellow is the j part that bypasses her stomach and goes straight into her intestines. There isn't a g/j small enough for Teryn so this is one that the surgeons created. You can see this port would usually close but since there is another tube going through, it can't. This is where her gastric contents were leaking from until they finally filled the open area with some stoma adhesive paste. It has been great since then. She still isn't leaking gastric contents, rather there is a break in the yellow j portion somewhere in this area and when I tried to flush the water through it squirted out of this port. So when I tried giving her meds it would leak out of the yellow(j) into the white(g) and flow into her stomach and ultimately be refluxed.

I knew we were going to have to go to the ER since we couldn't give food or meds and she might get dehydrated. I also knew that since it was Saturday night that we would probably be admitted so she could get fluid and meds. So I packed up what she would need and we headed to the hospital around 8:30 pm. As soon as we got here I asked if anyone had seen her surgeon in house but he wasn't around that night. I knew ultimately this would be a case for him. So we got situated in our new pediatric ER and waiting on the ER doctor to come and see us. Here is Teryn waking up from a short nap she was taking.

This is one of the new holding rooms in our new ER.

The doctor working that night was new to the area and this was only his 2nd night at our hospital so he wasn't familiar with our surgeon. I told him to mention the name to anyone in the hospital and they would know him. Sure enough, within 10 minutes they had spoken to him and Teryn's pediatrician and they decided to admit her for fluids and meds (saw that coming huh?). We knew if there was ever a problem then it would be a process to fix or replace this tube. So around 10:30 we headed up to her room. The nurses were getting her ready to go and have an IV put in. I warned them it was a tricky ordeal for her and that most of her veins had been used up and haven't recovered yet. So........2 HOURS later they come back and tell me they were unsuccessful with getting a line in. I was not surprised and knew it had nothing to do with their ability. They had even called over one of Teryn's previous NICU nurses to try. Ultimately they had to call in the anesthesiologist and thankfully her was able to get a line in. Whew!!!
Teryn was so sweet about the whole thing and didn't even fuss. Here is a picture of the sweet girl when she was finally able to get ready for sleep at 2am.

She was out in less that 5 minutes. The NICU nurse found out she was here and we have seen many of our old friends since being here. Teryn has her own little fan club and everyone was so excited to see her.

For a while after falling asleep the 02 monitor kept alarming because she was desatting. After watching what was going on we realized she was refluxing pretty bad and would hold her breath for a few seconds from the burn (remember she had to miss her med doses and didn't get her antacid.) She eventually leveled out and slept until 2pm Sunday afternoon. She is a 12 hour sleeper and she decided going to bed late was no reason not get get all of her sleep in. We will worry about getting her back on schedule when we get home.

Her surgeon came in around 7:30 Sunday morning and said he was working with radiology to try and replace just the j portion of her tube. He also said that ultimately he thinks she needs to have her original surgery revised because he thinks it may have loosened. Theoretically she should not be able to reflux because she had the fundoplication done. I told him I still feel like her stomach is not emptying properly because she cannot hold even a teaspoon (this is the amount of meds she gets) without it being forced back out. He agreed that there could possibly be an issue with her pyloric valve even though the ultrasound in Miami was normal. Ultimately he believes she needs these two surgical procedures so here is the plan for today (Monday)........We are waiting on radiology and they will attempt to replace her tube under x ray. If they are successful then she will resume feeds right away and we can go home within 24 hours. Then we will schedule a time with the surgeon that we want to do the surgery. If, however, radiology is not successful then we will schedule the surgery for tomorrow and skip trying to get the existing tube back in.

Of course I am heartbroken about another surgery and absolutely do not want for her to have to go through that again. However, if the surgery fixes what we need it to fix then there are some great advantages

1)no more reflux which will mean less need for suction and hopefully fewer ear infections

2) she will be able to receive food in her stomach and can go to feedings every 2-3 hours instead of having to be hooked up to the feeding pump 24 hours a day

3) we will have overcome the largest hurdle standing in the way to her learning how to feed by mouth

So we are just praying that God will direct this path for us. (Prov 3:6) "In ALL thy ways acknowledge him and he will direct your paths."

I know God is in control. He has Teryn is his hands always. He works all things together for the good for those who love Him. My Aunt carol who is a wonderful godly woman posted something on her FB today that was just perfect..."Because God is with us we need not fear what lies ahead." Thank you Aunt Carol for following the leading of the Lord so that I could receive this word today.

I am so thankful that my God is with me everyday including today when we are faced with some tough decisions. I will not fear what lies ahead because God has already seen tomorrow.

I will keep everyone posted as we find out for sure what the plan of action will be.

Here is mommy and Sweet T hanging out in our room yesterday.

Teryn loves Elmo and has an Elmo balloon that she loves to track. GG came by yesterday and brought her two talking Elmos and an elephant since elephants always made Daddy feel better when he was little. Teryn loves to look at the Elmos but isn't so sure about the noises yet. She also brought mommy an elephant necklace to wear for Teryn.

She has been in a pretty good mood except last night she cried from 9:30 until 12:30 because she was hungry. Today she is still sleeping pretty late.

*****Update.....radiology is unable to get her in today so we will have to wait another day.